Post 2 of 2 (At least so far today.)
After a lovely early morning at the Botanic Garden with our friend Jake; we dropped Jake at home, did a few errands, and finally arrived home ourselves. I was tired and possibly Gregory was over tired.
I got out of the parked car and went to the trunk to collect our belongings. I walked away from the car, as I sometimes do, as Gregory was taking a little longer than usual to get himself out of the car.
I looked back and realized he had forgotten to unfasten his seat belt and was trying (his not comprehending why the difficulty) to get out of the car.
I decided that this was an occasion for me to wait and to give him the time and space to figure out how to get himself unbelted. Things quickly got more complicated. He slipped his arm from under the belt without unfastening it and tried again to get out of the car. Next he took his gloves out of his pocket and tried again. Next his ear muffs and finally his scarf before he successfully got himself partially out of his coat while still restrained.
By now he had twisted himself so badly that I am not sure he would ever have gotten out by himself but I decided I needed to wait until he realized the trouble he was in and asked for my help. I stood by patiently with a gentle look on my face but he didn't notice, or look at me or even realize even, I believe, that I was standing there ready to help.
He didn't panic or get overly frustrated so I held my ground, waiting. Finally he looked up and registered that I was there. "I'm working on it." he said.
"I will be happy to help" I replied, "just ask ... 'Michael I need some help.'"
"I need some help," came the echo. So I put the parcels I was holding on the hood and proceeded to help him. He was so badly wrapped up in belt, scarf, coat, etc that it took me a while to get him unwrapped. And I had to force his body uncomfortably through this line and over that line and around the other. He was a little panicked by now and fought me a little. I had to calm him down and proceed.
By the time we were done, it felt like I almost had to tip him on his head while he was hanging out the car door but finally WE were free from restraint.
"You forgot to unfasten the belt before you got out," I by force of habit said. And due to his disability, I am sure my comment made no difference to him. We proceeded up the stairs to the condo. He had a drink of water and took a nap as did I.
Another lovely day on a lovely outing.
Showing posts with label Frustration (Mine). Show all posts
Showing posts with label Frustration (Mine). Show all posts
Monday, October 21, 2013
Thursday, October 17, 2013
To Read or Not to Read
I am still trying to figure out how I can help Gregory continue to read at bedtime. Perhaps I should rehearse what I should have said instead of what I did say when he handed me his book on the same page it was on when I gave it to him an hour earlier.
He often closes the book and cannot explain where he left off. When asked "Where did you stop? or finish? or end? (various words tried on various nights) he is unable to tell me. Often he points to where he began!
I think that he still comprehends although may not remember. So each period of time spent with reading is probably an isolated event, without his being able to paint the entire picture of the story, but he still enjoys his reading.
I am afraid that another problem is that Gregory might not any longer understand the mechanics of reading. Top to bottom. Left to right. Front to back. Turn page, begin again.
I show him where to begin reading, I keep an eye on the page he is on, I note where his eyes seem to be, and I mark the place he ended reading. But you can imaging what this means then when "HE" is reading and "I" am in charge!
Last night I dozed off while he was reading, when I woke and began to mark where he had left off, I saw that he was on the same page again. After success for the last week or so, I commented, "I cannot fucking believe that you are still on the same page! Did you loose your place? Do you remember where you ended? How are we going to do this?" Nicely done, don't you think! NOT.
What happens is that with these intermittant behaviors, with the ones that come and go, the ones which are here and unexpectedly evaporate ... I react according my expectations for what is a "normal" behavior not Gregory's ever changing "normal" and I freak. I speak out of anger, out of fear, out of worry for the future, out of defeat of all the work I did to try to help him hang on to the skill a little longer.
I do not respond this way to those skills and behaviors that no longer exist or more consistently come and go or are for the most part on their way out. I have developed lowered expectations for these type of interactions and deal with them as I support him. It is the "slaps in the face" or unexpected disappearances that freak me out.
I am working on it and have gotten better but I still am BELOW satisfactory on dealing with these kinds of occurrences. Most often my reaction is seated in the deep loss and sadness and grief and devastation that I feel for what he must be going through and then I end up treating him poorly.
So perhaps I should rehearse what I should have said instead of what I did say when he handed me his book on the same page it was on when I gave it to him an hour earlier.
Say nothing and have him begin in the same place the next night. Most likely I am the only one who will remember and I'll just have to swallow my despair which will be better than treating Gregory poorly and making him feel badly.
Bring on the next defeat...
He often closes the book and cannot explain where he left off. When asked "Where did you stop? or finish? or end? (various words tried on various nights) he is unable to tell me. Often he points to where he began!
I think that he still comprehends although may not remember. So each period of time spent with reading is probably an isolated event, without his being able to paint the entire picture of the story, but he still enjoys his reading.
I am afraid that another problem is that Gregory might not any longer understand the mechanics of reading. Top to bottom. Left to right. Front to back. Turn page, begin again.
I show him where to begin reading, I keep an eye on the page he is on, I note where his eyes seem to be, and I mark the place he ended reading. But you can imaging what this means then when "HE" is reading and "I" am in charge!
Last night I dozed off while he was reading, when I woke and began to mark where he had left off, I saw that he was on the same page again. After success for the last week or so, I commented, "I cannot fucking believe that you are still on the same page! Did you loose your place? Do you remember where you ended? How are we going to do this?" Nicely done, don't you think! NOT.
What happens is that with these intermittant behaviors, with the ones that come and go, the ones which are here and unexpectedly evaporate ... I react according my expectations for what is a "normal" behavior not Gregory's ever changing "normal" and I freak. I speak out of anger, out of fear, out of worry for the future, out of defeat of all the work I did to try to help him hang on to the skill a little longer.
I do not respond this way to those skills and behaviors that no longer exist or more consistently come and go or are for the most part on their way out. I have developed lowered expectations for these type of interactions and deal with them as I support him. It is the "slaps in the face" or unexpected disappearances that freak me out.
