Wrapping Up

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)

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

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

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

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!

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

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.) :)