Things are changing again. For the last week or two I have been weighing in on the heavier side of sad when compared to joy.
When Gregory settles into a new "phase" of dementia; I compensate, get creative, learn to provide, cope, and as well get lulled into the false sense of security that this is how it will remain forever.
You have read about his recent "burbling" as a way of "playing with sounds" on his lips and in his mouth and to delight his ears. You have also read about his "routines" which while are not communication do provide positive interaction.
When Gregory is upset and tries to tell you something or when he is calm and tries to explain something he has plenty of words and sounds to use but on the outside, to you or me, they make no sense.
Most of the time he would be calm, content and happy. Now and then he would get upset but that was the exception.
When he would be upset I went into my, "It's all OK. Everything is taken care of. You have nothing to worry about. I have arranged everything." He would eventually ask, "Really?" And I assure him, "Yes." He would calm down. "Oh, good," he would reply.
When he was not upset and trying to explain something I would simply say, "I understand." or "I know." And that would usually satisfy him.
While I enjoyed those interactions and he was happy and alert and calm during that period, my antenna went up anyway watching for where this phase would go.
Recently he seems sad, upset, and not calm. His burbling and routine playing has moved into perseveration with the moods, ups and downs, happys and sads, cycling on and on.
In his interactions, he will become assertive, intense, and demanding. He seems less calm, content, and happy at this time.
It seems as though he gets into a loop and he cannot get out of it by himself. When he does this, the loop goes from one mood to the next quickly with more of them negative than positive.
When Manny or I am with him, we can usually defuse his behavior. When Gregory is with the group watching TV or in an activity before or after Manny or my being there, it is more difficult to control.
Several times he was removed from the group by an aide who was eventually able to calm him down. Recently they had to give Gregory an Ativan (drug for anxiety,) which didn't work so they gave him an Haldol (an antipsychotic as well as other conditions.)
Gregory is a strong man, and a big man, and when he gets upset the staff's concern is for Gregory's own safety and the safety of those around him. Thus the medications. The Lieberman nurses only use medications as a last resort and are very careful with that. I trust them.
So meanwhile, my soul is heavy, hoping that Gregory settles down into an acceptable behavior pattern again, which has happened in the past. At the same time, my intellect is preparing and wondering what steps might need to be taken next.
The psychiatrist has been involved and I have had discussions with the head nurse so I am not on my own in making these decisions. But I am on my own in dealing with my emotions and as I began this post ... the sad side has the advantage right now.
I will keep you informed.
Showing posts with label Frustration (His). Show all posts
Showing posts with label Frustration (His). Show all posts
Friday, November 7, 2014
Monday, October 21, 2013
A Double Header Day
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.
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.
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.
Saturday, May 26, 2012
BECAUSE
Today, surreptitiously observing, I read a cookbook while Gregory was making his breakfast. He was trying to use the "map" I created to help him with the task. It was not a success. On and off he has been able and not able to make his own breakfast. Most often it was 60-75% correct, me helping with the rest. Several times I have decided that it was time for me to take over making his breakfast BECAUSE it was easier to just do it for him compared to trying to explain what he needed to do. Most often the explanations didn't work so I did what needed to be done. Several times without saying anything I let him try again and several times did so BECAUSE he asked to try again.
Here is the detail of why I have once again decided that I should make his breakfast. It is somewhat of a complicated job but BECAUSE he likes his breakfast, "throwing some toast" at him would never do. BECAUSE he cannot accomplish the "routine" it is now one more thing I have added to my load.
Maybe after watching him this time I am ready to accept this next responsibility. I told him that maybe I should take over making his breakfast BECAUSE in watching I noticed that he was having a lot of difficulty and that it was painful for me to watch his suffering through the process. He agreed and said, "Yes maybe it is time." This is the first time that he has agreed with such commitment.
THE DETAIL: Tea
He got out the loose tea but didn't know what to do with it BECAUSE there was no tea ball. He figured out what was wrong, got the tea ball and filled it with the loose tea. It still didn't seem quite right to him BECAUSE he had forgotten to put the usual placemat on his tray. He was still confused about the tea BECAUSE what he was missing was a mug in which to put the tea ball. I gently suggested that he needed a mug for the tea.
