There is a prelude to this fish story that really has nothing to do with fish or fishing. It has to do with becoming the parent of the Alzheimer's patient. Many people can't or won't become primary caregivers because of the role transition involved. The person with Alzheimer's becomes progressively more incompetent to care for themselves or make certain decisions. The child of that person either has to agree to become the 24 hour parent and make a complete role reversal or commit the parent to the care of someone else who will. Parenting of a child can be wearing, but it is a piece of cake to parenting an Alzheimer's patient. At a conference last week the speaker was using the comparison of a child to an Alzheimer's patient. The key distinction is that the child will grow and learn, but the Alzheimer's patient will only decline. There will be no new learning, no new mastered skills, no reasoned discussions or explanations. Indeed the skills that had been mastered will fade away. In many ways every day is new, what was told to them yesterday is gone for good. Reasoning is a two step process and they will often have difficulty with one step processes. As parents we used to say that it went in one ear and out the other. With Alzheimer's patients it goes in one ear and dissolves.
So, I took Dad fishing today. It was a long process to get going. The reels from last year were needing a little attention. My sons and I needed to get fishing licenses. A few other chores had to be attended to first, but finally we were off. We met my other son and his father in law and started drowning a few worms. The fish were biting, if you call 4 inch catfish fish. Then grandpa caught one. Well, if you call a 12 inch carp a fish, he caught one. Now, in his mind which is a child like mind, that was supper for 5000 people if we just had 5 loaves to go with it. I am not so old that I can't remember such high hopes. But, it was a carp, and only a little one at that. Now, the adult thinks ahead. If we take that home he will want to clean it, but he can't clean it by himself. Then he will want to eat it or nag my wife to cook it for him until she goes crazy. Of course, he would choke to death on the bones, or worse, insult her cooking of the fish. The humane thing to do was done. The carp went back into the river.
Now, I remember what my dad said about carp when we were children. "I don't want any of that *%#@)* fish in my house." But, now he is the kid, and he wanted it. He got mad and not a little mad. He compared my action to the recrucifixion of Christ (really) among other things. He put his pole away and wouldn't fish anymore. All day my boys had waited to go fishing, and now it was over. Fortuneately the boys are old enough to accept things like this, but it made them really not want to ever go fishing with grandpa again. Why, you ask, didn't I just throw the fish into the garden when I got home. 2 reasons jump immediately to mind. First, I had no idea he would react quite the way he did, upset, yes, crazy angry and pouting, no. Second, the anger would have been just as acute at home as at the river. Since I wasn't expecting quite the outburst that ocurred, taking care of the anger now rather than later saved postponing the inevitable and seemed quite logical at the time.
There is a final postscript to this fish story. Now Dad smells like fish. Only he can't smell it and won't believe that we or anyone else can either. He loathes taking showers or getting fully clean. Too bad for the people tomorrow when he goes and plays the piano for them. The flip side of being the parent to the Alzheimer's patient is that I can't physically drag him into the shower like I could a child. One, it is against the law and, two, he's too big. That is just part of the problem of parenting an adult, it ain't as easy as parenting a child. Compulsion is not in the vocabulary of the full time caregiver. They may be the child, but there is none of the natural acceptance of roles and what they mean. Now, excuse me, I must go see how I can detoxify him without creating a national calamity.
Monday, May 29, 2006
Sunday, May 14, 2006
Miscellaneous
"I am just an it" is a common comment from Dad. If he isn't telling it to me, he is complaining about it to someone else. It really rankles him to be an "it" and not a person. "Its" can't drive or have their own checkbook or mow the grass or whatever he wants to do today that he can no longer do safely. It doesn't matter to him that he can do things, because those don't limit him and he doesn't give them a thought. He only dwells on the negative, a fact that I listed in a blog some time ago.
Last week I went to a conference for ministers dealing with congregational members with Alzheimer's. It was good. One of the speakers pointed out that one great frustration with Alzheimer's patients is that there is absolutely no reasoning with them. You can try to reason with a child, can reason often with an adult, but although they are an adult and act childlike, we can't reason with them. Therefore there is no out in the issue of being an "It". I have tried, but it doesn't work. He can't follow a logical argument to its conclusion, only to its beginning.
Does he really do things of value? Yes, he plays the piano three times a week at the adult care center where they really love and value him. He often helps dry the dishes after meals. Not everyone else is jumping to do that job. Honestly I haven't found much more for him to do. He doesn't have good balance, he doesn't make wise choice in using tools and doesn't use them safely, he argues about the process of any job being done and the list goes on. My brother was aksing me if I had any suggestions about what more Dad can do, and I really don't. He does like to pick up sticks and paper that come into our yard. The downside is that our city has a strict garbage code. No yard waste in the garbage can and no garbage in the recyclable or yard waste bin. He can't remember those things and so when he works outside I have more work to do sorting things out. Basically any task he does beyond the two I mentioned only create more work for me, and I don't need more work.
My wife and I went to a nursing home the other day to check it out. Maybe it's time to do so, we thought. Well, the thought was largely precipitated by everyone else telling us we are burning out taking care of him and now would be a good time. Well, we went and came home again and he is still here. We can hang on a while. He certainly would not have fit into the Alzheimer's unit at the home here in town. The people there had little or no cognitive skills and he still communicates fairly well in one on one conversations. He does have hard time finding the right word and using it, but we can work around that. He still plans his music program for the adult care center which demonstrates a lot of cognition for a single task. No, he wouldn't have been even a little happy in the unit.
At the conference the other day I asked others about his particular symptoms. He is unique. The professionals there had never met anyone who is in his late a stage of the disease who was still in complete denial of having a problem. That creates more headaches for us. It was nice to hear from them that it would create more headaches for us because of his attitude. That was bad news that was almost comforting, because it at least supported the burnout we are feeling with him. Also no one else had ever had a patient who prays for himself to be healed and then thinks they are. None of the professionals had ever encountered anyone who even had asked to be prayed for for healing, let alone hold their hand on their head, as he will do, and pray for themselves. They said that that would add to the difficulty of our caregiving and wear us out. It does.