I am working on it and have gotten better but I still am BELOW satisfactory on dealing with these kinds of occurrences. Most often my reaction is seated in the deep loss and sadness and grief and devastation that I feel for what he must be going through and then I end up treating him poorly.
So perhaps I should rehearse what I should have said instead of what I did say when he handed me his book on the same page it was on when I gave it to him an hour earlier.
Say nothing and have him begin in the same place the next night. Most likely I am the only one who will remember and I'll just have to swallow my despair which will be better than treating Gregory poorly and making him feel badly.
Bring on the next defeat...
Tuesday, October 15, 2013
Meanwhile, I Die
Most nights I don't just go to sleep. I die.
There are so many things that can go wrong at bedtime and being tired myself I don't always handle them as well as I should. Although I am getting better.
The hallway from the front door to the living room runs parallel to our master bathroom. So it is sometimes difficult for Gregory to know where he needs to go to brush his teeth. This evening he was hanging out in the hallway and I asked, "What are you doing?"
As usual he couldn't really explain so I followed up with, "There isn't anything out there that you need to worry about now."
He disagreed.
I suggested, "Do you want to brush your teeth?" as he reentered the bedroom.
"Yes. That is what I was going to do."
So I pointed to the bathroom and said, "That is where you brush your teeth."
He proceeded to go into the bathroom and brush his teeth.
Meanwhile, I died.
This is a new behavior that I have just identified at bedtime, although at other times, when I tell him to go into the bathroom, or the guest bathroom, or the TV room, or the bedroom; he is not sure where I want him to go.
Brushing his teeth is also confusing. He can find the toothbrush and toothpaste (although never puts them back where they came from, I do that for him.)
Figuring out how to take off the cap on the toothpaste, squeeze a nurdle of paste onto the brush, wet the brush, and then brush and rinse works most of the time.
But every third, or seventh, or nineteenth time he get frozen at one or another of the steps so I have to unravel the mystery for him. The hard part for me is the coming and going of his intermittant ability and that clouds how I react.
Sometimes I can "swallow" my reaction, other times I comment on the absurdity of his behavior if only because after the fourteenth or fifteenth time I forget that he gets confused while brushing his teeth. I treat him like his "normal" was my "normal" and then apologize.
What I cannot do for sure is explain to him where he went wrong or why, for example, explaining to him that filling the cap with paste after taking it off the tube of tooth paste is not part of the process.
Meanwhile, I die.
Taking his daytime clothes off and putting them on the bench for me to put them in the closet doesn't always work. He stops short of his underpants and undershirt and if I say something like, "Take off the rest." That makes no sense to him. If I point, it doesn't always help. If I yank on the articles of clothing in question, that doesn't always work either.
Sometimes before I can get to him, he puts his sleep bottoms over his underwear, or puts tops or bottoms on backwards, or inside out. Sometimes he will recognize the problem but not know how to fix it. When he doesn't realize the problem, maybe I should just keep my mouth shut and accept his "normal" and not care how many layers he is wearing or in what direction they are facing. I am working at getting better at this but instead I try to help.
Meanwhile, I die.
In the next BLOG I will talk about reading at bedtime. This hasn't been working well for a while, I have tried many different approaches, sometimes they work, other times they do not. What I do know is that with all I have to do to get the house and Gregory put to bed, I no longer have time to read. I miss it ... and I die.
There are so many things that can go wrong at bedtime and being tired myself I don't always handle them as well as I should. Although I am getting better.
The hallway from the front door to the living room runs parallel to our master bathroom. So it is sometimes difficult for Gregory to know where he needs to go to brush his teeth. This evening he was hanging out in the hallway and I asked, "What are you doing?"
As usual he couldn't really explain so I followed up with, "There isn't anything out there that you need to worry about now."
He disagreed.
I suggested, "Do you want to brush your teeth?" as he reentered the bedroom.
"Yes. That is what I was going to do."
So I pointed to the bathroom and said, "That is where you brush your teeth."
He proceeded to go into the bathroom and brush his teeth.
Meanwhile, I died.
This is a new behavior that I have just identified at bedtime, although at other times, when I tell him to go into the bathroom, or the guest bathroom, or the TV room, or the bedroom; he is not sure where I want him to go.
Brushing his teeth is also confusing. He can find the toothbrush and toothpaste (although never puts them back where they came from, I do that for him.)
Figuring out how to take off the cap on the toothpaste, squeeze a nurdle of paste onto the brush, wet the brush, and then brush and rinse works most of the time.
But every third, or seventh, or nineteenth time he get frozen at one or another of the steps so I have to unravel the mystery for him. The hard part for me is the coming and going of his intermittant ability and that clouds how I react.
Sometimes I can "swallow" my reaction, other times I comment on the absurdity of his behavior if only because after the fourteenth or fifteenth time I forget that he gets confused while brushing his teeth. I treat him like his "normal" was my "normal" and then apologize.
What I cannot do for sure is explain to him where he went wrong or why, for example, explaining to him that filling the cap with paste after taking it off the tube of tooth paste is not part of the process.
Meanwhile, I die.
Taking his daytime clothes off and putting them on the bench for me to put them in the closet doesn't always work. He stops short of his underpants and undershirt and if I say something like, "Take off the rest." That makes no sense to him. If I point, it doesn't always help. If I yank on the articles of clothing in question, that doesn't always work either.
Sometimes before I can get to him, he puts his sleep bottoms over his underwear, or puts tops or bottoms on backwards, or inside out. Sometimes he will recognize the problem but not know how to fix it. When he doesn't realize the problem, maybe I should just keep my mouth shut and accept his "normal" and not care how many layers he is wearing or in what direction they are facing. I am working at getting better at this but instead I try to help.
Meanwhile, I die.
In the next BLOG I will talk about reading at bedtime. This hasn't been working well for a while, I have tried many different approaches, sometimes they work, other times they do not. What I do know is that with all I have to do to get the house and Gregory put to bed, I no longer have time to read. I miss it ... and I die.
Monday, September 30, 2013
The Scourge of Helpfulness
There is an old story that goes: You can tell the difference between old age and Alzheimer's Disease. In old age you forget where you put your glasses. In Alzheimer's you forget you wear glasses!
