I'm just wondering if this is a normal part of the progression of dementia. My DH was diagnosed in 07, at 57, sort of recapping since I know many of you don't really know me since I don't comment very often. Anyway, DH was put on meds and has had very SLOW progression. He has always been very open and talked about the disease openly, and even though he is difficult, we have been able to work things out. Lately however he seems to have taken a turn for the worse. We upped the meds, several months ago since he said he felt like he was loosing it, and very depressed. But somehow he is not recouping as he usually does. He has been aggresive and that continues to be a problem, but has never denied the diagnosis...until the other day. Now, he says that there is nothing wrong with him, he is the head of the house and I am to do what he says...period. He more or less denies any problems at all????? This of course is probably part of the disease, but I don't remember if this is typical or not. Just wondering what others have experienced.
mimiS - it does not surprise me that he has gone into a stage where he denies the diagnosis. With this disease anything is possible. As for the changes including aggression - maybe it is the increased meds. Which meds did you increase? I now others have shared a higher dose of Aricept has caused aggression. I would definitely let the doctor know. He may need an anti-depressant instead of the increase of which ever med it was.
My DH also denies there is anything wrong..we do talk about ALZ in relation to others we know who has it and he knows what it is and is so sorry for them...but he does not seem to recognize it in himself nor any of the other medical conditions he has. I think that part is part of the disease. My DH is overall mellow..but there are days when his personality is just flat...can't or won't take part in a chat or anything...that is about as moody as he gets and when he does get that way I think maybe he doesn't feel " chipper" but he either can't or won't tell me though if his foot hurts he will say so.
Mine too. He knows he has a DIAGNOSIS of AD, but does not believe there's anything wrong with him, nor can he connect his failure to put his pants on right, or open the car door, to there being something wrong with him. This is why it's been hard to work out how to introduce caregivers or daycare or anything.
BINGO! Emily, you hit the nail on the head! My DH never accepted the DX so of course “there is nothing wrong with him!” At this stage I don’t even think he would know what AZ is. It makes sense to me now why he is having trouble adjusting to the day care situation. He sees all the people in wheel chairs etc & he doesn’t know why he is there. (Of course it doesn’t help that he keeps telling me that no one talks to him, which of course isn’t true. The aids are going out of there way trying to involve him so this works for us (me). I also would have a problem bringing someone into the house. He doesn’t even recognize a lot of our friends so I know that he would not like a stranger staying with him while I go somewhere. Denial on his part? You betcha!
"Some researchers have estimated that as many as 60 % of people with Mild Cognitive Impairment and 81% of people with Alzheimer’s disease have some form of anosognosia."
Anosognosia has been the elephant in our life for years. Even now, with DH having been placed for 18 months, confined to a wheelchair, incontinent, only ability remaining is to feed himself, executive function abilities of a 3-year-old, stage 6-7, he truly does not think he has any deficiencies.
By the way, anosognosia is not the same as denial.
Thank you all for your input, it helps tremendously...Charlotte, he has been on Exelon, the patch for several years, which was increased a few months ago. He is also on a depressant, also increased. This change has so confused me, and of course makes things near impossible here. His claim now is that I have more problems then him...(need I say health problems becauase of him???), and has become very withdrawn from me. He is wonderful with other people, can really put up a good front. He says, "if you would just treat me nice it would solve 90% of our problems"! Of course no matter what I say, that I'm trying very hard to do everything to keep him happy...it's never good enough, which I understand is just part of the mental condition. I did however tell him that I would not be bullied anymore, and that if he was that unhappy we would make other living arrangements...which of course he said fine, I will live by myself! This disease breaks my heart...after 30 years...his brain goes to what a horrible and hatelful person I have always been...just not fair. But...as I read, we are all pretty much in the same boat! Thanks again!
yes mine too mimis. He KNOWS that I take care of him really really well...and is always looking for me when I am not in sight.
but...the other day. A lady at our market came over and said, well, your husband told me you deny him a beer when he wants one, that you never let him have one.
and I said, "Funny, you believe him? Remember, he has dementia? That is absolutely so untrue, though I do try to make sure he does not drink too much, I always offer him one when I have one."
The truth is, he never wants one anymore, which is a good thing.
