Sunshine and Descent

Wrapping Up

2009-02-02T14:53:00.000-08:00

A brief recap. Dad moved into our home at the start of November 2005. He has Alzheimer's and has slowly and rapidly and slowly and rapidly declined over the past 3 plus years. Last July that decline became very pronounced and produced other physical conditions that required more care of a professional kind. My beloved bride and I have been visiting nursing homes in our area for the past three years in anticipation of the events of last July. Last August we found what we considered to be the ideal choice. It has multiple weekly chapel services, it is sponsored by an area fellowship of churches, it has a full time musical therapist and two assistants in that area, it has a wonderful reputation of long standing, it has the highest ratio of professional help per resident of any home in our area, etc, etc. The problem is that it is so good that it is hard to get in. We have waited not wanting what we considered second best. The home had said that it would probably be March or April before we could get him in.

That all changed quite suddenly last week with an unexpected opening. The prescreening was taken care of last week along with his doctor's visit. Today we placed Dad in the home. No, it wasn't really as antiseptic as that statement. There has been a week of second guessing all our decisions, turmoil and anxiety. But, it was necessary. As we went through each item on the check list today with the intake nurse, it became increasingly apparent how necessary how it had become. Dad felt very alone as we said goodbye to him. He is confused about what is going on and why. But, he doesn't have the processing skills in his mind to understand what is said, so no explanation is sufficient. He will be sitting at his new table tonight making new friends, who, in his condition will be new friends tomorrow and again the next day. Maybe it wil be an exciting time for him. I sure hope so.

Today was certainly an abrupt wrap up to everything that has taken place. Five years ago he called me and said, "come help. I just sold my house and don't know what to do." Every week for the next month and a half I traveled the 360 mile round trip to clean out his old house and find him a new apartment. We went from a nice fully stuffed 2 bedroom house with 2 car garage to a small apartment. Downsizing. Two years later he was declared medically incompetent and we moved him from that apartment to our house with his one room and a private bath. Downsizing. Today my brother came to help us move him into the home. (That was a great big help for Dad to see my brother and have him there.) Everything Dad needed for the home was placed on a single moving pallet. Downsizing. It reminds us of the biblical truth that we brought nothing into this world and shall take nothing out.

So, things are wrapped up. No more blog. Dad is in the care of competent and loving individuals who will do a better job than we could at this new stage in his life. His descent is now more marked, but the good news is - he has a great big picture window in his room that lets in a whole lot of sunshine. I hope it lights his spirits and his life as he continues the long goodbye.

I'll Be Home for Christmas (Maybe)

2008-12-31T16:23:00.000-08:00

It is the last day of 2008. It has not been a good year for Dad. Too say that he is in a frequent fog would be to put the case mildly. His forgetfulness has fully affected his long, mid and short term memory to a state of total impairment. He cannot repeat a simple statement without confusion. A case in point would be today when he came home and said that there was some kind of schedule problem at the adult day care. Of course, those aren't the words that he used, but I had it figured out since tomorrow is New Year's Day and the center is closed. I was expecting some kind of comment, so it was easier to figure out what he was trying to say. I said, "Yes, it is closed for New Year's Day, do you understand?" He just looked at me. I repeated myself more loudly as he might not have heard. The ear doctor said that he had no way of determining if Dad could hear or not since he could not give any appropriate responses. Anyway, with a louder statement and more slowly spoken, he just looked at me and said, "No." I said, "Repeat after me, New (pause) Year's (pause) Day." He just looked at me. We tried again. And again. And again. No, he could not get past the word "new". He just couldn't do it.

Yes, that brings us to Christmas. He didn't get that either. It was such a dramatic change from last year that it was astounding. As we built up to Christmas he said nothing. He made no comment about decorations. When we discussed Christmas he showed no comprehension of what it was. Last year he wanted to buy presents. This year he was without any understanding of the day. On Christmas Eve the center closed early. They had explained it to them, but he didn't get it. When he came home we explained it to him, but he didn't get it. We told him the center would be closed the next day, but he didn't get it. We went to Christmas Eve service at church. He didn't know why we were going or what it was about. After church we reminded him that there would be no bus in the morning. He wanted to know why. We explained that it was Christmas but he didn't understand. On Christmas day we opened our presents. He just sat there with his and kept looking at them over and over. (Yes, he opened them.) He was in a fog. He was home for Christmas, but only in his dream world, not in reality.

His routine is all that there is left. That has been messed with a lot lately. There was a snow day that closed down the center. Routine upset. He had a hard time with that. The next day my brother couldn't stay long as we were having another blizzard that afternoon. Routine upset. The next day church services were canceled because of the blizzard. Routine upset. The following week there was early closure of the center on Christmas Eve and no center on Christmas day. Routine upset. This week it is closed tomorrow. Routine upset. It is no longer an issue of not liking to go to the center. The center is his life, his routine. That is a quantum change from the beginning of this year when he still routinely complained about going because he didn't like it. All the big events that he could grasp at least a little are now ungraspable. His decline has accelerated from the "Bunny Slope" to the "Expert Slope" level. Since it was bad for him before, and he was confused before, it is worse for him now. Sometimes he looks like he knows that he is in a fog, that he can't grasp things said or thoughts thought. Then he looks weakly and sadly with a shrug and then it is all gone again. NO, it has not been a good year for Dad. He has dived faster and farther than the stock market. Next year he won't be home, not home here anyway, for Christmas. This is his last year here, but maybe he wasn't here already.

What next? Our top three choices for nursing homes told us two weeks ago that they had no planned openings until late March or April. That was an incredibly shocking bit of news and diminished our sunshine in this descent. We are committed to placing him in the best possible facility and not taking just any place to get him placed. We have no choice number four when it comes to homes. Unless there is an unexpected opening, we will have Dad for another 3 to 4 months. That is 3 to 4 months of his not really being here, but requiring much more care as a consequence. For Dad there is now only descent. For us, the weather seems to have turned a bit cloudy. We thank God that He is always behind the clouds casting his Sonshine. In the coming months, that will be our sunshine in this accelerating descent.

Little things and big things

2008-12-05T16:24:00.000-08:00

Years ago a good friend of mine was a second grade teacher. She told me that she hated weekly reader days. Since I always liked weekly reader, I wondered why she didn't. How many times can you hear and laugh at the same lame joke? she asked. Every student would read the joke page and then go to her desk and ask her the same riddle or tell the same joke. At first it was cute, but at the end of the day it had gone to the proverbial straw and the camel's back. Such a little thing became big, like Chinese water torture or the great science fair demonstration of how erosion works by placing a bar of soap below a slowly leaking faucet. Just a little thing, but the effects are enormous over time. Are they little things or big things?

Is it little or big? 1) Having to strap him into his seat in the car each time we go somewhere because he can't figure out the seat belt. 2) Hearing the same story at every meal about his grandparents and their 14 children and how they ate in shifts. (That is approximately 1000 supper meals where we have heard the same story.) 3) Seeing his unclean hair, dry shower stall and no wet towels why he swears he just took a shower and swears at you for doubting him. 4) Having him mumble incoherent syllables and then in a moment of clarity ask, "well, what do you think?" 5) Never washing his hands after he goes to the bathroom, which is usually just before dinner, and then holding his hand during prayer for the meal. 6) Rapping on the wall just before entering any room. 7) Standing in the most used passageway in the house indifferent to all the traffic trying to get by. 8) Arguing about the waste of soap and water when he is made to wash his hands before drying the dishes. (A note here, he insists on helping by drying the dishes after supper each night. He also insists on making a major production out of not needing to wash those still filthy hands.) 9) Those sudden unannounced appearances (the few times he doesn't announce his arrival with a rap on the wall) which almost always happen long after you think he is sound asleep in bed. (He can be quieter than a cat.) These appearances are almost always accompanied by the one word expression, "well?" 10) Getting his coat and hat on twenty to thirty minutes early each morning to wait for the bus in the hottest room in our house (the kitchen) and then sitting there for those twenty to thirty minutes saying, "I guess they forgot about me today." These 10 items are not prioritized, just listed. N0 big deal in and of themselves. Repeat daily ad infinitim nauseum. Throw in the big things and mix well until you would tell the national secrets to anyone who asked.

Are these little or big? 1) Grabbing toys away from 3 year old great grandchildren because you don't know what the toy is or why they have it. 2) Throwing one of those 3 year olds on the floor and twisting his arm to get one such toy. 3) Swearing at anyone who challenges such actions, or other actions he cannot otherwise explain. 4) Playing hide and seek with his dirty underwear which was dirtied by an accident which he swears (literally) he never has. (Somebody else in his room sure has a lot of them then.) 5) Lashing the dog to the lever on his recliner because he didn't want her to leave his room. 6) Trying to pick up but instead dropping his 1 year old great granddaughter and then swearing (literally) that he didn't and why is everyone upset. 7) Provoking the dog with constant teasing gestures until she nips at him. (So far so good. She is a good dog and does no harm, but she has gotten quite agitated at times.) Again, these are not prioritized, just listed. These happen with some frequency, but not daily like the others. Now blend them into the pot with general incoherence, confusion on what he is trying to say and you are trying desperately to figure out, the frustration that brings to both parties, and then mix in the final ingredients of paranoia and persectution complex which is often a by product of Alzheimer's disease and the stew is ready.

Oh, there is one final ingredient. This week the nursing home said they have no beds available for men and don't have any planned vacancies in the near future. A four month pre-registration time turns out to have been highly inadequate. We are so thankful for the services provided by community agencies like adult day care, home health aids, visiting nurses, quarterly social worker visits and of course caring friends like the one who comes weekly to play cribbage with Dad. My bride and I have had an opportunity on many of those cribbage days to take a walk and relax for a half hour. Wonderful. These people are the icing on the cake that hides all the lumps of the cake batter. The candles on the cake are our daughters who take time from their busy schedules and watch him when we absolutely have to get something done and he is not at adult day care. There is my brother who comes once a week and takes Dad out to supper. One meal without the story of 14 grandchildren is more of a treat than many would realize. It does take a village to care for an Alzheimer's patient. The village is the sunshine in the descent.

Real Joe and the Conversation to Nowhere

2008-11-08T18:15:00.000-08:00

What a marvelous week! No, Dad has not been accepted into the home yet. No, we didn't strike gold in the back yard. Something much more prosaic. When Dad moved into our home three years ago he was an unhappy camper. He couldn't drive anymore or handle his own money. There seemed very little, in fact, that he had control over in his life. His response (other than terrible 0utbursts of anger and a generally venomous attitude) was to grow a beard. He could control his face, and he did. It has been an ugly beard for 3 years. The grand kids had a look alike contest and he was voted most to look like Fidel Castro. A year and a half ago my beloved bride found a new barber to take him to and that made some improvement. That barber, against Dad's wishes, trimmed the beard at each haircut. "I'm never going back to him," he would fume each time, but since my bride was driving, he did go back and get a nice trim each time. It was a small improvement in an ugly beard, but it was an improvement. This week as he was getting his shower by the home health aide, she shaved him. WOW!!! The real Joe reappeared. My beloved bride had purchased him a whole new set of clothes, multiple shirts, sweaters, pants, etc. She tossed the old stuff he has been clinging to for the past three years. Now he looks spiffy. Marvelous! Oh, and while he is still demented, he doesn't look so demented anymore. He looks like a clean, neat and healthy 80 something man. Marvelous.

Outward appearances aside, he still has dementia and what is inside has not changed. Tonight my brother was over and they played cards together for 2 hours then my brother took Dad out to eat. That is the weekly routine. When they got home my brother had some pictures to show us of his grand kids. (Almost as cute as mine.) We stood around talking for about 40 minutes and the conversation took many twists and changed absolute directions multiple times. Dad was standing there listening, to use the term very loosely, and smiling at things that were said. That would be the normal interpretation of what was happening, but it wasn't really happening. What Dad was smiling about is anybody's guess.

After a few minutes he broke into the conversation with a question about our last name. No, we were not talking about anything like that at all. Since his original question had made no sense, I said, "What?" He asked again and I picked up what he was asking and answered him. The conversation with my brother and bride and myself went on. Five minutes later Dad again broke into the conversation with another question about our last name. Again, the question was unclear and after a "what" he asked again and again I answered him as the other conversation went on. Skip ahead five more minutes and it happened again. This time he was recalling a trip he had made to Europe and how he had found our last name in the phone book. Another unclear question and clarification and answer followed. All this time he is seemingly following our conversation, but he hasn't heard or understood a word. Not one. This went on until my brother left. It was the conversation to nowhere from nowhere in the midst of a completely different and ongoing conversation that lasted 4o minutes. He is now all bright on the outside, but the inside is still dimming rapidly. The outside this week is sunshine, marvelous sunshine. The inside is descent; the bulb dimming more every day. But he looks good. Marvelous!

Anniversary

2008-10-27T14:42:00.001-07:00

Here it is. Three years ago this week, Halloween day, it all began. Who would have thought what that day would bring. I took my brother to see Dad to go to a scheduled doctor's appointment, one that I had let Dad know about in advance. When we got there he had no idea why we were there or why he was going to the doctor. After a pleasant lunch together at his favorite restaurant, we went to the appointment. Who would have guessed the outcome.

I knew that Dad has Alzheimer's disease. My bride and I had done a lot of study on it over the past 2 years since Dad had called up and told me he had unexpectedly sold his house. Reading about it is one thing. Experiencing it is another. A person can read about war, but unless they have been there, it is only a partial reality. The sights, the sounds, the smells of each encounter, the racing of the heart, the fear, the relief are only half real from literature or the movies. I have come to realize that watching Hogan's Heroes is about as good at preparing someone for prison camp as reading an Alzheimer's book is at preparing someone to take care of an Alzheimer's patient. There is nothing quite like reality.

That was three years ago. Dad is still with us. The original expectation was the he would live in his own rented apartment near us and we would look in on him two or three times a week as needed. We had quickly found an appropriate apartment complex and had the rental forms ready within a week of his arrival. By that time, though, we were getting the first glimmers that reality was not going to match expectation. It was going to be three weeks before he could get into his new apartment and by then it was crystal clear he could never again live on his own. Agenda change. Two months later I sat down with my siblings and asked their ideas. Their ideas were quite clear. Possession is 90% of the law and I already had him, I could keep him. The anticipation was that he would be in a home in less than six months and if there was any money left in his account after I had paid all his overdue bills, I could take my bride out for dinner. Reality check. Agenda change.

Three months ago my bride and I came to the realization that after 2 years and 9 months with us, with rapidly declining overall health and sharp decline in mental acuity, it was time to place Dad in a home. We planned to have all arrangements made and have him placed within three months. Reality check. Agenda change. Dad is still here. Actually he has been a bit more lucid this past week than in the past month. These episodes happen. Alzheimer's is not a straight line from clear to incoherent. A stage that could last for 6 months can also, we have learned, last for 16 months. Within that stage there can be ups and downs that reflect the previous one or more stages and periods that reflect the coming stage or stages. It is not a straight line. Reality check. When I talked with my siblings three years ago, we didn't know that. While they had not read up on the disease, they took my word for it and my word came from the literature which hadn't exactly explained all of it. Reality check.

So here we are. 3 years later and light years wiser. We have no idea what to expect tomorrow so we go with the flow today. That is the reality. Dad is here and we work to make sure that each of his todays, which he can't remember tomorrow, are as satisfactory as we can make them. Happy anniversary. I don't think we will throw a party.

Oh NO! Not again!

2008-10-09T21:12:00.001-07:00

Wow! It has been almost a month since my last post. Who knew? Not me. I think of things to say almost daily. Interesting things happen about that often. But, I guess I don't write them here because it has been a month.

Well, Dad had a new battery put in his pacemaker. My bride was with him all day at the hospital from 6am to 5pm. Having Dad wouldn't be possible without her. Someone has to go out into the wicked old world and earn our keep. Actually, I think it is the easier job to watching Dad. What made the event so interesting was that there was really SOMETHING in the meds they gave him to do the surgery. When he came out of surgery he was more alert than at any time in the past 3 months. That may have something to do with the fact that his blood pressure shot back up to 179 over 110. While that sounds absolutely terrible to me, the doctor seemed unconcerned. Then again it may not have had anything to do with his blood pressure and only with the meds. Anyway he was alert, very, very alert. He was volatile and angry and argumentative just like 2 years ago. It was unpleasant to take that trip down memory lane.

The first thought I had was, "Oh, no!! If he stays like this he will fight us tooth and nail when it comes time to go into a home." No, I didn't think about keeping him longer. His relapse was harder on us than his recent decline. We have put up with such abuse from him in the past when we still had some stamina left. That kind of abuse now when our stamina is all gone was a little over the top. NO, A lot over the top. No, he wasn't better or getting better. He has Alzheimer's disease and won't get better. But if the spike in alertness lasted we would be facing some really challenging days and bigger decisions about his care. Would we keep him longer to postpone the fight over a nursing home? We would both have mental breakdowns before the weekend was over? Would we place him in a home sooner, any home, to stave off that breakdown? Yes, the line is now very taut. I wanted to give him to my brother for his birthday, I really, really did, but he said he wouldn't take him anyway, so that was out. What to do about Dad?

Good news, the meds or whatever wore off in two days. He no longer remembers being in the hospital. He is back to near incoherence. He is back to placidity. The rope is a little less taut and we can breathe. I assure everyone who is on the sidelines wondering about my attitude that unless they have lived in the same house for 3 years with an Alzheimer's patient who has run the gamut from violently abusive to babblingly repetitious, they had better not make a comment or judgment at all. To anyone who thinks we should just dig deeper for more strenght, please take him for a month while my bride and I try to find where deeper is?

What about the nursing home wait? We are still waiting. Right now it doesn't seem he will make it there by the first of November. That was supposed to be a birthday gift to my bride. Anyway, with that realization in mind we are ready to stay the course as long at it requires. There must be strength there somewhere. My bride and I have talked about it and that is just the way things are and that is just how life is. Thank God there is a God, and He will be with us through this today, tomorrow and as long as it takes. That is our sunhine in Dad's descent.

Waiting

2008-09-11T21:05:00.000-07:00

Now that Dad has officially been placed on the list for a local nursing home, the wait begins. There are a whole lot of nursing homes in our county. We visited all but one of them. The one we didn't visit had no one give me even a small recommendation of its quality. We had tours, talked with nursing directors, got papers, went on line to the official government web site for nursing homes and prayed and looked some more. We are happy with our decision, but it may be a while before we realize it.

This summer was a horrible one in our area weather wise. It began in May with a huge tornado that killed eight people and destroyed hundreds of homes and damaged hundreds more to a great extent. Our area is populated by elderly people. Many of them lived in these homes. Their children would come in multiple times a week to check on mom and dad and take general care of them. Now there are no homes for mom and dad to live in. The children cannot take them into their own homes. The result is that nursing homes were suddenly inundated with new residents. That was round one. Three weeks later a 500 year flood hit our area. The water rose and rose and rose. It was 3 blocks from our house and we live on a hill seven blocks from the river. The storm drains on our block were starting to back up and put water into our street. Hundreds of homes in our city were hit hard. Again, we are an older area and the same as with the tornado, seniors who were barely managing in their homes with the help of their children were displaced into nursing homes. Because they were seniors in need of assistance anyway, it is unlikely that any of them will be rebuilding their homes and returning there. Nursing homes in our area are stuffed.