This morning Gregory came into the bedroom. Something is wrong. He had been trying to take his morning pills in the kitchen but his glass of water was in the bedroom. Sometimes, when I am in the kitchen with him, I remind, "Your water is in the bedroom." Sometimes this helps, other times it doesn't. Other times I walk him into the bedroom and point at the water. Sometimes this helps, other times it doesn't. Still other times I take him over to the nightstand and hand him his water. Still yet other times I bring the water into the kitchen to avoid all this confusion. Either way, he does not associate having a glass of water with part of the process of taking his pills. At least not all of the time and now-a-days less and less.
Next he was at his table in the living room (which he cannot associate by name as in "Please go put this on your table.") fumbling with his reading glasses. He put them on his glass case, then next to his glass case, then under his glass case. I helped, "Put them IN your glass case." Didn't help so I backed out. This upset him so I explained, "No problem ... I tried to help but it didn't help so I backed off ... No harm done ... No babies are dying ... I love you ... That is all that matters." To which he replied, "OK."
When he sat down to read the newspaper, I realized the problem. He had some vague idea that he needed his reading glasses to read the newspaper but didn't connect the pieces, i.e. get glasses, sit down in front of your newspaper, put glasses on, read the newspaper. Instead, after the previous short circuit, he just sat in front of the newspaper confused. Again, I tried to help. I asked, "Can you read the newspaper?" "What?" "Can you see the newspaper?" "What do you mean?" So I went over and got his glasses and handed them to him. "Yes, I was going to get my glasses," he replied. OK.
Now how to handle all of this may seem obvious to you. And what I should have said, or not said, may be what you are thinking about. And I too, in looking back, realize several different ways I could of handled this. And maybe next time I will be able to handle it differently. At least this time I didn't get angry, or rude, or short, or impatient. But also I wasn't helpful. I also realize that no matter what I do, being helpful most often backfires on me.
And don't judge until you are the one trying to figure out how to go about ANYTHING with a person who is fairly advanced in Alzheimer's.
A final example. This morning he got his undershirt and underpants on correctly but had his sweatshirt on backwards. He realized this and corrected it. Next he got his sweatpants on backwards and corrected it three times only to have them on backward again. I helped, "You keep putting them on the same way. Try turning them around." So he held the pants up in front of himself and turned around. Not the pants but rather his body. Then holding the pants in front of him (oriented incorrectly) he walked forward and then backward and did this two more times. I got up and using his hands, slowly helped him to turn the pants around the correct way, in my mind trying to demonstrate the process. "Now try them on I suggested." He did, they were on the right way, but I don't think he really understood what had happened.
Somehow, I keep going.
This morning Gregory came into the bedroom. Something is wrong. He had been trying to take his morning pills in the kitchen but his glass of water was in the bedroom. Sometimes, when I am in the kitchen with him, I remind, "Your water is in the bedroom." Sometimes this helps, other times it doesn't. Other times I walk him into the bedroom and point at the water. Sometimes this helps, other times it doesn't. Still other times I take him over to the nightstand and hand him his water. Still yet other times I bring the water into the kitchen to avoid all this confusion. Either way, he does not associate having a glass of water with part of the process of taking his pills. At least not all of the time and now-a-days less and less.
Next he was at his table in the living room (which he cannot associate by name as in "Please go put this on your table.") fumbling with his reading glasses. He put them on his glass case, then next to his glass case, then under his glass case. I helped, "Put them IN your glass case." Didn't help so I backed out. This upset him so I explained, "No problem ... I tried to help but it didn't help so I backed off ... No harm done ... No babies are dying ... I love you ... That is all that matters." To which he replied, "OK."
When he sat down to read the newspaper, I realized the problem. He had some vague idea that he needed his reading glasses to read the newspaper but didn't connect the pieces, i.e. get glasses, sit down in front of your newspaper, put glasses on, read the newspaper. Instead, after the previous short circuit, he just sat in front of the newspaper confused. Again, I tried to help. I asked, "Can you read the newspaper?" "What?" "Can you see the newspaper?" "What do you mean?" So I went over and got his glasses and handed them to him. "Yes, I was going to get my glasses," he replied. OK.
Now how to handle all of this may seem obvious to you. And what I should have said, or not said, may be what you are thinking about. And I too, in looking back, realize several different ways I could of handled this. And maybe next time I will be able to handle it differently. At least this time I didn't get angry, or rude, or short, or impatient. But also I wasn't helpful. I also realize that no matter what I do, being helpful most often backfires on me.
And don't judge until you are the one trying to figure out how to go about ANYTHING with a person who is fairly advanced in Alzheimer's.
A final example. This morning he got his undershirt and underpants on correctly but had his sweatshirt on backwards. He realized this and corrected it. Next he got his sweatpants on backwards and corrected it three times only to have them on backward again. I helped, "You keep putting them on the same way. Try turning them around." So he held the pants up in front of himself and turned around. Not the pants but rather his body. Then holding the pants in front of him (oriented incorrectly) he walked forward and then backward and did this two more times. I got up and using his hands, slowly helped him to turn the pants around the correct way, in my mind trying to demonstrate the process. "Now try them on I suggested." He did, they were on the right way, but I don't think he really understood what had happened.
Somehow, I keep going.
Sunday, August 18, 2013
A New Day
How do you continue each day when you walk into the bathroom to find your love sitting on the toilet, seeing if he has to go to the bathroom before you go shopping, with his shorts and underpants still up around his waist? How do you continue each day when he doesn't even realize what is wrong and isn't able to respond to your, "Honey, you might want to lower your pants."
According to our niece, you are not supposed to yell at him. She is definitely right. But how do I continue each day? I am kind, I am supportive, and sometimes I yell.
Next major hurdle. Gregory has lost the process involved in reading at bedtime. I've wondered about the comprehension possibilities but now he doesn't know how a book works. He started just closing the book without placing his book mark when he was finished reading and couldn't show me where he left off. I started prompting him each night before we started reading and he said he understood. Not successful.