Their solution? Put him in a home. What kind of home is unclear because they also acknowledge that he doesn't fit the profile of the Alzheimer's unit. He needs intermediate care, but that costs a lot of money, the kind derived from the sale of a home or a large retirement fund portfolio. Intermediate care can cost $150 to $200 per day and has multiple caregivers. He has no money, so it is either a home where he won't fit, or our home where there are just two caregivers. Sometimes I begin to wonder who has more sunshine and who has more descent, him or us.
Last week I went to a conference for ministers dealing with congregational members with Alzheimer's. It was good. One of the speakers pointed out that one great frustration with Alzheimer's patients is that there is absolutely no reasoning with them. You can try to reason with a child, can reason often with an adult, but although they are an adult and act childlike, we can't reason with them. Therefore there is no out in the issue of being an "It". I have tried, but it doesn't work. He can't follow a logical argument to its conclusion, only to its beginning.
Does he really do things of value? Yes, he plays the piano three times a week at the adult care center where they really love and value him. He often helps dry the dishes after meals. Not everyone else is jumping to do that job. Honestly I haven't found much more for him to do. He doesn't have good balance, he doesn't make wise choice in using tools and doesn't use them safely, he argues about the process of any job being done and the list goes on. My brother was aksing me if I had any suggestions about what more Dad can do, and I really don't. He does like to pick up sticks and paper that come into our yard. The downside is that our city has a strict garbage code. No yard waste in the garbage can and no garbage in the recyclable or yard waste bin. He can't remember those things and so when he works outside I have more work to do sorting things out. Basically any task he does beyond the two I mentioned only create more work for me, and I don't need more work.
My wife and I went to a nursing home the other day to check it out. Maybe it's time to do so, we thought. Well, the thought was largely precipitated by everyone else telling us we are burning out taking care of him and now would be a good time. Well, we went and came home again and he is still here. We can hang on a while. He certainly would not have fit into the Alzheimer's unit at the home here in town. The people there had little or no cognitive skills and he still communicates fairly well in one on one conversations. He does have hard time finding the right word and using it, but we can work around that. He still plans his music program for the adult care center which demonstrates a lot of cognition for a single task. No, he wouldn't have been even a little happy in the unit.
At the conference the other day I asked others about his particular symptoms. He is unique. The professionals there had never met anyone who is in his late a stage of the disease who was still in complete denial of having a problem. That creates more headaches for us. It was nice to hear from them that it would create more headaches for us because of his attitude. That was bad news that was almost comforting, because it at least supported the burnout we are feeling with him. Also no one else had ever had a patient who prays for himself to be healed and then thinks they are. None of the professionals had ever encountered anyone who even had asked to be prayed for for healing, let alone hold their hand on their head, as he will do, and pray for themselves. They said that that would add to the difficulty of our caregiving and wear us out. It does.
Their solution? Put him in a home. What kind of home is unclear because they also acknowledge that he doesn't fit the profile of the Alzheimer's unit. He needs intermediate care, but that costs a lot of money, the kind derived from the sale of a home or a large retirement fund portfolio. Intermediate care can cost $150 to $200 per day and has multiple caregivers. He has no money, so it is either a home where he won't fit, or our home where there are just two caregivers. Sometimes I begin to wonder who has more sunshine and who has more descent, him or us.
Friday, April 14, 2006
Who's on First
There is an old comedy routine about who's on first. No matter where the routine runs, it always comes back to the question, "but who's on first?" I had that kind of conversation today with Dad, but he wasn't trying to be funny, he was trying to get some information, but it wouldn't process and we always ended at the first place we began.
What was frustrating for him, and me, was that this related to music. That was his forte and in some ways still is. I wanted him to transpose a piece of music from B flat to A flat. That is down a step on the scale. He said it would ruin the song by raising the highest note 4 steps. I said it wouldn't and he said, "what wouldn't?" and I said transposing the song, and he said, "what song"? This went on for a while until he understood it wouldn't raise the high note, it would simply bring the two songs I was working with into the same key, the other song already was in A flat. Finally he sat down to do the transposition, I probably could have finished it alone by then, but I wanted to give him something to do.
He had both songs in front of him then looked at me and said, "the song is already in A flat". I know, I said, that is the other song, this is the one you are trasposing. He looked at it and said, "but it is already in B flat". I know I said, but you are going to put it into A flat. "But that will raise it 6 steps", he said. No, I said, it won't. He got a piece of paper and said, "Now which song?" and I showed it to him and he said, "But it isn't in A flat". I know, I said, but you are going to rewrite it into A flat. Then he picked up the other song and said, "But it is already in A flat". That is not the song, I said, putting it aside. This is the song. "But it is in B flat already." I don't want it in B flat, I want it in A flat like the other song. He reached for the other song. "But it is already in A flat."
This went on for a half an hour until he assured me that he understood that I wanted the song in B flat put into A flat. I went into the other room and came back and he hadn't started. "What song do you want done?" I showed him. "But if I put it in A flat it will raise it 2 steps and it won't sound right." No it won't, it will be fine. He got to work and I left. When I got home he proudly showed me that he had copied the song in B flat into B flat on the paper. But you put it in B flat, I said. "But that is what your wife wanted," he said. I asked her to tell him that wasn't what she wanted, and she did and he said, "But it will raise it way above the treble cleff if I put it in A flat." No, it won't, I said. Do you want me to do it, or do you want to do it. "I want to do it". So, he did. An hour later a nearly perfect transposition was complete into A flat, a step lower on the scale.
Who's on first? There are days when nobody is on any of the bases.