We are on the waiting list. How long? Dad needs nursing home care. It is apparent every day. We have been providing him nursing home level care for 3 years. The toll is starting to show. How long? We have added a home health aide to the mix of his care. She comes twice weekly to bathe him. The visiting nurse now comes twice monthly instead of once monthly. How long? It is possible that he has had one or more TIA's (small strokes) this summer, but that is difficult to determine. It is common at his level of need to have them and there are some signs that he has. How long? He is increasingly confused and communication is less clear. He can process almost nothing which is said to him anymore. How long? We have committed to taking care of him as long as it takes. We are also hoping that it isn't that much longer. Our goal was to have him placed by November 1. That is still our goal. How long? The whole situation has racheted up the stress level. It is beginning to be our descent, not just his. How long? As long as it takes. That is the way it is with family. We will be there to be the sunshine in his descent as long at it takes. (But hopefully, it will be by November 1.) :)

The Decision

2008-08-24T20:28:00.000-07:00

Dad has now been with us just a little less than 3 years. To put that in perspective, that has been the graduation from high school of one child, college of 2 children and myself (my masters), the birth of 2 grandchildren, a third was born a week before he came, the marriage of two children, the changing of my primary employment, the death of our long time family dog (15 years) and the arrival of our newest family member (now a year and a half ago - Molly the dog). There has not been a shortage of things going on in our lives. Upheaval can be best used to describe our lives over the past 34 months. During these normally stressful events we have made adjustments to Dad's disease as he has progressed from late stage 4 to mid-stage 6 Alzheimer's.

The first adjustment was to having him here. The second was to him not wanting to be here. He was always, and I don't mean usually, very nasty to me in particular, tantrums, swearing, arguing, any means of expressing his disapproval of the new situation. I could wake up in the morning with the clear expectation of more verbal abuse. There was the adjustment to me being the parent of a not so cooperative 81 year old man and making decisions for which there had been no progressive preparation. We had to find him activities outside our home for both his and our survival. We had to fight with him to go to these activities until they became a habit, only to have that habit broken as we took some respite and have to start all over again.

Adjustments, adjustments, adjustments. I could have been a chiropractor. At each skill level change we made adjustments. As each mental acuity level changed we had to make adjustments. He cannot adjust. The care giver adjusts. As he began to communicate differently we adjusted to keep communication open. As his perceptions abruptly changed, we adjusted to keep within the scope of "his reality". For a while it seemed to be the "reality du jour". Any expectations of him changed into adjustments for us. All the while our own life adjusted around us in a myriad of swirling changes demanding our attention. At the end of six months we were exhausted. At the end of three years - well, I can't even describe how we are.

As recorded earlier Dad's health changed on my birthday. That is now a month and a half ago and he still daily says, "I don't feel well." He has been to the doctor, the hospital, seen the visiting nurse multiple times and in every case been declared "Healthy and fine." Still the mantra is, "I don't feel well." "I don't feel well," can mean, "I am not going to church today", "I am not going to adult day care today," or "I am not going to do anything at all but sit here in my chair and die." My lovely bride has been pushed past her capacity to care for him for the past 3 years and now the very limited activities which she is allowed during his time at adult day care are jeopardized by, "I don't feel well." She never, ever, has complained. She hasn't complained now. But the extra stress is visible. The time has come. The decision has been made. We have been adjusted to the limit. Another adjustment would cause breakage.

Tomorrow we have our final visit to a nursing home. We have examined homes for the past 3 years knowing that the final time would come. We had no idea how we would know when that time had come, but we knew it eventually would. Last week I said to my bride, "The time has come." She smiled, "I thought that a week ago." She had never said a word. There was no one final major issue. There was no line in the sand that was crossed. All of our wondering how we would know was simply summed up in the one sentence. "I know it is time." We have no guilt. We know it is time. The time may take 2 more months. Now that we know, we have to wait for an opening. But, the peace of knowing will be an enablement for the duration. We can say without any hesitation any longer that he will be better off in a home. He will have new people to talk to, to share his limited repertoire of stories with. He will have 24 hour nursing care when he doesn't feel well. (He has always been a terrible hypochondriac - this should be great.) We finally see someone else being able to provide his care and do it better than we can. It will be a new sunshine in his descent. And, it will be some sunshine for us before we collapse under the weight of his descent. There is a time for every purpose under heaven. It is time.

Weathering the Storms

2008-08-02T20:38:00.000-07:00

Wow! It's been over a month. That is not exactly because nothing has been happening. I lead this exciting secret double life. Caregiver by evening and doubly employed during the day. If it weren't for my bride, care for Dad would be scarce. Kudos to her for all her hard labor. She is the daily sunshine in his descent. A lot to do in both jobs this summer plus care giving is one of the storms we have had. That is largely our storm, though, and not his.

This summer has seen a great decline in Dad. People at church have noticed it. The visiting nurse has noticed it. Family members have noticed it. Other friends have noticed it. Oh, he does have those amazing days when he is seemingly "all there", but they are like a streak of lightning in a dark night. Lots of momentary dazzle and then greater darkness than before.

The decline here is the mental decline, the lack of ability to perceive his surroundings, communicate, care about his appearance, interact meaningfully, and all that goes with mental decline. What remains is the persistence about getting married to his girl friend, his deep memories of childhood and family, his delight in seeing the great grandchildren come over. He does really enjoy that.

There has been another decline. This has been physical. On my birthday in mid-July he complained of feeling "not well". That is a little vague, but he is a little vague. Sometimes he felt a little dizzy. Others a "bit off in his mind." (I couldn't have agreed with him more!) Then he would feel great again. The spells came and went so fast that I had no clue what to do. Both my brother and sister were here for the day and were equally baffled about a solution. The next day he wouldn't go to church. Kudos here again for my bride. She took him to the emergency room while I took care of responsibilities at church. The emergency room doctor declared him fine, though Dad was outraged that the "_________ dumb doctor couldn't find out why I am sick." He was up and down in his feelings for several days. We took him to the doctor and had the visiting nurse see him twice that week. It is his blood pressure. It is perfectly normal after having been marginally high for years. He feels light headed because he is healthy. Go figure. That was a rather big storm because he couldn't communicate exactly the problem, could not understand at all the doctors' comments, could not remember having seen the doctor and could not accept what we told him about how he was OK. He still feels a little off and we don't know if it is legit or not. Is it serious. Has something else come up in his body. The physical questions are starting to eclipse the mental ones.

Upshot? Recommendations are now coming in from friends, church members (who, of course, are also friends), family and health care providers that it is time to put him in a home. Wow! This is a storm of a different kind. Are they all right? Are we being stubborn in keeping him here? Do we have a better understanding than everyone else? When he first came some people who supervise my work were adamant that I should put him in a home then. They were afraid and have remained afraid that my work would suffer from fulfilling a true family obligation. Their attitude rather inured me from listening to advice from people with other agendas. Then it inured me from listening to advice from people critical to having him in our home period. After a time, perhaps, I have come to the place where I have lost the ability to take another's legitimate perspective on what is best for both us and him. I can hear my supervisors' haughty voices saying, "See we told you this two and a half years ago." I can also hear the comments of others, "Oh, now that it is getting difficult you want to cut and run!! Humph!!" Caught in the middle. Well, I am a tweener. It started as being between the generation still living at home with us (now all married and gone) and having an older generation move in. Now it seems to be between a rock and a hard place in making critical decisions. That is the storm. Dad is oblivious to it as he is now oblivious to most things. It is by all accounts, my call. The weather seems a little rocky with more storms ahead. Stay tuned.

My Least Favorite Question

2008-06-25T14:36:00.001-07:00

How's your dad? That is my least favorite question. It always implies in my mind that the asker doesn't know anything about Dad or his disease. Since the answer can never be "better" there are few other options for an answer. He could be the same, but even that is technically not true. He is simply declining. That is the answer, "Declining". How tough can it be for people to figure out that answer? A better question would be, "How does your dad think he is today?" Healed, fine, ready to get a job, ready to get married to a lady whose name he doesn't even know. How does he think he is today? No where close to how he is. He is daily less articulate. He is daily less able to process a conversation of even a few words loudly and slowly spoken.

He is basically stuck in a rut of two avenues of monologue. There is no real dialogue, just his own rambling monologue begun at random and ending at random. He either talks about when he was a boy his grandparents had 14 children and they all got together every Sunday. That avenue is almost daily. When our son in law comes to visit the conversation goes to the war. He does remember, amazingly since he doesn't remember anything else that has happened in the past 20 years, that our son in law is in the service. Therefore, when he shows up the avenue automatically shifts to when he was in the war. Since our son in law usually shows up at mealtime, the avenue of thought is simple. In the war we had good food.

The other day a friend who has come weekly for 2 years to play cards with Dad every Tuesday came to play cards. Dad looked at him without recognition. When I told Dad that he should go get his cards he just stared at me. He was absolutely lost. Finally I went and got his cards because he never processed the simple sentence, "Go get your cards." Four one syllable words. Repeated several times with good volume. He just stared. Yesterday was Tuesday. His friend was here again. After he left I asked Dad who had won? He just stared. I repeated more slowly, "who won the card game?" He just stared. Then he started rambling about something that happened at day care center. He was incoherent so I don't know what he was trying to say. The center was the only piece I picked up. I asked him again, "Who won the card game?" What card game? he wondered with a mutter. "The card game you have been playing at this table." He just stared. The good news was that after the question was repeated one more time, he answered, "He did."

Why is it like this? I think there are thoughts in his mind that he is trying to grab. He can't snatch them from his own mind to speak them clearly. While he is trying to snatch those thoughts from his mind, he can't process at all any other input. His mind is working to get at something that he cannot retrieve. In the process it shuts off all other sensory input. The ears don't hear because the mind is elsewhere. As a result he is becoming increasingly closed off from both himself and others. One bit of good news to conclude. His sister who also suffers from Alzheimer's is finally getting some care. Her caregivers have not been providing any at all for the past 2 or more years. Someone turned them in to DHS. Now they are starting to do something for her. One thing has been to take her to the same adult day care center that Dad attends. She has been there the past 2 days. I hope they keep it up. She needs it (she is at least as far along in the disease as Dad) and he is brightened by her presence.

It shows more and more

2008-06-01T19:34:00.000-07:00

It has been a while, but not for lack of news. In May I received an advanced degree and took my bride on a nice trip to receive the degree at the ceremony. (If I pay for it and work for it, I'm showing up to get it.) My brother kindly took a week plus off of work to stay with Dad. That had not been the original plan, but we have to be flexible. He was supposed to stay in a respite care facility for 10 days while we were gone. Then it was upped to 14 days (not because we were gone that long, just because there was a minimal stay.) Then it was upped to 30 day minimum stay and that seemed like too much. After talking it over with my brother and agreeing that he would never be able to come home after such a long stay, my brother said he would stay with him for the 9 days we were gone. With that resolved we left on the most wonderful vacation we have had in years!

In the days leading up to the trip Dad would ask repeatedly if he could go along. We assured him he would have a better time here than with us. How very very true. We hiked 4 or more miles daily at planned hiking stops along the way. We drove with the windows down and sucked in the beautiful honeysuckle filled southern air. He hates to have the windows down. We could talk to each other and understand the conversation. That was rare. Oh, what a wonderful time alone!! And he did have a good time with his other son. They played cards and went places in the afternoon after adult day care. I am sure he was overjoyed each day to have us gone. But, before the trip when he was asking to go along he was always talking about how proud he was of my graduation. He told people at church. He would beam.

The day after we arrived home we had the pictures of our trip developed. Yes, we still live in the technological stone age. When we brought them home we showed them to Dad. He looked at the graduation pictures and asked, "when did you do that?" I told him, "just last week." "well, I never knew anything about it," he said with chagrin. When I was showing the pictures to some friends two days later, he was captivated by them. He had never seen them before.

That is what we noticed most of all. We have lived with him 24/7 for 2 and 1/2 years. We have grown used to his decline to the point that it often seems normal behavior. We have never had this kind of opportunity to step back and see what is going on. WOW!! His decline was so much more noticeable to us upon our return. I know that I often comment on his decline and how much we notice it. But the truth is that we hadn't noticed the half of it. Perhaps we had even been caught up in some aspects of denial about the real nature of his condition. I don't see a real relevant practical application to this new perspective, but it is eye opening to the degree that it has taken place. The upside, and there is one, is that he had a good time. He may not remember my brother having been here for 9 days, or he may. Choose the moment to ask and take your options from the above choices or others that Dad may create and you will have your answer. Whether he remembers or not, however, is not relevant. At the time my brother was here, Dad was having the time of his life - moment by moment. That is his sunshine in his decline.

Miscellany

2008-05-08T21:00:00.000-07:00

I used to blog weekly. Things used to happen weekly. New things. Often depressing things. Sad things. Angry things. I don't miss sad, angry depressing things at all. Something occasionally new, however, would be a nice break. That means that things are pretty much routine. He talks about marrying his girlfriend every now and then. Sometimes more than others. Some weeks hardly at all. It is almost like he has forgotten her. Then, wham, he talks about it daily. Last week he wanted to drive again. This week he wanted to get a job. Hurray! When he couldn't do either, and I didn't tell him he couldn't, I just ignored his comments, he forgot about them almost immediately and there was no lingering anger. But the comments were nothing new. Even the lack of anger is not new anymore. His emotions are quite flat.

He told me yesterday about wanting to marry his girlfriend. He said that I should meet her. I told him that I have met her. He said that he had wished that he were there when I met her. I told him that he had been there when I met her. He said, oh, I don't remember that. End of conversation. This week he wanted to clean the porch. He did a good job. He hasn't shown much initiative lately, so this was something almost new. He used to ask to clean the porch frequently. So, it was something he has done but has shown almost no interest in doing again. Then he wanted to. We might call his current condition a hiccup in his overall decline. He is having a slightly brighter spell after a long decline. Two years ago when these episodes occurred I thought the doctors might have been wrong in their initial assessment. Now I know that hiccups happen.

It is sometimes like a daily "Flowers for Algernon" scenario. It is still strange however to see him barely function for days or weeks and then act like a nearly normal eighty-something for a few days and then revert to struggling to speak, think and respond. I think that I have come to hate hiccups. They seem more emotionally traumatizing to him than the process of decline. When he is clear he wants things that he cannot have. When he is in noticeable decline he doesn't usually want things, except to marry his girlfriend. When he is clear he wants to know why he can't. When he isn't clear he just accepts that it will have to wait a little longer to take place. There are days when I don't know who is having the slower death, the patient or the caregiver. The long goodbye is very long. In this regard there is no real sunshine in the descent.

Under the weather, Joe

2008-04-19T17:04:00.000-07:00

Shortly after our last blog, Dad got a cold. Colds don't go away as fast at 84 as for younger people. Colds are not as well understood by an Alzheimer's patient as by a person who fully knows what is going on. Bottom line, he will live and he has that figured out now. We took him to the doctor who assured him it was just a cold. That, of course, was relatively pointless because he never hears or understands anything the doctor says. The doctor did give him some pills and that made him happy. Going to the doctor also served a second purpose. Dad had refused to go to the adult care center for the day and would have continued to refuse going until he "died". But we could tell him, and did tell him, that the doctor assured him it was just a cold and he was well enough to go. That meant that he missed only one day. Two or three days would have been catastrophic.

It has now been 2 1/2 years that he has lived with us. When he came he was in late stage 4. There are 7 stages. The Alzheimer's guide said that he should move from there to stage 6 in 6 to 18 months. At the end of March we took inventory of his progress. He now has a check by all the signs of stage 5 and is starting into stage 6. Both his short and long term memories are now impaired. He is becoming incontinent. His speech lacks much more focus than before and he can not carry on a conversation that one would consider a conversation. He is increasingly opposed to cleanliness and we have to devise ways to make him even wash his hands. He does get into the shower, but he doesn't really wash. I had to put him into the shower a few weeks ago and he has been more cooperative about at least getting in since. Leading him to the bathroom and getting him to undress and get into the shower was an experience I don't want to repeat. That is a step that will only increase in necessity in the future. All his skills are slowing down which means that he is nearing the tipping point of needing professional nursing care.

Yesterday I took my bride to see her dad. He is 82 and lives a few hours away. We had a wonderful day visiting and talking over a variety of things. It was sooooooooooo refreshing to carry on a real conversation. I had almost forgotten that parents could be so clear, rational and conversant. Her dad is a snow bird so we haven't seen him since late October. He just returned from fun in the sun. What a difference between a healthy older brain and a brain afflicted with Alzheimer's. That, in a nutshell, is the difference between the sunshine and the descent.

The Underwear Inventory

2008-03-30T17:42:00.000-07:00

If it weren't for my lovely bride, Dad would be in a home. That isn't just true of now. Taking care of an Alzheimer's patient is not routine work. The things that she does take a lot of time, energy and patience. At the outset, when Dad first moved in, we had gone over a list of things that if he did them, he would have to go to a home. How little did we know then what love and care really meant. While it isn't that I don't have a fair number of responsibilities with my dad, my bride has and does the lion's share of the care. As the disease progresses, so does the load.

One thing that plagues my dad is bowel accidents. Now, they are nobody's favorite topic or event, but they are a frequent part of Dad's life. When he came to live with us 2 1/2 years ago, they were part of his life then, but not to any extent what they are today. It is not uncommon to have an accident 4 or 5 times a week. It is how he deals with them that creates the topic of this blog. When he has an accident in the middle of the night, he goes to his bathroom and rinses out his dirty underwear. (No, he doesn't shower himself, just rinses his underwear and maybe rinses himself as well.) Then he returns his underwear to his room where he hangs them somewhere, wherever he may choose at the time, to dry. A couple of hours later he will wake up again and take the damp underwear down and hide them.

He might stick them in his underwear drawer with the clean ones. He might hide them in the spare bottom drawer of his dresser. He might hide them in the bathroom cabinet. He might hide them under his TV. He might hide them under the cover on the back of his computer chair. I know that he might hide them in all of those places because he has. The next morning he will bring to the laundry room his dirty t-shirt and socks from the previous day. Then my bride has to pay careful attention to the wash. Where, oh where, are the underpants? She has to take an inventory of his dirty clothes daily. If the underwear is not there, she has to go find them. Some days it is easy. The bottom drawer had been his favorite place, but he is getting more creative. Last week she had to search for almost 3 hours to find them. She almost came to the conclusion that he had worn two pairs that day, but she persisted because the smell told her that he had a dirty pair somewhere.

Yes, the smell. Accidents produce that. They produce dirty bed linens also which increases her wash load daily. Besides the smell, however, is the challenge of finding which pair is dirty if he puts them back into the clean underwear drawer. That is accomplished by having to have an underwear inventory. She knows which pair he wears everyday so she can tell which pair he wore yesterday. That is a job that requires a lot of love. I am a lucky man! It also, though, requires from her a lot of time, the biggest commodity required for caregivers of an Alzheimer's patient. No, we can't get him to change what he does and just put his dirty undies in a basket. He vehemently denies that he has ever had an accident or that if he, that he would do such a thing as to hide the underwear. That is his reality. Being the queen of underwear inventory is the reality for my bride. That might not be the sunshine, but it is the reality of descent with Alzheimer's disease.

Birthday Boy

2008-03-18T09:31:00.000-07:00

Hello, again. It has been quite a while since I have blogged. Mea culpa. Just a brief note before I begin. Someday I will learn how to edit my own bio on the side panel, but until then I will just make a note about changes in it. My bride and I no longer have a child at home. She has graduated and been married. We also now have 4 grandchildren. Does that make us a double 'tween generation. We see our children several times a week and two of our grandchildren also several times a week. (2 of them sadly live too far away.) Our home remains the focal family point for 4 generations. Our youngest son is getting married in 3 months so we will add a new daughter-in-law to the mix. In addition to family my employment status has changed since my last blog. I have taken on a new title at work with the requisite amount of new work to go along with it. I also changed titles as my other job, but that didn't increase the work load but actually gave me a slightly lighter load.

Last week it was Dad's birthday. He was 81 when he came to us. Now he is 84. Reflecting on that is rather overwhelming. We never thought he would even be here 6 months. Then we stretched it to a year. Wow! Time has flown! His memory has failed increasingly in that time. He has forgotten that he has a wife in a nursing home and still plans to marry his new sweetheart at the adult day care center. He has been talking about that now for 7 months but has forgotten that as well. He still tells us that he only met her there a few weeks ago, about 3 or 4 he will say. He still gets angry occasionally about having to go to the center, but his anger dissipates rapidly unlike when he first came and could hang on to it for days on end. His sister, who also suffers from Alzheimer's, is going into a nursing home soon. I suggested that he might like to go there and live with her, but that upset him a lot, so that is on hold for now.

