Today's Blog ( 5/19/08) discusses another topic covered in the DC Forum - the perspective of the person living with AD. I invite you to read the Blog and post your opinions and comments here.
My DH becomes very frustrated when he cannot remember a word or even a similiar word to substitute for the word he wants to use. He also becomes extremely frustrated when he "gets it wrong again" and is constantly berating himself for his errors. He constantly talks to himself but when I ask him to talk with me, he cannot remember what he was saying so cannot talk with me. There is no such thing as carrying on a conversation and he is frustrated by that. In the short of this -- he is as frustrated by this disease as I am, and knows there is nothing we can do about it. Take care!
My husband has never spoken about his feelings and won't. After leaving the doctor's office with the diagnosis of Alzheimer's, while we were in the car, I asked him if he had any questions, and he said no; I asked him how he felt, and he didn't answer. He has never expressed himself at all. He wrote an e-mail to our children and best friends telling them that he had Alzheimer's, but that was all. He knows what the disease is, and that he is dying, and that there is nothing we can do. He knows I love him and will take care of him. He can only put two or three words together, and sometimes they don't make sense. He gets frustrated when I can't translate what he is trying to tell me. He has his standard responses to questions asked of him: "fine," "very good," "okay," and "yes" or "no." No one would ever accuse him of being verbose! It is amazing how with those few responses he manages to appear normal!!!
My husband is pretty good about expressing how he feels. His verbal skills are deteriorating, but he can still speak in sentences. He says that he's scared and he knows he can't do now what he could do a few months ago. He saw his brother die of Alzheimer's at the age of 71 and since my husband is amost 64, he says he is afraid of turning 70 (and I'm afraid he won't last that long).
When he can't do things, he says he is stupid. He hates it when I have to help him do everything.
But there are also times when he kids around...says he's the one who's supposed to forget stuff. He tells people that he's going to beat this disease..although lately I see him becoming more discouraged. He also talks about being dead soon...I think he sees himself becoming worse and does know where it is headed.
Although my husband and I have talked about AD extensively, I am not sure that he realizes that the end result of it is death. He is at times frusterated greatly by not being able to make the movements he used to be able to do. He, here of late is expressing the desire to die. He is unhappy to be causing me more work. Right now I think he is going through an other downward turn. Getting up and down from any sitting position is hard for him and that is upsetting. I agree with FLGirl that....I think he sees himself becoming worse and does know where it is headed down deep in his heart.
My husband knows he has Alzheimer's, knows how it ends, but has no idea how much he has changed or any insight into how these changes impair his judgment. He thinks he is still in the early stage of mild cognitive impairment-even though he didn't recognize his reflection in a mirror for a short time, and still thinks not recognizing his reflection is funny, and doesn't understand why no one else thinks it is funny.
When my husband was diagnosed, he understood where the disease could take him. He told me one time that he looked in the mirror and did not see himself as any different. I pushed him to discuss what he wanted in various scenarios and his answers have helped me a lot as we go through the process. Now, when his mind and many of his actions are those of a 1-2 year child, I continue to be grateful that we had those discussions.
Sally, my husband has terrible trouble getting up and down, sitting in chairs, going up and down stairs, etc. People have assumed he's had a stroke since he is so obviously motor impaired. Trying to get him dressed is becoming so difficult. He tries to help but winds up holding my arms so I can't get his clothes on or he hits me by accident as he's flailing around. He knows he has difficulty, but I don't think he knows how bad he is. He also has very poor short term memory and seems to be trying to hold it together as much as he can. He apologizes all the time for making me work so hard and often thanks me for helping him. He does get angry at times, but never holds onto the anger...that's the part of his personality that I hope he can hold onto. It is so sad to see him trying to understand what is going on or try to take part in conversation. I just hope he can continue to find things to enjoy...everything becomes such an effort that it's hard for him to really enjoy anything anymore.