What was frustrating for him, and me, was that this related to music. That was his forte and in some ways still is. I wanted him to transpose a piece of music from B flat to A flat. That is down a step on the scale. He said it would ruin the song by raising the highest note 4 steps. I said it wouldn't and he said, "what wouldn't?" and I said transposing the song, and he said, "what song"? This went on for a while until he understood it wouldn't raise the high note, it would simply bring the two songs I was working with into the same key, the other song already was in A flat. Finally he sat down to do the transposition, I probably could have finished it alone by then, but I wanted to give him something to do.
He had both songs in front of him then looked at me and said, "the song is already in A flat". I know, I said, that is the other song, this is the one you are trasposing. He looked at it and said, "but it is already in B flat". I know I said, but you are going to put it into A flat. "But that will raise it 6 steps", he said. No, I said, it won't. He got a piece of paper and said, "Now which song?" and I showed it to him and he said, "But it isn't in A flat". I know, I said, but you are going to rewrite it into A flat. Then he picked up the other song and said, "But it is already in A flat". That is not the song, I said, putting it aside. This is the song. "But it is in B flat already." I don't want it in B flat, I want it in A flat like the other song. He reached for the other song. "But it is already in A flat."
This went on for a half an hour until he assured me that he understood that I wanted the song in B flat put into A flat. I went into the other room and came back and he hadn't started. "What song do you want done?" I showed him. "But if I put it in A flat it will raise it 2 steps and it won't sound right." No it won't, it will be fine. He got to work and I left. When I got home he proudly showed me that he had copied the song in B flat into B flat on the paper. But you put it in B flat, I said. "But that is what your wife wanted," he said. I asked her to tell him that wasn't what she wanted, and she did and he said, "But it will raise it way above the treble cleff if I put it in A flat." No, it won't, I said. Do you want me to do it, or do you want to do it. "I want to do it". So, he did. An hour later a nearly perfect transposition was complete into A flat, a step lower on the scale.
Who's on first? There are days when nobody is on any of the bases.
Monday, March 27, 2006
The Slide
Dad has been on a medicine that is supposed to help slow the process of Alzheimer's. The material that I have read on the topic states that it works for a while, but there comes a time when it can no longer slow things down. That would seem to be what we are seeing these days. Yes, last weekend he had a good day. He went out of town and gave it his all. But that was the first good day in several and he hasn't had a good one since. We use to count on clear days being about 4 of 7. That is down to about 2 of 7. That is a remarkable decline in 3 months.
He still amazes me that he can fool people he seldom sees, but he can't fool those he sees all the time. Our daughter was over the other day, actually she is over every day, but she was over and commented about him. "Grandpa is really getting bad," she observed. I inquired in what way. "He is slurring his words much more than before, unable to find the right word anymore and making up any old word to substitute." If you have kids you will often hear the next person comment on how big they have grown and you are still looking at the same little person. It is that way with Dad. I am with him 24/7 and I don't notice as much as my daughter did. Well, I started to look for those things and it took about 10 minutes of talking with him to see them all. But, I wasn't convinced, so I asked my son, who is also over almost every day, if he saw any noticable decline. He had. He could name them without prompting.
Being concerned that the problem may be related to other health issues we asked the visiting nurse. He is very healthy. That is good. He came home fromt the adult care center where he attends twice weekly and told us he had lost 10 pounds. I got concerned and called them. He hadn't. He just was 10 pounds confused. He had actually gained a pound. He doesn't hear well or process well what he hears. So, he is healthy and in a decline, a real slide.
To all of these changes he is completely oblivious. After the visiting nurse checked him and gave a good report, he told me he would like his car and driver's license back again. The next day he asked if we would mind if he got 10 new piano students and had them come to the house. And so it goes from day to day. Unless he doesn't get his way he is happy as a lark, and even then he forgets much more quickly that he didn't get his way and he is back to happy again. There have been no more complaints about adult care. He doesn't want to go more often yet, but he is happy to go twice a week now and offers no complaints before or after any more. That is progress of a sort, but in a negative direction for him.
One other thing he is demonstrating more is a sense of humor. Unfortuneately, it is often a very mean sense of humor. He relishes making fun of others, mostly me, and then he gets a big laugh. But he has put his torch to more than just me on occasions and always finds it funny. This is a side that hasn't been seen up until now. He is like a little kid daring to say naughty things and reveling in each moment of it. A child can be broken of that nasty behavior, but not an adult Alzheimer's patient. Anyway, that is the scoop for now. The slide has accelerated, at least for now, and we are no longer on that plateau that I wrote about just a short month ago.
He still amazes me that he can fool people he seldom sees, but he can't fool those he sees all the time. Our daughter was over the other day, actually she is over every day, but she was over and commented about him. "Grandpa is really getting bad," she observed. I inquired in what way. "He is slurring his words much more than before, unable to find the right word anymore and making up any old word to substitute." If you have kids you will often hear the next person comment on how big they have grown and you are still looking at the same little person. It is that way with Dad. I am with him 24/7 and I don't notice as much as my daughter did. Well, I started to look for those things and it took about 10 minutes of talking with him to see them all. But, I wasn't convinced, so I asked my son, who is also over almost every day, if he saw any noticable decline. He had. He could name them without prompting.
Being concerned that the problem may be related to other health issues we asked the visiting nurse. He is very healthy. That is good. He came home fromt the adult care center where he attends twice weekly and told us he had lost 10 pounds. I got concerned and called them. He hadn't. He just was 10 pounds confused. He had actually gained a pound. He doesn't hear well or process well what he hears. So, he is healthy and in a decline, a real slide.
To all of these changes he is completely oblivious. After the visiting nurse checked him and gave a good report, he told me he would like his car and driver's license back again. The next day he asked if we would mind if he got 10 new piano students and had them come to the house. And so it goes from day to day. Unless he doesn't get his way he is happy as a lark, and even then he forgets much more quickly that he didn't get his way and he is back to happy again. There have been no more complaints about adult care. He doesn't want to go more often yet, but he is happy to go twice a week now and offers no complaints before or after any more. That is progress of a sort, but in a negative direction for him.
