DH was looking shakey today and at the same time volunteering to do outdoor chores which is unusual for him. After awhile though he said he was going to rest awhile and would do some sanding later. I told him not to worry, to just relax, take it easy, etc. He then said he wasn't feeling that great, that he was feeling a lack of balance and unsure on his feet. He said when he gets up suddenly he feels he's going to fall down. And also that he has to be very careful and deliberate because he's feeling uncertain about his balance.
He seldom wants to talk about the dementia, but will on occasion particularly if it is a physical symptom. Not sure what stage he's in. He still drives very well and never gets lost. Maybe this should be a red flag on that? Cooks pretty well. Is having trouble finding clothes, and recently his memory seems to have taken a sharper decline than I've seen in the past three years.
Do any of you have experience with your LO telling you about their symptoms, thus having that kind of awareness. Seems I mostly hear of those in denial completely or simply unaware of the symptoms. DH seems to be acutely aware of many of his which must make it much more difficult.
My DH is exactly the same way, very aware of his of his symptoms. He also has a balance problems, walking very slowly and deliberately. When he first stands up, he has to steady himself before taking the first step. I'm afraid of his falling. He also complains of his legs hurting. He can pretty well take care of his personal needs, can fix his breakfast, microwave, etc.
My DW has recently been crying about her situation as she is able to do less and less and she is becomming more and more dependant on me. She was trying to write a check and she forgot how to do it for a mail order of clothes. She is very aware of her lack of ability and I wish she would move on to the next phase so that she does not keep crying. I wish she was less aware of her condition.
I also have noticed that she is unable to recognize smells. It that common? In the car we pasted a skunk and she did not know what that smell was.
In general, Jeff does not seem to register that he has difficulty with things. For the first few years, he complained of his vision, and difficulty focusing, often. Usually now, as much as he often struggles with basics, he doesn't seem to notice that his struggles are not normal. He rarely, for example, can figure out how to fill his cup with ice, then drink, at a do-it-yourself soda fountain. (we eat lunch out frequently, so this is a regular thing.) If I help though, he gives me the resigned look that means "I know, you just like to do everything, even though I'm obviously perfectly capable." After he's made 5 attempts to buckle his seat belt, and I do it, he still thinks his difficulty was completely normal.
"Of course I can [hang up a shirt/insert a key/tie a shoe.] I've been doing it my whole life." This is what he believes, and the struggles do not seem to change this basic belief.
My DH has trouble with lots of things he used to do, and is blissfully unaware of all of it. He can still take care of himself but cannot work with most apparatus. He can turn the TV on and off and take pictures with his or my camera, and he can ride a bike. He can vacuum but will only do it if I ask him to AND he can see that it's necessary, but he can't get the cord to go back into the vacuum cleaner. He used to use the dust buster a lot but I think now he only does it if he makes a mess and I ask him to go get it. He can't use a can opener, a computer, turn the security alarm off or on, work the DVD or CD player or recorder. He likes to use the blower outside (if I start it) but just blows the stuff around, can't clean the driveway or anything else with it. He has no idea that he has changed in any way. Also, he does nor recognize smells. He can tell you what time it is but has no idea what it means (whether it's time for a meal or time to go to bed, etc/)
In the beginning, Sid was very aware of his symptoms, especially the short term memory and even the irrational behavior. As things have progressed, he seems to be aware only of the short term memory and slow processing. He does not really understand or maybe is in denial of the poor reasoning, judgement, misinterpretation of language, fogginess, blankness.
As everyone is aware, he has a group of Alzheimer buddies who socialize and do activities together. None of them see anything wrong with each other. It's kind of funny, I guess.
Jim has been extremely aware of his symptoms. Lately, however, he has become less aware of them. He has often told me that he feels an "impending feeling of doom". Then sure enough he will have a new symptom or a downward slide. Then he seems to plateau again. Just the other day at the Neuro, he was unaware and surprised by some of the changes I mentioned and changes that the dr noticed. He is still very concerned about what stage he is and what his prognosis is. We are both looking forward to our trip to Boston to the Mass General Hospital's FTD Clinic on 12/14.
My DH is very aware of his symptoms. In a way, I think it is better that way because we can talk about it and I can convince him that we can still manage with the "new" way things are.
Oh Joan would I like to be a fly on the wall when Sid and his buddies get together. I've noticed that residents in my husband's facility will babble at each other endlessly and seem content. And that is a good thing.
DH is blissfully unaware of any problems except for difficulty walking. He makes me so mad. He HATES for me to assist him in any way and actively resists yet when a stranger or for that matter a friend offers help, he gladly takes it and seems so appreciative! It's like he's got two personalities, a grumpy grouch with me and a sweet doddering old man to the world. Ah well, it is what it is.
Weejun--I think it goes back to the basic that you can be yourself with your family, but you need to be on better behavior with friends and acquaintances. My DH, even now will seek a stranger's opinion and accept it 100% when he has just refused the same opinion from me, as wrong.
I think maybe it's a kind of rebellion because they have to accept so much help and input from us.
My husband seems to have no understanding of his illness. I have been very lucky so far that he usually goes along with whatever I say. Has some stubborness now and then of things he REALLY doesn't want to do but usually pretty easy going. He has FTD and I got lucky? that he hasn't had the aggressiveness or anger--just the apathy, agitation and all over antsiness.
