My husband has never seriously talked about his illness. He knows he cant remember anything, but tells me I cant either.He does have lots of lucid moments, but apathy has really set in. Ive had to assume about every job there is to do. Just recently started taking out the trash, he has always done that. Hes got to where he takes a bath every 2-3 days, after i keep reminding him. Does anyone else have this problem of denial?
"IT" was never discussed by name for 8 years ... He'd say, "What are you talking about??" when there would be a dispute about why he had to take Namenda or Aracept. I'd tell him it was for his Alzheimer's, and he'd shake his head ..as if he had never heard the word before. BUT, he'd take the pill. I just decided he was sticking with the "Don't Ask Don't Tell".... method. I wish he WOULD have talked about it,..and God knows I tried to get him to many times. It never failed to cause a rise in his temperment, so I simply gave up.
I always find this type of discussion interesting, because AD patients run the gamut from being totally involved in their diagnosis, treatment, and understanding of their disease, to those who are in total denial, and those who fall in between.
Richard Taylor, Ph.d, and author of "Alzheimer's From the Inside Out" lectures around the country, and writes a newsletter about his Alzheimer's Disease and how he wishes patients like him were treated.
On the other hand, we have scores of spouses on this website, whose husbands/wives are exactly like your husband. "There is nothing wrong with me" syndrome.
My husband is in the middle. He knows he has AD, but BECAUSE of his AD, he is unable to comprehend the scope of his disease. In his convoluted mind, he has a "memory" problem, but he has no idea how extensive it is because...............he can't remember what he forgets. It never ceases to surprise me how little he remembers.
I have also given up, and I do everything myself. Just tonight, he came into the office area where I was working, and told me he was cold. (We live in South Florida, so "cold" is relative. It was 69 degrees outside and 72 in the house). But anyway, he said he was cold. I told him to put on a sweater. He actually said that he never thought of that. ????????????????????????????? I not only have to DO everything; I have to TELL him what to do. He cannot figure out what to do by himself.
Be thankful he takes a bath every 2-3 days. Sid is down to one shower a week unless I tell him he can't sleep in bed with me because he stinks.
joang---My Dh accepts a shower, because "only clean people" can ride in our helper's car. He has to go for his coffee while the helper does the shopping. He knows he has problems but can't tell why or the name. Takes his meds very well--but has no clue what, how often, or what is for which part of the problem. Still feeds the cats(including the one that barks), but has big problems with the names--even his new baby--China. He does know he doesn't have "Oldtimer's Disease". He has Vascular Dementia.
joan, I have to tell my DH just about everything also. Every morning he gets up and says he's cold and every morning I tell him to put his robe on. I have tried to tell him the body temperature drops when you sleep so you feel cold when you get up but I gave up on that one. I have the heat on 73! At least he showers every day without my having to tell him. His memory is hopeless....he knows he can't remember anything but I sometimes think that he thinks that's his only problem and he hasn't a clue about the stress a caregiver goes through. We, or really I talked about it a couple of days ago and he thinks I don't have that problem and he just couldn't get what I was talking about.
Yes apathy is apart of this disease as are many other features, the one I dread most coming on is when he won't know who I am or paranoia sets in... The doctor told my DH that he demonstrated apathy when he told him of the disease..and once upon a time he , DH< would have walked out...but now he sits there and listens with mild interest as if we are talking about someone else. The change I am seeing now with my DH is that he does not recall the plot of his favorite movies... True Grit, Patton, Saving Private Ryan...he watches WW II the rise of Hitler every day..the same documentary and for him it is the first time to see it. Today our middle girl left for Iceland for at least 5 years..he was stunned though he has been told about this for months and months...it is though he had never heard this for the first time. My birthday was yesterday..he did have a card and remembered it..but today he wondered when my birthday was..is it tomorrow? So there is more confusion and uncertainity in his mind now and what hurts the most is to see the questions in his face, the puzzlement...in this once fierce aviator who flew A4Skyhawlks..jets... It has been a sad day...
