How's it going with your dad is becoming a common greeting. That's fine, since he lives with us and we are concerned daily with his welfare. The only problem with the greeting is that I don't always know what to answer. Do they really want to know. I'd write a book. Do they want the short version. That is easier.
Short version: Up and down. We are reminded by the "experts" and those that write the material on Alzheimer's that the downs will keep getting lower down and the ups will keep getting less high up. So, up and down is relative. Up and down today is different than up and down 2 or 4 or 6 months ago.
What are the big issues this week? Well, he is healed. Ask him and he will tell you. His one prediction for the new year is that everyone will see that he is healed. Jacque asked him how they will see it. Because I am, he said. And so denial continues to dominate his mind over almost anything else. Every day he tells Jacque that the doctor was so wrong in what he said and that the nurse who comes doesn't have a clue. That one thought dominates almost everything he thinks or says. In the middle of totally unrelated conversations he brings it up.
So what? So, because he is healed he can drive again. Live on his own again. Manage his own affairs again. Because he is healed means that not only the doctors and nurses are wrong, but so are Jacque and I and everyone else. Take 40 three year olds whining at you for candy every minute: why not, why not, why not, why not, why not, why not. Babysit them 16 hours a day, every day without end: why not, why not, why not, why not, why not. Now you have an idea of, So What? But it doesn't really scratch the surface of what it is like.
Today he got mad, not a little mad, but angry mad. He was telling David Jr. about the great deal he has on health insurance and how it only costs him $X hundred per month. Then he said that he only had to pay part of that, about $Y hundred per month. I said, yes, Dad, good deal, you only have to pay so much, and I gave the amount which is less than what he was saying. That should have brought a smile, but it didn't. I don't either, he raged, I only have to pay $50 a month. I was stunned and blundered big time. No, I said, as you were telling David Jr. just now, you only have to pay so much per month for your insurance. Then he blew up. I never said any such thing to David just now. I know how much I have to pay. I haven't lost my mind yet. I know that we are not supposed to contradict him, he has his own reality and we have to live in it, but I thought maybe he didn't understand what he had just been saying, so I erred even more and repeated myself. There was no positive point to that as I only too quickly discovered. He hasn't dropped the subject since lunch time.
The teacher in me has got to go. Accuracy is irrelevant. Correctness is immaterial. I have a new book to follow. There are only 3 acceptable responses to an Alzheimer's patient. 1) Yes, Dad 2) ignore what was said completely 3) change the subject. That takes lots of practice. I haven't mastered it yet, but I'm working on it. Jacque, fortuneately is an ace.
Friday, December 30, 2005
Monday, December 26, 2005
Christmas
It has been a few days since anything new has been here. Sorry to those who read this and look for something new. But, it has been Christmas and I have waited to write an assessment of how it all went.
It went well. Amazingly well. We have had all our children (6) here and their spouses (3) and grandkids (2) for some or all the time since the 20th of December. We have gotten to the point where we accept that Dad doesn't know very many people by name so that hasn't been an issue. He has been basking in all the family being together. He remarks often that we have all 4 generations together just as it should be for an old fashioned Christmas. Last Saturday my brother, his wife and one daughter and her husband and baby were here. That made all three of his great grandchildren that he has been able to see and play with over the holidays. Again, events, not names are what have thrilled him.
It has been amazing that he almost seems better for all the commotion. But, right when you begin to think, oh, wow, maybe the diagnosis was all wrong and he can return to his normal life, the truth trips up that dream. His confusion rears its head in strange and unexpected ways and crashes the optimism back to earth. Never-the-less, it has been a grand Christmas time and he has enjoyed it immensely. We are all happy.
It went well. Amazingly well. We have had all our children (6) here and their spouses (3) and grandkids (2) for some or all the time since the 20th of December. We have gotten to the point where we accept that Dad doesn't know very many people by name so that hasn't been an issue. He has been basking in all the family being together. He remarks often that we have all 4 generations together just as it should be for an old fashioned Christmas. Last Saturday my brother, his wife and one daughter and her husband and baby were here. That made all three of his great grandchildren that he has been able to see and play with over the holidays. Again, events, not names are what have thrilled him.