We had a big party for him on his birthday. There were 12 people here staggered out over a period of time so that he wouldn't be too overwhelmed at once. He talked about that for a few days. He kept saying how much he really enjoyed it. Based on recent experience with his memory we didn't know if he would remember it the next morning, but he did, and the day after that as well. He still doesn't know my bride's name, though. Nor does he remember most people's names, family or otherwise. We never know what he will or won't retain from moment to moment. He got a call for his birthday. When I asked how he liked talking to that person, he said, "I had no idea who it was, but it was nice to talk." A friend came by and gave him a card. This friend sees him weekly. We have called this friend by name for 2 years and put his name on the daily activity board whenever he is coming. He looked at the card, just given to him, saw the name and asked, "Who is _____?" For all that he will pick up a conversation he started yesterday and continue it from where he left off. Of course, we have no idea what he is talking about for a while, and by then he has forgotten what he said. If he says something that we can't understand or follow and we ask him what he just said, overwhelmingly he has no idea. But, he remembered the party and he remembered who came. We are just glad that we could create for him a moment of joy that had a little adhesive on the back.

Decline

2008-01-26T17:32:00.000-08:00

That is the key word in Dad's life these days. Some days it is almost a notable decline from the day before. All the problems of the past are magnified, except, thankfully, his anger. Confusion about what is going on is more noticeable. Understanding of what is being said is a constant. Conversation with him is nearly impossible. Oh, he has a good day and has up moments once in a while, but it is the exception not the rule. His speech is increasingly slurred and he more often than not starts his conversations in the middle and has no idea what the start was. He has virtually stopped responding to my bride at all. Is it a hearing problem or a perception problem? Both and inseparable. Analyzing it is difficult because of it being perceptional. He cannot process what is being asked of him so it is difficult to assess what he is hearing and what he is missing. A question, even one asked loudly, is lost in his mind. He responds in part and that part is usually far from the direction the question was going. He didn't understand. He didn't process the words going in in the order they were asked nor in the way they were construed. It is a repeated supper time ritual for me to look at my bride and ask if she understood anything of what he has just said so that we can make a comment. It is consistent, no she hasn't understood it either.

For all that he is happy. He still has his "girl friend". He still plans to marry her soon. Soon is a very relative term. Each day soon is as far away as yesterday and as close as soon can be. He talks about her less than he did, unless of course he is mumbling something about her that we haven't understood or loudly and clearly stated a random thought about her that had neither beginning or end to its point. Therefore he may be talking about her and we don't know it. But, he is happy. He looks forward to the days his great grandson comes to visit. That is a point on which he can talk with some clarity for some time after the visit. As to his newest great granddaughter he is virtually indifferent. I have never really heard him mention her at all unless she is right in the room. He does remember that my brother has grandchildren. If he wins something at bingo at the adult day care he will bring home toys for the grandchildren, but not the new granddaughter.

While losing more control of his mind he is also losing more control of his body. That is something that seems to cause him embarrassment. That is good in a way. It shows he still has certain areas of awareness. It is bad, too. He cannot help it and he knows it. But, he is happy. That has to be my mantra because it is the sole thing to hold on to in these days of swifter decline. How fast everything will accelerate is still a fool's best guess. He could reach a plateau as he has in the past and stay there for months or more. He could slip and fall and be bedridden for a week and forget how to walk and be in a nursing home and into end stage Alzheimer's in a week. He doesn't know any of this, and he is happy. He is his own sunshine in his descent.

Miscellany from a wandering mind

2007-12-25T16:36:00.000-08:00

This has been a busy month. Christmas alone can make a busy month, but we added the wedding of our daughter into the mix and ramped up busy by quite a bit. How does that effect the mind and life of the Alzheimer's patient? Surprisingly, it hasn't been as hard on him as I expected.

Dad's mind is in its own little world. He is more involved in his fantasies than in the realities around him. That helps to insulate him from the stresses and rush of activity. He never forgot that our daughter's wedding was in December. He might be fuzzy on the day sometimes, but he is fuzzy on a lot of days. He looked forward to attending the wedding and seemed to have a wonderful time while there. He has been a showman, and the attention given to him as the grandfather of the bride suited him fine.

Christmas? He forgot it was Christmas on Christmas. On Christmas morning he was up early and had his coat on to go to daycare. We had assured him the night before that he could sleep in because the center wouldn't be open the next day, but that made no impact. He had looked forward to Christmas, though, and enjoyed the day.

The crowds? Here was a big surprise. He has generally avoided lots of family activities because it is too chaotic for him. This past week has been a big exception. When we got home from the wedding rehearsal dinner he was trying to teach our son-in-law how to play cribbage. Dad was too tired to get anything straight. He counted wrong, counted out of turn, forgot cribs and generally should have been in bed. It was almost two hours later than he would normally be up. He was like a 3 year old who didn't want to miss any of the action. The night after the wedding we were playing a high speed game "Catch Phrase". He had been in his room since supper but came upstairs and sat down. When the phrase was passed by him to the next person he got quite upset. So, the next round the person passed it to him. Dad can read, but he doesn't know what he is reading. His phrase was "white chocolate" and he started in on some rambling story about going down the Ohio river in a steamboat and how that connected to another river and on and on. It was not some personal story about what had happened to him, just a rambling story. On no word or phrase that he saw could he tell what the phrase was. He just continued his rambling story about steamboats. No one expected him to understand the game, but his inability to identify a word by its letters shows decline. In all, though, he had a good time playing and stayed at it until the game broke up. Later that night he came upstairs again and wanted to know if anything else was going on that he could be part of.

His lady friend? He still plans on marrying her. He has agreed to wait two years for her to become a citizen, but he forgets that daily or expects two years to be up by this summer. His stories about her continue to evolve daily. Some days she is married but her husband is still in the old country and doesn't want her anymore. Some days she is single and ready to get married right away. Some days he is very honest and admits that she never talks to him because she knows no English, but he is determined on those days to teach it to her. He even takes a notebook to the center with necessary words - ears, eyes, nose, spoon. In all of it, though, he is still convinced, even on the days that she can't speak English, that she is talking to him and is eager to get married. It has been interesting to watch it all unfold. The best news about it is that he is still happy, he has some sunshine in his descent.

Getting Serious

2007-12-07T17:35:00.000-08:00

Well, Dad weathered Thanksgiving fairly well. We had a houseful of people and he interacted a little an spent a lot of time in his room. All in all he seemed to have a good time even if he was overwhelmed by it all.

It is the other part of his social life that is heating up. His "girlfriend" is his number one daily topic. He brought her picture home a week or so ago and has it proudly displayed in his room. Our son and his wife were over for supper and he was telling them all about her. I suggested he go get his picture of her and show them. "What picture?" he asked. I would say, "so much for true love", but even though he can forget the picture prominently on his shelf, he can't seem to forget her. I have to use the word "her" because I have no real idea what her name is. Neither does he.

The other night at church he buttonholed everyone there and told them he was going to get married again. Everyone smiled kindly. None had the audacity to ask her name. He does get a bit testy when pressed for it. It is a fine question to hold in reserve for the times he gets particularly pointed about their upcoming nuptials. He asks what is keeping them from being able to be married. I assure him that when he knows her name it will go a long way to getting the issue resolved. He assures us that he will learn it tomorrow. We can go on like this for a long time. (He has lived with us for two years and doesn't know my bride's name yet. For 30 years of our married life together he knew her name before he got Alzheimer's, but not anymore. I think I am safe with the name thing, right?)

Yesterday, someone, a worker at the adult day care, told him that he couldn't marry her because he has Alzheimer's. As they say in the South, "Them's fightin' words." He came home utterly devastated and angry. He wouldn't even eat supper. It took me and my future son-in-law quite a while to talk him out of that funk. Since in his mind he has no disease or any physical or mental problems that accusation always sends him into an angry fit. That they could even think of saying it, let alone using it as an excuse to keep him from his true love, was just more than he could endure. I have studiously avoided ever telling him he "can't" marry this woman. The fight isn't worth it, but I ended up having to deal with someone else's utter carelessness in this regard.

If others will be careful in dealing with the situation, he will be happy. To enjoy true happiness in life is a great thing. In his descent he has had rare occasions of enjoying it, but this situation has given him some real long term pleasure. It is his sunshine in his descent.

The Fog Sets In

2007-11-17T18:16:00.000-08:00

Some of these warm November nights cause quite a bit of fog to rise from the many lakes and rivers around our community. As you get close to these bodies of water you can see the fog rising and obscuring the roads and bridges that pass by them. Similarly, you can see the fog rising in Dad's mind. Slowly it sends up curling tendrils that look so pleasant, then, wham, the bridge is out. There is nowhere that the mind can go. It wanders, confused, sometimes coming out the other side without mishap, and sometimes careening over the edge of the roadway and into the swamp of greater disorder.

Dad's mind lately has come through the fog successfully less often and gone over the edge more often. Due to some very complex family situations, his wife is in a nursing home in another state and he is not allowed to see her. This is not due to any ill behavior on his part, just part of the greater mess that broadly extended families can encounter. She too has advanced Alzheimer's disease and was increasingly confused at his presence. He has not seen her now for over one and a half years. Now, try to think like an Alzheimer's patient. Out of sight . . . out of ______.

He came to the conclusion several months ago that she had died. On the upside he stopped grieving over not being able to see her. But, there has turned out to be a downside. (First more regarding the upside. All the Alzheimer's books and authorities say that we must live in the reality of the patient. We cannot squeeze them into true reality since it doesn't exist for them. So, we have let Dad continue in his misperception because at the outset it finally gave him peace about his situation and because there is absolutely nothing that I can do about his situation that could otherwise give him peace or help. He has been blocked from seeing her and there are no legal channels that I can even take to undo what had been done before he came to live with us.) Now the downside. But first a comment about a friend of mine and his dad.

My friend's dad was in a nursing home with Alzheimer's. (A fairly common disease, isn't it?) One day my friend took his mother to see his father. There he sat on the couch with another woman whom he immediately introduced as his wife. Even though his own wife visited him frequently, he had forgotten who she was. The lady on the couch with him could very well have had a living husband as well, but that is not part of this story. Alzheimer's patients forget things. They forget people. They forget spouses and children. (An aside. Last Sunday our daughter in law came into church a little late and sat beside Dad. That is her common place to sit. After the service Dad said to my bride, "That blond girl came in again and sat by me. Why?")

Dad has a "girlfriend". Good for him, I say. Everyone needs a friend. She is an interesting person. She is a recent immigrant who speaks little to no English. That is OK, neither does Dad anymore. He just makes up in his mind what he thinks she is saying. He probably makes up more in his mind the things he says to her than he actually says. That is how conversations with him go. He talks and hasn't said anything quite often. He starts in the middle and ends in the middle of his ideas. Really downside. He asked, or at least he thinks he asked this lady on a date this weekend. Problem number 1: he can't drive. Problem number 2: she most likely has no idea what he said to her. Problem number 3: he doesn't know her name or where she lives. Problem number 4: he wanted me to take care of problems 1, 2, 3. He wanted to meet her at the library. He obsessed over how she would get there and he would not be there. On, and on and ON and ONNNNN!!! At supper he then announced he is marrying her. "Give me one good reason that I can't" was his challenge. There was a knock down drag out fight waiting to happen. I am not Alzheimer's stupid anymore. I changed the subject. While not forgetting the subject, he did forget the challenge he had made. Good. No, GREAT! But then he started obsessing about him not being there when she arrived again. At least it was better than the fight.

The fog has really thrown him into a ditch on this one. There is no reality that is good for him in this issue. Either reality leaves him either grieving or frustrated. We had been rather enjoying some of the sunny days in his descent. These foggy days, increasingly foggy days, create a little less joy for him and a little more concern for us. Still, the whole situation from a complete outsider's perspective, would be one of great comedy. A whole sitcom could come from it. If I stand outside myself I can find comic relief in it, and that is my current sunshine in his descent.

Natural Progression

2007-11-05T17:33:00.000-08:00

Two weeks ago our youngest grandson turned two. He is no longer my baby boy, now he is my big boy. Each day he adds a new word to his vocabulary. Each day he is more able to do some small thing he couldn't do before. That is the natural progression of things. Right after his birthday I had my annual physical. The doctor and I discussed why I am not quite as able to do everything in the same way I could before. He says it is the natural progression of things. And so it goes with Dad.

Alzheimer's has a progression. There are 7 stages and a patient goes from one to another. It is not a smooth progression. Different patients hit different symptoms at different times. Some skip some symptoms while others have more. It is not a very orderly disease. There is only one real thing to count on. That is that there will be an observable natural progression of decline with intermittent blips in the sunshine. When Dad first came to us we had those sunshine days about 4 of 7. Today, two years later, it is sunshine moments, not days. While there is no smoothness to his decline, it has been steadily downward. That is the natural progression.

We have been able to observe this decline since November 2005. It has now been two full years that Dad has lived with us. When he came we had anticipated 2 months, then a few months, then a year (maybe), but it has extended itself. Our little girl who was a junior in high school has graduated and is getting married in a month. Our grandson who lives in town was a week old. Now he is two and expecting a baby sister in a month. I had just added a second full time job that was supposed to last for 12 months, now after a one year extension they are offering me another 2 year extension. A lot happens in two years. Life moves on in many ways. One thing has dominated it all for those two years. Dad.

We have watched his steady decline, the natural progression of things for him. For the first time in two years we took a respite weekend this past weekend. It was wonderful. My bride and I sort of made a pact. NO talk of Dad for two whole days. That was great. Now we are back and back into the routine. (He stayed here and our son came and took care of him while we left.) What does tomorrow hold for Dad? More decline, the natural progression of things. But in it all there will be some smiles, some moments of sunshine, some hilarity, some moments created by his disease that will be forever memorable - some sunshine in his descent.

Keepin' On

2007-10-28T18:05:00.000-07:00

I see from the most recent blog date that it has been a couple of weeks since I shared anything about Dad. There hasn't been a lot to say. The evidence of his decline is just pretty much there every day. That he can't grasp the details of a conversation most of the time is a common event. The other night my son, son-in-law and myself were discussing taking part in a triathlon. After we had talked about it for a few minutes Dad broke in and said, "When I was in the war in France I never had to walk." Yes, it was a random statement. There isn't much walking in triathlons. We all stopped and looked at him to see if he had something else to say, but he didn't say another word. Everyone went back to their conversations. He looked crestfallen so I assumed he had more to say. I stopped everyone and we all looked at Dad and he looked back and said nothing. We all went back to our conversations again. He looked more crestfallen. Finally he said, "If no one is going to listen to me then I am going to my room," and he did. That is pretty much the way that life goes. He has very little comprehension of what is going on. He can't take cues, like everyone looking at him and waiting for him to speak. It means nothing to him. Most of the time he dwells in a state of confusion. The upside is that he is still going to the adult care center daily without complaint. Thus is life with Dad.

Blessed Quietness

2007-10-09T14:08:00.001-07:00

There is little to share about Joe this week. Thankfully, very little. He has gone each day to the center and hasn't complained even once.

He asked me a week ago why everyone said that he was sick since he isn't. I explained to him very patiently why he is and the evidence of it. He said that I was mistaken, but to have me prove it to him anyway. I gave him the three word test. I say three words to him slowly. He is supposed to be able to tell them back to me afterwards. I gave him the three words and asked him what they were. What words? was his answer. I said, the three words I just gave you. Oh, those. I wasn't paying any attention. What were they again? I gave them again and asked him to repeat them back to me. What words, he asked again. The ones I just gave you. Oh, well, I don't know what they were. I guess I am just really going to have to pay more attention. Give them to me again. I gave them one at a time and he repeated them to me one at time. Then I asked him what they were. What words? he said again. I told him that is why people know that he is sick. He said, "Oh, I guess so," and that was the end of that. The issue was forgotten, of course, by the time we had visited for a few more minutes so he still thinks he is OK. Why burst his bubble with reality if he doesn't ask? He can think anything he wants as long as he goes to the center each day and gives me a little sunshine in his descent.

Not so Cooperative Joe

2007-10-01T11:31:00.001-07:00

Before I begin Joe's blog this week, let me say that I am the grandfather of 3 (soon to be 4) grandchildren. In the profile it says two, but that is old news. Unfortunately, I don't know how to edit the profile and nothing else in it has changed anyway.

This has been a difficult week with Dad. As I have pointed out before his mind seems to run in cycles. He used to have 4 major items that would cycle through seemingly once a week. One week to each item. Those items have all faded away from his mind, except his money, and that he doesn't pound on like he used to. Now he has a new item. He doesn't want to go to adult care. That is now beginning to become a cycle. First he will complain a little, then a lot, and then he will make the grand pronouncement that he is never going back. That is how last week went. He doesn't remember all the things we have discussed about this in the past, so each time it is a new major trauma for him and then for me.

This past week he made the announcement on Friday. After much talk on the subject he remained adamant. At supper he stated it again. On Saturday he brought it up again and was more adamant than on Friday. Sunday morning he reasserted his position. That is the longest he has held out and dug in his heals. I was rather convinced that I would have to spend all this week looking for a nursing home. But!!! At church I asked some friends to pray with me that this could be resolved by this morning. Last night Dad asked me to stop and visit with him in his room. He was still adamant that he wasn't going and that I was just wrong headed in thinking that he had to do so. Then God just began to move and by the end of our conversation he said that he would go back. This morning he was up and on the bus without comment. On my part, I was exhausted from the weekend of dealing with this crisis.

What is ahead? If the cycle runs true, he will be back to not going and adamantly refusing to do so about the end of October or the first of November. The last time this was an issue was the first of September. A month's reprieve from the big stuff so we can deal with the little stuff day to day. He is back for now, though, and that is my sunshine in his descent.

A Bit Overwhelmed

2007-09-21T21:19:00.000-07:00

Tonight was a big night at our house. 5 of our 6 children were home. 1 with a spouse, 2 with fiancees, and 1 pair with a grandchild. My bride worked in the kitchen most of the day and our daughter worked in hers to make this a great meal for the gathered family. Almost everyone was happy. It was loud, raucous, a typical old fashioned meal at our house. One person was not so loud or raucous or happy. One person was not having a good time. DAD.

I knew it in advance that he wouldn't be happy, but I have come to the conclusion that he can't thereby spoil everyone else's happiness. He can't follow one conversation let alone 6 or 7 at a time. I always sit closest to him, and I saw that he tried to "hush" one of my boys several times. He tried but without success. There was no opportunity to for him to start one of his reminisces, no one would have heard if he did. I used to make the family sit quietly while he talked, but he never really had a point or could answer their questions or engage them when they tried to talk to him. I stopped that a couple of gatherings ago. Half the table never could hear what he said and the other half, since he mumbles a lot, could not understand what he had said. Then he would sit with a blank stare and everyone was uncertain how to respond. If they did he could not understand them and he would look genuinely disappointed. Now I have had to make the choice of which is the least insensitive. Not an easy decision.

After eating he went straight to his room. He didn't stay around like he usually does to try to talk to someone. Crowds understandably bother him, but my family is quite a crowd and I won't have them all avoid coming home because it bothers him. He would not like to stay in his room while they are here because he wants to be a part and doesn't remember how he wasn't a happy part the last time. These are the little issues that plague the caregiver. On the other hand there was someone else tonight that really enjoyed the crowd. My grandson. There is nothing like a crowd to wind up a toddler and get them in the show off mood. He went home a happy baby boy. Therein is the contrast in the sunshine and descent.

Return of the Terrible Two's

2007-09-10T18:29:00.000-07:00

I won't say that it was bound to happen, because I thought we had done everything possible to make sure it didn't, but it did. Dad returned to the terrible two's last week. He came home from day care and in a real 2 year old fit announced, "I am not going back to that place!!!!" Why, my bride and I asked. "Because!!!!" Because why? "I don't have to tell you, huh!" What happened? "I am not going back to that place and you can't make me!!!" What happened? "I don't have to tell you!" This could go on for a while. After our first "battle royal" in several months, he went back.