Ky caregiver, My DH was in the room when his early dementia DX was given & I told him it was a memory problem, but he denied having any memory problems. I brought it up a few times but it made him angry so now it is just the elephant in the room with us (is that the right phrase?) Joan, I too have to do EVERYTHING, from turning on the shower for him to telling him where the bedroom, bathroom & every other room in the house is. God forbid he misplaces something, because of course I have stolen it from him. One of my biggest problems is that he gets very angry when I won't go to bed at the same time that he wants to. RIght now is one of those times. When I told him that I wans't ready to go to bed he got up from the couch, put his coat & gloves on & when I asked him if he was going anywhere he said to bed, walked down the hall & slammed the bedroon door. I expect him to come back in here any minute & sit down on the couch & say he isn't going to bed either. It's all so exhausting.
Thank you all for your comments, I sometimes wonder if I am going crazy. I am more forgetful, I have to remember everything and do everything. I just hate this limbo we are in, not knowing when , or what.
What is with the cold thing..my DH also is cold all the time..and I have to do everything for him as well..set out the meds..don't dare leave that to him...I am past asking what he would like for a meal..just fix something and put it in front of him...( might make doing Weight Watchers easier), I have to take him everywhere, pick up the meds, see about replacing windows with condensation, call the contractor who built the house to check on a potential roof leak...and on and on and on...think for two.. No conversations about a movie just seen, all of that is just gone...he is here in the house but that is about it..... this is a terrible disease that leaves us lonely even when we are not alone.. To top it off, some of the friends no longer bother to call because we can't do things on the spur of the moment...and for them planning ahead is too complicated so we no longer really hear from them...
My DH has his showers every day just because a care worker comes in and showers him, I'm sure he wouldn't except for the care worker. He knows he can''t remember anything and gets lost in our three bed house, thank goodness we downsized a couple of years ago. He freely admits to not knowing if he's arthur or martha and it makes me feel so sad for both of us, I relate to those who say they are lonely even though they're not alone, because that's how I feel too. I also have to do everything around here, I thought when I relocated to be with family, they would help me with DH's care, but find they are always too busy and don't think of us very often. Funny how invisible AD makes us !!!!
Been there done that an now that LO is in an ALF I wonder whats worse having them at home or in the ALF,It seems every time I visit she tells me" I'll get my things" always thinks I came to take her home an then the tears start flowing,tuesday she started when I walked in an was still at it when I left,not looking forward to todays visit,two daugthers who are RNS tell me don't worry about it she'll forget before your a mile down the road,but it still bothers me to see your LO bawling an wondering what she thinks of you for leaving her there
Ky...I don't think "denial" is the word I'd use. My husband is similar--pretty apathetic about almost everything, doesn't do anything, rarely refers to the fact that there's anything wrong with him at all, let alone Alzheimer's.
I don't think it's denial though, because denial implies that the victim has an active awareness of his illness, but had repressed it, or just refuses to confront it. Jeff occasionally says something like..."yeah, I can't drive because of that Alzheimer's diagnosis." But the key here is that all that is wrong with him, from his point of view, is that he has a diagnosis. He cannot do things because he has a diagnosis, not vice versa.
At this stage in his illness, regardless of how little he does, or how much trouble he has with simple tasks, he does not contemplate these things or remember them long enough to see them as worrisome deficits. If I ask him a question like "Do you feel about the same as you did 10 years ago, or do you feel that you've lost skills?" he'd say he feels "about the same." (Not that I probe into this much, but I have in rare moments.)
I believe that what happens with these folks is this: It is a high-level process of human/primate thought that allows us to notice our own behavior and analyze it, almost as if we were two different people--the one who's living the life, and the one who's observing that life and subjecting it to critical contemplation. (Truth is, the ability to do this is what drives most of us crazy, and fills us with all our existential angst!)