It has been amazing that he almost seems better for all the commotion. But, right when you begin to think, oh, wow, maybe the diagnosis was all wrong and he can return to his normal life, the truth trips up that dream. His confusion rears its head in strange and unexpected ways and crashes the optimism back to earth. Never-the-less, it has been a grand Christmas time and he has enjoyed it immensely. We are all happy.
Tuesday, December 20, 2005
This and That
Dad loves to talk about his relatives, cousins, aunts and uncles, etc. He will pull out an old picture and and give a complete geneology for the person plus a complete list of interesting anecdotes about them. So, I was really excited the other day when his cousin called. I chatted with her for a while and then asked him if he would like to talk with her. Who? I don't know that person. But he talked and then he remembered, and then he forgot. The next morning I asked him what his cousin had to say. Who? They called here? Show him a picture of her and he will tell the whole story, but he doesn't know she called. If it happens today it is generally gone tomorrow. Then again his mind strangely latches onto the most obscure things and they cling like grass stains.
For years he would visit his sister and my cousins and they always played pinochle. Some people tell of their great achievements in war, or business or sports, but my cousins tell of their great achievements at the pinochle table. My dad played with them for years whenever he went to visit. One of my cousin's greatest exploits came in a game against Dad. Now we take Dad to the senior center to get him some outside activities. They play pinochle there. He insists that he has never played that game before and gets adamantly angry if I tell him that he played it for years at his sister's house. One would think that an activity engaged in repeatedly and often over a period of 25 years would be one of those things that would stick, but it doesn't.
That is rather the frustrating thing about the whole disease. We never know what he might or might not remember. Some important and unimportant things seem right at his finger tips while other things, important or unimportant, recent or old, seldom done or often done, are gone like the mist in the sun. It is always just enough to keep us off balance when planning for him or talking with him.
For years he would visit his sister and my cousins and they always played pinochle. Some people tell of their great achievements in war, or business or sports, but my cousins tell of their great achievements at the pinochle table. My dad played with them for years whenever he went to visit. One of my cousin's greatest exploits came in a game against Dad. Now we take Dad to the senior center to get him some outside activities. They play pinochle there. He insists that he has never played that game before and gets adamantly angry if I tell him that he played it for years at his sister's house. One would think that an activity engaged in repeatedly and often over a period of 25 years would be one of those things that would stick, but it doesn't.
That is rather the frustrating thing about the whole disease. We never know what he might or might not remember. Some important and unimportant things seem right at his finger tips while other things, important or unimportant, recent or old, seldom done or often done, are gone like the mist in the sun. It is always just enough to keep us off balance when planning for him or talking with him.
Saturday, December 17, 2005
The Dangerous Solution
What is the best tool for fixing a toilet? What is the best tool for putting a handle on a chest? What is the best tool for repairing a loose ceiling tile? If you answered a sharp knife to all the questions, then you should get yourself checked out at the doctor. Yes, that is Dad's solution.
When he first arrived I wanted him to feel an important and helpful part of the family. I knew that the move was abrupt and the changes in his life made him feel unimportant. So, I gave him a small task, one of the sort that he had done for 50 or more years, a five minute task. Well, an hour later he was working away with a knife to reshape a whole in the side of the chest he was working on to put in a new handle. I had given him all the tools necessary to do the job, but he had sought out a knife to do it "right".
Perhaps I am a slow learner, or perhaps I really do want to make him feel useful, helpful and important, but I gave him another simple job a week later. This is one that he has done many times over the years. I needed a new handle on the toilet. One tool was all that was necessary, a pliers, which I provided. An hour later I found him in the bathroom with a knife cutting away at the plastic nut holding the handle in place.
