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.
Monday, April 23, 2007
Friday, April 13, 2007
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.
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.
Monday, April 09, 2007
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.
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.
Sunday, April 01, 2007
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.
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.
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