An Alzheimer's patient is losing that ability to observe self. Instead, he/she just "is." And if he "is" perfectly comfortable sitting in that kitchen chair, having the cup of coffee I just gave him, or riding around with me to the grocery store, etc, then he doesn't stop to consider how very different this life is from 10 years ago when he was running the hardware store, doing complicated woodwork, and having interesting conversations with me. He knows he's lived a life of being a very skillful craftsman, but it doesn't occur to him to wonder why he doesn't still do it. If I ask him, "Can you re-key a lock?" he'll say "of course," but it will never occur to him to try.
Don't worry - it's not you. As you can see by the responses, we are all in the same proverbial boat. If you have not already done so, check out the previous blog section on the left side of the home page. Much of what you are feeling has been addressed in the blogs, as I experienced it. Since you mentioned being in limbo, take a look at this one: http://www.thealzheimerspouse.com/LIfeinlimbo.htm
Sylvia, I am thinking of relocating to be near my daughter, but i wonder if that would help or hurt my situation. My husband is very comfortable here and there would be the process of him dealing with the new surroundings. i know that would be very stressful for him. Im not sure how much support I would receive as my daughter is very busy now, although she is the only child I have that is helpful. My son has his head in the sand, or just doesnt care, i dont know. If youy dont mind me asking how did u get the care worker? Home Health?
All these posts are soooo familiar. HB never bathes; I turn on shower, adjust water, lay out clean clothes, soap, etc. Waste of time. He gets angry, and I haven't discovered the trick to get him to follow directions. I've given him wipes to use. I've just gone through the battle of changing clothes from those he's worn for 3 days to clean ones because we're going out. Now I'm worn out and don't want to go anyplace. It's all my fault, anyway. Everything is my fault.
I wouldn't relocate to be near family unless you're VERY CERTAIN they would be of some help. We live just trough the woods from daughter and family, and get limited help. Was suggested in a support group that we post a list of things that need to be done and visitors could see it and choose one or two to do. (Change high lightbulb, load salt in water softener.) Might work if family members come over, look at it and are motivated. I'm ready to call Area on Aging for home health care agency recommendations. In an emergency or for planned appointments, a grandchild will usually help--older teens. Offers to pay for work are accepted.
You are new here, so are not familiar with the organization of the message boards. In order to keep things easy (or as easy as possible) to find, I try to keep the subject of each thread on its original topic. Since you have brought up other topics, such as moving, and getting care workers, I am going to make separate discussion topics for you, so others can respond to each subject under its own category.
It makes it easier for anyone to look up a specific topic and find the answers in one place.
Also, someone else on our boards moved to be near his children - uh oh, forgive me, I can't remember who it was. I'll check in the "search" and see if I can bring up that discussion for you.
Note to everyone: Please check out the new threads to answer KyCaregiver about moving and home health aides.
Ah yes, All this sounds so familiar. I'm lucky my DH still showers, however he is fighting me on that lately because it's cold in the morning & he deosn't want to be cold. I was just thinking today at how lonely i feel at times. My daughter lives right across the street & God bless her, DH stays with her on the one day per week that I work, & my other daughter takes him occasionally, but it would be nice if they would take him more often. I understand though, he gets an attitude at times & I know how hard it is to deal with him at times. Zibby, everything isn't YOUR fault....it's MY fault! I'm also a thief, are you?
My husband looks at me with such anger if I so much as mention "memory problems, " even if he asks "What do I have?" when we touch on the subject. He says he has no memory problems, he remembers everything...!!! Not so, of course. Sometimes I'm glad he doesn't realize what he has, sometimes I wish he had some insight. Yesterday, I cannot tell you how many times he asked me what day it was. Did the mailman come today? Why not? It's a Saturday. Then I say, But it's a Holiday. What holiday? Oh! Then, 5 minutes later. What day did you say it was? Over and over and over. And, I have a board with the date, day and Holiday written on it in large black letters. He doesn't seem to look at it. I have to say, though, that I really have learned not to get myself upset and stressed over it, unless I'm watching something really interesting on TV, which is what happened yesterday. I have to admit, I got a little testy having to mute my TV and answer those questions over and over.
