Miscellany from a wandering mind

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

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

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

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

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

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

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

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

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

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"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.