This week he noticed a loose ceiling tile in his bedroom. He came and said we should fix it right away. The best tool for that job, he said, is a good sharp knife.
What is the solution to the problem. Don't let Dad fix anything around the house. Don't even mention a small project that needs to be done. The problem with that solution?
A. He constantly wants to do things. Right now he wants to rewire his new bathroom.
B. Try guarding every conversation you have around the house and see how wearing it can be.
C. Even letting him help leads to the knife problem and adds 2 to 3 times to the length of any job. That is right when I have 2 to 3 times less time to do things becasue he is here.
D. It reinforces in his mind his own sense of increasing uselessness and creates associated tensions.
E. I now have to deal with D.
There is an upside. Unless he is doing a "project" he doesn't care about knives at all. Oh, the small things that we can be so thankful for.
When he first arrived I wanted him to feel an important and helpful part of the family. I knew that the move was abrupt and the changes in his life made him feel unimportant. So, I gave him a small task, one of the sort that he had done for 50 or more years, a five minute task. Well, an hour later he was working away with a knife to reshape a whole in the side of the chest he was working on to put in a new handle. I had given him all the tools necessary to do the job, but he had sought out a knife to do it "right".
Perhaps I am a slow learner, or perhaps I really do want to make him feel useful, helpful and important, but I gave him another simple job a week later. This is one that he has done many times over the years. I needed a new handle on the toilet. One tool was all that was necessary, a pliers, which I provided. An hour later I found him in the bathroom with a knife cutting away at the plastic nut holding the handle in place.
This week he noticed a loose ceiling tile in his bedroom. He came and said we should fix it right away. The best tool for that job, he said, is a good sharp knife.
What is the solution to the problem. Don't let Dad fix anything around the house. Don't even mention a small project that needs to be done. The problem with that solution?
A. He constantly wants to do things. Right now he wants to rewire his new bathroom.
B. Try guarding every conversation you have around the house and see how wearing it can be.
C. Even letting him help leads to the knife problem and adds 2 to 3 times to the length of any job. That is right when I have 2 to 3 times less time to do things becasue he is here.
D. It reinforces in his mind his own sense of increasing uselessness and creates associated tensions.
E. I now have to deal with D.
There is an upside. Unless he is doing a "project" he doesn't care about knives at all. Oh, the small things that we can be so thankful for.
Friday, December 16, 2005
And my heart clutched
It was senior citizen center day again today. Dad was looking forward to it. Unfortunately, he had eaten too much rich food yesterday and I had to make a quick run to the pharmacy for imodium before he could go. He set off in great spirits with some music to play for the others. When I arrived to pick him up 3 hours later, I was motioned into the director's office. We all love him so much, she told me. "But" . . . . My heart fell. But, he can't operate without assistance or supervision. That, she assured me, is not the job of the senior center. It is for people who can care for themselves.
He does there what he does here. He stands around and waits for directions. She gave him a choice of things he could do, but he couldn't make a choice. When she steered him to the piano, he entertained the others for 45 minutes and they were all happy. But, he couldn't get his own lunch by himself, an expectation they have of everyone. Each hand of cards must be assisted by someone. One nice lady that he plays cards with said to me, he has a memory loss doesn't he? He can't remember from hand to hand how it is done. Also, he lost his lunch ticket. They fed him anyway since they know he had one. Can he go back? Yes, but maybe not for long. The director said that she would try to keep an eye on him and assist him as much as she can, but she has 60 other seniors who want her attention so she can't always be assisting him.
This creates the problem. He is too capable for the adult day care center. He isn't capable enough for the senior center. When he is here, he is just like at the senior center. Jacque is the best there is. She guides him through his day, keeps him active doing things that are neither beyond him nor beneath him. But, she can't do that every hour of every day. The senior center had been our great hope. It would give us a break of 3 to 4 hours twice a week. We hope that it will remain that way for at least another couple months, but now there are no guarantees.