One other thing he is demonstrating more is a sense of humor. Unfortuneately, it is often a very mean sense of humor. He relishes making fun of others, mostly me, and then he gets a big laugh. But he has put his torch to more than just me on occasions and always finds it funny. This is a side that hasn't been seen up until now. He is like a little kid daring to say naughty things and reveling in each moment of it. A child can be broken of that nasty behavior, but not an adult Alzheimer's patient. Anyway, that is the scoop for now. The slide has accelerated, at least for now, and we are no longer on that plateau that I wrote about just a short month ago.
Thursday, March 16, 2006
Sometimes Amazing Things Happen, Sometimes They Don't
Two weeks ago Dad had a busy weekend. He spent a day with my brother and then a day with my sister. They both thought he was doing well and clearly. Those are the amazing days that make me seem the biggest liar on earth. When my kids were little they had foods they loved and foods they detested. When we would go out people would often ask us what our kids liked and we would be honest. Then the kids would turn around and fill their plates with just the opposite and eat it all. Kids and Alzheimer's patients can make you look really bad really fast.
Dad hadn't known what I did for a living for over a month. Each time we would talk about it around the house he would ask what that was and then say, "Why haven't you ever told me about this before." A month or more of that and it seemed pretty clear that he had actually forgotten all about it for good. When my sister was here with him for a day I had a meeting to go to for work. When I got home and was telling my sister about it, I told her it had been a big success. Then my dad chimed in and told her exact numbers and figures related to my job. A job, I might add, that a day before he was completely unaware that I had.
There are periods when he seems to absolutely compel himself to being alert, aware and as normal as any well informed 82 year old man. Sometimes amazing things happen. Then there is the next day. That condition cannot be maintained. I don't understand it, neither how nor why it works that he even can be clear, but he can't keep it up. When everyone else is gone the bubble bursts and we have a confused man again. The day after my sister left I asked him about my work and he told me he didn't know about it.
It was his birthday this week. He really looked forward to turning 82. He talked about it, thought about it and worked himself up into quite a clear state of mind about it. The morning of his birthday he started opening cards. But he didn't know who they were from. Grandchildren, children and people he sees regularly were complete blanks. He will recover most of those people, at least for a time, by the next hour or day or so, but they will fade again. Sometimes amazing things happen, and sometimes they don't.
Dad hadn't known what I did for a living for over a month. Each time we would talk about it around the house he would ask what that was and then say, "Why haven't you ever told me about this before." A month or more of that and it seemed pretty clear that he had actually forgotten all about it for good. When my sister was here with him for a day I had a meeting to go to for work. When I got home and was telling my sister about it, I told her it had been a big success. Then my dad chimed in and told her exact numbers and figures related to my job. A job, I might add, that a day before he was completely unaware that I had.
There are periods when he seems to absolutely compel himself to being alert, aware and as normal as any well informed 82 year old man. Sometimes amazing things happen. Then there is the next day. That condition cannot be maintained. I don't understand it, neither how nor why it works that he even can be clear, but he can't keep it up. When everyone else is gone the bubble bursts and we have a confused man again. The day after my sister left I asked him about my work and he told me he didn't know about it.
It was his birthday this week. He really looked forward to turning 82. He talked about it, thought about it and worked himself up into quite a clear state of mind about it. The morning of his birthday he started opening cards. But he didn't know who they were from. Grandchildren, children and people he sees regularly were complete blanks. He will recover most of those people, at least for a time, by the next hour or day or so, but they will fade again. Sometimes amazing things happen, and sometimes they don't.
Wednesday, March 01, 2006
The Plateau
Wow, it has been a while. Mostly because there has been nothing of real merit to share. Dad has hit a plateau. He has days when his confusion is more pronounced and days when he is clearer. He hasn't had any great outbursts of anger that had been more regular. He talks, but it is almost always the same topics, the same stories, the same issues. The other day he called me "Dad", but it hasn't happened since. He doesn't seem to have any daily confusion on who I am, but he has forgotten what I do for a living and will remark each time we talk about it, "why, that's nice, why haven't I ever heard about you did before."
On the plus side, he has started back at the adult day services. I told him he was actually receiving some benefits for his volunteering, which he is in a sort of round about way, and so he is back, not happily back, but back none-the-less. Other health issues related to age keep popping up and keep my wife busy taking him to various doctors. Last week he had a cataract removed. He never even noticed his sight was bad, but the doctor said it was a large cataract and off it came. Dad came through it without a problem, just like the skin cancer surgery two weeks before that. The calendar for this month already has three scheduled visits to doctors or dentists. All in all things are settling into a routine that is less dramatic, but no less wearing than what we have experienced.
Perhaps the greatest of current problems is his inability to follow a conversation. He picks up on a single word and then starts in on a response to a word that really didn't have anything to do with what was being discussed. We all stop for his time of speaking, scratch our heads at what prompted it and find that we often want to talk less among ourselves as it generates fewer random conversations on his part and fewer interruptions to our own conversations if we just don't have any. Speaking at a pace that he can follow and a volume that he can hear is a very tiring process and discourages too much dialogue with him. Even direct dialogue at his pace one on one can get difficult all the time. Others who only see him occasionally don't notice it as much, but then if they did it 24/7 they would better understand. But that is Dad, that is his life and we are blessed by God in ways that we don't really understand yet in being able to be a part of that life and making it as meaningful for him as we can.
I don't know if there will be a lot of new posts as long as he is on his plateau. If something interesting arises or I have an exceptional need to vent, then you will find it here first. Thanks for reading along.
On the plus side, he has started back at the adult day services. I told him he was actually receiving some benefits for his volunteering, which he is in a sort of round about way, and so he is back, not happily back, but back none-the-less. Other health issues related to age keep popping up and keep my wife busy taking him to various doctors. Last week he had a cataract removed. He never even noticed his sight was bad, but the doctor said it was a large cataract and off it came. Dad came through it without a problem, just like the skin cancer surgery two weeks before that. The calendar for this month already has three scheduled visits to doctors or dentists. All in all things are settling into a routine that is less dramatic, but no less wearing than what we have experienced.