It almost made me regret not going on a real vacation. The result was nearly the same. He had been out of routine, Labor Day holiday had come and he hadn't understood why he had a day off, and whammo! The big plus is that this year he is back to five days a week right away and not the long drama of a year ago where it took 9 months to get him to go back. By Thursday of last week it was over and forgotten. Yippee!! I do fear that if we had gone for a whole week and he had been out of routine for that time, we would be stuck with a much worse situation than just one day of a tantrum.

Good news and bad news are hard to differentiate with Alzheimer's. He is declining and is now pretty fully in stage 6. (There are 7 stages.) When he came to us two years ago he was a 4 to 5. That is decline. The good news is that he is more mellow, usually. This is one of the rare diseases where bad news is good news for both him and us. He is less frustrated because he can think much less clearly. In turn he frustrates us much less. At a time when there are some major other changes happening in our lives, this is a nice bonus. How potential changes will affect us or him is yet to be seen. Again, in a strange way, that is a bonus. At least we can truly say that in our lives every day is an adventure.

Been a While

2007-08-28T19:35:00.000-07:00

No, I haven't died. Too busy as the saying goes. No, it hasn't been too uneventful to write. Just too busy. I have good news for me, at least. I have cut back my hours at one of my jobs and now I will only work seven days a week and not eight. Enough about me, almost.

This week my wife and I are on vacation. My brother took Dad Friday night, Saturday and returned him Sunday afternoon. My bride and I went out of town for that time and had a good time. That created the least disruption for Dad. This week we are taking some nice day trips and our daughter is bringing over our grandson to welcome Dad home from day care each day. We get home in time for supper. Last night another of our daughters watched him during supper while we went out with friends. Vacation is turning out all right after all. Today my bride and I hiked 7 miles. The thermometer on the bank said 97 degrees. We concurred with that, but had a great time. Yesterday, despite the lingering effects of the midwest flooding, we got in 9 miles along a river trail. Even the family dog is getting a vacation as we take her hiking with us. Tomorrow, Thursday and Friday we are going for the long hikes. One of these days she is going to run away when she sees the leash come out.

Dad is showing more marked signs of decline. He is virtually unresponsive to most overtures of communication. The social worker saw him last week and said that he never answered any of her questions. He will start his own monologue and go on until his brain hits a glitch, but he doesn't respond to questions very well. My brother noted the same behavior at his house over the weekend. Then tonight, just to make us all feel that we have no idea what we are thinking or talking about, Dad chatted us all up at supper and answered all questions asked to him. That was right after he started his own monologue that made no sense. It was just a jumble of mixed sounds that weren't exactly words. We did have a good group show up for supper tonight, two daughters, a son in law, a daughter in law and a grandson. Dad had a good audience and he always like to shine for a crowd.

His confusion is increasing, crowd or not. He has become confused on people, events and relationships that he could still handle just a few months ago. He will confuse dreams with reality and has no ability to discern the difference. There is no rational way to help him with his discernment, so we have to live more and more in his altered stated of reality. The sometimes funny and challenging part is to remember what that reality is. He told both the social worker and my brother a quite fantastic story, fortunately this one was not to my discredit, which left them both wondering about its veracity. It was something he dreamed, I suppose, since it was so far from the mark of reality that I suppose I could actually disprove this one to him, but what is the point. That is how he sees it, and in the long run his misperception of reality will actually make my life easier. This one turns out well for me. My lucky day, and on vacation to boot. I have a ray of sunshine in his descent.

A little caregiver "wine"

2007-08-06T11:06:00.000-07:00

It is still the lazy days of summer. Dad is pretty much in a routine. Pretty much meaning that nothing big is happening. He has been grousing a lot lately about having to go to the "place". As I have said before, if he doesn't have something to grouse about, he just isn't a happy man. It is irritating, though, to have him perpetually grouse about this particular thing. He has no options but to go. We have fought over this hill too many times and it is quite wearing to have him go on and on about it. This is the one issue that always becomes the most explosive, the one where he is most likely to sink in his heals and say, " I AM NOT GOING ANYMORE!!!!!" That happened last summer at the end our the vacation that my bride and I finally got to take after giving him 24/7 care for 9 months, and it has happened many times since then.

Now, it is summer time and we would like to go on vacation again. It sounds good in theory, but the fact is that it isn't going to happen. Last year we left him with my brother while we went on vacation. That meant that he got out of sync with his routine. When we got back from vacation he absolutely wouldn't go back to the "place". It took us nine months with many fierce battles to get him back to going 5 days a week as he had been doing. Aside from the visiting nurse, nobody really helped us with those battles. I do not want to have that happen again.

So now we face a "which is worse" situation. Is it worse after 12 months of 24/7 care to not get a vacation, or is it worse to go through what we went through last year. Any care outside the home, even respite care, changes his routine. In home care is not a current possibility. No siblings have risen to the rescue. The schedules of our children no longer allow it. Our youngest has graduated from high school (number one in her class of 400) and is off to college. So, do we grind on and grind down, or do we take a refresher with the known result that it will be harder when we get home than when we left? Do we take him with us and ruin our whole vacation and then still have to deal with him being out of routine when we get back? The questions persist and only those experienced in 24/7 care have a clue how we feel. The upside is that aside from grousing daily about going to that "place", Dad is still seemingly happy in the routine of his life. His is the sunshine in my descent.

Lazy Days of Summer Continued

2007-07-28T13:10:00.000-07:00

It has been another of those lazy summer weeks. Not much really happens. Today we took Dad to a birthday party for a friend of ours who is turning 80. He knows her. She goes to our church. I don't think he has it figured out yet whose birthday party it was. He asked someone else if it was a big surprise (like it was their birthday and were they surprised) but they assured him it was the other lady's birthday. That didn't make much of an impression. Oh, well, he got to socialize for a while with someone other than us and we got to go to a friend's birthday party.

Last Sunday at church a number of volunteer options were being presented. At each one he eagerly raised his hand. He was miffed when he asked me later what it was he could do at the church and I told him there weren't many options for him. He really wants to teach Sunday school, but of course, that is not even a remote option and so he was rather angry. It didn't last long. By Sunday night he had apparently forgotten his desire to do something and hasn't mentioned it again in any fashion since. That leaves the bottom line that not much has really been happening. Just a lazy week of July, hot and slow, like July should be. A bit of normalcy in his descent. Oh, and he is still happy.

Slow week for Joe

2007-07-21T15:04:00.000-07:00

If you remember the Nat King Cole song "Those Lazy, Hazy, Crazy Days of Summer" then you are the right age to appreciate being a "Tweener" like myself. As a point of review a "tweener" is an adult who is the primary caregiver for an older adult while still having children at home. That's me. Two jobs, one child left at home and taking care of my dad. Anyway, that's not the point. The point today is that we are in those lazy, hazy, crazy days of summer. The emphasis is on lazy this week. Other than my birthday notching me up another year, not much has really been happening. I am a new grand-uncle. That happened on my birthday. That makes my dad a new great grandfather for the 5th time. He really didn't have too much to do for that. He enjoyed the company that came for my birthday. He likes company. My brother sat and visited with just him until Dad got too tired to stay up any longer and went to bed. Personal attention is always a big hit. Aside from that it was same ol', same ol'. Routine is good for people with Alzheimer's, so this was a good week for him. We did take him to the store one day and his card playing companion came as always on Tuesday. Nothing else. He has rebounded a little from falling off the edge as reported last week, but his rebound is not nearly as high as the distance from which he fell. That's OK. That is the way it will be and he is still happy.

A Little Confused Joe

2007-07-15T19:13:00.001-07:00

There have been signs of Dad's Alzheimer's for many years. Confusion is one of them, and it becomes more pronounced as the disease progresses. The way that it suddenly makes a leap from little apparent confusion to much greater confusion is always astounding. One of those sudden leaps occurred this week. We have to remember that Dad has been struggling with his words more and more for some time. This week it was like he lost the battle.

At his day care center they have activities for the clients all day long. The only ones he usually remembers, however, are the ones most immediately before he comes home. This past Friday he was trying to tell us about an activity that they had done that he had seemingly enjoyed a great deal. Unfortunately we are still not completely certain what it was. Words seemed to stream from his mouth without saying anything. Maybe it was "hangman" or maybe it was a group word search, I suppose it doesn't really matter. He would sputter and speak syllables and then word groups that made no sense while my bride and I played 20 questions to elicit an answer that made sense. It never came. I then asked him if it was the last activity of the day. He had a hard time with that so I repeated the question more slowly. His answer, at least the answer that I heard, was, "It was before the chicken coop." My bride who is much smarter than I am knew that he said it was before the bus came.

Saturday morning at breakfast we could hear the neighbors installing a new front porch. I said, "The neighbors are putting on a new front porch today." He said, "What is that?" I explained it and he asked "Why?". Again I explained, but I didn't know what he was thinking. After he finished eating he went to the front door and looked out the window. "You have a nice front porch." He thought it was our front porch and he wanted to help build it. Then he started saying another group of nonsense syllables and then he asked me if I "wanted a blue march." Now, I know what he meant by "march", but what did he mean by "blue"? Readers summit your comments. Again, my bride knew.

Later that morning I was outside painting windows when he stuck his head out the door and asked, "Do you have medicine for go fast behind?" Readers? I am getting into his lingo a little and knew what he wanted and sent him in search of my bride who would both know what he wanted and give it to him. He has had much greater conceptual problems since Friday night. It just seemed to happen, and it hasn't cleared up even a little. One more piece of the puzzle fell out. But he is still happy. Happy is good.

Major League Joe

2007-07-09T05:36:00.000-07:00

The 4th of July gave us all a chance to get away for the day. What a wonderful break. We went to visit two of our sons in another town. Dad had seemed to be a little confused about what was going to happen, but he was excited to not have to go to the adult day care for a day. So we all set off for a fun filled day. He, of course, wanted to talk all the way there (two hours), but he mumbles so badly that it was almost always impossible to answer him. If you ask him what he said, he usually doesn't remember. I told him before we started that I couldn't hear him while I was driving, but that has no effect, so he yakked on anyway.

It was hot on the 4th, but we had a very nice picnic lunch. Then we went to the park to play whiffle ball. We took along a lawn chair for Dad to sit in the shade and watch the game. He hates, and I mean he literally detests, anything smacking of exercise. But he said, "No, I am not going to sit here and watch. I am going to play, too." Surprise, surprise. I feared he would just keel over dead in the heat, but I figured that if he died doing what he expressly stated he wanted to do that he would at least die happily.

But what position was he going to play? We decided that he would always be on offense. We only had 7 players, so he could bat clean-up for both teams. He also wanted to be the catcher, so that was fine. We agreed there would be no plays at the plate. He had a difficult time with the concepts of playing with only 7 total players. He had a hard time keeping track of outs. He had a hard time with the concept of ghost runners (when the bases were loaded and someone had to leave 3rd base to play catcher). But most importantly, he had a good time. He got 3 hits and ran the bases by himself. That was astounding. He never seemed to be worn out for even a minute. It was a shining day for Dad: a day of sunshine in his descent.

Not much going on Joe

2007-06-29T17:40:00.000-07:00

It has been a rather slow start to summer. Since Dad is past the stage in his disease where he is impossible to get along with, his life is pretty much an uneventful routine. We take him here or there to add some spice, but he doesn't comment on it or talk about it later. He asked me to call someone for him the other day and I said that I would do it right then. I told him I would get the phone and call right away. As I was dialing I noticed that he had wandered off. He had forgotten about it already. The highlight of his life is now what happens each day at adult day care. The piano is fixed and he can play again on Tuesday. He is happy.

The most notable part of his decline is loss of speech. He has, of course, had problems finding words for some time. The rate of loss has accelerated. Simple words come with difficulty and conversations are hard. That brings a sad point. We had guests the other day and mostly they just talked around him. He sat at the table with them, but he couldn't follow their conversation. When he interjected a thought they would politely listen, but then ignore further attempts to engage him in conversation and would go back to their own. These types of events are very hurtful to the Alzheimer's patient. They know they are being snubbed, but can't articulate the hurt. A monthly newspaper column, "Time in a Bottle" had just addressed this issue the week before company did the same thing to Dad. Seeing it happen in real time brought alive the truth about the disease discussed in the monthly column.

One of our nightly attempts at supper is to start a short conversation with Dad about his day. The conversations never last long, but we try to engage him. Ten minutes later in the middle of another conversation, he will suddenly interject an idea from what we had been talking to him about before. Ideas process slowly in his mind and when it gets focused on something it may last a long time before anything comes out. At that point it often makes no sense unless you think backwards and try to think as he thinks. It isn't always easy.

The good news is that in most ways life for him is now better. He has no great rages anymore. He seems to look forward to adult care and talks more about it when he gets home. Life is stable and secure. We are less stressed. That is our current sunshine in his descent.

Looking Good Joe

2007-06-16T13:04:00.000-07:00

There was a wonderful thing that happened last week. Dad wanted to go to the barber. His barber was closed. His barber has been trying to get Dad to spruce up a little, but Dad just wants a haircut. Well, the new barber didn't ask any questions like "what do you want?" he just started in. The first thing he said was, "you need a trim". Not on top of his head, but on his chin. Dad has been wearing this truly atrocious beard since he moved in here. It is like a protest statement or something. Anyway, it is awful to say the least. Some people even took a poll and decided that he was the spitting image of Fidel Castro. Dad could go to Cuba and be widely accepted. The barber said, "you need a trim" and started trimming. Dad processes words quite slowly. By the time he processed what the barber said, half of his beard was gone. You can't run around with half a beard, so now it is all gone. Down side, he is growing it back. Upside, we know where to take Dad for his next haircut. By the way, everyone has complemented him on his new look.

Do you know the old song, "If it weren't for bad luck, I'd have no luck at all"? That sounds like Dad this week when he came home from day care. Someone had stopped him from doing something he felt he should be able to do. It seemed a little silly to me too, but rules are rules. It was all he wanted to talk about. He couldn't remember anything else that happened that day but that one thing. If it weren't for a negative story, there would be no stories at all. The next day he did have a better story. They have fixed the piano at the center. Bad news follows good like night follows day. They wouldn't let him play it because he wasn't on the schedule that day to do so. Alas.

Keeping on Joe

2007-06-08T17:45:00.000-07:00

It has been a while since we last were here. My bride and I finally got a week of well deserved vacation. The week before that was too hectic to stop and write anything. How has Dad been doing in this time? Well, I came almost to my limit with him two weeks ago. He had become so uncooperative that I felt I had to put him in a home to salvage my own sanity. Too many people see the Alzheimer's patient as the person in need. In reality, the caregiver is the one with the weight of responsibility and care. The patient is really most of the time in their own little world. As one very insensitive person said to me when I said that I might have to put him into a home, "So, you have finally gotten tired of him, huh?" That is how people that need a brain transplant hinder the caregiver's survival.

Our daughter and her husband along with our grandson came to stay with Dad while we were gone for a week. All survived well. Dad had no episodes of disagreeableness that led to problems. He hasn't any since we returned home either. Progress. Unfortunately, it is progress that is measured in terms of his decline, not progress like, "yeah, he has finally learned not to be so difficult." It means that he has mellowed with the disease. Today he came home from the day care center and asked my bride for his money. She looked at him and asked told him kindly that she didn't have any. He said that he wanted $100. She told him again kindly that she didn't have any money. What did he do? Two months ago he would have gone into a rage and swore and ranted and threatened great bodily harm to whoever was stealing his money. He has done that for the 20 months he has lived here. Now, he said, "Oh, but I want some money." To which my bride once again answered that she didn't have any. He shrugged and went to his room. No tantrum. No hours long argument that always repeated the same things. No swearing or threatening great bodily harm. No bringing it up again at supper as a lead in to another endless argument. NO!!! Just a shrug.

He has been that way now for a month on the issue of money. He has completely dropped all the other major issues that use to result in the same horror filled explosion. Now he has just one remaining issue. He still doesn't want to go to day care. That is not an option. It is not an option with us. It is not an option with the Area Agency on Aging which provides medical insurance for him based on his Alzheimer's. No day care, no insurance. When he positively refuses to go to daycare, he will have to go to a nursing home. Why? He needs the insurance coverage for one thing. For the other thing, I can't describe how it was to go on vacation and not have him as my key responsibility each day. I am a lifeguard. It was like coming up from the bottom of the pool with a heavy weight. Your breath is almost all gone and you break the surface of the water and take a gulp of refreshing air. The weight is still there, but you can breathe again and start to resolve the problem again. The first need was air. I got air!!! With air I can work on continuing the care that he needs. I had some sunshine in his descent.

Up and Down Joe

2007-05-19T18:08:00.000-07:00

It has been a busy week for Dad. Our life is in a whirl this month and that means that he has no shortage of things to do. Today was our open house for our daughter graduating from high school. It was a sort of melancholy day. She is the last of six. No more open houses for our own children. Next stop, grandchildren. The plus side, all we have to do is go, not prepare it all. We had quite a crowd stop by. Dad liked that. He had many people to talk with. Both my siblings were there to see him. He liked that. He was having one of his really clear days today, so it was a good time to see people and visit.

The other day he was quite confused. My bride went to the honors award program at the high school and came home with all our daughter's "hardware" (valedictorian medals, braids and tassels along with some certificates). He asked what they were and was told. Later he was going on about how wonderful she was to clean house, do dishes, cook and write all those letters and then get those nice awards for doing it. We all looked at him with one of those "What?" looks. He thought all the awards were my bride's awards for being the best wife and mother around. No, he wasn't joking. We said, "Those are Mary's awards." Yes," he said, "I know. Those are Mary's awards." Then he turned to my wife and said, "You are Mary, aren't you. My mother is Mary." We simply said, "No, our daughter Mary." "You have a daughter Mary?" he asked. "But you are Mary, too. My mother's name was Mary." No, bride's name is not Mary. That's alright, he would never understand. It was just good that he was so clear today.

The social worker came this week to look in on him. It is nice to have those support services. If nothing more, it is a chance for me to unwind with an understanding ear. She visited with him for about 45 minutes. Then she said to my wife, "He is confused today, isn't he?" Yes, he was. It was good to get all that confusion out of his system for today. He played the regular host of the party. Afterwards he played cards with my brother and went to bed happy, but not clean. He helped get things ready for today's open house by sweeping the sidewalks and the garage. He was so dirty. I told him to please get cleaned up before the guests arrived and to take a shower. He was adamant that he didn't need to be told to do such a simple thing. The truth is, he changed his clothes, but he didn't shower. When we were outside just before the reception I was standing next to him and I about gagged. So, he is not altogether clear, but he was clear enough to have a great time at the party. Way to go Dad.

Busy, Busy Joe

2007-05-13T17:32:00.000-07:00

There are periods in Dad's life when things go fairly uneventful for some time. This past week has been a busy one for him. First we went to our son's graduation from college in Minnesota. That is a long drive, but Dad was happy, except for not getting to drive. That leads to another activity of the week. We had our regular visit to the doctor. Insurance companies and drug companies must be in cahoots with the AMA. Though he has been on the same drugs for years they routinely tell us that if we don't see the doctor and get a new prescription that they will no longer fill the ones he has. So I took him to the doctor. He jumped on the scale and moved the weights before the nurse could do so. It wouldn't register his weight so he let her finish. He proudly proclaimed that he weighed 23 pounds and we went to the examination room. It is good that he is deaf so that the doctor and I could take care of his prescription problem. Dad had no clue why we were there, though he had been told. After everything was done he asked the doctor to answer one question. "Can I drive?" "No" "Why not" "Because you would get lost" "I disagree" "I'm the doctor and that is my professional opinion" Wonderfully that was the end of that discussion. No argument with either the doctor or me later. WOW!!