Tune in tomorrow for "The Dangerous Solution"
He does there what he does here. He stands around and waits for directions. She gave him a choice of things he could do, but he couldn't make a choice. When she steered him to the piano, he entertained the others for 45 minutes and they were all happy. But, he couldn't get his own lunch by himself, an expectation they have of everyone. Each hand of cards must be assisted by someone. One nice lady that he plays cards with said to me, he has a memory loss doesn't he? He can't remember from hand to hand how it is done. Also, he lost his lunch ticket. They fed him anyway since they know he had one. Can he go back? Yes, but maybe not for long. The director said that she would try to keep an eye on him and assist him as much as she can, but she has 60 other seniors who want her attention so she can't always be assisting him.
This creates the problem. He is too capable for the adult day care center. He isn't capable enough for the senior center. When he is here, he is just like at the senior center. Jacque is the best there is. She guides him through his day, keeps him active doing things that are neither beyond him nor beneath him. But, she can't do that every hour of every day. The senior center had been our great hope. It would give us a break of 3 to 4 hours twice a week. We hope that it will remain that way for at least another couple months, but now there are no guarantees.
Tune in tomorrow for "The Dangerous Solution"
Monday, December 12, 2005
Snowy Days
Not much has really happened the past couple of days. Dad has worked on his puzzles which he still likes to do. He isn't real good at it anymore, but he plugs away. He has been calmer than most days last week. The car hasn't come up, nor has going to see Dar. Tomorrow he is looking forward to a big day. Larry is taking him to Illinois for 3 days. He will get to stay with his friend Bud in Winnebago. Oddly he hasn't mentioned that to me today either. He has just been really mellow.
Saturday, December 10, 2005
Introduction
This blog is intended to give an occasional update on Joe. Joe was diagnosed with Alzheimer's on Halloween Day, 2005. On Saturday November 5 he moved in with us. The first week was devoted almost entirely to getting some of his financial affairs in order. Everyone needed a copy of the power of attorney to do business with me instead of him. During this time he was not a happy person as he no longer had his car, which I had taken to my son-in-law's house, and he began to feel the real first pinch of his changed life. By the end of the week Jacque and I were at the point of wondering if we had made a horrible mistake. Nothing related to my regular work had been done in the crisis moment of getting him settled in and getting a handle on his finances.
As the weeks have passed the weight of the responsibility began to mushroom. My office was dismantled and became his bedroom. I still don't know where most of my things are that used to be in the office, things I am beginning to need. Then we put in a new bathroom next to the office so he would have his own bath with less worry about his wandering around in the night. (Fortunately, this hasn't happened, but it is coming.) Of course, all this time has been filled with constant complaint and denial of his condition and argument about wanting to drive and go to see Dar in Illinois.
The visiting nurse, a specialist in dementia came and gave him a very thorough follow up exam to what the doctor had given him. She verified the diagnosis and put him at early level 5 on the 7 level scale of Alzheimer's. That means that he can no longer drive, handle his finances or live successfully independently. It has now been a month and one week since he came. Each day is a day to wake up in dreaded anticipation of what he will do today. Some are peaceful, but not many. He still argues about driving, curses the doctor, chafes at the restrictions and blames it mostly on me, the "gestapo" of his life.
This past week we did try a day at adult care, but that was a disaster. He was much more functional than the others and knew it. He felt humiliated and insulted and extra angry. On Friday, yesterday, we took him to the senior citizen center where he could just hang out and play some cards. He liked it better. But, Jacque and I had about 24 hours of things we were behind on and only 4 hours to get it done. No, it didn't get done in 4 hours. Work has been slow where Jacque works and she has gladly taken the days off all week to get some things done, but somehow it never happens. When he is up, he is almost always in need of attention. When he goes to bed, we are too tired to finish the unfinished things.