Perhaps the greatest of current problems is his inability to follow a conversation. He picks up on a single word and then starts in on a response to a word that really didn't have anything to do with what was being discussed. We all stop for his time of speaking, scratch our heads at what prompted it and find that we often want to talk less among ourselves as it generates fewer random conversations on his part and fewer interruptions to our own conversations if we just don't have any. Speaking at a pace that he can follow and a volume that he can hear is a very tiring process and discourages too much dialogue with him. Even direct dialogue at his pace one on one can get difficult all the time. Others who only see him occasionally don't notice it as much, but then if they did it 24/7 they would better understand. But that is Dad, that is his life and we are blessed by God in ways that we don't really understand yet in being able to be a part of that life and making it as meaningful for him as we can.
I don't know if there will be a lot of new posts as long as he is on his plateau. If something interesting arises or I have an exceptional need to vent, then you will find it here first. Thanks for reading along.
Saturday, February 11, 2006
Square One or Deju Vu All Over Again
I think we have been here before. NO! I won't go there again. Those people have problems and I don't want to be around people who don't know what they are doing! We have tried to point out that he is a volunteer but that hasn't changed his attitude. We have tried to remind him of the fun he had said he was having, but that hasn't changed his attitude. Now that he can't go to the senior center and won't go to "volunteer" at the adult day care center, he is back home with us 24/7 again.
This time it has about broken the bank of reserve strength. Jac and I have about run out of steam. We had been so happy to have him go someplace twice a week. Now he is back and grumpier than ever.
At the end of breakfast dishes he gets out the cribbage board and cards. Jac no longer sits with him to play in the morning. He is frustrated and goes to his room. Jac tries to get things done around the house but feels guilty about putting him off. After lunch out comes the board and cards again. Frustration again for both. Someone who doesnt' understand what is going on with him suggested we make a schedule so he will know when he can play and when he can't. I think I wrote something about suggestions in this spot a month or so ago. They are about as welcome as a bad case of the flu. The follow up question always get around to, have you tried my suggestion yet? Only more frustration for more people. Schedules are about as effective for an alzheimer's patient as for a 2 month old child. They set their own. Period. Now, if all those with suggestions would just change their suggestion to "can I come and take your dad for a day?" I would change my opinions about suggestions. I might even smile broadly, laugh hilariously or something roughly akin to that.
How about a nursing home others have asked. Right now he is pretty aware and alert about 3 days a week. I mean that on those days it would take some time with him to see any signs of the disease. Other days it takes just long enough for him to open his mouth, or it takes just a few minutes watching him go through the motions of the day to see it clearly. He isn't physically violent, he doesn't wander from the home and he doesn't soil himself. A home seems to me a bit over the top at the present. I just keep reminding myself that others are doing this and we can too. Others remind us also that they know what we are going through, they share their own experiences (often much worse than ours) and that really helps the day along.
This time it has about broken the bank of reserve strength. Jac and I have about run out of steam. We had been so happy to have him go someplace twice a week. Now he is back and grumpier than ever.
At the end of breakfast dishes he gets out the cribbage board and cards. Jac no longer sits with him to play in the morning. He is frustrated and goes to his room. Jac tries to get things done around the house but feels guilty about putting him off. After lunch out comes the board and cards again. Frustration again for both. Someone who doesnt' understand what is going on with him suggested we make a schedule so he will know when he can play and when he can't. I think I wrote something about suggestions in this spot a month or so ago. They are about as welcome as a bad case of the flu. The follow up question always get around to, have you tried my suggestion yet? Only more frustration for more people. Schedules are about as effective for an alzheimer's patient as for a 2 month old child. They set their own. Period. Now, if all those with suggestions would just change their suggestion to "can I come and take your dad for a day?" I would change my opinions about suggestions. I might even smile broadly, laugh hilariously or something roughly akin to that.
How about a nursing home others have asked. Right now he is pretty aware and alert about 3 days a week. I mean that on those days it would take some time with him to see any signs of the disease. Other days it takes just long enough for him to open his mouth, or it takes just a few minutes watching him go through the motions of the day to see it clearly. He isn't physically violent, he doesn't wander from the home and he doesn't soil himself. A home seems to me a bit over the top at the present. I just keep reminding myself that others are doing this and we can too. Others remind us also that they know what we are going through, they share their own experiences (often much worse than ours) and that really helps the day along.
Monday, February 06, 2006
Back in the Saddle
His cold is over and he is back in the saddle again. More like back on his high horse again, but more about that after bit. He made it to his volunteering both days this past week. Beginning tomorrow he will ride the bus both ways, not just home. Is there an advantage to that? Two more hours of available time twice a week. We usually drive him over at 10, but the bus will pick him up at 8. We won't have to have two cars available on those days so that will also help. Is everybody happy, well, I should say not.
That high horse has been bucking a lot. I know that he generally can't remember tomorrow what is said today, but he is actually surprising about that sometimes. If it is bad he usually does remember it. Neutral or good information is easily lost. What category to place our converstations a few weeks ago into is perhaps difficult. He is arguing again about tuning pianos. Did he forget that it is over, not exactly, he simply says it never was just because he had not talked about it for a week or so. Did he forget that he can't have his own apartment alone in Chicago? Yes. Score one for forgetting the bad news. That may be a first. The downside, I had to tell him again and go through his anger all over again. A lot of anger.
Other bad news he forgot was that he couldn't go to the senior center anymore without a companion. The visiting nurse had told him that 2 weeks ago. He forgot. Since it was bad news and he likes to harbor bad news, I was surprised. Down side. Angry about that all over again as well. The upside had been in effect for 2 whole weeks. He thought that he was playing the piano at the one place on the same day that he used to play cards at the other. Therefore he was accepting the fact that he couldn't go play cards. For a flash in his mind he somehow remembered and BOOM. But after the blow up he has forgotten again. Upside for a while.
