It is the last day of 2008. It has not been a good year for Dad. Too say that he is in a frequent fog would be to put the case mildly. His forgetfulness has fully affected his long, mid and short term memory to a state of total impairment. He cannot repeat a simple statement without confusion. A case in point would be today when he came home and said that there was some kind of schedule problem at the adult day care. Of course, those aren't the words that he used, but I had it figured out since tomorrow is New Year's Day and the center is closed. I was expecting some kind of comment, so it was easier to figure out what he was trying to say. I said, "Yes, it is closed for New Year's Day, do you understand?" He just looked at me. I repeated myself more loudly as he might not have heard. The ear doctor said that he had no way of determining if Dad could hear or not since he could not give any appropriate responses. Anyway, with a louder statement and more slowly spoken, he just looked at me and said, "No." I said, "Repeat after me, New (pause) Year's (pause) Day." He just looked at me. We tried again. And again. And again. No, he could not get past the word "new". He just couldn't do it.
Yes, that brings us to Christmas. He didn't get that either. It was such a dramatic change from last year that it was astounding. As we built up to Christmas he said nothing. He made no comment about decorations. When we discussed Christmas he showed no comprehension of what it was. Last year he wanted to buy presents. This year he was without any understanding of the day. On Christmas Eve the center closed early. They had explained it to them, but he didn't get it. When he came home we explained it to him, but he didn't get it. We told him the center would be closed the next day, but he didn't get it. We went to Christmas Eve service at church. He didn't know why we were going or what it was about. After church we reminded him that there would be no bus in the morning. He wanted to know why. We explained that it was Christmas but he didn't understand. On Christmas day we opened our presents. He just sat there with his and kept looking at them over and over. (Yes, he opened them.) He was in a fog. He was home for Christmas, but only in his dream world, not in reality.
His routine is all that there is left. That has been messed with a lot lately. There was a snow day that closed down the center. Routine upset. He had a hard time with that. The next day my brother couldn't stay long as we were having another blizzard that afternoon. Routine upset. The next day church services were canceled because of the blizzard. Routine upset. The following week there was early closure of the center on Christmas Eve and no center on Christmas day. Routine upset. This week it is closed tomorrow. Routine upset. It is no longer an issue of not liking to go to the center. The center is his life, his routine. That is a quantum change from the beginning of this year when he still routinely complained about going because he didn't like it. All the big events that he could grasp at least a little are now ungraspable. His decline has accelerated from the "Bunny Slope" to the "Expert Slope" level. Since it was bad for him before, and he was confused before, it is worse for him now. Sometimes he looks like he knows that he is in a fog, that he can't grasp things said or thoughts thought. Then he looks weakly and sadly with a shrug and then it is all gone again. NO, it has not been a good year for Dad. He has dived faster and farther than the stock market. Next year he won't be home, not home here anyway, for Christmas. This is his last year here, but maybe he wasn't here already.
What next? Our top three choices for nursing homes told us two weeks ago that they had no planned openings until late March or April. That was an incredibly shocking bit of news and diminished our sunshine in this descent. We are committed to placing him in the best possible facility and not taking just any place to get him placed. We have no choice number four when it comes to homes. Unless there is an unexpected opening, we will have Dad for another 3 to 4 months. That is 3 to 4 months of his not really being here, but requiring much more care as a consequence. For Dad there is now only descent. For us, the weather seems to have turned a bit cloudy. We thank God that He is always behind the clouds casting his Sonshine. In the coming months, that will be our sunshine in this accelerating descent.
Wednesday, December 31, 2008
Friday, December 05, 2008
Little things and big things
Years ago a good friend of mine was a second grade teacher. She told me that she hated weekly reader days. Since I always liked weekly reader, I wondered why she didn't. How many times can you hear and laugh at the same lame joke? she asked. Every student would read the joke page and then go to her desk and ask her the same riddle or tell the same joke. At first it was cute, but at the end of the day it had gone to the proverbial straw and the camel's back. Such a little thing became big, like Chinese water torture or the great science fair demonstration of how erosion works by placing a bar of soap below a slowly leaking faucet. Just a little thing, but the effects are enormous over time. Are they little things or big things?
Is it little or big? 1) Having to strap him into his seat in the car each time we go somewhere because he can't figure out the seat belt. 2) Hearing the same story at every meal about his grandparents and their 14 children and how they ate in shifts. (That is approximately 1000 supper meals where we have heard the same story.) 3) Seeing his unclean hair, dry shower stall and no wet towels why he swears he just took a shower and swears at you for doubting him. 4) Having him mumble incoherent syllables and then in a moment of clarity ask, "well, what do you think?" 5) Never washing his hands after he goes to the bathroom, which is usually just before dinner, and then holding his hand during prayer for the meal. 6) Rapping on the wall just before entering any room. 7) Standing in the most used passageway in the house indifferent to all the traffic trying to get by. 8) Arguing about the waste of soap and water when he is made to wash his hands before drying the dishes. (A note here, he insists on helping by drying the dishes after supper each night. He also insists on making a major production out of not needing to wash those still filthy hands.) 9) Those sudden unannounced appearances (the few times he doesn't announce his arrival with a rap on the wall) which almost always happen long after you think he is sound asleep in bed. (He can be quieter than a cat.) These appearances are almost always accompanied by the one word expression, "well?" 10) Getting his coat and hat on twenty to thirty minutes early each morning to wait for the bus in the hottest room in our house (the kitchen) and then sitting there for those twenty to thirty minutes saying, "I guess they forgot about me today." These 10 items are not prioritized, just listed. N0 big deal in and of themselves. Repeat daily ad infinitim nauseum. Throw in the big things and mix well until you would tell the national secrets to anyone who asked.