So I started marking his place with a post it and a pencil notation so I could help monitor. I would try to see where he was, take the book before he could close it and mark the place. Every night before we began I would remind him, "Don't just close the book, show me where you stop." After he stopped he could not respond to showing me where.
Most recently, he has been on the same few pages for about a week. Out of the corner of my eye, while I was reading, I saw he had progressed two pages and then turned to the next page, turned back, turned ahead again, then turned back. I do not think he knew what to do next or understand the flow of a book. Last night he read about two paragraphs to my ten pages. He announced he was finished but couldn't point to where he left off. I cried myself to sleep.
Right this minute, after a second, this time successful attempt to go to the bathroom with his pants correctly around his ankles, he struggled for quite a while to fasten his belt. Finally accomplishing that I said in a complimentary tone, "I see you got your belt on OK."
He pointed to his Medic Alert bracelet, "This?"
According to our niece, you are not supposed to yell at him. She is definitely right. But how do I continue each day? I am kind, I am supportive, and sometimes I yell.
Next major hurdle. Gregory has lost the process involved in reading at bedtime. I've wondered about the comprehension possibilities but now he doesn't know how a book works. He started just closing the book without placing his book mark when he was finished reading and couldn't show me where he left off. I started prompting him each night before we started reading and he said he understood. Not successful.
So I started marking his place with a post it and a pencil notation so I could help monitor. I would try to see where he was, take the book before he could close it and mark the place. Every night before we began I would remind him, "Don't just close the book, show me where you stop." After he stopped he could not respond to showing me where.
Most recently, he has been on the same few pages for about a week. Out of the corner of my eye, while I was reading, I saw he had progressed two pages and then turned to the next page, turned back, turned ahead again, then turned back. I do not think he knew what to do next or understand the flow of a book. Last night he read about two paragraphs to my ten pages. He announced he was finished but couldn't point to where he left off. I cried myself to sleep.
Right this minute, after a second, this time successful attempt to go to the bathroom with his pants correctly around his ankles, he struggled for quite a while to fasten his belt. Finally accomplishing that I said in a complimentary tone, "I see you got your belt on OK."
He pointed to his Medic Alert bracelet, "This?"
Sunday, March 17, 2013
Scatology Part 2
Just when I have gotten over the previous dilemma, disappointment, impasse, lack of communication, misunderstanding, inability to discuss therefore solve or explain ... the SHIT hits the fan again.
Every hour on the hour I have been sending Gregory to sit on the toilet just in case he might need to move his bowels. I have tried to let him be more independent by not supervising. I go in after while, ask him to stand up, so I can check his progress. So far two small liquid movements. Several times nothing and that is good. NO accidents and that is even better.
I have stopped supervising his "wiping" having decided that if he is not as clean as he should be, so be it. We'll shower again tonight.
He just finished his 3:00 attempt in the bathroom. I came in several minutes later to see how he had done. Luckily he had not done anything because he forgot to pull down his underpants. There he was sitting on the toilet, folded toilet paper in hand at the ready, with his underpants full up.
I began to point out the problem but from the look on his face I could tell I was WASTING my breath talking about the situation. So I am writing this instead.
Again, not for your sympathy or your feeling like you want to help but can't. I am writing this because my BLOG is SOMEONE I can talk to and get some closure and do the theoretical count to ten to calm myself down.
1 ... 2 ... 3 ... 4 ... 5 ... 6 ... 7 ... ... ... ... ...
Every hour on the hour I have been sending Gregory to sit on the toilet just in case he might need to move his bowels. I have tried to let him be more independent by not supervising. I go in after while, ask him to stand up, so I can check his progress. So far two small liquid movements. Several times nothing and that is good. NO accidents and that is even better.
I have stopped supervising his "wiping" having decided that if he is not as clean as he should be, so be it. We'll shower again tonight.
He just finished his 3:00 attempt in the bathroom. I came in several minutes later to see how he had done. Luckily he had not done anything because he forgot to pull down his underpants. There he was sitting on the toilet, folded toilet paper in hand at the ready, with his underpants full up.
I began to point out the problem but from the look on his face I could tell I was WASTING my breath talking about the situation. So I am writing this instead.
Again, not for your sympathy or your feeling like you want to help but can't. I am writing this because my BLOG is SOMEONE I can talk to and get some closure and do the theoretical count to ten to calm myself down.
1 ... 2 ... 3 ... 4 ... 5 ... 6 ... 7 ... ... ... ... ...
Wednesday, September 12, 2012
The Case of the Missing Strawberry Shortcake
I am sure that some of this has to do with my own disappointment. I continue to tell myself, "Don't take it personally." But I take it personally. I can only imagine how he must have felt but for me I tried to do something nice for him and it only caused more problems. I keep trying.
The other day I planned to make us a nighttime treat. After dinner I made a batch of baking powder biscuits. Then I plucked and sliced the strawberries, sugared and lightly watered them to bring out their juices, and gave them a partial mash. Finally, everything was set aside for later.
After dinner we watched some TV then went into the kitchen together to assemble our dessert. G sat on the stool and watched as I sliced the biscuits and placed them on a plate, topped them with strawberries, and loaded the creation with lots of whipped cream. Kiddingly, Gregory used to say, "The only reason for shortcake is to be able to have lots of whipped cream."
I picked up my plate, pushed the other plate towards him saying, "Bring yours," and headed back to the TV room. A few minutes later (actually a few to many minutes later) Gregory arrived with the baggie of extra biscuits that had been set aside for breakfast.
"I am confused, aren't these too many?"
"Those are for tomorrow. Your strawberry shortcake is on the counter in the kitchen," I said amazed at where a short circuit of his brain had taken him. He had watched me assemble, he saw me pick up my plate, he had heard me say "Bring yours" as I pushed it towards him, but none-the-less he showed up carrying a baggie of leftover biscuits announcing he was confused.
At times like this my brain goes numb with disbelief as I struggle to interpret what had happened, remain calm, figure out the next step, still trying not to just do it for him. Maybe I should be grateful that he knew he was confused. Sometimes he doesn't realize he is confused and behaves as if he knows what he is doing.