When we got the blow from his neurologist, husband simply ignored that dx and told me it was job related stress as first thought asthe neuropsycological tests dr had said. he did start closing down his law office and winding things down but never accepted the AD diagnosis from day one. i guess the reality of that word was too hard to fathom so we just stayed with the 'stress' one. today almost 9yrs later he had no idea he has dementia..divvi
My husband and I have discussed it, and I will mention it when he gets angry or tells me I didn't tell him something. And I try to keep the frustration out of my voice when he asks me the same question over and over. He 'knows" he has it, and that his mother had it, but he doesnt really know. He's annoyed at me right now because he doesn't know what's going to happen next, or what we are doing today. I have a whiteboard on which i write what day it is and what's going to happen today, but he forgets to look. I write him notes of what's going on today, but he doesn't read them. then he is frustrated because he doesn't remember what's happening. He thinks he just has a mild memory loss, and he says he never had a good memory, and never cared to remember those things (like his address, or what county we live in) It's a lot of frustration on both of our parts.
How interesting that your husband's "excuse" is tht he never cared to remember "those things." My husband has used that excuse on doctors and therapists, and it went no where with them. What do you think that they have heard it before from a lot of patients?
We moved 4 years ago. My husband was diagnosed almost exactly one year ago. He never learned his address or phone number. Four years ago I'm pretty sure he could have, but "didn't care to."
Someday, someone is going to make a collection of this weird stuff and allow the general public to know about it. What we are talking about here is an early symptom of dementia. Possibly very early.
My husband has been having "calling cards" made up for a long time. Not just the normal business cards that your employer gives you, but personal cards with his name, address, phone number and most recently email address. And when people would ask for his address or phone number, he would give the card out to them so they could copy it.
I want to say that the first set of those cards were printed up close to 20 years ago, but I'm not sure. But certainly more than 10 years ago. I have to admit that I'm not sure if we did them when we first moved to California in 1991 or if we did them later when the company he was employed by was sold and he had a new set of cards anyway. I've always taken it for granted that he knew his address in California, but did he?
Starling-I've always used personal calling cards. When I moved to our latest house it was the easiest way to introduce ourselves to neighbors and merchants. People really seen to appreciate not having to stop and write down our info. I once had a merchant complain that I had given him the wrong address. He had stapled our card to our invoice and he looked pretty embarrassed when I pointed it out. When our kids were small I left calling cards by the phone so that in case of emergency the sitter wouldn't panic and forget our address.
I too have personal cards. They were great when we were travelling. Many seniors I know have them. My DH has no idea of our address or phone #. I made them up. However your DH could have done that to assist him with giving out an address he could not remember.
The funny thing is that the most recent time, I had them made for me too, but I almost never used them. I really think that in the beginning it was partly that he thought he might need to look for a job, so he gave out his personal card in many cases instead of the businss card. But I'm also sure that for the last 5 years we were in California (a total of 9 years from now) he was already using the card INSTEAD of saying his address or phone number.
I've been trying to figure out when all of this began because he was only diagnosed a year ago and he is going down FAST. I think I've found the beginning, and it wasn't when he got his pacemaker 4-1/2 years ago.
I mean think about it. WE are at Stage 1 (the normal baseline). When did he get to Stage 2?
In the beginning my husband would ask over and over same stuff. drove me insane and then i didnt have the patience you acquire after yrs of caregiving:) i would leave stickit notes all over the house with the answers i knew he asked about. i would see him reading a 'note' about his name/tel/city/ and then we would be ok with that and find another one stuck to another wall. i left many and never changed them, he just read the same ones every day over and over. it saved me having to answer the same stuff. i also gave him a journal with every page filled with his 'info' and kids stickers on them and he would spend hoursgoing thru the pages reading/re reading over and over and smiling. his info, pics of his pets, just silly stuff and many with 'i love you' - i truly think he enjoyed this idea. divvi
I leave my husband notes, even if I'm just walking the dog, so he doesn't get frightened when he can't find me. I also have a whiteboard on which I put the day, date, and what's happening that day for him, but he forgets to look at it. it's right above the TV in the Kitchen, hard to miss. Some years ago, I encouraged him to write his memoirs (he's a WW2 Vet), he got as far as 1971, which is when we met. Now he reads it and can't believe he could have remembered all that stuff, and sometimes he accuses himself of lying about stuff he just doesn't remember, but for the most part he loves reading it. It reminds him of his past, altho, I'd prefer he'd live in the present. It makes him happy to read it, and keeps him occupied.