There is one ride I always avoid at the amusement park, the roller coaster. The anticipation of the drop bothers me more than the ride. That may be the hardest daily part of the care for Dad. There is always the anticipation of his next big blowup. The ride is getting faster, the drops (blowups) bigger. The anticipation of what he may decide to do to get his own way becomes more accute as he becomes unhappier with the realities of what is happening to his life. At some point he will progressively cease to care and the ride will come to a stop. But that is a ways away.
That high horse has been bucking a lot. I know that he generally can't remember tomorrow what is said today, but he is actually surprising about that sometimes. If it is bad he usually does remember it. Neutral or good information is easily lost. What category to place our converstations a few weeks ago into is perhaps difficult. He is arguing again about tuning pianos. Did he forget that it is over, not exactly, he simply says it never was just because he had not talked about it for a week or so. Did he forget that he can't have his own apartment alone in Chicago? Yes. Score one for forgetting the bad news. That may be a first. The downside, I had to tell him again and go through his anger all over again. A lot of anger.
Other bad news he forgot was that he couldn't go to the senior center anymore without a companion. The visiting nurse had told him that 2 weeks ago. He forgot. Since it was bad news and he likes to harbor bad news, I was surprised. Down side. Angry about that all over again as well. The upside had been in effect for 2 whole weeks. He thought that he was playing the piano at the one place on the same day that he used to play cards at the other. Therefore he was accepting the fact that he couldn't go play cards. For a flash in his mind he somehow remembered and BOOM. But after the blow up he has forgotten again. Upside for a while.
There is one ride I always avoid at the amusement park, the roller coaster. The anticipation of the drop bothers me more than the ride. That may be the hardest daily part of the care for Dad. There is always the anticipation of his next big blowup. The ride is getting faster, the drops (blowups) bigger. The anticipation of what he may decide to do to get his own way becomes more accute as he becomes unhappier with the realities of what is happening to his life. At some point he will progressively cease to care and the ride will come to a stop. But that is a ways away.
Saturday, January 28, 2006
Not Much
No, I haven't forgotten how to blog. The thing has been that there hasn't been and remains not much to blog about. Dad has been sick. 81 year old sick is different than 50 year old sick. A cold isn't just a cold. He was upset and wanted to go to the hospital with his cold last week. I was rather astounded as most people don't think of going to the hospital with a runny nose, but he did. The hospital told him not to bother to come in as they wouldn't give him a room. The doctor also told him to wait it out when I took him to see the doctor on Monday. The cold has hung on, however, and he looks and sounds not well. Progress is being made and he says that he does feel better. That's good. He had a second surgery on his face this week to completely remove the cancerous spot. That has added to the week's difficulties. He missed both days of going to volunteer because of his illness. Hopefully next week will be more fulfilling for him.
Thursday, January 19, 2006
The Volunteer
What gives most people, men anyway, a sense of identity is work. What can't the Alzheimer's patient carry on successfully, work. What do they still want to do. Work. It is a mantra of Dad's that he wants to be useful. If you are a follower of the blogs, you know that can be dangerous to him and things he works with. Last Saturday he wanted to be useful so he went out and took off the dead stalks on the hollyhocks. Only, he lost his balance and fell down and hurt his hand. We had it checked out and it is nothing serious. It is, however, something that can happen when he wants to help.
So, what can he do? Well, he can play the piano. The fingers still have their touch. I am rather amazed coming from a musical family that playing the piano is really a big deal. Apparently not that many people either play or want to offer their skills for the enjoyment of others. How to connect his skill to his need to be useful? Enter the crisis. He can't go to the senior center anymore, although he doesn't know that. But, we have to get him out of the house so he doesn't go stir crazy. There is the other place he went that one day, the adult day care center that he felt so bothered by going to. He is functioning higher than them, in his own mind if not in total reality. Could they use a piano player? YES!!!
On Tuesday I took him over to see about "volunteering" at the center. He was an immediate hit with the clients. He can volunteer to play for them two mornings a week and then stay to "help" the other clients with their needs the rest of the day. He is getting the care that he needs in an environment that is good for him and is able to feel totally useful. YEAH! Today was his first full day and aside from missing my wife's good cooking for lunch, he had a good time. There is another advantage. He thinks it's on the same day as he was going to the senior center, and I am not going to tell him otherwise, but on the downlow, it isn't. He doesn't know, but he does know that he is now the useful man, Joe the Volunteer.
So, what can he do? Well, he can play the piano. The fingers still have their touch. I am rather amazed coming from a musical family that playing the piano is really a big deal. Apparently not that many people either play or want to offer their skills for the enjoyment of others. How to connect his skill to his need to be useful? Enter the crisis. He can't go to the senior center anymore, although he doesn't know that. But, we have to get him out of the house so he doesn't go stir crazy. There is the other place he went that one day, the adult day care center that he felt so bothered by going to. He is functioning higher than them, in his own mind if not in total reality. Could they use a piano player? YES!!!
On Tuesday I took him over to see about "volunteering" at the center. He was an immediate hit with the clients. He can volunteer to play for them two mornings a week and then stay to "help" the other clients with their needs the rest of the day. He is getting the care that he needs in an environment that is good for him and is able to feel totally useful. YEAH! Today was his first full day and aside from missing my wife's good cooking for lunch, he had a good time. There is another advantage. He thinks it's on the same day as he was going to the senior center, and I am not going to tell him otherwise, but on the downlow, it isn't. He doesn't know, but he does know that he is now the useful man, Joe the Volunteer.
Friday, January 13, 2006
The Other Shoe Dropped
Well, it happened. The senior center informed us today that Dad can't go back on his own. His dementia is considered a liability risk. They are not designed to monitor and assist. As noted in an earlier update, it is for people who can operate independently. He really can't. He can follow simple directions, like get in line for lunch, or deal the cards, but he can't initiate the actions by himself. I arrived early the other day to pick him up and watched him play cards for a while. It was quite sad. He could follow suit, but not pick up on the whole idea of what was taking place in the game.