Also this week Dad became the organist at the senior day care center. Yes, they have an organ. No, he can't play the organ, but that is no impediment to doing so. It is in the lunch room and they let him play it while dinner is being served. He is content. When they bring the meal to his place then he stops and eats. Problem solved!!! Yea for creative workers at the center.

This week I was working in my workroom on fixing an old fan. I was making little progress when Dad came in. I cringed inwardly, but told him what I was doing. He said, "Why don't you put a couple of washers under the motor mounts to lower the depth of the blade." No, he didn't really say that. But, that is what he meant to say if he could. So, I did, and voila, it was fixed. I never would have thought of that myself. Of course, in the middle of doing it he got bored with the slowness of the project and wanted to get a knife to cut the blade up to make it work better, but he didn't. I told everyone who came to the house that day how he had helped with the fan. Well, he had forgotten that he had done so but seemed to appreciate everyone's smiles anyway. Yes he did actually help. He held the motor mount still while I put in the washers. Go Dad!

Dad also got into a gardening mood this week. Our youngest daughter, who will be graduating from high school in two weeks at the position of number one in her class of 425 students, was home for the evening so she said she would watch Dad while my bride and I took our new dog for a walk. He was quietly sitting on the sidewalk when we left pulling grass from between the cracks in the sidewalk. I thought he was going outside to pick up paper in the yard, one of his favorite activities, but he was pulling grass. When we came home he had done a thorough job. He had also gone into my work room and gotten a slip blade knife. He had cut the grass out. Our daughter is really good at looking after him but quite powerless to stop him from doing what he did. I was rather upset because he had never before gone into my work room without me there and never before taken a tool. I have to watch that now. There is no door on my workroom and no wall to put a door in. All the power tools have a triple safety mechanism that prevents him from using them, but there are the smaller tools that I would prefer he leave alone. He did come out of everything unscathed, though, and was quite satisfied with himself for a job well done.

A note about me and sunshine. I am a grandpa again - third time. This time it is a girl. Congrats to our daughter and son-in-law on a job well done. It is their second. As we daily watch Dad's decline and sunset, it is nice to have a new little sunrise in our life.

Frustrated Joe

2007-05-04T20:36:00.000-07:00

It has been an extra long time since my last blog. There was a problem with logging on, but I'm back.

Alzheimer's impairs ability, not desire. The list of things that Dad can't do is long. The list of things he is willing to admit that he can't do is non-existent. The list of things that he wants to do is long. He asked the junior Sunday school teacher two weeks ago if she needed any help teaching. That might sound innocent enough, but it isn't. There is nothing he starts that he doesn't want to control or dominate. Interpreted accurately, he asked her if she would like to sit while he teaches her class for her.

What is the downside to this? Well, he can't remember what he is saying if interrupted. Do junior SS kids interrupt? Yes. Would they do it on purpose once they caught on? Probably. Can he display a very nasty temper? Yes. Add to that that he cannot maintain dialog for long periods of time. It reduces to mumbling and lost words the further it goes. Ability, no; desire, yes.

Dad's plan B. Our church needs a choir. Who said? He said? Why did he say? He wants to be the new choir director? Problem. See above. Second problem, he wants to accompany the choir on the piano. It is his back door attempt to play the piano for church. Secondary problem, he can't play the piano well enough for anyone to sing with him. Will he take suggestions? No. Will he take criticism? No. Will he be content to lead the choir if the music is picked for him and the piano is played by someone else? No. (At least that way the choir could sing. They would have to ignore his direction, but hey, I've been a choir director and that happens more often than not.)

The piano at the adult care center has broken. True. I went over and checked it out myself. What does he want to do? Fix it. Can he? Probably. Next problem. He would want to retune it. Can he? No. I did tell the director that I believed he could fix the problem if given the chance. It is still broken. New problem. Now he wants to entertain them on the trumpet instead. Can he? NO!!! When he first came here a year and a half ago I encouraged him to play his trumpet. He tried. His lip is gone. He won't practice. He has a range of 4 notes comfortably. I hope he forgets this last goal quickly or I will have to hide his trumpet and mine, too.

Truly, the spirit is willing but the flesh is weak. That makes the sunset all the more sad.

Sneaky and Dirty Joe

2007-04-23T12:06:00.000-07:00

Last week we looked at sneaky Joe. This week we simply add an adjective. He was both this week, and other weeks as well. At 6:30am we heard the shower running in his bathroom. That was a good sign. At 7:15 I went to get him for breakfast and didn't hear the shower running, but that is largely a result of being hard of hearing. Without returning to his living area after breakfast he got on the bus at 7:50. At 8:30 I went to his bathroom to collect dirty clothes. The water was still running. HOT only! He had never been in the shower at all. The rug in front of the shower was completely dry. He had turned the shower on and gone to his room and did a puzzle book until I called him for breakfast. But, my bride was happy that he had "taken" his shower since she had heard the water on. We have often on wondered how he could have such a foul odor and still take as many showers as she hears him taking in the morning. Now we know. He doesn't!! The really sad thing is that he thinks he does. There is the descent.

The visiting nurse was here last week and she told him he "stunk". Well, he was adamant that he took a shower daily and that was impossible. Right?! She also told him that beginning the week of the first of June he must begin going to adult care 5 times a week instead of 4. Without her help we would be sunk, truly. NO one else helps us with these tough issues. Well, he got really mad at her and protested loudly, but she said it didn't matter how much he sqwacked, he was still going. When she left he told me that he hates her coming since she always brings him bad news. (Maybe bad news for him, but not for everyone.) That night after supper he was telling our daughter that "that lady" had been here today and had bad news for him again. Our daughter asked, "What lady?", but he didn't know. Then she asked, "What bad news?", but he didn't remember that either. Two days later he had a clear moment and asked my bride, "Is your husband lying or do I really have to go to that place 5 days a week." Interesting since I hadn't told him about it, but I am the bad guy and when the day is done, all bad news really comes from me.

Sneaky Joe

2007-04-13T17:55:00.000-07:00

Working two jobs I don't get to spend much time during the day overseeing Dad's care. That falls mostly to my wife. This week, however, I had a meeting about a mile from the care center where Dad spends 5 hours a day 4 days a week. I was running ahead of schedule so I drove to the center to watch Dad in his "own environment." This is the place where he says he doesn't want to go. They are slower than him in their abilities. That is the gist of his arguments for not liking it there. Watching him revealed another thing altogether. He was sitting right next to the lady who was reading them a story. He looked like the top kid in the class. He looked quite happy.

I had plenty of spare time to talk with the director for a while. She told me about his petition to get to play more days on the piano. He had told me that he had passed around a petition to get his three days back. He told me about all the people that had signed it. Well, they did. The reality, though, is that they were quite unaware of what they were signing. She told me that when he asked them to sign, some of them said why, what is this? He told them he was just seeing how many of them could write their names. Sneaky. She approached him and asked him what that was at the top about Joe playing music. He said, "Oh, nothing, nothing. I am just seeing how many of them can write their names." Remember, he is never wrong, so it isn't a lie since he told it. He only tells the truth.

She also told me an interesting fact that I wasn't aware of. When we were going through the stress of getting him to go to 4 days a week instead of 3, right at the time he was going from 3 days a week of playing piano to one, I had talked with the director by phone. I had told her that he really liked to play cribbage. If she found someone to play cribbage with him he might like it better. I had never heard anything back from her. Well, it seems that she had found another man to play cribbage with him the very next day. They play it every morning. Two days later, without telling him that I had been there to observe him, I asked him if he ever had a chance to play cards with anyone there. "No, no, I never play cards there." Admitting that he is having fun, or that he is wrong, is just too much for his mind to bear, I guess, so he has his little pleasure but is too sneaky to admit it. At least, however, I do know that he is enjoying life a whole lot more than he wants to admit. I am very glad for that.

Perspective

2007-04-09T16:57:00.000-07:00

I have a dear friend that has Alzheimer's disease. I know her children well. I visit her in the nursing home occasionally and it is good for perspective. In quiet confidence she assures me that her children are stealing from her. I nod with understanding. It is not a nod of agreement, but of understanding. I understand how her children feel in being falsely maligned. She sometimes becomes fixated on wanting a specific thing that she can't have. It is, of course, the fault of someone at the home who is just not being kind to her. I nod in understanding. I feel for the workers at the home that take the abuse daily from her tongue. One of the most interesting things about this dear lady is that she can be so lucid at times that no one, not workers or guests or friends would think she has a problem. I nod in understanding. How easily the unaware can be sucked into her nonexistent reality.

I always come home from seeing her just a little more upbeat in my attitude toward Dad. He is not alone. Nor am I. As much as it often seems that he is zeroing in on me for his attacks, he is not. He just simply has no clue what it going on. I can see it better after seeing it from outside myself.

The upside lately is that he is getting worse. Upside?? Well, he is forgetting faster. That means that I can finally deflect an idea and not have it bite me thirty seconds later. Some issues to be sure don't go away. Keeping him from his own money still stays in his mind for more than 30 seconds, but other things don't. He brought up a recurring issue the other day and I deflected it for something else. When the something else was done he didn't get back to it. Hurray!!! That is becoming more common. It is sad for him, but I don't think he was necessarily happy always arguing about things either. He would get so upset. Now he doesn't. To me that is a good thing for him since they are all issues that nothing could be done about anyway. He lived in constant frustration. Now he forgets most of them and goes more merrily on his way. It is more indicative that his latter stages of disease are in onset, but the sunshine in this descent is that he is finally happier.

Marks of Decline

2007-04-01T19:19:00.000-07:00

When Dad was first diagnosed with Alzheimer's it was a royal shock to some, but not so great to my bride and myself. We had watched his decline for some time and were concerned that he was demonstrating behavior far beyond the norm of elderliness. Patterns had emerged that were too unusual to be normal, even for Dad. What was a shock to us was the immediacy of the doctor's assessment. Dad didn't just have a problem, he was incompetent. Immediate action was required, action that we were not altogether prepared to provide. One of the first actions that we took when he moved in with us a week after the doctor's declaration was to have him re-evaluated, a second opinion. That evaluation confirmed everything identified in the first one with further comment on his condition and the inability to live on his own ever again.

There is something about time and exposure that dulls the senses. Paint on a house fades so slowly that we don't notice. The slowness of it's progress can make us even think that it isn't fading. That is the way with Dad. He is here all the time. His incompetence has become the norm. What was clear is now indistinct. Since he has some good days, those days eclipse the reality of how he is declining. So we had him re-evaluated for our own sanity sake. Is he the same as before? Is he getting better? Did they have the wrong diagnosis all the time? The pressure cooker environment of 24/7 care can create false illusions, almost like a man dying in a desert sees an oasis.

The results are in. Apparently I have gone insane over the past year and a half. While I could clearly see some things that were going wrong, others seemed to have stood still and some even had improved. Only in my numbed mind and Dad's diseased mind is that so. The past year has in reality brought great decline. It is recorded, measured and plain. Stopping and looking objectively at the results I can see it is so. Even rereading blog pages makes it clear. 24/7 care, however, is the forest that often obscures the trees. But the reality is that he is in decline, not just a little, but a lot. Alzheimer's is funny. It is uneven. One part of the brain is destroyed while another part is intact. For each patient it is different. So decline is not smooth. He can't follow the thought of a simple sentence, but he can draw a complex picture. He can't reason a simple thought, but he can argue his point (only his point without any understanding of other points) on a thought. (But, hey, look at the world in general. On that basis politicians and extremists on every side have Alzheimer's.) Those positive or apparently normal actions dim the view of the overall reality. Dad is in decline. Fast decline.

What next? I broached that subject with a close relative and the first word out of their mouth was, "So you're getting tired of him and you want to ship him off, is that it?" With that kind of support you can see why my own mind is dimming. I tried to approach a second close relative and got almost the same answer. Any thought of my putting him in a home is the result not of need, of his benefit, but of my being tired of taking care of him. I talked with some other care givers and there I received some support. What kind? They had had similar experiences with their own relatives. The caregiver takes all the heat of the care and then all the heat of the decisions about the care, or in this case, the potential need for different care. The caregiver is the problem and their contribution to the solution is discounted.

This marks the decline not only of the patient, but of the caregivers ability to make the best decision about care. When all decisions about care are second guessed as being self serving it diminishes the options. Dad experienced this himself when he had to put his wife into a nursing home several years ago. Others judged his decision on their own faulty opinions and ultimately made horrendous decisions that have plagued Dad since. No one saw the patient in need, just the caregiver in failure. That is the box in which the caregiver finds himself. Not only has exposure dimmed their perception of the problem, but they are also now also feeling a certain coercion to make potentially harmful decisions both for themselves and the patient. This mark of decline not only reflects the condition of the patient but the future condition of the caregiver. If knowledge is power, and I have knowledge of these things, then I hope to be empowered to find the right answer to deal with marks of decline that we are seeing and experiencing.

Never Say Die Joe

2007-03-23T13:44:00.000-07:00

Last week Dad was pestering the director of the adult day care center to let him play the piano more days than one. She has been telling him for weeks that the answer is "no". Last week she put it more emphatically. "NO, Joe. You will only play one day a week. No more." There were not enough words there to rearrange into anything else. He came home miffed. Now, this was not new news. But to him, this was like an epiphany. How could they do such a thing?! I asked him if they hadn't already told him that for weeks on end. Yes, but this was different. He understood it was final because the sentence was too short to construe in any other way. That would seem to be the end of it. But, no. This is Dad. Yesterday he came home and said that he had gotten thirteen people to sign a petition to have him play more days. These are the same people that he has already said are too deaf to hear what he plays and/or too mentally impaired to have an opinion. Never say die.

This week he started at the adult care center 4 days a week. This wasn't new news either. We have been talking about it for some time. He has brought it up himself and even said that he would do it since he had to do it. Then on Sunday night he declared that he wouldn't go a fourth day. NO. NO WAY! I was sincerely hoping that he would have forgotten that oath by morning, but since it was a negative item and not a positive one, that was a wasted hope. Monday morning was not too pleasant. He was going to dig in and not go. I wasn't going to let him do so. Every time he tried to give a reason why he shouldn't, I just cut him off and told him that he would. Period. End of story. After repeatedly being cut off at the start of each argument, he finally got dressed and just was ready when the bus came. He seemed to have had a good time and met someone new to visit with that day. The process can be very wearing. It really requires more than just one person or couple to deal with the every day issues of an Alzheimer's patient. But the sun came up again Tuesday morning and all in all, Dad had a good week.

Birthday Joe

2007-03-17T14:07:00.000-07:00

It was an event to bring some joy to Dad. Wednesday was his birthday. At our church's Lenten supper we had a small surprise birthday party for him. He got a basket full of cards and we changed the activity for the evening to one in which he could easily participate. (It isn't easy making all activities easy for Alzheimer's patients and still enjoyable for everyone else.) He was surprised. He blew out his candles and opened his cards. It was a small moment of joy.

What is the downside, the descent to this story. His mind doesn't retain joy nearly as well as it retains anger and resentment. He hasn't mentioned the party since we got home from church. There is no such thing that I have noticed in 16 months as lingering happiness. He continues to be upset about his money. Last night I took my bride on a date. (That is why the blog is a day late.) Our daughter stayed with him and he railed on her about our (my bride and me) being so mean to him about his money. Remember the new soft target I mentioned last week. He found one. This morning my bride and I went to the church spring clean up day and left him with her again. By the time we got home his anger was fully spilling over to not so soft targets. Finding no supportive ear in me, he finally just went angrily to his room. So much for any lingering happiness from a moment of joy. Joy and Joe, it seems, are incompatible.

Never Wrong Joe

2007-03-10T14:46:00.000-08:00

Sometimes it is hard to distinguish between Alzheimer's and just plain old Joe. The admission of being wrong is something that I remember as being very rare in Dad from my childhood days. At least then he could be proven wrong with evidence, though never wrong with logic. Today he can simply never be wrong period. I suppose it has something to do with protecting his turf, the bit of mental capacity that he still identifies as his own. If he were to admit wrongness, then he would feel that he had no turf left. In general, agreement with the Alzheimer's patient is the easiest route to take. "It sure is cloudy" (on a sunny day) would be answered, "It sure is." If there is danger to the person by agreement, however, then it is not the best route to take. Avoidance or distraction are the first lines of defense. But when Dad is "protecting his turf" he can get exceedingly angry at avoidance and strongly resists distraction. That unfortunately can often lead to confrontation. It is a confrontation that he will always pursue with utmost vigor though he will always lose, not in the sense that he has been proven wrong, but in the sense that he doesn't achieve his goal.

There is no way to list all the issues on which he is right. That would take a catalog as big as a large volume and need to be updated daily. Lately he has been pushing the issue of his being well and not needing anyone to take care of his money. That is the recurring mantra every few weeks. He has given up arguing with me about it. He has learned that that topic will go nowhere with me. So, he has been trying a softer target. The past few weeks he has been on my bride's case about it almost daily. Since she can ignore someone about as effectively as anyone that I know, it hasn't really bothered her much. She just goes "mm, hmm," a few times and he drops the issue figuring that he has gained full assent. Actually she is just humming a tune and not listening to a word he says. This past week, however, he went into a full court press with her on the issue. No tune humming murmurs would do for him. His anger level has increased and an answer must be complete and agreement must be full. Unfortunately for him he discovered she is not such a soft target. She turned to him and with a stern look and very stern mother's voice laid out the law. His jaw dropped, his eyes popped and then he just shut up. Victory was hers. At least it has been for the rest of this week. Of course he is still right. He just needs someone new to convince about it.

Same 'Ol Joe

2007-03-02T20:38:00.001-08:00

It has been a relatively uneventful week for Joe. The massive Midwest storm has limited travel to only the necessary. No trips. He got to play a little on an extra day this week, but that is not going to be the norm. Mostly he has just been negative and grumpy and complaining.

On Wednesday he complained about what was done at church. Every day he has complained about no one believing he is healed. Daily he has been complaining about not having control of his own life, money, or whatever has hit his mood at the time. This is all cyclical. He will go on rants for a week or so and then be mellow and happy for a while and then go on rants again. All the rants are always the same issues. It is like his mind is a record and when it gets to that spot the music just has to play. Since there are no answers to what he is complaining about, no answer that he can reason out, he just goes on and on. It was much worse when he first came here because we didn't know about the disease and didn't have any experience in dealing with him. Now, it is just the cycle of the month. There is no satisfactory answer and he won't be redirected, so we just let him rant.

Traveling Man

2007-02-24T21:50:00.000-08:00

This past Monday I took a day off. No big deal perhaps, but I haven't had a day off since New Year's Day. 7 days after 7 days after 7 days, etc. Perhaps a whole day off would have been a day without Dad, but he is here so we took him along. I said to my bride, "Hey, want to go to the river and see the eagles?" Now I know that wives don't get a day off even when they have a day off, so I was sure she would say yes. Off we all went. Dad was a little skeptical. When I said bald eagles he thought we were going to a ball game. We must have gone over that at least 10 times, no exaggeration, before he understood it wasn't a basketball game. Selective hearing or just impaired hearing. Off we set.

When Dad came to live with us we made one sad and great change. My bride stopped sitting in the front seat with me in deference to Dad. We have a bench seat so she can sit right next to me just like 30 plus years ago. But she has sat in the back until last week. On our way to church I said, "Hey, sit up front with me," and she did. Dad was relegated to the back seat. He rode in the back seat all the way for the hour and a half trip then on Monday. Occasionally he would mumble something, but we couldn't understand a word he said. My bride turned around and asked him a couple times what he said, but he couldn't remember, and that was that. We watched the eagles for 20 minutes and went to get something to eat and came home. Same scenario on the way home. We did stop in a small town where we used to live 50 years ago so he could show me the house. He couldn't remember it though, and we drove on with occasional comments from the back seat that were completely unclear and completely unremembered.