Bev, are you absolutely sure he can still read. My husband used to "pretend" he was reading, after it was quite apparent he could not. Many forget how to read very early . That doesn't help with the repeated questions. I remember how aggravating that was, ..but when you mentioned the board with the dates, etc. written on it, it reminded me of when I realized that he no longer could relate to any information on the board. I also kept a big clock on a table near his chair - and felt so sad when I realized he could no longer tell the time on a regular clock face. It's so sad watching them gradually lose all of their mental skills.
Nancy - that thought never occurred to me! I notice that he doesn't read the morning paper like he used to, only the comics. But, he does do the crossword puzzle in that section. Do they lose the ability to read? Honestly, that just shocks me. I have noticed that when I say something he might find interesting, when he repeats what I have said, it is totally different that what I said. He hears different sounds of words. Last night, I had to keep repeating the word "THINGS." He could not get the first part of that word. So, I'm sure something is going on with his hearing. But, reading, that's something to think about.... Thanks so much, Nancy B, for pointing this out.
My Dh does not read the papers or anything else but I notice he reads aloud the running messages at the bottom of the screen onTV. He may not understand but I know he can still read.
My DH doesn't understand a lot of what I say. When I would tell him it was time to take his pills at night I would repeat, repeat and repeat until I was almost shouting. Now I just point to my watch and he knows what that means! Go figure.
Bev. have you checked his answers on the crossword puzzle. Is he guessing the clues? This sounds odd, i know, but my husband would make a list of words on a yellow pad. totally ramdom words...Like 'making a list and checking it twice'. Later, he'd pick up his pad, and check off all the words with a check mark. Eventually, the words would be partial..or non-words...eventually, just squiggles, odd marks and slash marks. Days, weeks, months, of sadness and heartbreak as I'd watch him do these things and realize they represented the thoughts in his mind.
Jean21, I have read that when communicating with words gets hard, they do much better understanding gestures and body language. Your example proves that--he still comprehends the idea, but not from the words.
My DH read words, but did not comprehend the meaning of the words. Also, he would have me repeat words for him to buy time while he tried to understand and remember. Another example of "faking it".
My hb has always had trouble with reading and comprehension. when they did the neuropsych test and it came back 4th grade reading they were alarmed - I told them that is about the level he always has been. Reading and remembering as always been a problem for him so I don't know when he gets there how to tell. I guess I will know.
No, I haven't checked the puzzles. I'm pretty sure he fakes a lot of things. We used to watch movies together. Now, he'd rather sit in his room and watch by himself. Occasionally he will watch with me but they have to be pretty simple stories. He loved "Up" and my daughter bought him a whole season of "Walker, Texas Ranger," a show he really liked, but so far he hasn't wanted to watch it, probably because he would have to watch in somewhere other than his own room. So many things have changed in our relationship because the things we used to do together don't seem to be the ones he likes anymore, something, in a way, I really don't understand. But, I have grown used to it and don't get upset about it. He is going out more this year, at least. In 2009, all he wanted to do was stay at home, now he likes going out. The only thing I'm a little sorry about is that I don't ever get a chance to go out alone, he wants to come with me all of the time. I do have time to be by myself at home though, and that's a good thing because I'm one of those people who likes to be alone (not all the time).
Bev - I know the feeling. I want to go for a walk - he wants to go. I want to go to the store - he wants to go. I want to go out and sit in the sun - he wants to. He will ask: if that is alright with you? What am I going to say: no? then I would feel guilty. Oh well, better get use to it.
Mine doesn't ask, he just says he'll go with me. Sometimes he says he wants to go, but then states he'll sit in the car and wait. I won't let him do that unless it's a matter of a few minutes. He doesn't get out of the car, but I don't see the sense in going with me if he just wants to sit in the car! It is harder for me to get any shopping done when he's with me; it takes double the time because he wants to talk to everybody he sees. Of course, this is better than the way he was almost 2 years ago when he was getting so mad at everyone for the least little thing. Hope that part of his disease is over.