THE DETAIL: Cereal
He got a mug and cereal bowl out of the cabinet and put them on the tray. The tea ball never got into the mug BECAUSE he was distracted when he next got a box of cereal from the cabinet and after studying it for a while, instead of pouring a portion into the bowl, he scooped with his hands.
THE DETAIL: Fruit
He got the cantaloup out of the refrigerator, cut three pieces, cleaned the seeds, and sliced the melon into his cereal. No help need here.
THE DETAIL: Bran Buds
Next he got out the plastic box filled with Bran Buds. He opened the box, handled the scoop, looked at the box, handled the scoop. Tried to scoop the box lid and finally put the box down BECAUSE it wasn't working. Next he noticed the label (which was turned away from him) on the box and commented to himself, "Oh that makes it easier." Maybe he didn't realize that he did in effect have the bran buds in hand? So he picked up the box, put the scoop back into the box, and closed the lid BECAUSE he thought he had added some to his cereal (which he hadn't.) I intervened.
THE DETAIL: Turkey Sausage
Next task was to microwave the turkey sausage. He remembered to get a plate this time, a paper towel, and a package of sausage out of the freezer. He unwrapped the sausage and placed them on the plate.
It wasn't quite right BECAUSE he had put the paper towel down on the tray and by now had forgotten that it was supposed to be on the plate with the sausage. I mentioned the paper towel, he realized that it was missing, found it, folded it in half and placed the plate into the fold BECAUSE he really didn't understand the necessary order.
I helped him place the sausage between the folds of the paper towel and then put the paper towel on the plate. He asked, "How long?" BECAUSE after countless years of making his own breakfast sausage he didn't remember. "Two minutes." He was able to follow through.
When the sausage had cooked, he took the plate out of the microwave (which is almost but not quite too hot to handle.) He danced around with the hot plate and then, BECAUSE he finally noticed that the placemat was not on the tray, didn't know what to do with the plate. He asked my help but I just watched. After a while of "dancing" he finally placed the plate on the counter.
THE DETAIL: Putting It All Together
He just stood there not knowing what to do next. I got up and verbalized what I was doing, BECAUSE somehow it seems to defuse the situation, as I fetched the placemat and put it on the try, filled the electric tea kettle (which he had totally overlooked) and turned it on, put his cereal bowl and mug in place, put the tea ball into the mug, put the sausage plate on the tray, got him a spoon and napkin and finally filled his mug with boiling water and replaced the kettle. End of story, beginning of breakfast.
The detail is important to share with you BECAUSE it shows how complicated the task is for Gregory while maybe not so much to you or I, how easily it is for him to get distracted, and how difficult it is for him to follow through with multiple-step processes.
Here is the detail of why I have once again decided that I should make his breakfast. It is somewhat of a complicated job but BECAUSE he likes his breakfast, "throwing some toast" at him would never do. BECAUSE he cannot accomplish the "routine" it is now one more thing I have added to my load.
Maybe after watching him this time I am ready to accept this next responsibility. I told him that maybe I should take over making his breakfast BECAUSE in watching I noticed that he was having a lot of difficulty and that it was painful for me to watch his suffering through the process. He agreed and said, "Yes maybe it is time." This is the first time that he has agreed with such commitment.
THE DETAIL: Tea
He got out the loose tea but didn't know what to do with it BECAUSE there was no tea ball. He figured out what was wrong, got the tea ball and filled it with the loose tea. It still didn't seem quite right to him BECAUSE he had forgotten to put the usual placemat on his tray. He was still confused about the tea BECAUSE what he was missing was a mug in which to put the tea ball. I gently suggested that he needed a mug for the tea.
THE DETAIL: Cereal
He got a mug and cereal bowl out of the cabinet and put them on the tray. The tea ball never got into the mug BECAUSE he was distracted when he next got a box of cereal from the cabinet and after studying it for a while, instead of pouring a portion into the bowl, he scooped with his hands.
THE DETAIL: Fruit
He got the cantaloup out of the refrigerator, cut three pieces, cleaned the seeds, and sliced the melon into his cereal. No help need here.
THE DETAIL: Bran Buds
Next he got out the plastic box filled with Bran Buds. He opened the box, handled the scoop, looked at the box, handled the scoop. Tried to scoop the box lid and finally put the box down BECAUSE it wasn't working. Next he noticed the label (which was turned away from him) on the box and commented to himself, "Oh that makes it easier." Maybe he didn't realize that he did in effect have the bran buds in hand? So he picked up the box, put the scoop back into the box, and closed the lid BECAUSE he thought he had added some to his cereal (which he hadn't.) I intervened.