That is one reason I don't want him up front anymore. He talks a lot, but he never says much most times, not much that can be understood anyway. He does have his moments that he is as clear as anyone, but mostly he mumbles and has no idea what he has mumbled. Sadly though, he usually wants a response and that can be distracting in the car constantly asking what and getting only a mumble for an answer. The upshot, however, of the trip was that he had a really good time. So did I and so did my bride. It was great. He told his card playing buddy about it the next day and my brother about it two days later. That is a pretty good memory for a man that doesn't have one. He loved his trip. Thanks to a major winter storm that has socked our area for the past two days, I have had another day off. WOW. And more than that, I think as a result of it I will get another one off next week. Maybe we can take the traveling man somewhere else. My bride read an Alzheimer's book, "Creating Moments of Joy". We try.

One other thing about this past week was that he wanted to put puzzles together again. It has been a while since he was eager to do that. He had a 500 piece that he couldn't manage and he is not good at taking help. I was visiting some shut-ins this week and they had a 300 piece with extra large pieces. He got got the border done on it and then said it was too hard. He did let my bride help him a little and got back on track. Two of my daughters then filled in about 80 more pieces while he was gone and that motivated him to finish it. Today he did a 100 piece puzzle by himself. That kept him busy for a long time and he seemed quite satisfied to have it done. I would say that he had a very good week.

Both Sides Now

2007-02-16T21:00:00.000-08:00

There is an old song "Both Sides Now" that came to mind as I was playing with my youngest grandson the other evening. He's just one, but he is learning things at an amazing clip. He knows where his toys are at our house, but, of course, that is a given. He has his favorite drawer in the kitchen to play in, but that is also a given. The other night his mother taught him a new little game and he caught on right away. Two times she showed him how to do something and he mastered it and played at it for quite a while. That is a young and healthy brain showing one side, an exciting side, of human development.

Then there is Dad. Every night after supper he helps my bride do the dishes. Every night. He dries and puts them away. Plates here, bowls there, cups in the other cupboard. He does have those three things down. But that is not all of the dishes. Measuring cups, serving bowls, storage items are a different story. They are used for every meal and dried after every meal. Each night he stands holding them uncertainly and my bride says, "It goes there, Dad." Each night. That is a mind effected by Alzheimer's. Unhealthy, sad, the decline of human development.

Both sides now. Young vibrant mind versus stagnant and declining mind. The contrast between the two minds, the let me explore mind versus the lead me so I know what to do mind. Each morning Dad asks, "What are we doing today?" He needs direction to function, routine to live by. Scooter (my grandson) is in a whirl to discover, to create new vistas. Scooter is the sunshine to Dad's descent. When I began this blog 15 months ago there was more sunshine to Dad's life. He still had some, but the sun has pretty much set and it is now rising in a new sector. After a long day or two with Dad's evening of life, Scooter is the joy of morning. Both Sides Now.

Just a note about Alzheimer's and the positive effect that living with us has had on Dad. His decline before moving here was precipitous. From the first noticeable appearances to his being declared incompetent was only 3 years. There are things that the medical community is finding can help delay the progress. He was on a drug for the three years before coming here. That is one way. We got that drug dosage doubled for him. That was a help. But there are other little things that keep appearing in the Alzheimer's support material. Juice for breakfast every morning instead of coffee. Very small but helpful. My bride handles his meds for him so he gets them on time and regularly. Very helpful. Daily living tasks taken off his shoulders and the frustrations of doing them also. Small and helpful. Then there is the majorly helpful. Evidence shows that living with loved ones can delay going to a nursing home for over a year. The positive socialization that comes from close friends and family is very important. Alzheimer's isolates its victims. Positive socialization helps keep the brain healthier. Nothing can cure the disease or prevent its eventual progression, but living with us has been good. Whereas a nursing home could do the meds, the daily living tasks, the juice for breakfast it can't do what a family can do. Kudos to my bride for her excellent work in giving him just a little longer sunshine in his final descent. Kudos to Scooter who runs to Dad and gives him as much unconditional attention as to anyone else for giving Dad just a little longer ray of sunshine in his descent. God made families and may we never underestimate just how important they really are.

Subdued Joe the Cookie Monster

2007-02-09T15:01:00.000-08:00

Dad went in to this week in disbelief that the center really meant that he wasn't going to play the piano three times each week anymore. They were wrong, they didn't understand, they would change their mind, he could persuade them to change their mind, he would boycott, (not his word) their center until they changed their mind, etc. He gets to play on Tuesday, so he went prepared to play and to go to war to secure his turf. He came home Tuesday night exultant. They had changed their mind and he was back on tap three days a week. I was suspicious of this change of events since they had called us and told us that wasn't true. So, I called them to find out what was up. NO, they had said nothing to him to indicate he was playing again. NO, he wasn't playing again. YES, he had made a big argument that was only ended when the director left him sitting arguing only with himself while she went and took care of center business. Her leaving the scene must have been his assurance of conquest. That or only hearing what he want to hear. For example. The conversation on her part went like this. "JOE, WE NEED TO HAVE other things that people do around here beside just YOU PLAYING THE PIANO. There are other activities that would help people be more active and involved than listening to you THREE DAYS A WEEK." Now, just read the capitalized words and you will see what he hears. It's like that around the house as well. He only hears part, analyzes part and responds to part of what is said. It is Alzheimer's accompanied by selective hearing. The selective hearing part was in effect before the Alzheimer's part.

Anyway, I told him that he must have misunderstood the director, that I was sure she had said that he was only going to play one day a week. Boy, did he blow up. Vesuvius!! I was a wrong minded blah, blah, blah. So, he went on Thursday all ready to play, and he didn't. A much more subdued Joe came home that night. If it had only been that simple. But, of course, with Dad nothing is simple. He didn't want to go if he couldn't play. He made horrible accusations against them for being terrible liars. Getting him to go back was a war. Quite honestly, he has no choice in the matter. He can't just sit in his room staring at his walls all day. My bride can't entertain him for 5 straight hours like they do at the center. Inactivity breeds auxiliary problems that become major issues themselves. For his good he must go to the center or finally enter a nursing home. For our good it is probably the latter choice only, but our good is not the only good to be considered. He has a very low opinion of nursing homes and placing him there right now would not necessarily be in his best interest. He argued that there had to be a third choice, one of his making and very vivid imagination. Do you remember all the things a child of five thought were possible. Five year old imaginations of the impossibly possible don't hold a candle to Dad. There isn't a third choice. He went back.

The Cookie Monster. My bride makes cookies every week. There aren't many people left around here to eat them with 5 of our six children grown and gone. But, the cookies disappear at a very rapid rate. No, I am not gaining weight. Yesterday we found out why. Dad is quiet as a mouse. He sneaks around and can come upon us quite suddenly and unexpectedly. Well, it seems he has been making treks into the kitchen unnoticed. He stuffed the pockets of his pants full of cookies. We mentioned it today to our daughter and she said oh, yeah, he does it all the time when we aren't around. If he just sees her in the house he will raid the cookie jar or rummage in the fridge for any sweets available. The nurse said not to worry about it as his Alzheimer's is already starting to cause weight loss and he can't process the calories he intakes. But it does answer the question of where all those cookies were going. It also demonstrates the nature of his mind. He would never raid the cookie jar or the fridge in front of an adult, but he doesn't hesitate to do so in front of one of the "other" children. Even though we don't care, it is his little way of staying in control.

Disappointed Joe

2007-02-02T20:56:00.000-08:00

Dad walked with a stoop into the room yesterday afternoon. He had just come home from adult care. "How'd it go today," I asked. "Terrible, they didn't let me play the piano. I was all ready to play, but they didn't let me play. Why do you think they did that?"

That conversation went on unhappily for an hour. He threatened not to go back if they didn't let him play. He wanted to call the center right then and have it out with the director. But the bottom line got down to his real desire. He wanted to go see Dar. Everything would be OK, if he could just go see Dar. He had devised a host of ideas as to how to make it happen. None were logical or possible, but they were a sure bet in his mind. Finally I had to lay the truth on the line to him. "You have an illness that requires you to be supervised on such a trip. It's just the way it is." "NO! I am not sick, I am healed and you know it!", was his answer. It always is.

From there his disappointment grew and wandered back to not being able to play, not needing to go to the center where he wasn't wanted, not having a life. Then he went to his room. By supper he never mentioned it again. This morning he was off to the center ready to play and came home again disappointed. He didn't play again. The center sent out its new schedule today. He will play on Tuesday. He doesn't understand. He physically can't understand. He went to his room unhappy.

We took him to our daughter's house for supper tonight. It wasn't quite what he expected. My wife and I were going out alone on a preplanned outing, (getting someone to watch him isn't a spur of the moment affair) and he was going to have dinner with our daughter and her husband. As we headed for the door the disappointment registered large in his eyes. He knows he is being "babysat", and it is a situation that rankles him. Why should he, the warrior who saved the western world, need a babysitter. He can't understand and the disappointment is clear.

On the ride home he said, "So, we are going to open my checking account tomorrow, right?" What would be a good response to that? Somehow he had taken a conversation that he had originated a few days ago, to which he had been given a firm and complete negative answer, and recreated a positive answer in his own mind. "But you said", he said with great disappointment. Life hasn't rolled his way too well this week.

There is a skit that dramatizes the descent into Alzheimer's and its many disappointments very well. One person sits in a chair alone at the front. He/she is holding a bouquet of flowers. The other person comes in and says, "Mom/Dad, I have been watching you now for the past many months as you drive. You don't really watch at corners as you should. You don't always stop at stop signs as you should. You are really becoming too dangerous to yourself and others to drive anymore." Then that person takes away a flower from the bouquet and throws it on the floor and leaves. After an interval that person returns. "Mom/Dad, the bank called me again today about your account. You have overdrawn again. It was something about a check you sent to a relief agency in Africa. They showed me your records for the past few months and you have been writing a series of very strange checks and depleting your resources. I am afraid that I am going to have to use my power of attorney and take over all your banking concerns from now on." Then they take another flower from the bouquet and throw it on the floor and leave. The person with the flowers clutches the remaining ones more closely to themself. The other person returns. "Mom/Dad, I want to talk to you about last night at the restaurant. You just kept talking to strangers and making them feel uncomfortable. The poor waitress didn't know whether to laugh or run away in fear. You have been doing this a lot when we go out to eat lately. I am sorry, but we won't be able to go out and eat anymore." They take another flower from the bouquet and throw it on the floor and leave. The person in the chair looks in despair at the growing pile of discarded flowers and the hugs the remaining few. The other person returns and says, "Mom/Dad, your outburst in church this morning really disrupted the service. When the congregation is done singing, you have to be done with them. When the pastor is done saying the Lord's Prayer, you can't go on repeating it out loud. You have been doing this more and more lately and it really makes the others in the congregation feel uncomfortable. We are not going to be able to take you to church with us on Sunday mornings anymore." They take another flower and throw it on the floor and leave. The person in the chair hangs their head and lays the other two flowers idly in their lap. "Mom/Dad, I have noticed that you have been dressing quite oddly lately. When it is warm you have on three layers of heavy clothes and when it is cool you go outside without even a jacket. Your clothes don't match anymore and I am not sure they are even clean. This just isn't like you, but for your own protection, we are having an aide come in each day to get your dressed properly and make sure your clothes are clean." They take the second to last flower and throw it on the floor and leave. The last flower lays alone and untouched on the lap. The other person returns. "Mom/Dad, the aide is doing a good job, but complains that you are not cooperative. I have come to the end of my options. We are going to put you in a home today." The last flower is taken and thrown on the floor.

Recovering or Not

2007-01-26T17:47:00.000-08:00

It has been two weeks since Dad was sick. He had it for only one day. Lucky him. He passed it on to me and I had it for a week. But he was over his in 24 hours. He lost 10 pounds in one day. That is 10 pounds he didn't need to lose. His Alzheimer's is already affecting his system and he was beginning to lose weight anyway. But he lost 10 pounds in one day. Then he didn't eat anything for almost 2 more days. He said he had no appetite, so he drank sports drink and stayed in his room. Altogether he lost 12 pounds. But it is not just how it affected his body that tells the real story.

It took it out of his mind as well. I was really too sick the next whole week to notice much myself. He had stayed in his room most of Tuesday, Wednesday and Thursday and I got sick on Friday and was out of the loop until the following Friday. I suppose everyone else noticed it right away, but they aren't blogging this, so I didn't notice it for last week's blog. But it is noticeable. He has had more slurred speech, more started and unfinished sentences, more confusion of days and activities than normal. His stomach flu took him on a downward spiral that he will never recover from. It accelerated what was already happening in his body and mind. That's the way it is with Alzheimer's disease. The mind will never heal.

He is back to the adult care center again after missing the week he was sick and recovering. They called this week to let us know that he won't be playing the piano as much there anymore. He just doesn't do it very well anymore. If he will sit and play slowly he still gets most of his songs correct. But he said to me the other day, "What fun is it to sit and play softly? Music is made to be pounded away!" And when he pounds away in double cut time he misses about half the notes, changes keys at random and changes the time signature to fit whatever is going on in his mind at the time. I haven't enjoyed listening to him at home for months. It is painfully loud and I seldom know what he is playing. The sad thing is he has no clue how bad it is. He wants to play for church. He is always asking my bride if she would like to take a Sunday off so he can play. No, NO, a thousand times NO.

He has also begun to lose things with more regularity. He lost so much weight that his wedding ring can just slip on and off. The other day at adult care it slipped off. They called us and asked us to describe his ring, which my bride could do perfectly. They said that they had found it but he said it wasn't his. So, we got it and told him we found it in the basement in his dirty clothes. He still said it wasn't his. His ring is very unique with special patterning that makes it easily identifiable. It is his ring, but that is beside the point. He says it isn't. His reason is that he thinks he should have a different ring that he remembers from years ago. He can describe it perfectly, but he hasn't had it for 40 years. That is a nasty mind skip, but it has happened since he was ill. When we picked up his ring they also gave us a number of other items that he had "lost" over the past several weeks. He hadn't brought them home because he didn't think they were his. He did wear a scarf home that he was unhappy with. "They just gave me this one today," he said, "but I have never seen it before." He had worn it to the center in the morning. He didn't recognize that nor the one that he had worn there daily for weeks and had left behind. This is the aftermath of his illness. It has shaken the stability of his condition that had been seemingly steady for some time. Where that takes us from here is now way up in the air. The one certainty about Alzheimer's is that nothing is certain. That applies to his future as well as his mind.

TMI

2007-01-18T21:34:00.000-08:00

Who is Joe? Joe is a man like most every other man. He is a man with a life history, a past with memories, a present with a variety of activities. Joe was a veteran of the Great War, a school teacher, a business man, a family man. He raised, or help raise, eight children and step children. He is a grandfather and a great grandfather. (Two of those great grandchildren are my grandchildren.)

Joe is also a man not like every other man. His memories are frailer. Today he may remember one of those names and tomorrow forget it. He will stare at a picture and say, "I know who they are, who are they?" Today he will tell me about each of his cousins. Tomorrow one of them will call and he will say, "Who was that?" The next day he will give family trees of each married cousin and where they currently live.

Joe is a man whose life is troubled and frustrating to himself and a challenge to others working with him. What to expect, which Joe will get up in the morning or come to the supper table at night is a constant mystery. Mid sentence he can move from Joe A to Joe B.

So, what does he remember and talk about the most? There was the trip that he took years ago to see lighthouses along the Atlantic coast. Each detail is etched in his mind. Conversations that the children had on the trip are repeated as often as the story. Then the sadness comes. None of those people keep in contact with him. It is a memory without a connection. I wasn't on the trip (but I could give you the itinerary). There was the trip to Seattle and Vancouver Island with the one person that he most wants to see and cannot. There were many trips that I never took with him, but others did, others who have lost contact with him. He shares the memories with me with the wistfulness of a happy time combined with a confused disconnection with the people he had those happy times with. He was a man who liked to travel, and those are his most often told stories. He remembers going places, and each place is connected to a person or people. To me they are just stories. To others they would be memories. So he shares with me stories that bring him as much angst as joy. That is the case with Joe, the man whose memories and mind are in a flux between the disquieting present the secure past.

How long can Joe stay like this? A year ago I would not have thought very long. The diagnosis wasn't good and a quick decline was forecast. Well, my bride and I have taken good care of him. The result is that he is healthy in body and stabilized in mind. He cannot back up and be independent. That is gone. And there is decline, but it is mild compared to the expectation. Others, including medical professionals, still say that he is capable of fooling many people that he has no problems if they talk to him on a good day. That means he could stay like this a long time. Stay being frustrated between two minds, between memories and reality, between desire and capability.

Sick and Recovering

2007-01-12T11:10:00.000-08:00

It hasn't been the most eventful week for Dad. He has been sick, I mean really sick. On Monday night he was up much of the night going to the bathroom and Tuesday morning he began vomiting. I took him to the doctor who sent him to the hospital for tests who gave him tests and a shot to stop the vomiting and sent him home. He hasn't been able to go to adult care this week, but mostly he has slept to get some strength back. Last night he had a full supper, his first real full meal since Monday. He seems much better today physically. He was certainly chatty at lunch today rambling on with a mix of old stories that were unconnected. Even when no one was paying any more attention, since he wasn't going anywhere and all the stories are old, he still sat there chatting away. He told us just before going back to his room that he can use all the music he had planned for last Tuesday when he goes back to "that place" again next Tuesday and play the piano. With that he waved good bye and left. That is his week.

Been a while

2007-01-05T10:27:00.000-08:00

Well, it has been a while. Right after the fish story my computer was hit by lightning. Boo hoo. Then, since I had received no feedback from the blog, I figured no one was reading it except the one person who kept telling me how depressing it was and why did I write it. So, when I got my computer repaired and was no longer in the habit of blogging, I stopped. But, over Christmas I was asked why it had disappeared. That's why. I will start again.

Dad had a pretty good Christmas. It was wearing on him and he was often bothered by all the company. He can, however, go to his room and have time to himself, and he did that a lot. His favorite pastime is to do "word search" puzzles. He got a couple of books for Christmas and has been busy doing them. Just before Christmas he had also won a big word search book at the adult care center he attends 3 days a week. He should be taken care of until February.

Dad is still at the adult care center 3 days a week. It had been up to five, but my bride and I went on vacation last summer for a week. During that week he stayed at my brother's house. It was a routine breaking event. When he got home he announced that he was never going back to "that place" again. He didn't mean my brother's house. Well, we did all that we could do to get him to go back the first Monday after Labor Day, and he agreed. But when he was there he told them he was never coming back again. He didn't either, not for a while.

It was in his mind, the one thing that is always in his mind, to go see Dar. That is his conversation daily. He had figured that if he didn't go to adult care, then obviously he could go to Chicago. Therein lies his faulty thinking center. There was no real connection between the two ideas, but he was convinced that if he didn't do the one, then he could do the other. Since his health care benefits are partially tied to going to adult care, this was not going to be good for him, but he neither understood or cared. Finally the visiting nurse impressed upon him the absolute need to go back, and how he is back 3 days a week.

He came home from the center on this past Tuesday so happy that he had met a new man who was coming and they had hit it off well. He was talking about what a good time he had had and on an on. At supper that night I suggested that since he had a new friend and was having such a good time, he might want to go back to going five days a week. He didn't hesitate a moment, but snapped sharply in reply, "I don't want to go any days. I want to go less not more." The subject was dropped. That is how it is. If you try to feed off of what he seems to be saying, it doesn't mean that he is thinking those things at all.

So, how has he been in general since last May? Well, according the Alzheimer's material we got, he should have shown significant decline in all areas. He hasn't. There has been decline in some areas, but none in other areas. He actually has learned some new things, which according to the literature and the seminars, is not supposed to be possible. He absolutely cannot take care of himself. He doesn't initiate things. But, if my wife gets him going, he can accomplish a good deal. With guidance he operates fairly well. We have a new message board by his room where my wife writes down his schedule for the next day before she goes to bed at night. It helps him get the one or two things on the schedule taken care of. Those items might include things as simple as taking a shower, which needs to be scheduled or it is not done. That's it for today. I will try to get back on next Friday.

