My husband has started to notice that he has lost the memory of big pieces of his life. He gets quite upset. How should I respond?
He was diagnosed 2 1/2 years ago. Before the diagnosis, he made it clear that he didn't want to know if he had ALZ, so we call it ADHD or simply memory problems. We went on a vacation recently, and especially at night he got disoriented. He couldn't picture our house, for example, and thought that he had been married three times,instead of two. That's all kind of normal.
The upsetting part is that he is noticing that he doesn't remember large parts of his past. He has started asking what is wrong with him, and if he should go to see a doctor about it. I answer his questions and assure him I will never leave him, but that sometimes isn't enough to calm him.
Naturally the worst part is that these discussions take place at 1 am or 5 am or 45 minutes before we have to get up!
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This works for us, but hugs to you and your mother in your situation.
You might also contact the Cambridge or other local Area Agencies on Aging and/or the Alzheimers Association to ask if they sponsor the Creating Confident Caregivers course, which addresses dementia, alzheimers, and other memory disorders. It's well worth taking, and it's free.
http://www.alz.org/mglc/in_my_community_58958.asp, but this is for the Michigan branch. I couldn't find anything for Cambridge, but there might be a branch in other areas of MA.
The other reason is that a few months ago, I DID tell him! He was totally bummed out, and stayed that way for a few days. Then he forgot why he was feeling bad, and went back to normal. I won't repeat that experiment again. It would be cruel and useless.
Maybe a year ago, he overheard something that led him to think that he had a terminal disease. At that time, I said that he sort of did, and told him it was ALZ. But I assured him he had another twenty years of life. He took that pretty well, but again forgot it very quickly.
I have told our daughter that I would want to know about anything that is wrong with me. Part of it is vanity. "I can do a better job of having ALZ than he can." How stupid is that? Another part is that I might find it interesting to observe as long as I can. Also, I am not entirely opposed to the idea of being dead some day, and free from the trials and toils of this world. But I can't go until I get my affairs in order. It wouldn't be fair to leave her this enormous mess to handle. LOL.
I know what you mean about looking for a "fix" -- it goes with the profession, and the profession probably goes with the personality. It is too bad that your hubby doesn't want to hear the cause named. That was very useful for my husband. And he decided to contribute to a solution by donating his brain to science. That became very important to him. (His brain tissue is now in a brain bank in Florida.) Even with some traits in common, each individual is unique.
Did the shrink have anything to say that might help other caregivers?
This morning at breakfast, he made a list of what is bothering him, to talk over with his shrink. I attended today's session. We talked about how alarming it is for him, but by his second rereading of the list, he was busy explaining why he doesn't remember things, and how his memory really isn't that bad. This is a behavior that pushes my buttons, but I try to bite my tongue. If denial makes him happier, he's easier to deal with.
Another aspect is that we were both programmers, and used to analysing and fixing problems. His memory loss is a problem for which there is no solution. Even naming the real problem is best avoided. I have to shift to a different mindset when these conversations arise. I also keep hoping that there actually is a magical correct way to fix the problem. Sigh.
This also seems like an omen of worse things to come.
Well, I hope to have him in adult day care soon. They tell me there are some nice men for him to socialize with. Thank God that he is willing to give this "club" a chance.
But unfortunately I DO remember how much chocolate I eat, along with the self chastisement for indulging. If only I could switch the memory wires to forget about the chocolate and remember the broccoli....
Jinx, how does hubby react to seeing photos of his past, does that help with recalling his memory? If not, then distract him with something else not related to remembering something.
If I can't remember something I just tell myself that my brain's file cabinets are overfilled so it takes longer to find that piece of information :) My Dad will complain that he can't remember some things, and I will tell him I have that issue, too. It makes him feel better.
Oh, GardenArtist, I can't remember breakfast or lunch, either... but can remember how many Hersey dark chocolate almond nuggets I had yesterday :)
GA, your solution would probably be the best for the majority of people with dementia. It is like someone floating down a wide river and finding a rock of familiarity to anchor themselves. I wonder if having anchors would help them to reorient their thinking some. I bet it would, since they might not feel quite so adrift.
Jessie makes a good point; I will always remember where I was when I learned that Kennedy was assassinated; I can still picture the location very clearly. Same when 911, when my mother and sister died. But I still don't remember some things that probably weren't important anyway.
Jeanne gives some good examples of gently acknowledging but negating a concern if the issue isn't that critical. And frankly, I don't remember what I had for breakfast or lunch either. Unless it was chocolate.
It occurred to me that you could tactfully segue into another subject that your husband does remember well, perhaps something more recent and which would pique his interest.
If vacations are problematic, take shorter trips instead to areas around your house that are very familiar. Go to the same ones repeatedly so they become, hopefully, more familiar.
If he says "I don't remember that part of my life", shift to an aspect he does remember well.
You may have to give this some thought so you can be prepared to shift direction the next time he becomes concerned that he doesn't remember, and segue into something like "yes, but do you remember the time that we .... "
(And I am very familiar with 2 am discussions of critical/important/disturbing topics!)
Realizing that you have lost/are losing large chunks of your identity must be devastating. Even though I've seen loved ones in that situation, I can't really put myself in that place.
The "every one forgets" assurance is fine as far as it goes. But everyone forgets what they did on their vacation five years ago. That is a very different kind of loss (I would imagine) than forgetting significant events and people in your life. The other day I mentioned, in talking to women at mother's table, that "since I've been a widow" I've done thus and such. My mother was aghast. "Widow! What are you talking about! How can you be a widow!" Oops. I explained that my husband had been sick a long time and died more than two years ago. "Where was I? How come I didn't know about it!??" I understood that her grief was at being left out or somehow missing the very significant milestone of the death of a son-in-law she truly loved. I hugged her. I said, "Mom, you did know about it when it happened. You were very sad with the rest of us. You were very nice to me. It is just that your memory is not working so good today. You were part of that, and I was glad to have you there for me. It is not your fault you don't remember it now." There was just no way I could diminish that event by "oh, everyone forgets things." That seems to me to dismiss her very real suffering at thinking she'd been left out or being very disoriented about her own life.
Once my husband asked if I was his first wife or his second. LOL. I couldn't very well say, "Oh, everyone forgets things now and then." I sat and held his hand and said, "It must be very scary to have things like that mixed up for you. I am your second wife. We have been married 30 years. Let me explain a little of your history."
When Mom can't remember what she had for lunch or even if she had lunch it is easy to say, "Oh well, there isn't going to be a test. And the helpers here keep good track of who has eaten so even if you forget they won't let you miss a meal." But when she is upset about not remembering if her sister is still alive, I think it takes a different approach. I wish I could spell out what that is! I wish I knew.
As you discover responses/reactions that seem calming to your dear husband, Jinx, let us know. We learn from each other.
He may feel comforted to know that he's not alone in being unable to remember everything. I doubt if anyone can - I think it's part of the memory reprioritization that occurs as we grow older.
Maybe it will calm him if you tell him that everyone forgets most everything in the past. We probably have it stored in there somewhere, but can't access it. Who knows?
Sometimes we do what we can to alleviate worries and disorientation.