Bev - everything I have read that you have written is pretty much where we are. I don’t even mention memory problems anymore cuz he would get so angry when I would say that. He gives me the evil look, as I call it, whenever he is mad at me (usually it’s because I steal his things!) My DH also goes EVERYWHERE with me except to work (on the one day a week that I work) & then he stays with our daughter. And like your DH mine wants to talk to ANYONE who makes eye contact with him when we are shopping. At the suggestion of my “family” here I made up some business size cards that say “Please Be Patient He Has Alzheimer’s” & I have flashed it quite a few times. I’ve actually seen peoples expression change & then nod their head in recognition
Elaine - That "evil" look is so familiar... I keep saying I'm going to make those cards but when he's doing so well I don't think about it much. Usually people are pretty patient with him. He loves kids but I get nervous when he talks to them; you know, the "don't talk to strangers" thing I'm sure their parents have warned them about.
ElaineH...if someone handed me a card that said “Please Be Patient He Has Alzheimer’s”, and then flashed IT quite a few times, you would definitely see my expression change and nod my head , and probably fall over..
You know, I actually thought about not using the word "FLASH", but I used it anyway, forgetting that Phranque:] :) would read this. (silly me!). Let me tell you, if I flashed "IT" people would run away screaming! Bev, my DH also loves to talk to kids & I also worry about it.
My husband follows me around , wants to go everywhere i go, sits in the car, or goes in and sits down at grocery store. He too talks quite bit to others, I guess he is lonely.
Ky caregiver, you are his link to life - only by being able to see you does he feel secure. We have all discovered this. It is harder on those who are used to going to the bathroom by themselves! <grin> This stage can last one year, maybe two. Once you understand that he's scared and needs to know where you are to keep himself balanced, it makes the frustration level go down some (not go away, but more manageable) - talking to him to reassure him doesn't help. He needs the visual at this point in the disease.
At least he is able to talk to others - some can't talk at all - and others talk to the strangers in the mirrors.
We each find our spouses react differently at different times, and some are easier to distract than others.
Some are in denial because to accept the AD diagnosis, is to accept that they are dying, and they can't do that. There is really no reason that they HAVE to accept the diagnosis. It is what is is. It really doesn't matter if they do or not in the long run.
We have learned that the reason button is broken and arguing makes them more stressed out - then they forget but you remember. Not a good thing.
Yes, I know I am his security. It is just so unlike he always was. He was never like that until this year. Of course I know everyting is getting worse for him. I just cant seem to find any of (me) on a day to day basis. Im just having a bad few days, I guesss feeling sorry for myself.
We all do!!!! Believe me, that is a good reason to rant at Joan's!! We all understand! Been there, done that or going to go there, need hugs! <grin>
The name for "me" time is called "Respite" - I have been the biggest cheerleader for respite care! We all need at least 4 hours twice a week to start, and then work your way up to either 4 hours every other day or two days a week - and go shopping, have lunch with old friends you haven't been able to see in months (or longer) or go to a movie, or go to the library, etc.
Now that my husband is at the end of the line, thanks to Hospice and my insurance, I get 5 days a month while he is cared for in a hospital. I have to say that those five days keep me going.
We must take time for ourselves starting early....don't feel guilty. There is no reason to do so. If you have a small child, you would get a sitter and go out. This is basically the same thing. Take good care of you so that you can take good care of him/her.
You have PERMIssION to feel sorry for yourself. I feel sorry FOR you. Just because we are all going through this horrible time (or did before our DH's died) doesn't make your problem one bit less important or stressful to YOU. I hope you know that you can feel sorry for yourself and speak those words to us as much as you want to, because dear Sister, each and every one of us "get it". Nancy B*