So he went back to the kitchen to look for his strawberry shortcake and was gone again for quite a while. Waiting is difficult for me but I still believe that it is important to allow him time to solve his own problem. Sometimes he is able to do so.
Finally I got up and went to see how he was doing. I found him looking around the kitchen not knowing what to do. By then he had probably forgotten where his strawberry shortcake was, the kitchen in his mind must be a HUGE COMPLICATED place, and maybe he had even forgotten why he was standing there.
I pointed out his plate and he said something like, "Oh that was easy."
For him, maybe. For me, devastating.
I know, I know. You are probably thinking why didn't I wait until I was sure he picked up his plate? Why didn't I just bring his into the TV room as well? Why didn't I just go back and get his for him? Why didn't I just do all this calmly without taking it personally, letting it diminish my good intentions, causing my mind to go numb, bringing a few tears of despair closer to the surface? That's easy for you to say.
At least this time I stayed calm and didn't get angry or say something like, "How could you not know what to do?" or worse. At times like this I have to balance back and forth between perceiving and treating him like he is normal and behaving and treating him according to his "current normal." Or figuring out in the field what to do next when what usually worked didn't work this time.
Not an easy job. I do get better at it. But my guess is that Gregory's decline will constantly my outpace improvement. The question is will I survive to outpace his Alzheimer's? Bon appetite!
Tuesday, February 28, 2012
On Vacation
Time to get up. I stay in bed a little longer because he usually takes about a half an hour to get his bathrooming completed.
He comes back to say, I need help with knobs and things.
You’re not taking a shower now are you?
No. I need light.
Why don’t you go back and try to figure out how to turn the light on by yourself?
He gets mad. Fuck You! (I think this is a first.) Why are you treating me like this? He goes back into the bathroom, no light, and sits on the toilet to move his bowels.
Hate talking about this as I have always said that one one way to stay young is to never to talk about your bowels and here I am talking about bowels … well at least not my own. Lately he has begun to forget, while sitting on the pot, if he wee’ed, if he went, if he wiped.
Finally I show him how to turn on the light. Mention that he seems to be at an all time low. Say I hate treating him like an invalid. Say that after four days in the same hotel room I would think he would know how to turn on the light. Say that I can help him brush his teeth if he would like.
He spends an inordinate amount of time showering (after I got the water running,) brushing his teeth, cleaning up. He isn’t able to see the deodorant which is on the counter in front of him. He looks at the travel soap dish and wonders aloud where the top is, until he taps it and realizes that the lid is on, it’s just clear. He is not sure where to rehang his wash cloth.
I help him select his clothes and suggest a few times how to dress. You might want to put your pants on before your shoes. I continue typing a blog avoiding dispair when sitting on the side of the bed he comments, “You know … I think … it has to do … with … fear … or something.
Of course I melt. I see he is near tears and go over to him and hug him close. He begins to cry. I sing-song to him, “You have nothing to fear. I am here to protect you. I will never let anything happen to you. I will take care of you. But I WILL challenge you now and then and I won’t always be nice to you. And we laugh. And the crisis has passed for both of us. And he says he isn’t afraid anymore. And I hold back tears through most of breakfast.
My thinking is that he may have been afraid of being in a strange place or at having such problems with everyday activities but I suspect that his fear was at angering me, causing me to be upset, and possibly fearing loss of my love. Perhaps it was fear, very much like a child’s fear when he has upset a parent, of having love withdrawn as punishment.
Which caused me to be upset. I’ll try harder. This vacation so far has not proved to be a vacation, at least not for me. Welcome to Circle World.
Wednesday, October 5, 2011
A New Observation
THE SITUATION:
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)
THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?
THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.
THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."
THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.
THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.
FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself up for trying.
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)
THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?
THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.
THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."
THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.
THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.
FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself up for trying.
Tuesday, August 23, 2011
Let Go
I have mentioned before that I find great solace in Unity Temple's "Daily Word." Not every day speaks to me but most often it does. I also clarify that I am a spiritual person not a religious person and continue to figure out what this thing called "God" is all about. You will note below that often I "alter" the religious overtones and make them my own. I am able to take the daily word at its word level and often the words make sense to me.
I found this entry a good suggestion for dealing with stressful interactions with Gregory. It addresses "one by one each concern for my life and the lives of my loved ones," which comes in handy, but I apply it instead to the difficulty of the moment and find that I am then able to respond calmly, lovingly, helpfully and not angrily or with frustration.
Try it...
I found this entry a good suggestion for dealing with stressful interactions with Gregory. It addresses "one by one each concern for my life and the lives of my loved ones," which comes in handy, but I apply it instead to the difficulty of the moment and find that I am then able to respond calmly, lovingly, helpfully and not angrily or with frustration.
Try it...
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Wednesday, June 15, 2011
Existence
Yesterday Gregory and I ran an errand at the hardware store. He was at my side as we went from department to department and as the various store personnel helped us fine what we needed. Then we headed for the checkout.
Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?
I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."
I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.
"Looking for you," he replied.
I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."
"I am sorry. I try my best."
"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"
I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.
Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."
Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?
I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."
I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.
"Looking for you," he replied.
I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."
"I am sorry. I try my best."
"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"
I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.
Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."
Tuesday, June 14, 2011
To Every Thing There Is a Season
I have found that with Alzheimer's Disease, to every thing there is NO season. We all have our routines. Most of us circle around our routines with tiny changes here and there. For example, as the seasons change, our routines change. We take longer walks, we dress differently for Summer than we do for Spring. The days are longer, the nights shorter, we sleep differently. We eat differently.
My latest awareness with Gregory and the progress of his dementia is that the seasons will change anyway but he is not be able to change with them. This Spring into Summer he has not been able to gauge what to wear, how to dress based on the temperature outside. The temperature means nothing, the weather forecast means nothing.