THE DETAIL: Turkey Sausage
Next task was to microwave the turkey sausage. He remembered to get a plate this time, a paper towel, and a package of sausage out of the freezer. He unwrapped the sausage and placed them on the plate.
It wasn't quite right BECAUSE he had put the paper towel down on the tray and by now had forgotten that it was supposed to be on the plate with the sausage. I mentioned the paper towel, he realized that it was missing, found it, folded it in half and placed the plate into the fold BECAUSE he really didn't understand the necessary order.
I helped him place the sausage between the folds of the paper towel and then put the paper towel on the plate. He asked, "How long?" BECAUSE after countless years of making his own breakfast sausage he didn't remember. "Two minutes." He was able to follow through.
When the sausage had cooked, he took the plate out of the microwave (which is almost but not quite too hot to handle.) He danced around with the hot plate and then, BECAUSE he finally noticed that the placemat was not on the tray, didn't know what to do with the plate. He asked my help but I just watched. After a while of "dancing" he finally placed the plate on the counter.
THE DETAIL: Putting It All Together
He just stood there not knowing what to do next. I got up and verbalized what I was doing, BECAUSE somehow it seems to defuse the situation, as I fetched the placemat and put it on the try, filled the electric tea kettle (which he had totally overlooked) and turned it on, put his cereal bowl and mug in place, put the tea ball into the mug, put the sausage plate on the tray, got him a spoon and napkin and finally filled his mug with boiling water and replaced the kettle. End of story, beginning of breakfast.
The detail is important to share with you BECAUSE it shows how complicated the task is for Gregory while maybe not so much to you or I, how easily it is for him to get distracted, and how difficult it is for him to follow through with multiple-step processes.
Tuesday, May 15, 2012
The Case of the Confused Underwear
Last night Gregory laid out his morning sport pants and shirt but forgot about the underwear. I reminded him but my language (undershirt/underpants) did not help so I told him we would take care of it in the morning. I knew I would be in for a "fun filled" morning but I was too tired to manage the underwear right then.
Sure enough when I woke, he was in his morning sport clothes but knew something was wrong. Without having to be asked I said, "You need underpants and an undershirt." Immediately he realized what was needed so he returned to the closet where he got out a pair of underpants and took off his sport shirt. Did you catch the subtlety of what happened?
Next, he attempted to put on his underpants over the sport pants, stopped foot in mid air and realized something was wrong and stopped. He looked at the under pants to make sure the were facing the correct directions (i.e. fly in the front?) and tried again, sport pants still on. He did this approximately six times. FInally he came into the bedroom, underpants in hand.
He knew I was available but didn't ask for help so I kept quiet. He tried the "underpants over sport pants" routine again several times and stopped. He put the underpants on the floor and said aloud to himself, "Just put them on. Just put them on."
Then it came clear to him (I could see the Ah-Ha!) and he took off his sport pants, put on his underpants (backwards but corrected with my comment,) then put on his sport pants ... all in the correct order. He was amazed that it had been so confusing and so obvious.
With a reminder that he still needed to put on an undershirt, he was able to follow through without any complications. In the past I would have jumped in and given instructions. This time, although painful probably for both of us, for the most part I kept quiet. I had to weigh his frustrations against his finally asking for help, against when I needed to intervene. Not an easy job.
Sure enough when I woke, he was in his morning sport clothes but knew something was wrong. Without having to be asked I said, "You need underpants and an undershirt." Immediately he realized what was needed so he returned to the closet where he got out a pair of underpants and took off his sport shirt. Did you catch the subtlety of what happened?
Next, he attempted to put on his underpants over the sport pants, stopped foot in mid air and realized something was wrong and stopped. He looked at the under pants to make sure the were facing the correct directions (i.e. fly in the front?) and tried again, sport pants still on. He did this approximately six times. FInally he came into the bedroom, underpants in hand.
He knew I was available but didn't ask for help so I kept quiet. He tried the "underpants over sport pants" routine again several times and stopped. He put the underpants on the floor and said aloud to himself, "Just put them on. Just put them on."