Are these little or big? 1) Grabbing toys away from 3 year old great grandchildren because you don't know what the toy is or why they have it. 2) Throwing one of those 3 year olds on the floor and twisting his arm to get one such toy. 3) Swearing at anyone who challenges such actions, or other actions he cannot otherwise explain. 4) Playing hide and seek with his dirty underwear which was dirtied by an accident which he swears (literally) he never has. (Somebody else in his room sure has a lot of them then.) 5) Lashing the dog to the lever on his recliner because he didn't want her to leave his room. 6) Trying to pick up but instead dropping his 1 year old great granddaughter and then swearing (literally) that he didn't and why is everyone upset. 7) Provoking the dog with constant teasing gestures until she nips at him. (So far so good. She is a good dog and does no harm, but she has gotten quite agitated at times.) Again, these are not prioritized, just listed. These happen with some frequency, but not daily like the others. Now blend them into the pot with general incoherence, confusion on what he is trying to say and you are trying desperately to figure out, the frustration that brings to both parties, and then mix in the final ingredients of paranoia and persectution complex which is often a by product of Alzheimer's disease and the stew is ready.
Oh, there is one final ingredient. This week the nursing home said they have no beds available for men and don't have any planned vacancies in the near future. A four month pre-registration time turns out to have been highly inadequate. We are so thankful for the services provided by community agencies like adult day care, home health aids, visiting nurses, quarterly social worker visits and of course caring friends like the one who comes weekly to play cribbage with Dad. My bride and I have had an opportunity on many of those cribbage days to take a walk and relax for a half hour. Wonderful. These people are the icing on the cake that hides all the lumps of the cake batter. The candles on the cake are our daughters who take time from their busy schedules and watch him when we absolutely have to get something done and he is not at adult day care. There is my brother who comes once a week and takes Dad out to supper. One meal without the story of 14 grandchildren is more of a treat than many would realize. It does take a village to care for an Alzheimer's patient. The village is the sunshine in the descent.
Is it little or big? 1) Having to strap him into his seat in the car each time we go somewhere because he can't figure out the seat belt. 2) Hearing the same story at every meal about his grandparents and their 14 children and how they ate in shifts. (That is approximately 1000 supper meals where we have heard the same story.) 3) Seeing his unclean hair, dry shower stall and no wet towels why he swears he just took a shower and swears at you for doubting him. 4) Having him mumble incoherent syllables and then in a moment of clarity ask, "well, what do you think?" 5) Never washing his hands after he goes to the bathroom, which is usually just before dinner, and then holding his hand during prayer for the meal. 6) Rapping on the wall just before entering any room. 7) Standing in the most used passageway in the house indifferent to all the traffic trying to get by. 8) Arguing about the waste of soap and water when he is made to wash his hands before drying the dishes. (A note here, he insists on helping by drying the dishes after supper each night. He also insists on making a major production out of not needing to wash those still filthy hands.) 9) Those sudden unannounced appearances (the few times he doesn't announce his arrival with a rap on the wall) which almost always happen long after you think he is sound asleep in bed. (He can be quieter than a cat.) These appearances are almost always accompanied by the one word expression, "well?" 10) Getting his coat and hat on twenty to thirty minutes early each morning to wait for the bus in the hottest room in our house (the kitchen) and then sitting there for those twenty to thirty minutes saying, "I guess they forgot about me today." These 10 items are not prioritized, just listed. N0 big deal in and of themselves. Repeat daily ad infinitim nauseum. Throw in the big things and mix well until you would tell the national secrets to anyone who asked.
Are these little or big? 1) Grabbing toys away from 3 year old great grandchildren because you don't know what the toy is or why they have it. 2) Throwing one of those 3 year olds on the floor and twisting his arm to get one such toy. 3) Swearing at anyone who challenges such actions, or other actions he cannot otherwise explain. 4) Playing hide and seek with his dirty underwear which was dirtied by an accident which he swears (literally) he never has. (Somebody else in his room sure has a lot of them then.) 5) Lashing the dog to the lever on his recliner because he didn't want her to leave his room. 6) Trying to pick up but instead dropping his 1 year old great granddaughter and then swearing (literally) that he didn't and why is everyone upset. 7) Provoking the dog with constant teasing gestures until she nips at him. (So far so good. She is a good dog and does no harm, but she has gotten quite agitated at times.) Again, these are not prioritized, just listed. These happen with some frequency, but not daily like the others. Now blend them into the pot with general incoherence, confusion on what he is trying to say and you are trying desperately to figure out, the frustration that brings to both parties, and then mix in the final ingredients of paranoia and persectution complex which is often a by product of Alzheimer's disease and the stew is ready.
Oh, there is one final ingredient. This week the nursing home said they have no beds available for men and don't have any planned vacancies in the near future. A four month pre-registration time turns out to have been highly inadequate. We are so thankful for the services provided by community agencies like adult day care, home health aids, visiting nurses, quarterly social worker visits and of course caring friends like the one who comes weekly to play cribbage with Dad. My bride and I have had an opportunity on many of those cribbage days to take a walk and relax for a half hour. Wonderful. These people are the icing on the cake that hides all the lumps of the cake batter. The candles on the cake are our daughters who take time from their busy schedules and watch him when we absolutely have to get something done and he is not at adult day care. There is my brother who comes once a week and takes Dad out to supper. One meal without the story of 14 grandchildren is more of a treat than many would realize. It does take a village to care for an Alzheimer's patient. The village is the sunshine in the descent.
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