Earlier I had talked about the potential for his playing taps for military funerals. Whereas he had seemed a little interested in the idea, he never actually made any effort to follow through on preparing for doing so. He got his trumpet out twice and played for a couple of minutes and put it away. He said that was all he could do for the day and didn't want to hurt his lip. Well, today the American Legion called and wanted him to play. I had to make my apologies and explain that he wouldn't be able to do it afterall. It had seemed such a bright prospect, but he just doesn't have the faculties to do it, and I have to accept that.
Today he had the lesions removed from his face. It was quick and simple and he experienced no pain. The downside is that he is confused. He now thinks that the cancer on his face was related to his alzheimer's and that the removal of the cancer also means that the alzheimer's is now also gone. That is presenting its own complications since he left the doctor.
Final thought for today. Dad has gone down hill considerably this week. It has been almost agonizing to watch. It is like he stepped off a ledge and fell to a lower ledge. Abilities, thoughts, reactions have changed in big ways. But tonight we had a great heart to heart talk. He won't remember tomorrow, and that is too bad because we discussed some very important things and came to an agreement on all of them. As I told him, each day will become an exciting new adventure of territory he hasn't covered before. The future is bright the prospect of great new discovery for each day of the rest of his life. Sunshine and descent.
Earlier I had talked about the potential for his playing taps for military funerals. Whereas he had seemed a little interested in the idea, he never actually made any effort to follow through on preparing for doing so. He got his trumpet out twice and played for a couple of minutes and put it away. He said that was all he could do for the day and didn't want to hurt his lip. Well, today the American Legion called and wanted him to play. I had to make my apologies and explain that he wouldn't be able to do it afterall. It had seemed such a bright prospect, but he just doesn't have the faculties to do it, and I have to accept that.
Today he had the lesions removed from his face. It was quick and simple and he experienced no pain. The downside is that he is confused. He now thinks that the cancer on his face was related to his alzheimer's and that the removal of the cancer also means that the alzheimer's is now also gone. That is presenting its own complications since he left the doctor.
Final thought for today. Dad has gone down hill considerably this week. It has been almost agonizing to watch. It is like he stepped off a ledge and fell to a lower ledge. Abilities, thoughts, reactions have changed in big ways. But tonight we had a great heart to heart talk. He won't remember tomorrow, and that is too bad because we discussed some very important things and came to an agreement on all of them. As I told him, each day will become an exciting new adventure of territory he hasn't covered before. The future is bright the prospect of great new discovery for each day of the rest of his life. Sunshine and descent.
Tuesday, January 10, 2006
Same Song, Second Verse
Well, where to start. Dad is upset. He told the Senior Center he would tune their piano, but he doesn't have his tools, they are in storage, and so he can't. Even if they were out of storage, he couldn't, but he doesn't accept that. That makes me the bad guy again.
Today he had to go to the dermatologist. He has small growths on his face which she thinks are cancerous. Nothing serious, they simply need to be taken off. Jacque took him today and he didn't want her to go in with him. After a few minutes the doctor came out and asked her to come in. Dad doesn't communicate on someone else's plane. When she asked him questions he basically ignored her and talked about what he wanted to talk about and couldn't understand the things she was saying. He wasn't happy that Jacque ended up in the room, but that is just the way it is. Even with Jacque in the room he still tried to stay on his own thoughts and interupted the doctor to have his say on anything that happened to be on his mind. That was me, of course. I am stealing his money. He can't understand it going into the bank with direct deposit. He doesn't want it in the bank because the bank steals it too. That seems a common alzheimer's thing.
We went to the library today because he asked to go. He always likes to look at the World War II books. First we got him his own library card. We had to use my identification to get him a card. He told the lady that I looked so bad in my driver's license picture because I had just gotten out of jail. Then he told the lady at the information desk that he wanted some books. He said he wanted book on ....... not World War II, but on names. The librarian looked at him curiously, but of course he couldn't explain it better than that, and I had no idea what he was talking about. I asked him if he didn't want to see some books on WWII and he looked at me like I was an idiot. At that time I certainly felt like one. It was turning into a delightful trip. He had asked Jacque for some books on alzheimer's, so we asked for some of them as well. While the librarian was frantically trying to figure out what kind of books on names he wanted, Jacque went and got him some books on Scotland. The librarian did find some books on names, not what he wanted, but no one is quite sure what he wanted and she gave him two books on alzheimer's. On the way to the reading table he stopped by two kids playing chess and told them they were doing it wrong. When I got him to his reading table he was well supplied with books which kept him occupied for about an hour.
In one of the alzheimer's books there was a series of pictures on the changes in the brain. He told me that after looking at the books he knew that he didn't have whatever it was that they were about. But, then he showed me the pictures of the brain to prove it. I reminded him that the doctor had taken pictures of his brain last summer, something which acknowleged that he could "sort of" remember doing. I told him that that was how the doctor knew, in part anyway, that he had alzheimer's. He looked at me and looked at the book and read the subtitles. Normal, mild, moderate, severe. He looked at me again and said, "how do they cure it?" They don't. "Oh," he said. "Well, I don't have it, because God just healed me," and he closed the book. That ended our trip to the library for today.
Today he had to go to the dermatologist. He has small growths on his face which she thinks are cancerous. Nothing serious, they simply need to be taken off. Jacque took him today and he didn't want her to go in with him. After a few minutes the doctor came out and asked her to come in. Dad doesn't communicate on someone else's plane. When she asked him questions he basically ignored her and talked about what he wanted to talk about and couldn't understand the things she was saying. He wasn't happy that Jacque ended up in the room, but that is just the way it is. Even with Jacque in the room he still tried to stay on his own thoughts and interupted the doctor to have his say on anything that happened to be on his mind. That was me, of course. I am stealing his money. He can't understand it going into the bank with direct deposit. He doesn't want it in the bank because the bank steals it too. That seems a common alzheimer's thing.