Then it came clear to him (I could see the Ah-Ha!) and he took off his sport pants, put on his underpants (backwards but corrected with my comment,) then put on his sport pants ... all in the correct order. He was amazed that it had been so confusing and so obvious.
With a reminder that he still needed to put on an undershirt, he was able to follow through without any complications. In the past I would have jumped in and given instructions. This time, although painful probably for both of us, for the most part I kept quiet. I had to weigh his frustrations against his finally asking for help, against when I needed to intervene. Not an easy job.
Sunday, April 1, 2012
Tab "A" Slot "B"
Often in a conversation with Gregory he will make "Comment A" and I will respond with "Comment B" by which time he has lost its association with "Comment A" and therefore "Comment B" is confusing to him. Frustrating to me is not only having to go though this line of thought but having no possible way to get it back on track.
A variation is my making "Comment A" and Gregory showing having understood my comment. I move on to related "Comment B" which makes no sense to him. Again frustrating. Again, no way to straighten it out.
A variation is my making "Comment A" and Gregory showing having understood my comment. I move on to related "Comment B" which makes no sense to him. Again frustrating. Again, no way to straighten it out.
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.
Saturday, December 24, 2011
Silence
Today's Daily Word addresses something I continue to work on in my relationship with Gregory. In an effort to "be his words, be his story, support his actions" I find that I continue to jump in too soon. If given a enough time, if given silence, he often is able to formulate his words or work out an action on his own.
In an effort to protect him, often I jump in too soon and often my help only serves to distract and confuse him. Often it frustrates and angers me. It is painful for me to watch him struggle, especially when I can tell from his face and from his posture that he is indeed struggling. Even more difficult is that when he cannot come up with what he was trying to say or do, he is not able to move to "Can you help me?" Just silence. Painful silence. So often I have to jump in.
Another situation that I continue to work at monitoring is "When do I need to correct him?" The guideline is "Are babies dying?" Translated this means does the fact that he is not doing something correctly matter? Is he in danger? If not, I try to say nothing. Silence. But often I am already giving feedback when I realize to late, "Not necessary." Silence would have been better.
So recently, after I "mess up" I repeat silently to myself, "Say nothing. Do nothing. Say nothing. Do nothing." Besides helping me calm down I am trying to bring my actions to a higher conscious level so I do not react, but rather act ahead of time. Act before I speak.
At the same time I am carrying on an argument with myself because at times I must "Say something. Do something." It is not fair to him or to myself to always say or do nothing. So I have been looking for a better mantra.
With this Daily Word, I have that mantra: SILENCE. Working at being silent (and repeating the word "Silence" over and over again) will give me time to think, while waiting to see if I have to jump in. This is the answer to how I might handle myself when these occasions arise.
At least for now. At least until the game rules change again. I'll let you know how it works.
(As I usually do when sharing a Daily Word post, I have revised the thoughts to reflect my spirituality.)
In an effort to protect him, often I jump in too soon and often my help only serves to distract and confuse him. Often it frustrates and angers me. It is painful for me to watch him struggle, especially when I can tell from his face and from his posture that he is indeed struggling. Even more difficult is that when he cannot come up with what he was trying to say or do, he is not able to move to "Can you help me?" Just silence. Painful silence. So often I have to jump in.
Another situation that I continue to work at monitoring is "When do I need to correct him?" The guideline is "Are babies dying?" Translated this means does the fact that he is not doing something correctly matter? Is he in danger? If not, I try to say nothing. Silence. But often I am already giving feedback when I realize to late, "Not necessary." Silence would have been better.
So recently, after I "mess up" I repeat silently to myself, "Say nothing. Do nothing. Say nothing. Do nothing." Besides helping me calm down I am trying to bring my actions to a higher conscious level so I do not react, but rather act ahead of time. Act before I speak.
At the same time I am carrying on an argument with myself because at times I must "Say something. Do something." It is not fair to him or to myself to always say or do nothing. So I have been looking for a better mantra.
With this Daily Word, I have that mantra: SILENCE. Working at being silent (and repeating the word "Silence" over and over again) will give me time to think, while waiting to see if I have to jump in. This is the answer to how I might handle myself when these occasions arise.
At least for now. At least until the game rules change again. I'll let you know how it works.
(As I usually do when sharing a Daily Word post, I have revised the thoughts to reflect my spirituality.)
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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.
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 ... |
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."
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!
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