Jeans vs shorts, long sleeve vs short sleeve, heavy jacket vs light jacket ... mean nothing. When I suggest he wear an undershirt under his over shirt, the words do not translate. If I try to explain it only complicates things. If I get up and show him, it confuses.
Here I am again at a point where I find myself saying to myself, "I don't know how to do this." The tears are back, the sadness is back, the heaviness is back. I don't know how to do this. There is no answer. I don't know how to do this.
Yesterday, while at a meeting at the museum, I called to see how he was doing. I guess he got through breakfast alright but he answered, "I am not doing well." He sounded like something was terribly wrong. He sounded ill. He sounded distraught. He finally was able to explain (remember language doesn't work too well anymore) that he just didn't know what to put on so he could go out for a walk. I tried to suggest but it only confused. Finally I said, "Honey just put on anything, go outside, and see how it feels."
"I'll figure it out," was his reply. All I could do was tell him I love him, go back to my meeting, and hope for the best.
Just now as I am writing this, he brightly showed up and wished me, "Happy Birthday!"
"Why do you think today is someone's birthday?" I gently asked.
"Did I mess up again?" he wasn't able to explain.
"What made you think today was a birthday?"
After a thoughtful pause, "Oh, I can't go through all of that."
Turns out he thought it was his birthday (which is 7/4 and today is 6/14) but I am not sure what prompted that.
I think I'll go take a shower and cry.
The lyrics are taken almost verbatim from the Book of Ecclesiastes, as found in the King James Version of the Bible, (Ecclesiastes 3:1) though the sequence of the words was rearranged for the song. Ecclesiastes is traditionally ascribed to King Solomon.
With Alzheimers's ... there is only time ... |
Friday, May 27, 2011
How To Explain
How do I explain the interaction?
I speak with words, but they echo to the wind.
He responds as if my words were never his words.
And my thoughts echo, reverberate as though I was never spoken.
I speak with words, but they echo to the wind.
He responds as if my words were never his words.
And my thoughts echo, reverberate as though I was never spoken.
Sunday, April 3, 2011
Frustration Time Two
Today G and I had another one of our talks. He may or may not remember the talk but it helps me to process and it feels like we are sharing the dilemma of Alzheimer's. He is living it and I am feeling the repercussions of protecting him while dealing with my emotions as I watch his decline.
Today's talk centered around a number of events that took place this weekend. He was having trouble with doing something. I had to step in to help and this made him a little angry and short with me.
In a previous BLOG we came to the conclusion that: "...my helping him has become a choice between hurting his feeling less or hurting his feelings more. "
This time we came came to the conclusion that sometimes it seems like our choice is his being frustrated when he cannot do something or his frustration when I have step in to help. Either way ... FRUSTRATION.
Luckily (others would say Thank God) the frustration and anger is short lived and we just get on with living our life the best we can. He will usually end with, "I love you very much." I will reply, "That was never in question! I love you too."
Today's talk centered around a number of events that took place this weekend. He was having trouble with doing something. I had to step in to help and this made him a little angry and short with me.
In a previous BLOG we came to the conclusion that: "...my helping him has become a choice between hurting his feeling less or hurting his feelings more. "
This time we came came to the conclusion that sometimes it seems like our choice is his being frustrated when he cannot do something or his frustration when I have step in to help. Either way ... FRUSTRATION.
Luckily (others would say Thank God) the frustration and anger is short lived and we just get on with living our life the best we can. He will usually end with, "I love you very much." I will reply, "That was never in question! I love you too."
Tuesday, March 29, 2011
Why is it?
Why is it that I still have expectatons? Why is it that I still think he can learn? Why is it that I am surprised when he doesn't make connections? Why is it that I still ask him to do things to help me? Why is it that I still reason with him. Why is it that I still discuss things with him? Why is it that I still get angry and frustrated with him?
I guess because it is a measure of my respect for the person he was and is. Should I treat him like an idiot? Should I treat him like a child? Should I treat him as though he doesn't exist, or matter, or have emotions? I don't think I could do that.
So I just have to remind myself that when he doesn't meet my expectations, when he can't learn, when he can't make connections, when he can't help, when he can't be reasoned with ... I need to not get angry or frustrated ... just be patient and compassionate. The choice is mine.
I guess because it is a measure of my respect for the person he was and is. Should I treat him like an idiot? Should I treat him like a child? Should I treat him as though he doesn't exist, or matter, or have emotions? I don't think I could do that.
So I just have to remind myself that when he doesn't meet my expectations, when he can't learn, when he can't make connections, when he can't help, when he can't be reasoned with ... I need to not get angry or frustrated ... just be patient and compassionate. The choice is mine.
Sunday, March 6, 2011
Half Full or Half Empty
Is the glass half full or half empty? At dinner, I usually drink two glasses of water and Gregory usually doesn't drink any of his. The usual routine is that I hand him my empty glass and he gets me a refill from the water tap in the refrigerator. Sometimes he asks if I want more ice.
This evening I handed him my glass and asked for "A little more ice also please." In the time it took for him to put my glass down on his place mat and finish chewing his mouthful, he forgot which glass was mine.
First he picked up his glass but when he got to the refrigerator he realized it was already full. He brought it back. Put it down. Studied the area. Then pointed at the empty glass and said, "This one must be mine." Which confused him more.
"No, mine is the empty one."
"Oh." He picked up the empty one, took it to the refrigerator, filled it half way, and returned it to me. I thanked him, not commenting on the lack of any additional ice.
Now you tell me, half full or half empty?
This evening I handed him my glass and asked for "A little more ice also please." In the time it took for him to put my glass down on his place mat and finish chewing his mouthful, he forgot which glass was mine.
First he picked up his glass but when he got to the refrigerator he realized it was already full. He brought it back. Put it down. Studied the area. Then pointed at the empty glass and said, "This one must be mine." Which confused him more.
"No, mine is the empty one."
"Oh." He picked up the empty one, took it to the refrigerator, filled it half way, and returned it to me. I thanked him, not commenting on the lack of any additional ice.
Now you tell me, half full or half empty?