I have been reading "The 36 Hour Day", a guidebook for primary caregivers of Alzheimer's patients. It has been helpful. One of the best parts is what it tells us to tell all the other people who aren't primary caregivers when they have suggestions. "That's a great idea, when are you going to come and do it?" Since noone but other primary caregivers have a clue what are life has become, suggestions of what we should do are welcome only if the suggester is the one who is going to do it. We'll glady take words of encouragement. Words of criticism will always hurt but will be generally ignored as the words of the ignorant. A day or hour of relief will always be welcome. Mary gave us 4 precious hours last night so Jacque and I could go out and eat and just stay away for 4 hours.
Today is the first day of the blog, and I felt it necessary to give a little background. Today we started on cleaning up after the construction of getting his bathroom in. We laid new carpet, put in a new closet, put the finishing touches on the bathroom. Pete gave us 3 hours of dedicated work to make it possible. Abby kept Dad busy doing a puzzle for almost 3 hours so he would not try to "help". Beginning at 10am we finished at 5pm, and then Pete showed me how to get this blog site set up. So, that brings us up to date. We will get pictures on as soon as we can. We will try to update daily with both events and emotions related to them. Venting may be my only link to sanity. Bear with us and enjoy both the Sunshine and the Shadows of Dad's Descent.
David
As the weeks have passed the weight of the responsibility began to mushroom. My office was dismantled and became his bedroom. I still don't know where most of my things are that used to be in the office, things I am beginning to need. Then we put in a new bathroom next to the office so he would have his own bath with less worry about his wandering around in the night. (Fortunately, this hasn't happened, but it is coming.) Of course, all this time has been filled with constant complaint and denial of his condition and argument about wanting to drive and go to see Dar in Illinois.
The visiting nurse, a specialist in dementia came and gave him a very thorough follow up exam to what the doctor had given him. She verified the diagnosis and put him at early level 5 on the 7 level scale of Alzheimer's. That means that he can no longer drive, handle his finances or live successfully independently. It has now been a month and one week since he came. Each day is a day to wake up in dreaded anticipation of what he will do today. Some are peaceful, but not many. He still argues about driving, curses the doctor, chafes at the restrictions and blames it mostly on me, the "gestapo" of his life.
This past week we did try a day at adult care, but that was a disaster. He was much more functional than the others and knew it. He felt humiliated and insulted and extra angry. On Friday, yesterday, we took him to the senior citizen center where he could just hang out and play some cards. He liked it better. But, Jacque and I had about 24 hours of things we were behind on and only 4 hours to get it done. No, it didn't get done in 4 hours. Work has been slow where Jacque works and she has gladly taken the days off all week to get some things done, but somehow it never happens. When he is up, he is almost always in need of attention. When he goes to bed, we are too tired to finish the unfinished things.
I have been reading "The 36 Hour Day", a guidebook for primary caregivers of Alzheimer's patients. It has been helpful. One of the best parts is what it tells us to tell all the other people who aren't primary caregivers when they have suggestions. "That's a great idea, when are you going to come and do it?" Since noone but other primary caregivers have a clue what are life has become, suggestions of what we should do are welcome only if the suggester is the one who is going to do it. We'll glady take words of encouragement. Words of criticism will always hurt but will be generally ignored as the words of the ignorant. A day or hour of relief will always be welcome. Mary gave us 4 precious hours last night so Jacque and I could go out and eat and just stay away for 4 hours.
Today is the first day of the blog, and I felt it necessary to give a little background. Today we started on cleaning up after the construction of getting his bathroom in. We laid new carpet, put in a new closet, put the finishing touches on the bathroom. Pete gave us 3 hours of dedicated work to make it possible. Abby kept Dad busy doing a puzzle for almost 3 hours so he would not try to "help". Beginning at 10am we finished at 5pm, and then Pete showed me how to get this blog site set up. So, that brings us up to date. We will get pictures on as soon as we can. We will try to update daily with both events and emotions related to them. Venting may be my only link to sanity. Bear with us and enjoy both the Sunshine and the Shadows of Dad's Descent.
David
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