A Fish Story

2006-05-29T16:24:00.000-07:00

There is a prelude to this fish story that really has nothing to do with fish or fishing. It has to do with becoming the parent of the Alzheimer's patient. Many people can't or won't become primary caregivers because of the role transition involved. The person with Alzheimer's becomes progressively more incompetent to care for themselves or make certain decisions. The child of that person either has to agree to become the 24 hour parent and make a complete role reversal or commit the parent to the care of someone else who will. Parenting of a child can be wearing, but it is a piece of cake to parenting an Alzheimer's patient. At a conference last week the speaker was using the comparison of a child to an Alzheimer's patient. The key distinction is that the child will grow and learn, but the Alzheimer's patient will only decline. There will be no new learning, no new mastered skills, no reasoned discussions or explanations. Indeed the skills that had been mastered will fade away. In many ways every day is new, what was told to them yesterday is gone for good. Reasoning is a two step process and they will often have difficulty with one step processes. As parents we used to say that it went in one ear and out the other. With Alzheimer's patients it goes in one ear and dissolves.

So, I took Dad fishing today. It was a long process to get going. The reels from last year were needing a little attention. My sons and I needed to get fishing licenses. A few other chores had to be attended to first, but finally we were off. We met my other son and his father in law and started drowning a few worms. The fish were biting, if you call 4 inch catfish fish. Then grandpa caught one. Well, if you call a 12 inch carp a fish, he caught one. Now, in his mind which is a child like mind, that was supper for 5000 people if we just had 5 loaves to go with it. I am not so old that I can't remember such high hopes. But, it was a carp, and only a little one at that. Now, the adult thinks ahead. If we take that home he will want to clean it, but he can't clean it by himself. Then he will want to eat it or nag my wife to cook it for him until she goes crazy. Of course, he would choke to death on the bones, or worse, insult her cooking of the fish. The humane thing to do was done. The carp went back into the river.

Now, I remember what my dad said about carp when we were children. "I don't want any of that *%#@)* fish in my house." But, now he is the kid, and he wanted it. He got mad and not a little mad. He compared my action to the recrucifixion of Christ (really) among other things. He put his pole away and wouldn't fish anymore. All day my boys had waited to go fishing, and now it was over. Fortuneately the boys are old enough to accept things like this, but it made them really not want to ever go fishing with grandpa again. Why, you ask, didn't I just throw the fish into the garden when I got home. 2 reasons jump immediately to mind. First, I had no idea he would react quite the way he did, upset, yes, crazy angry and pouting, no. Second, the anger would have been just as acute at home as at the river. Since I wasn't expecting quite the outburst that ocurred, taking care of the anger now rather than later saved postponing the inevitable and seemed quite logical at the time.

There is a final postscript to this fish story. Now Dad smells like fish. Only he can't smell it and won't believe that we or anyone else can either. He loathes taking showers or getting fully clean. Too bad for the people tomorrow when he goes and plays the piano for them. The flip side of being the parent to the Alzheimer's patient is that I can't physically drag him into the shower like I could a child. One, it is against the law and, two, he's too big. That is just part of the problem of parenting an adult, it ain't as easy as parenting a child. Compulsion is not in the vocabulary of the full time caregiver. They may be the child, but there is none of the natural acceptance of roles and what they mean. Now, excuse me, I must go see how I can detoxify him without creating a national calamity.

Miscellaneous

2006-05-14T19:37:00.000-07:00

"I am just an it" is a common comment from Dad. If he isn't telling it to me, he is complaining about it to someone else. It really rankles him to be an "it" and not a person. "Its" can't drive or have their own checkbook or mow the grass or whatever he wants to do today that he can no longer do safely. It doesn't matter to him that he can do things, because those don't limit him and he doesn't give them a thought. He only dwells on the negative, a fact that I listed in a blog some time ago.

Last week I went to a conference for ministers dealing with congregational members with Alzheimer's. It was good. One of the speakers pointed out that one great frustration with Alzheimer's patients is that there is absolutely no reasoning with them. You can try to reason with a child, can reason often with an adult, but although they are an adult and act childlike, we can't reason with them. Therefore there is no out in the issue of being an "It". I have tried, but it doesn't work. He can't follow a logical argument to its conclusion, only to its beginning.

Does he really do things of value? Yes, he plays the piano three times a week at the adult care center where they really love and value him. He often helps dry the dishes after meals. Not everyone else is jumping to do that job. Honestly I haven't found much more for him to do. He doesn't have good balance, he doesn't make wise choice in using tools and doesn't use them safely, he argues about the process of any job being done and the list goes on. My brother was aksing me if I had any suggestions about what more Dad can do, and I really don't. He does like to pick up sticks and paper that come into our yard. The downside is that our city has a strict garbage code. No yard waste in the garbage can and no garbage in the recyclable or yard waste bin. He can't remember those things and so when he works outside I have more work to do sorting things out. Basically any task he does beyond the two I mentioned only create more work for me, and I don't need more work.

My wife and I went to a nursing home the other day to check it out. Maybe it's time to do so, we thought. Well, the thought was largely precipitated by everyone else telling us we are burning out taking care of him and now would be a good time. Well, we went and came home again and he is still here. We can hang on a while. He certainly would not have fit into the Alzheimer's unit at the home here in town. The people there had little or no cognitive skills and he still communicates fairly well in one on one conversations. He does have hard time finding the right word and using it, but we can work around that. He still plans his music program for the adult care center which demonstrates a lot of cognition for a single task. No, he wouldn't have been even a little happy in the unit.

At the conference the other day I asked others about his particular symptoms. He is unique. The professionals there had never met anyone who is in his late a stage of the disease who was still in complete denial of having a problem. That creates more headaches for us. It was nice to hear from them that it would create more headaches for us because of his attitude. That was bad news that was almost comforting, because it at least supported the burnout we are feeling with him. Also no one else had ever had a patient who prays for himself to be healed and then thinks they are. None of the professionals had ever encountered anyone who even had asked to be prayed for for healing, let alone hold their hand on their head, as he will do, and pray for themselves. They said that that would add to the difficulty of our caregiving and wear us out. It does.

Their solution? Put him in a home. What kind of home is unclear because they also acknowledge that he doesn't fit the profile of the Alzheimer's unit. He needs intermediate care, but that costs a lot of money, the kind derived from the sale of a home or a large retirement fund portfolio. Intermediate care can cost $150 to $200 per day and has multiple caregivers. He has no money, so it is either a home where he won't fit, or our home where there are just two caregivers. Sometimes I begin to wonder who has more sunshine and who has more descent, him or us.

Who's on First

2006-04-14T19:09:00.000-07:00

There is an old comedy routine about who's on first. No matter where the routine runs, it always comes back to the question, "but who's on first?" I had that kind of conversation today with Dad, but he wasn't trying to be funny, he was trying to get some information, but it wouldn't process and we always ended at the first place we began.

What was frustrating for him, and me, was that this related to music. That was his forte and in some ways still is. I wanted him to transpose a piece of music from B flat to A flat. That is down a step on the scale. He said it would ruin the song by raising the highest note 4 steps. I said it wouldn't and he said, "what wouldn't?" and I said transposing the song, and he said, "what song"? This went on for a while until he understood it wouldn't raise the high note, it would simply bring the two songs I was working with into the same key, the other song already was in A flat. Finally he sat down to do the transposition, I probably could have finished it alone by then, but I wanted to give him something to do.

He had both songs in front of him then looked at me and said, "the song is already in A flat". I know, I said, that is the other song, this is the one you are trasposing. He looked at it and said, "but it is already in B flat". I know I said, but you are going to put it into A flat. "But that will raise it 6 steps", he said. No, I said, it won't. He got a piece of paper and said, "Now which song?" and I showed it to him and he said, "But it isn't in A flat". I know, I said, but you are going to rewrite it into A flat. Then he picked up the other song and said, "But it is already in A flat". That is not the song, I said, putting it aside. This is the song. "But it is in B flat already." I don't want it in B flat, I want it in A flat like the other song. He reached for the other song. "But it is already in A flat."

This went on for a half an hour until he assured me that he understood that I wanted the song in B flat put into A flat. I went into the other room and came back and he hadn't started. "What song do you want done?" I showed him. "But if I put it in A flat it will raise it 2 steps and it won't sound right." No it won't, it will be fine. He got to work and I left. When I got home he proudly showed me that he had copied the song in B flat into B flat on the paper. But you put it in B flat, I said. "But that is what your wife wanted," he said. I asked her to tell him that wasn't what she wanted, and she did and he said, "But it will raise it way above the treble cleff if I put it in A flat." No, it won't, I said. Do you want me to do it, or do you want to do it. "I want to do it". So, he did. An hour later a nearly perfect transposition was complete into A flat, a step lower on the scale.

Who's on first? There are days when nobody is on any of the bases.

The Slide

2006-03-27T17:36:00.000-08:00

Dad has been on a medicine that is supposed to help slow the process of Alzheimer's. The material that I have read on the topic states that it works for a while, but there comes a time when it can no longer slow things down. That would seem to be what we are seeing these days. Yes, last weekend he had a good day. He went out of town and gave it his all. But that was the first good day in several and he hasn't had a good one since. We use to count on clear days being about 4 of 7. That is down to about 2 of 7. That is a remarkable decline in 3 months.

He still amazes me that he can fool people he seldom sees, but he can't fool those he sees all the time. Our daughter was over the other day, actually she is over every day, but she was over and commented about him. "Grandpa is really getting bad," she observed. I inquired in what way. "He is slurring his words much more than before, unable to find the right word anymore and making up any old word to substitute." If you have kids you will often hear the next person comment on how big they have grown and you are still looking at the same little person. It is that way with Dad. I am with him 24/7 and I don't notice as much as my daughter did. Well, I started to look for those things and it took about 10 minutes of talking with him to see them all. But, I wasn't convinced, so I asked my son, who is also over almost every day, if he saw any noticable decline. He had. He could name them without prompting.

Being concerned that the problem may be related to other health issues we asked the visiting nurse. He is very healthy. That is good. He came home fromt the adult care center where he attends twice weekly and told us he had lost 10 pounds. I got concerned and called them. He hadn't. He just was 10 pounds confused. He had actually gained a pound. He doesn't hear well or process well what he hears. So, he is healthy and in a decline, a real slide.

To all of these changes he is completely oblivious. After the visiting nurse checked him and gave a good report, he told me he would like his car and driver's license back again. The next day he asked if we would mind if he got 10 new piano students and had them come to the house. And so it goes from day to day. Unless he doesn't get his way he is happy as a lark, and even then he forgets much more quickly that he didn't get his way and he is back to happy again. There have been no more complaints about adult care. He doesn't want to go more often yet, but he is happy to go twice a week now and offers no complaints before or after any more. That is progress of a sort, but in a negative direction for him.

One other thing he is demonstrating more is a sense of humor. Unfortuneately, it is often a very mean sense of humor. He relishes making fun of others, mostly me, and then he gets a big laugh. But he has put his torch to more than just me on occasions and always finds it funny. This is a side that hasn't been seen up until now. He is like a little kid daring to say naughty things and reveling in each moment of it. A child can be broken of that nasty behavior, but not an adult Alzheimer's patient. Anyway, that is the scoop for now. The slide has accelerated, at least for now, and we are no longer on that plateau that I wrote about just a short month ago.

Sometimes Amazing Things Happen, Sometimes They Don't

2006-03-16T08:42:00.000-08:00

Two weeks ago Dad had a busy weekend. He spent a day with my brother and then a day with my sister. They both thought he was doing well and clearly. Those are the amazing days that make me seem the biggest liar on earth. When my kids were little they had foods they loved and foods they detested. When we would go out people would often ask us what our kids liked and we would be honest. Then the kids would turn around and fill their plates with just the opposite and eat it all. Kids and Alzheimer's patients can make you look really bad really fast.

Dad hadn't known what I did for a living for over a month. Each time we would talk about it around the house he would ask what that was and then say, "Why haven't you ever told me about this before." A month or more of that and it seemed pretty clear that he had actually forgotten all about it for good. When my sister was here with him for a day I had a meeting to go to for work. When I got home and was telling my sister about it, I told her it had been a big success. Then my dad chimed in and told her exact numbers and figures related to my job. A job, I might add, that a day before he was completely unaware that I had.

There are periods when he seems to absolutely compel himself to being alert, aware and as normal as any well informed 82 year old man. Sometimes amazing things happen. Then there is the next day. That condition cannot be maintained. I don't understand it, neither how nor why it works that he even can be clear, but he can't keep it up. When everyone else is gone the bubble bursts and we have a confused man again. The day after my sister left I asked him about my work and he told me he didn't know about it.

It was his birthday this week. He really looked forward to turning 82. He talked about it, thought about it and worked himself up into quite a clear state of mind about it. The morning of his birthday he started opening cards. But he didn't know who they were from. Grandchildren, children and people he sees regularly were complete blanks. He will recover most of those people, at least for a time, by the next hour or day or so, but they will fade again. Sometimes amazing things happen, and sometimes they don't.

The Plateau

2006-03-01T21:07:00.000-08:00

Wow, it has been a while. Mostly because there has been nothing of real merit to share. Dad has hit a plateau. He has days when his confusion is more pronounced and days when he is clearer. He hasn't had any great outbursts of anger that had been more regular. He talks, but it is almost always the same topics, the same stories, the same issues. The other day he called me "Dad", but it hasn't happened since. He doesn't seem to have any daily confusion on who I am, but he has forgotten what I do for a living and will remark each time we talk about it, "why, that's nice, why haven't I ever heard about you did before."

On the plus side, he has started back at the adult day services. I told him he was actually receiving some benefits for his volunteering, which he is in a sort of round about way, and so he is back, not happily back, but back none-the-less. Other health issues related to age keep popping up and keep my wife busy taking him to various doctors. Last week he had a cataract removed. He never even noticed his sight was bad, but the doctor said it was a large cataract and off it came. Dad came through it without a problem, just like the skin cancer surgery two weeks before that. The calendar for this month already has three scheduled visits to doctors or dentists. All in all things are settling into a routine that is less dramatic, but no less wearing than what we have experienced.

Perhaps the greatest of current problems is his inability to follow a conversation. He picks up on a single word and then starts in on a response to a word that really didn't have anything to do with what was being discussed. We all stop for his time of speaking, scratch our heads at what prompted it and find that we often want to talk less among ourselves as it generates fewer random conversations on his part and fewer interruptions to our own conversations if we just don't have any. Speaking at a pace that he can follow and a volume that he can hear is a very tiring process and discourages too much dialogue with him. Even direct dialogue at his pace one on one can get difficult all the time. Others who only see him occasionally don't notice it as much, but then if they did it 24/7 they would better understand. But that is Dad, that is his life and we are blessed by God in ways that we don't really understand yet in being able to be a part of that life and making it as meaningful for him as we can.

I don't know if there will be a lot of new posts as long as he is on his plateau. If something interesting arises or I have an exceptional need to vent, then you will find it here first. Thanks for reading along.

Square One or Deju Vu All Over Again

2006-02-11T08:26:00.000-08:00

I think we have been here before. NO! I won't go there again. Those people have problems and I don't want to be around people who don't know what they are doing! We have tried to point out that he is a volunteer but that hasn't changed his attitude. We have tried to remind him of the fun he had said he was having, but that hasn't changed his attitude. Now that he can't go to the senior center and won't go to "volunteer" at the adult day care center, he is back home with us 24/7 again.

This time it has about broken the bank of reserve strength. Jac and I have about run out of steam. We had been so happy to have him go someplace twice a week. Now he is back and grumpier than ever.

At the end of breakfast dishes he gets out the cribbage board and cards. Jac no longer sits with him to play in the morning. He is frustrated and goes to his room. Jac tries to get things done around the house but feels guilty about putting him off. After lunch out comes the board and cards again. Frustration again for both. Someone who doesnt' understand what is going on with him suggested we make a schedule so he will know when he can play and when he can't. I think I wrote something about suggestions in this spot a month or so ago. They are about as welcome as a bad case of the flu. The follow up question always get around to, have you tried my suggestion yet? Only more frustration for more people. Schedules are about as effective for an alzheimer's patient as for a 2 month old child. They set their own. Period. Now, if all those with suggestions would just change their suggestion to "can I come and take your dad for a day?" I would change my opinions about suggestions. I might even smile broadly, laugh hilariously or something roughly akin to that.

How about a nursing home others have asked. Right now he is pretty aware and alert about 3 days a week. I mean that on those days it would take some time with him to see any signs of the disease. Other days it takes just long enough for him to open his mouth, or it takes just a few minutes watching him go through the motions of the day to see it clearly. He isn't physically violent, he doesn't wander from the home and he doesn't soil himself. A home seems to me a bit over the top at the present. I just keep reminding myself that others are doing this and we can too. Others remind us also that they know what we are going through, they share their own experiences (often much worse than ours) and that really helps the day along.

Back in the Saddle

2006-02-06T09:45:00.000-08:00

His cold is over and he is back in the saddle again. More like back on his high horse again, but more about that after bit. He made it to his volunteering both days this past week. Beginning tomorrow he will ride the bus both ways, not just home. Is there an advantage to that? Two more hours of available time twice a week. We usually drive him over at 10, but the bus will pick him up at 8. We won't have to have two cars available on those days so that will also help. Is everybody happy, well, I should say not.

That high horse has been bucking a lot. I know that he generally can't remember tomorrow what is said today, but he is actually surprising about that sometimes. If it is bad he usually does remember it. Neutral or good information is easily lost. What category to place our converstations a few weeks ago into is perhaps difficult. He is arguing again about tuning pianos. Did he forget that it is over, not exactly, he simply says it never was just because he had not talked about it for a week or so. Did he forget that he can't have his own apartment alone in Chicago? Yes. Score one for forgetting the bad news. That may be a first. The downside, I had to tell him again and go through his anger all over again. A lot of anger.

Other bad news he forgot was that he couldn't go to the senior center anymore without a companion. The visiting nurse had told him that 2 weeks ago. He forgot. Since it was bad news and he likes to harbor bad news, I was surprised. Down side. Angry about that all over again as well. The upside had been in effect for 2 whole weeks. He thought that he was playing the piano at the one place on the same day that he used to play cards at the other. Therefore he was accepting the fact that he couldn't go play cards. For a flash in his mind he somehow remembered and BOOM. But after the blow up he has forgotten again. Upside for a while.

There is one ride I always avoid at the amusement park, the roller coaster. The anticipation of the drop bothers me more than the ride. That may be the hardest daily part of the care for Dad. There is always the anticipation of his next big blowup. The ride is getting faster, the drops (blowups) bigger. The anticipation of what he may decide to do to get his own way becomes more accute as he becomes unhappier with the realities of what is happening to his life. At some point he will progressively cease to care and the ride will come to a stop. But that is a ways away.

Not Much

2006-01-28T08:35:00.000-08:00

No, I haven't forgotten how to blog. The thing has been that there hasn't been and remains not much to blog about. Dad has been sick. 81 year old sick is different than 50 year old sick. A cold isn't just a cold. He was upset and wanted to go to the hospital with his cold last week. I was rather astounded as most people don't think of going to the hospital with a runny nose, but he did. The hospital told him not to bother to come in as they wouldn't give him a room. The doctor also told him to wait it out when I took him to see the doctor on Monday. The cold has hung on, however, and he looks and sounds not well. Progress is being made and he says that he does feel better. That's good. He had a second surgery on his face this week to completely remove the cancerous spot. That has added to the week's difficulties. He missed both days of going to volunteer because of his illness. Hopefully next week will be more fulfilling for him.

The Volunteer

2006-01-19T20:08:00.000-08:00

What gives most people, men anyway, a sense of identity is work. What can't the Alzheimer's patient carry on successfully, work. What do they still want to do. Work. It is a mantra of Dad's that he wants to be useful. If you are a follower of the blogs, you know that can be dangerous to him and things he works with. Last Saturday he wanted to be useful so he went out and took off the dead stalks on the hollyhocks. Only, he lost his balance and fell down and hurt his hand. We had it checked out and it is nothing serious. It is, however, something that can happen when he wants to help.