Saturday, March 5, 2011
A Recurring Theme
If you have been following this BLOG, or the events in Gregory and my life, you may have noticed that there seems to be a recurring theme: Expect Less, Love More.
As the disease continues to play havoc with Gregory's brain (I can actually picture the cells being destroyed one by one and the brain connections being snuffed out one by one) my learning curve and the progress of Gregory's Alzheimer's continues to present new, and different, and unexpected, and unfathomable experiences for me.
My goals are to do the best I can to keep him content, healthy, and safe. A sub-goal is to help his life be meaningful for him, to help him keep his dignity, to help keep him useful so he knows he is needed.
My goals might also include the same for me, especially keeping my mind and body healthy. I have to admit that while I know the importance of these personal goals about me, and while I do work at them, they do suffer.
As the changes continue to take place, sometimes at an accelerated rate, new levels difficulty in accomplishing my goals for him seem to come into play. For example last night there were several instances in which he was unable to follow very simple, one step directions.
They were based on easy to do (at least in my mind,) basic, up until now successful skills for him. One was to put cup cake papers in the cup cake tin. Another was to fill the dinner water glasses again for use at bedtime. A third was to pick up the cat's food for the evening.
Another example just happened as I was writing this BLOG. While he still seems able to us the computer to read his e-mail, see the day's news, and play an online game with Ken ... the computer and its use entails such a complex set of skills that he usually get confused and comes to me for help.
This time he was looking at the TRASH list of his e-mail, not today's e-mails. He was asking for my help but I didn't know how to help. The possibilities of why he needed help were so numerous that I didn't know where to begin. I didn't know how he ended up being in the TRASH. Explaining what was going on would only serve to confuse him. Asking questions to try to figure out how he got himself "cornered" only serves to confuse him more. Asking what he did just before he asked for the help is no longer part of his memory.
Last night was so frustrating that each time I just asked him to stop helping and I took over. His feelings were hurt but I knew that if I tried to explain what was expected, or how to do what I requested, he would only get more confused and I would get more frustrated (read angry.) So I just gently said, "Never mind honey, I'll do it." But he got his feeling hurt anyway.
It was then that I realized that currently, in many things, my helping him has become a choice between hurting his feeling less or hurting his feelings more. Let me repeat: hurting his feelings less or hurting his feelings more. Less is the obvious choice but non-the-less it hurts his feelings. So I cried.
Until now I have held the belief that in an effort to help him keep his dignity and sense of usefulness, it was worth the frustration, aggravation, and sometimes anger that I suffered when he could not follow through.
I no longer believe that it is worth my frustration, aggravaiton, and sometimes anger and especially not my emotional and physical health, when he cannot follow through.
So I will need to analyze each request for help more carefully and judge by his chance of success to determine if I even want to ask for help in the first place.
I will need to ask less, expect less, and love more. Him and myself.
He came to me to sooth my upset and said, "You can't always be perfect. Neither can I." So I cried more.
As the disease continues to play havoc with Gregory's brain (I can actually picture the cells being destroyed one by one and the brain connections being snuffed out one by one) my learning curve and the progress of Gregory's Alzheimer's continues to present new, and different, and unexpected, and unfathomable experiences for me.
My goals are to do the best I can to keep him content, healthy, and safe. A sub-goal is to help his life be meaningful for him, to help him keep his dignity, to help keep him useful so he knows he is needed.
My goals might also include the same for me, especially keeping my mind and body healthy. I have to admit that while I know the importance of these personal goals about me, and while I do work at them, they do suffer.
As the changes continue to take place, sometimes at an accelerated rate, new levels difficulty in accomplishing my goals for him seem to come into play. For example last night there were several instances in which he was unable to follow very simple, one step directions.
They were based on easy to do (at least in my mind,) basic, up until now successful skills for him. One was to put cup cake papers in the cup cake tin. Another was to fill the dinner water glasses again for use at bedtime. A third was to pick up the cat's food for the evening.
Another example just happened as I was writing this BLOG. While he still seems able to us the computer to read his e-mail, see the day's news, and play an online game with Ken ... the computer and its use entails such a complex set of skills that he usually get confused and comes to me for help.
This time he was looking at the TRASH list of his e-mail, not today's e-mails. He was asking for my help but I didn't know how to help. The possibilities of why he needed help were so numerous that I didn't know where to begin. I didn't know how he ended up being in the TRASH. Explaining what was going on would only serve to confuse him. Asking questions to try to figure out how he got himself "cornered" only serves to confuse him more. Asking what he did just before he asked for the help is no longer part of his memory.
Last night was so frustrating that each time I just asked him to stop helping and I took over. His feelings were hurt but I knew that if I tried to explain what was expected, or how to do what I requested, he would only get more confused and I would get more frustrated (read angry.) So I just gently said, "Never mind honey, I'll do it." But he got his feeling hurt anyway.
It was then that I realized that currently, in many things, my helping him has become a choice between hurting his feeling less or hurting his feelings more. Let me repeat: hurting his feelings less or hurting his feelings more. Less is the obvious choice but non-the-less it hurts his feelings. So I cried.
Until now I have held the belief that in an effort to help him keep his dignity and sense of usefulness, it was worth the frustration, aggravation, and sometimes anger that I suffered when he could not follow through.
I no longer believe that it is worth my frustration, aggravaiton, and sometimes anger and especially not my emotional and physical health, when he cannot follow through.
So I will need to analyze each request for help more carefully and judge by his chance of success to determine if I even want to ask for help in the first place.
I will need to ask less, expect less, and love more. Him and myself.
He came to me to sooth my upset and said, "You can't always be perfect. Neither can I." So I cried more.
Friday, February 25, 2011
It Becomes Easier as it Becomes Harder
I may have written about this before but I think it is worth my working through again.
It seems that the more Alzheimer's takes away from Gregory the easier it is for me to cope. I become more aware that he is unable to deal with certain situations: language is usually a problem now so I get used to it, he is confused more often than not so confusion is expected, disruptions in his routine always affect his ability to function so I mobilize and help him through the change, when he begins to get frustrated his level of frustration escalates and causes his abilities to decline so I do not give him tasks that would frustrate him, he is able to help less so I do more.