We went to the library today because he asked to go. He always likes to look at the World War II books. First we got him his own library card. We had to use my identification to get him a card. He told the lady that I looked so bad in my driver's license picture because I had just gotten out of jail. Then he told the lady at the information desk that he wanted some books. He said he wanted book on ....... not World War II, but on names. The librarian looked at him curiously, but of course he couldn't explain it better than that, and I had no idea what he was talking about. I asked him if he didn't want to see some books on WWII and he looked at me like I was an idiot. At that time I certainly felt like one. It was turning into a delightful trip. He had asked Jacque for some books on alzheimer's, so we asked for some of them as well. While the librarian was frantically trying to figure out what kind of books on names he wanted, Jacque went and got him some books on Scotland. The librarian did find some books on names, not what he wanted, but no one is quite sure what he wanted and she gave him two books on alzheimer's. On the way to the reading table he stopped by two kids playing chess and told them they were doing it wrong. When I got him to his reading table he was well supplied with books which kept him occupied for about an hour.
In one of the alzheimer's books there was a series of pictures on the changes in the brain. He told me that after looking at the books he knew that he didn't have whatever it was that they were about. But, then he showed me the pictures of the brain to prove it. I reminded him that the doctor had taken pictures of his brain last summer, something which acknowleged that he could "sort of" remember doing. I told him that that was how the doctor knew, in part anyway, that he had alzheimer's. He looked at me and looked at the book and read the subtitles. Normal, mild, moderate, severe. He looked at me again and said, "how do they cure it?" They don't. "Oh," he said. "Well, I don't have it, because God just healed me," and he closed the book. That ended our trip to the library for today.
Thursday, January 05, 2006
Music Man, Etc.
It has been suggested that I am repeating myself in this blog. Perhaps, but when it is repeated in Dad's life and mind over and over again, it keeps coming up here as well. The dots all connect, not so much in his mind as in a pattern that can be seen. The music man is part of the pattern.
Today he has really been on the issue of getting his piano tuning tools out and getting back to work. That his piano tuning jobs had fallen way off in the past couple of years is something, along with the rest of the past couple of years, that he simply can't remember. He did tune pianos for many years, and he is living back there somewhere in the glory days.
He wanted to tune my piano today. That isn't going to happen. The last time he did it was a complete disaster as many of his more recent clients discovered. Well, he kept at it and at it until finally he asked, "what did I ever do that was so bad to your piano that you won't let me tune it now?" Now I had been honestly trying the only three answers that work with alzheimer's patients, yes, ignore and change the subject just as much as I possibly could. But he kept at it, so I told him. He looked shocked, dismayed, hurt, offended and then he began to apologize. He would never do that again. Ever. Well, I watched him tune an old piano just a month and a half ago, and yes, he would.
But his feelings were hurt. He wants to be "worthwhile" and says that sitting around is not being worthwhile. So, back at it he went. He wants his equipment so he can do a job. My job. Never mind that we had resolved that issue 5 minutes ago. 5 minutes ago is gone, kaput. He wants to tune my piano. After all, 2 octaves are way out of tune, he says. By the way, did I say that just yesterday he was telling me how nicely my piano sounded? But that was yesterday, and yesterday's gone.
On a positive note, he does still play well, usually. He plays much better from memory than from a book, but even then it is OK. He plays the piano for the senior center and they really like him to do it. He goes there at least once a week, twice if possibe, and he plays for about an hour each day. Oldies from their generation and then a selectin of hymns. It is an opportunity to be useful. I just have to make sure he doesn't offer to tune their piano and that they don't accept if he does.
He also wants to advertise for new piano students. Good idea because he still knows his stuff. The Music Man's memory of theory and practice is locked in for a long time to come. (An alzheimer's nurse says that it may be the last thing that will go.) But, he wouldn't remember what day their lessons were on and quite likely what they covered in the last lesson. So much that he can do combined with so much that he can't. So, we have the sunshine and the descent.
Today he has really been on the issue of getting his piano tuning tools out and getting back to work. That his piano tuning jobs had fallen way off in the past couple of years is something, along with the rest of the past couple of years, that he simply can't remember. He did tune pianos for many years, and he is living back there somewhere in the glory days.
He wanted to tune my piano today. That isn't going to happen. The last time he did it was a complete disaster as many of his more recent clients discovered. Well, he kept at it and at it until finally he asked, "what did I ever do that was so bad to your piano that you won't let me tune it now?" Now I had been honestly trying the only three answers that work with alzheimer's patients, yes, ignore and change the subject just as much as I possibly could. But he kept at it, so I told him. He looked shocked, dismayed, hurt, offended and then he began to apologize. He would never do that again. Ever. Well, I watched him tune an old piano just a month and a half ago, and yes, he would.
But his feelings were hurt. He wants to be "worthwhile" and says that sitting around is not being worthwhile. So, back at it he went. He wants his equipment so he can do a job. My job. Never mind that we had resolved that issue 5 minutes ago. 5 minutes ago is gone, kaput. He wants to tune my piano. After all, 2 octaves are way out of tune, he says. By the way, did I say that just yesterday he was telling me how nicely my piano sounded? But that was yesterday, and yesterday's gone.
On a positive note, he does still play well, usually. He plays much better from memory than from a book, but even then it is OK. He plays the piano for the senior center and they really like him to do it. He goes there at least once a week, twice if possibe, and he plays for about an hour each day. Oldies from their generation and then a selectin of hymns. It is an opportunity to be useful. I just have to make sure he doesn't offer to tune their piano and that they don't accept if he does.
He also wants to advertise for new piano students. Good idea because he still knows his stuff. The Music Man's memory of theory and practice is locked in for a long time to come. (An alzheimer's nurse says that it may be the last thing that will go.) But, he wouldn't remember what day their lessons were on and quite likely what they covered in the last lesson. So much that he can do combined with so much that he can't. So, we have the sunshine and the descent.
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