My DH is very aware of his problem and I sometimes wish he wasn't. He constantly thanks me for being patient with him when "he can't make his mind work." He worries about getting worse and becoming a burden. He asked me yesterday what I'm going to do when he goes completely crazy. I tell him I don't think that's going to happen but we have to take what life throws at us and deal with it.
My husband is aware of the path he has to travel because he watched his grandparents, uncles and dad travel it. He is aware he forgets but i don't think how much he forgets. I try to point out when he remembers something that happened previous - day or few days. Today we stopped for lunch. He took a drink and I asked him what he was drinking - he said he couldn't tell if it was root beer or pepsi. hmm? I replied that means I can start giving you diet and you would know! He said probably not. (sad) I liked to know so I can mark mine so we don't get them mixed up. I drink diet and can't stand all the sweetness in his drinks.
He does worry about me 'killing myself' caring for him like his mother did caring for his dad. I assure him I won't.
My DH doesn't behave as if he KNOWS or understands that he is becoming more and more limited. We have been through some really difficult times because he has refused to acknowledge that anything is 'wrong'. He only complains about his feet being cold..but pays no attention to any other things.. scratches, scrapes..bumps or bruises .. He had a black eye once, but couldn't say what caused it. Possibly he discusses plans for the future when our daughters visit. However, his attitude has always been that he would just die. With no idea, whatsoever, that there could be a long time between now and then OR that our ways of living would need to change along the way.
My DH is totally unaware of any symptoms or that he even has AD. He never admitted it early on and will never admit it now. DH thinks I'm more the problem than anything else right now.
I didn't realize how many of you there are who are going through the same things I am. I thought my husband was in the minority as far as not realizing there is something wrong. His personality is one of a person who was always in control of things and I felt that he just wouldn't admit there was something wrong, because it's part of his personality. He is the strong one (he thinks). I'm finding out now that I'm much stronger than I thought I was. He doesn't like it, though, that I'm "taking over." I'm the one paying the bills and doing virtually everything. But, getting back to the subject at hand. When his doctors were asking him questions he was visibly angry at everything single thing they said. If they asked him a question he thought was a simple one, he asked if "they thought he was a jerk." He was so mean that day. There wasn't anything they said that he didn't have a smart answer. I was glad that they were seeing the person I see most of the time, but at the same time I couldn't believe he could talk to the doctors the way he did. One of the doctors asked him if she could ask me a question. He said, "Go ahead. I'm only the patient here." This appt. with the doctors made them change their diagnosis from Lewy body disease to FTD. My daughters are suspicious of this. They find it hard to believe. But they don't see the way he really acts. That's the part of this that I can't understand. Why can he seem to behave all right with them but not with me? It hurts so when he talks the way he does to me. Then, later on the same day he'll thank me for what I do. I'm sorry. I'm rambling. But, as for being aware of any symptoms.... No. He feels everything is just fine. We need to see a lawyer, but I'm afraid to even bring the subject up.
MY DH knows that he has AD but does not understand the consequences. Recently he wistfully said that if/when he is cured, maybe he will drive the car again? He thinks that his illness is just a matter of forgetting things. Several mentioned here the loss of smell in their LO. Mine has not been able to detect odors for several years - way before the official diagnosis. I read that the loss off smell is one of the very first symptoms.
My DH hasn't been able to smell anything for several years. I didn't know back then it was one of the first symptoms. He knows he has AD and was forever reading the information brochures we had on it. He hasn't read them for quite some time now. One time he said pieces of his brain was falling out! I explained to him what AD does to the memory and if he read the brochures and can remember he should know about the other affects but hasn't mentioned them. I know he would be absolutely mortified if he became incontinent he is so particular about showering.
babozec my son had a very difficult time accepting his dad's FTD. He felt dad could "turn it off and on at will". My husband either was unaware of his condition or would not admit that he had a problem. Something else I will never know. After a while it just doesn't matter.
My husband knows he's been diagnosed with MCI and that it could become a form of dementia. Right now, he thinks the only thing wrong with him is memory loss. When he's asked how he's doing, he tells people to ask me, because he forgets or might not recognize the changes, but if I say there are changes other than memory he gets angry and denies it.
He also has not been able to smell much of anything for quite a while. The other day he said that something he was eating didn't have much taste, and he wondered if he was also losing his sense of taste. I told him that I thought that not being able to smell food would have an impact on how it tasted.
Ditto on the loss of sense of smell and as a result, also the loss of sense of taste. For a while, he put red pepper flakes on everything he ate, trying to get something he could actually taste.
Babozek, I am bringing a discussion on Anosognosia - the lack of insight into illness or disability to the top for you. See also http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf
My dh will tell people about him having eoad and he is very aware of this. With that said, when he does something unusual he thinks it is fine, just me being grumpy. For example, he let two of our neices and our 1 year old granddaughter play in the flower bed that has elephant ears and poison ivy in it. When I saw this I told him not to let them do this. His response was, not everyone is allergic to poison ivy and elephant ears and if they are they can get some calmine lotion. He still thinks that he is right about this. Daily there are more and more things that my dh is trying to do and can't do it right. But if I say anything about it, he seems to have a valid reason it is fine. I am totally at my wits end and don't know how much longer I can do this. I wish that he would get where he did not know what was going on. I think it would be easier. I am about at my breaking point and don't even care if things go bad or not. Not hanging in there very well. But my dh is convinced that even with this eoad he is doing good with his reasoning. And like Dazed, he also says he used to do everything so he knows he still can, it is just me being picky........ whatever.........