Gregory continues to be happy, content, and to enjoy his life. The difficulties come when I can't cope, get frustrated or angry, loose my temper, get short with him, forget that he is not the person he used to be when we met thirty five years ago. And since I am more aware of his inabilities, I expect less, ask less, do more and feel better. Sounds strange doesn't it?
It seems that the more Alzheimer's takes away from Gregory the easier it is for me to cope. I become more aware that he is unable to deal with certain situations: language is usually a problem now so I get used to it, he is confused more often than not so confusion is expected, disruptions in his routine always affect his ability to function so I mobilize and help him through the change, when he begins to get frustrated his level of frustration escalates and causes his abilities to decline so I do not give him tasks that would frustrate him, he is able to help less so I do more.
Gregory continues to be happy, content, and to enjoy his life. The difficulties come when I can't cope, get frustrated or angry, loose my temper, get short with him, forget that he is not the person he used to be when we met thirty five years ago. And since I am more aware of his inabilities, I expect less, ask less, do more and feel better. Sounds strange doesn't it?
Sunday, February 20, 2011
Words In Common
What do the following words have in common: closet, fork, pocket, water, guest room, scarf, underwear, sandwich, cell phone, pillow, dish washer?
For most people the words have nothing in common but in Gregory and my world, the commonality is that they are all associations with meaning that do not work regularly anymore. There are many other words in the list which come and go and sometimes disappear forever.
The problem is two fold: 1) A thought is expressed with words, 2) Words trigger thoughts. Recently, neither are functioning predictably. Up until now Gregory's struggled with being able to pull the words to match his thinking, now hearing words does not pull the correct or any image in his thinking.
First his use and recall of language began to suffer. He was not always able to put words to his thoughts. The thoughts and memories still existed, perhaps like a photograph in his mind, but he was not able to describe that picture with words (a skill which you I and I take for granted.) Sometimes between the two of us, we are able to attach words to the picture and sometimes the picture fades before that is accomplished.
Now other people's use of language doesn't always work for him. He is increasingly not making associations between the spoken word and its referent. That seems to tell me that the pictures my still exist but in his mind but now the pictures do not have the cognitive labels they used to.
In the past, when he would hear the word "glove" he would see the image "glove" in his mind even though he might not be able to say the word "glove" when he was thinking about one. Now those associations are taking a new turn and increasingly he cannot do either on his own. Sometimes when I say "glove" he thinks "scarf," sometimes he thinks "glove," and sometimes he thinks nothing. When he is looking for his gloves he does not know what to call them. When I ask where his gloves are, he does not know what that means.
Again, with the passage of time,we become more and more aware that the rules of this game not only are constantly shifting, but most often do not exist. Go figure that one out!
For most people the words have nothing in common but in Gregory and my world, the commonality is that they are all associations with meaning that do not work regularly anymore. There are many other words in the list which come and go and sometimes disappear forever.
The problem is two fold: 1) A thought is expressed with words, 2) Words trigger thoughts. Recently, neither are functioning predictably. Up until now Gregory's struggled with being able to pull the words to match his thinking, now hearing words does not pull the correct or any image in his thinking.
First his use and recall of language began to suffer. He was not always able to put words to his thoughts. The thoughts and memories still existed, perhaps like a photograph in his mind, but he was not able to describe that picture with words (a skill which you I and I take for granted.) Sometimes between the two of us, we are able to attach words to the picture and sometimes the picture fades before that is accomplished.
Now other people's use of language doesn't always work for him. He is increasingly not making associations between the spoken word and its referent. That seems to tell me that the pictures my still exist but in his mind but now the pictures do not have the cognitive labels they used to.
In the past, when he would hear the word "glove" he would see the image "glove" in his mind even though he might not be able to say the word "glove" when he was thinking about one. Now those associations are taking a new turn and increasingly he cannot do either on his own. Sometimes when I say "glove" he thinks "scarf," sometimes he thinks "glove," and sometimes he thinks nothing. When he is looking for his gloves he does not know what to call them. When I ask where his gloves are, he does not know what that means.
Again, with the passage of time,we become more and more aware that the rules of this game not only are constantly shifting, but most often do not exist. Go figure that one out!
Saturday, February 5, 2011
I Was Wondering About The Cat . . .
We are having people in for dinner. I have been working all day on the meal and finally sat down to relax before the guests arrived. Gregory is standing in the middle of the room, holding the cat Mariah in his arms. He says, "I was wondering about the cat?"
"Wondering what about the cat?"
No reply.
"Do you mean that it is time to feed her? We have stopped feeding her at night."
"Of course. I know!" And he seemed done with the conversation.
So where do I go now? Button push. Bomb explode. Brain shatter. I realized that "he got me again." Or at least the Alzheimer's got me again. No matter how I respond now a days, I am wrong. No matter what I do, I am wrong. No matter how hard I try, I cannot win. Alzheimer's is the winner and champion.
If I guess at his meaning. I am wrong. If I guess at his direction. I am wrong. If I suggest. I am wrong. Button push. Bomb explode. Brain Shatter.
One of these days I'll figure out how to respond without making a committment. Something like "I think it is good to wonder about the cat, dear." or "I am glad you are wondering about the cat." "Wonder is good."
"Wondering what about the cat?"
No reply.
"Do you mean that it is time to feed her? We have stopped feeding her at night."
"Of course. I know!" And he seemed done with the conversation.
So where do I go now? Button push. Bomb explode. Brain shatter. I realized that "he got me again." Or at least the Alzheimer's got me again. No matter how I respond now a days, I am wrong. No matter what I do, I am wrong. No matter how hard I try, I cannot win. Alzheimer's is the winner and champion.
If I guess at his meaning. I am wrong. If I guess at his direction. I am wrong. If I suggest. I am wrong. Button push. Bomb explode. Brain Shatter.
One of these days I'll figure out how to respond without making a committment. Something like "I think it is good to wonder about the cat, dear." or "I am glad you are wondering about the cat." "Wonder is good."
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