So, what can he do? Well, he can play the piano. The fingers still have their touch. I am rather amazed coming from a musical family that playing the piano is really a big deal. Apparently not that many people either play or want to offer their skills for the enjoyment of others. How to connect his skill to his need to be useful? Enter the crisis. He can't go to the senior center anymore, although he doesn't know that. But, we have to get him out of the house so he doesn't go stir crazy. There is the other place he went that one day, the adult day care center that he felt so bothered by going to. He is functioning higher than them, in his own mind if not in total reality. Could they use a piano player? YES!!!

On Tuesday I took him over to see about "volunteering" at the center. He was an immediate hit with the clients. He can volunteer to play for them two mornings a week and then stay to "help" the other clients with their needs the rest of the day. He is getting the care that he needs in an environment that is good for him and is able to feel totally useful. YEAH! Today was his first full day and aside from missing my wife's good cooking for lunch, he had a good time. There is another advantage. He thinks it's on the same day as he was going to the senior center, and I am not going to tell him otherwise, but on the downlow, it isn't. He doesn't know, but he does know that he is now the useful man, Joe the Volunteer.

The Other Shoe Dropped

2006-01-13T14:45:00.000-08:00

Well, it happened. The senior center informed us today that Dad can't go back on his own. His dementia is considered a liability risk. They are not designed to monitor and assist. As noted in an earlier update, it is for people who can operate independently. He really can't. He can follow simple directions, like get in line for lunch, or deal the cards, but he can't initiate the actions by himself. I arrived early the other day to pick him up and watched him play cards for a while. It was quite sad. He could follow suit, but not pick up on the whole idea of what was taking place in the game.

Earlier I had talked about the potential for his playing taps for military funerals. Whereas he had seemed a little interested in the idea, he never actually made any effort to follow through on preparing for doing so. He got his trumpet out twice and played for a couple of minutes and put it away. He said that was all he could do for the day and didn't want to hurt his lip. Well, today the American Legion called and wanted him to play. I had to make my apologies and explain that he wouldn't be able to do it afterall. It had seemed such a bright prospect, but he just doesn't have the faculties to do it, and I have to accept that.

Today he had the lesions removed from his face. It was quick and simple and he experienced no pain. The downside is that he is confused. He now thinks that the cancer on his face was related to his alzheimer's and that the removal of the cancer also means that the alzheimer's is now also gone. That is presenting its own complications since he left the doctor.

Final thought for today. Dad has gone down hill considerably this week. It has been almost agonizing to watch. It is like he stepped off a ledge and fell to a lower ledge. Abilities, thoughts, reactions have changed in big ways. But tonight we had a great heart to heart talk. He won't remember tomorrow, and that is too bad because we discussed some very important things and came to an agreement on all of them. As I told him, each day will become an exciting new adventure of territory he hasn't covered before. The future is bright the prospect of great new discovery for each day of the rest of his life. Sunshine and descent.

Same Song, Second Verse

2006-01-10T14:05:00.000-08:00

Well, where to start. Dad is upset. He told the Senior Center he would tune their piano, but he doesn't have his tools, they are in storage, and so he can't. Even if they were out of storage, he couldn't, but he doesn't accept that. That makes me the bad guy again.

Today he had to go to the dermatologist. He has small growths on his face which she thinks are cancerous. Nothing serious, they simply need to be taken off. Jacque took him today and he didn't want her to go in with him. After a few minutes the doctor came out and asked her to come in. Dad doesn't communicate on someone else's plane. When she asked him questions he basically ignored her and talked about what he wanted to talk about and couldn't understand the things she was saying. He wasn't happy that Jacque ended up in the room, but that is just the way it is. Even with Jacque in the room he still tried to stay on his own thoughts and interupted the doctor to have his say on anything that happened to be on his mind. That was me, of course. I am stealing his money. He can't understand it going into the bank with direct deposit. He doesn't want it in the bank because the bank steals it too. That seems a common alzheimer's thing.

We went to the library today because he asked to go. He always likes to look at the World War II books. First we got him his own library card. We had to use my identification to get him a card. He told the lady that I looked so bad in my driver's license picture because I had just gotten out of jail. Then he told the lady at the information desk that he wanted some books. He said he wanted book on ....... not World War II, but on names. The librarian looked at him curiously, but of course he couldn't explain it better than that, and I had no idea what he was talking about. I asked him if he didn't want to see some books on WWII and he looked at me like I was an idiot. At that time I certainly felt like one. It was turning into a delightful trip. He had asked Jacque for some books on alzheimer's, so we asked for some of them as well. While the librarian was frantically trying to figure out what kind of books on names he wanted, Jacque went and got him some books on Scotland. The librarian did find some books on names, not what he wanted, but no one is quite sure what he wanted and she gave him two books on alzheimer's. On the way to the reading table he stopped by two kids playing chess and told them they were doing it wrong. When I got him to his reading table he was well supplied with books which kept him occupied for about an hour.

In one of the alzheimer's books there was a series of pictures on the changes in the brain. He told me that after looking at the books he knew that he didn't have whatever it was that they were about. But, then he showed me the pictures of the brain to prove it. I reminded him that the doctor had taken pictures of his brain last summer, something which acknowleged that he could "sort of" remember doing. I told him that that was how the doctor knew, in part anyway, that he had alzheimer's. He looked at me and looked at the book and read the subtitles. Normal, mild, moderate, severe. He looked at me again and said, "how do they cure it?" They don't. "Oh," he said. "Well, I don't have it, because God just healed me," and he closed the book. That ended our trip to the library for today.

Music Man, Etc.

2006-01-05T18:34:00.000-08:00

It has been suggested that I am repeating myself in this blog. Perhaps, but when it is repeated in Dad's life and mind over and over again, it keeps coming up here as well. The dots all connect, not so much in his mind as in a pattern that can be seen. The music man is part of the pattern.

Today he has really been on the issue of getting his piano tuning tools out and getting back to work. That his piano tuning jobs had fallen way off in the past couple of years is something, along with the rest of the past couple of years, that he simply can't remember. He did tune pianos for many years, and he is living back there somewhere in the glory days.

He wanted to tune my piano today. That isn't going to happen. The last time he did it was a complete disaster as many of his more recent clients discovered. Well, he kept at it and at it until finally he asked, "what did I ever do that was so bad to your piano that you won't let me tune it now?" Now I had been honestly trying the only three answers that work with alzheimer's patients, yes, ignore and change the subject just as much as I possibly could. But he kept at it, so I told him. He looked shocked, dismayed, hurt, offended and then he began to apologize. He would never do that again. Ever. Well, I watched him tune an old piano just a month and a half ago, and yes, he would.

But his feelings were hurt. He wants to be "worthwhile" and says that sitting around is not being worthwhile. So, back at it he went. He wants his equipment so he can do a job. My job. Never mind that we had resolved that issue 5 minutes ago. 5 minutes ago is gone, kaput. He wants to tune my piano. After all, 2 octaves are way out of tune, he says. By the way, did I say that just yesterday he was telling me how nicely my piano sounded? But that was yesterday, and yesterday's gone.

On a positive note, he does still play well, usually. He plays much better from memory than from a book, but even then it is OK. He plays the piano for the senior center and they really like him to do it. He goes there at least once a week, twice if possibe, and he plays for about an hour each day. Oldies from their generation and then a selectin of hymns. It is an opportunity to be useful. I just have to make sure he doesn't offer to tune their piano and that they don't accept if he does.

He also wants to advertise for new piano students. Good idea because he still knows his stuff. The Music Man's memory of theory and practice is locked in for a long time to come. (An alzheimer's nurse says that it may be the last thing that will go.) But, he wouldn't remember what day their lessons were on and quite likely what they covered in the last lesson. So much that he can do combined with so much that he can't. So, we have the sunshine and the descent.

This and That

2005-12-30T16:27:00.000-08:00

How's it going with your dad is becoming a common greeting. That's fine, since he lives with us and we are concerned daily with his welfare. The only problem with the greeting is that I don't always know what to answer. Do they really want to know. I'd write a book. Do they want the short version. That is easier.

Short version: Up and down. We are reminded by the "experts" and those that write the material on Alzheimer's that the downs will keep getting lower down and the ups will keep getting less high up. So, up and down is relative. Up and down today is different than up and down 2 or 4 or 6 months ago.

What are the big issues this week? Well, he is healed. Ask him and he will tell you. His one prediction for the new year is that everyone will see that he is healed. Jacque asked him how they will see it. Because I am, he said. And so denial continues to dominate his mind over almost anything else. Every day he tells Jacque that the doctor was so wrong in what he said and that the nurse who comes doesn't have a clue. That one thought dominates almost everything he thinks or says. In the middle of totally unrelated conversations he brings it up.

So what? So, because he is healed he can drive again. Live on his own again. Manage his own affairs again. Because he is healed means that not only the doctors and nurses are wrong, but so are Jacque and I and everyone else. Take 40 three year olds whining at you for candy every minute: why not, why not, why not, why not, why not, why not. Babysit them 16 hours a day, every day without end: why not, why not, why not, why not, why not. Now you have an idea of, So What? But it doesn't really scratch the surface of what it is like.

Today he got mad, not a little mad, but angry mad. He was telling David Jr. about the great deal he has on health insurance and how it only costs him $X hundred per month. Then he said that he only had to pay part of that, about $Y hundred per month. I said, yes, Dad, good deal, you only have to pay so much, and I gave the amount which is less than what he was saying. That should have brought a smile, but it didn't. I don't either, he raged, I only have to pay $50 a month. I was stunned and blundered big time. No, I said, as you were telling David Jr. just now, you only have to pay so much per month for your insurance. Then he blew up. I never said any such thing to David just now. I know how much I have to pay. I haven't lost my mind yet. I know that we are not supposed to contradict him, he has his own reality and we have to live in it, but I thought maybe he didn't understand what he had just been saying, so I erred even more and repeated myself. There was no positive point to that as I only too quickly discovered. He hasn't dropped the subject since lunch time.

The teacher in me has got to go. Accuracy is irrelevant. Correctness is immaterial. I have a new book to follow. There are only 3 acceptable responses to an Alzheimer's patient. 1) Yes, Dad 2) ignore what was said completely 3) change the subject. That takes lots of practice. I haven't mastered it yet, but I'm working on it. Jacque, fortuneately is an ace.

Christmas

2005-12-26T15:16:00.000-08:00

It has been a few days since anything new has been here. Sorry to those who read this and look for something new. But, it has been Christmas and I have waited to write an assessment of how it all went.

It went well. Amazingly well. We have had all our children (6) here and their spouses (3) and grandkids (2) for some or all the time since the 20th of December. We have gotten to the point where we accept that Dad doesn't know very many people by name so that hasn't been an issue. He has been basking in all the family being together. He remarks often that we have all 4 generations together just as it should be for an old fashioned Christmas. Last Saturday my brother, his wife and one daughter and her husband and baby were here. That made all three of his great grandchildren that he has been able to see and play with over the holidays. Again, events, not names are what have thrilled him.

It has been amazing that he almost seems better for all the commotion. But, right when you begin to think, oh, wow, maybe the diagnosis was all wrong and he can return to his normal life, the truth trips up that dream. His confusion rears its head in strange and unexpected ways and crashes the optimism back to earth. Never-the-less, it has been a grand Christmas time and he has enjoyed it immensely. We are all happy.

This and That

2005-12-20T09:37:00.000-08:00

Dad loves to talk about his relatives, cousins, aunts and uncles, etc. He will pull out an old picture and and give a complete geneology for the person plus a complete list of interesting anecdotes about them. So, I was really excited the other day when his cousin called. I chatted with her for a while and then asked him if he would like to talk with her. Who? I don't know that person. But he talked and then he remembered, and then he forgot. The next morning I asked him what his cousin had to say. Who? They called here? Show him a picture of her and he will tell the whole story, but he doesn't know she called. If it happens today it is generally gone tomorrow. Then again his mind strangely latches onto the most obscure things and they cling like grass stains.

For years he would visit his sister and my cousins and they always played pinochle. Some people tell of their great achievements in war, or business or sports, but my cousins tell of their great achievements at the pinochle table. My dad played with them for years whenever he went to visit. One of my cousin's greatest exploits came in a game against Dad. Now we take Dad to the senior center to get him some outside activities. They play pinochle there. He insists that he has never played that game before and gets adamantly angry if I tell him that he played it for years at his sister's house. One would think that an activity engaged in repeatedly and often over a period of 25 years would be one of those things that would stick, but it doesn't.

That is rather the frustrating thing about the whole disease. We never know what he might or might not remember. Some important and unimportant things seem right at his finger tips while other things, important or unimportant, recent or old, seldom done or often done, are gone like the mist in the sun. It is always just enough to keep us off balance when planning for him or talking with him.

The Dangerous Solution

2005-12-17T08:20:00.000-08:00

What is the best tool for fixing a toilet? What is the best tool for putting a handle on a chest? What is the best tool for repairing a loose ceiling tile? If you answered a sharp knife to all the questions, then you should get yourself checked out at the doctor. Yes, that is Dad's solution.

When he first arrived I wanted him to feel an important and helpful part of the family. I knew that the move was abrupt and the changes in his life made him feel unimportant. So, I gave him a small task, one of the sort that he had done for 50 or more years, a five minute task. Well, an hour later he was working away with a knife to reshape a whole in the side of the chest he was working on to put in a new handle. I had given him all the tools necessary to do the job, but he had sought out a knife to do it "right".

Perhaps I am a slow learner, or perhaps I really do want to make him feel useful, helpful and important, but I gave him another simple job a week later. This is one that he has done many times over the years. I needed a new handle on the toilet. One tool was all that was necessary, a pliers, which I provided. An hour later I found him in the bathroom with a knife cutting away at the plastic nut holding the handle in place.

This week he noticed a loose ceiling tile in his bedroom. He came and said we should fix it right away. The best tool for that job, he said, is a good sharp knife.

What is the solution to the problem. Don't let Dad fix anything around the house. Don't even mention a small project that needs to be done. The problem with that solution?
A. He constantly wants to do things. Right now he wants to rewire his new bathroom.
B. Try guarding every conversation you have around the house and see how wearing it can be.
C. Even letting him help leads to the knife problem and adds 2 to 3 times to the length of any job. That is right when I have 2 to 3 times less time to do things becasue he is here.
D. It reinforces in his mind his own sense of increasing uselessness and creates associated tensions.
E. I now have to deal with D.

There is an upside. Unless he is doing a "project" he doesn't care about knives at all. Oh, the small things that we can be so thankful for.

And my heart clutched

2005-12-16T16:27:00.000-08:00

It was senior citizen center day again today. Dad was looking forward to it. Unfortunately, he had eaten too much rich food yesterday and I had to make a quick run to the pharmacy for imodium before he could go. He set off in great spirits with some music to play for the others. When I arrived to pick him up 3 hours later, I was motioned into the director's office. We all love him so much, she told me. "But" . . . . My heart fell. But, he can't operate without assistance or supervision. That, she assured me, is not the job of the senior center. It is for people who can care for themselves.

He does there what he does here. He stands around and waits for directions. She gave him a choice of things he could do, but he couldn't make a choice. When she steered him to the piano, he entertained the others for 45 minutes and they were all happy. But, he couldn't get his own lunch by himself, an expectation they have of everyone. Each hand of cards must be assisted by someone. One nice lady that he plays cards with said to me, he has a memory loss doesn't he? He can't remember from hand to hand how it is done. Also, he lost his lunch ticket. They fed him anyway since they know he had one. Can he go back? Yes, but maybe not for long. The director said that she would try to keep an eye on him and assist him as much as she can, but she has 60 other seniors who want her attention so she can't always be assisting him.

This creates the problem. He is too capable for the adult day care center. He isn't capable enough for the senior center. When he is here, he is just like at the senior center. Jacque is the best there is. She guides him through his day, keeps him active doing things that are neither beyond him nor beneath him. But, she can't do that every hour of every day. The senior center had been our great hope. It would give us a break of 3 to 4 hours twice a week. We hope that it will remain that way for at least another couple months, but now there are no guarantees.

Tune in tomorrow for "The Dangerous Solution"

Snowy Days

2005-12-12T17:35:00.000-08:00

Not much has really happened the past couple of days. Dad has worked on his puzzles which he still likes to do. He isn't real good at it anymore, but he plugs away. He has been calmer than most days last week. The car hasn't come up, nor has going to see Dar. Tomorrow he is looking forward to a big day. Larry is taking him to Illinois for 3 days. He will get to stay with his friend Bud in Winnebago. Oddly he hasn't mentioned that to me today either. He has just been really mellow.

Introduction

2005-12-10T15:09:00.000-08:00

This blog is intended to give an occasional update on Joe. Joe was diagnosed with Alzheimer's on Halloween Day, 2005. On Saturday November 5 he moved in with us. The first week was devoted almost entirely to getting some of his financial affairs in order. Everyone needed a copy of the power of attorney to do business with me instead of him. During this time he was not a happy person as he no longer had his car, which I had taken to my son-in-law's house, and he began to feel the real first pinch of his changed life. By the end of the week Jacque and I were at the point of wondering if we had made a horrible mistake. Nothing related to my regular work had been done in the crisis moment of getting him settled in and getting a handle on his finances.

As the weeks have passed the weight of the responsibility began to mushroom. My office was dismantled and became his bedroom. I still don't know where most of my things are that used to be in the office, things I am beginning to need. Then we put in a new bathroom next to the office so he would have his own bath with less worry about his wandering around in the night. (Fortunately, this hasn't happened, but it is coming.) Of course, all this time has been filled with constant complaint and denial of his condition and argument about wanting to drive and go to see Dar in Illinois.

The visiting nurse, a specialist in dementia came and gave him a very thorough follow up exam to what the doctor had given him. She verified the diagnosis and put him at early level 5 on the 7 level scale of Alzheimer's. That means that he can no longer drive, handle his finances or live successfully independently. It has now been a month and one week since he came. Each day is a day to wake up in dreaded anticipation of what he will do today. Some are peaceful, but not many. He still argues about driving, curses the doctor, chafes at the restrictions and blames it mostly on me, the "gestapo" of his life.

This past week we did try a day at adult care, but that was a disaster. He was much more functional than the others and knew it. He felt humiliated and insulted and extra angry. On Friday, yesterday, we took him to the senior citizen center where he could just hang out and play some cards. He liked it better. But, Jacque and I had about 24 hours of things we were behind on and only 4 hours to get it done. No, it didn't get done in 4 hours. Work has been slow where Jacque works and she has gladly taken the days off all week to get some things done, but somehow it never happens. When he is up, he is almost always in need of attention. When he goes to bed, we are too tired to finish the unfinished things.

I have been reading "The 36 Hour Day", a guidebook for primary caregivers of Alzheimer's patients. It has been helpful. One of the best parts is what it tells us to tell all the other people who aren't primary caregivers when they have suggestions. "That's a great idea, when are you going to come and do it?" Since noone but other primary caregivers have a clue what are life has become, suggestions of what we should do are welcome only if the suggester is the one who is going to do it. We'll glady take words of encouragement. Words of criticism will always hurt but will be generally ignored as the words of the ignorant. A day or hour of relief will always be welcome. Mary gave us 4 precious hours last night so Jacque and I could go out and eat and just stay away for 4 hours.

Today is the first day of the blog, and I felt it necessary to give a little background. Today we started on cleaning up after the construction of getting his bathroom in. We laid new carpet, put in a new closet, put the finishing touches on the bathroom. Pete gave us 3 hours of dedicated work to make it possible. Abby kept Dad busy doing a puzzle for almost 3 hours so he would not try to "help". Beginning at 10am we finished at 5pm, and then Pete showed me how to get this blog site set up. So, that brings us up to date. We will get pictures on as soon as we can. We will try to update daily with both events and emotions related to them. Venting may be my only link to sanity. Bear with us and enjoy both the Sunshine and the Shadows of Dad's Descent.
David