And telling people that I am meantto him, that I yell at him. (almost never never never) I am trying so hard to be kind and KNOW he cannot help it.
Well that is our boat. We will have to ALSO suffer being thought of as mean and yelling.
Coco, My DH used to enjoy having a couple of beers once a week. When he was well he would have 3. After he went on all the meds I convinced to stick with 2. Right now there is an unopened 12 pack in the garage that has been there for 2 or 3 weeks. He has mentioned it a couple of times but not about having any and I am not saying anything!
It is beyond me why in the world people who have been told of the diagnosis dementia/alz continue to come to me with what my DH has said that is no where near the truth.I try very hard to be kind and loving and yet every chance he gets I am the wicked witch of the west. The dumbest part of all this is that his family and other people actually believe the bs. Sometimes I wonder who really does have the ALZ.
cookiemarie-because our LOs often do seem so normal for short periods of time outsiders don't realize how far gone they are. I think sometimes they think they are making you feel better by saying how well LO looks.
What I do when friends or family seem to think he isn't as bad as I say or just point blank think I am just making his condition up.....I refer them to the Alz. site or the Fisher site. Then I ask them if they would like for me to grant permission for the doctor to talk to them about his condition. This usually gets a blank stare.
I have even e-mailed some the information about the stages and pointed out the stage he is in and what other things in other stages he is doing. And usually ended my e-mail by saying..."Believe me or not, but I am living this on a daily basis and, by the way, did you know this is a terminal illiness with no known cure?"
As he has gotten worse, it is now very obvious he has a problem...so less and less questions.
I spent at least 5 years trying to convince relatives that Sid really did have Alzheimer's and was not as good as he appeared. Now those same relatives are telling me that I'm giving him too much credit, expecting too much of him, and that he is way worse than I think.
We just had a family visit Joan, a niece and her kids and Mom, (his sister), from Maui did a day trip here and stopped for lunch..
I was coming back from showing the niece our yard, and I heard his sister saying, "how does Patty treat you, is she taking good care of you? Let me know if she is not"
I get all hot and fired up just thinking about it. Thank God he was in a clearer state and said yes very much so. Also he made it clear he did not want to go anywhere without me.
I TOLD HER!! do not probe him too much, it upsets him as he cannot remember and then he gives wrong answers anyway. AND< when I took her on the side and tried to explain to her the sometimes incontinence, the forgetting right after he ate or bathed, she SHUT ME OUT and did not want to hear.
She should not have told me that the other sisters said, "Don't just go for lunch, spend a night and make sure brother is ok"
ugh. It is so much more than I can say here. They don't want to be burdened with him, BUT, they don't want to accept the close to perfect mate and caregiver that I am.
Coco - how sad for you when you know how hard this care giving is. My dh appears "normal" to most people I'm sure. What they don't see is a man who cannot find the closet door in the bedroom he has slept in for over 25 years or the bathroom door three feet from the bed. We recently returned from a vacation and he is keeping his razor in the travel bag he used - all other things on the vanity top. No one has questioned my care of him so far. Most of our family live two states away and will not be visiting as they are older than we.
I think it's really hard for the AD sufferers to see themselves having the disease. They either block/deny it or transfer it.
When we're thinking with broken machinery and we want to find an answer or solution - it's very compelling inside to transfer that to someone doing something to us. The world is becoming confusing and we're very concerned about it inside and one answer is that something or someone is doing this to us.
And there YOU are.
The reactions from those around us isn't just that they're all a bunch of twits (they are), but, it's an insight into how 'normal' people would react and therefore how much you are no longer 'normal'. You are a caregiver.
I had mentioned to our pcp when I was in to see him alone that dh didn't think he had anything wrong and that I had told the doctor's his diagnosis. So when we visited the pcp together he took the time to talk with us that he doesn't usually spend. During the conversation dh said to him he didn't want it to be true. Our doctor told him no one was putting a label on him that we was just trying to help him. It seemed to satisfy dh - at least for now. The word Alzheimer's is really terrifying to me but it is what it is.
Denial is: Telling Brother not to take his meds---chemicals are bad for you. Refusing information from his wife/caregiver Not talking to hisDr. when given the opportunity to get "the real story" Giving himm a street-ready power cxhair, when his caregiver hassaid"NoNot safe. Knowing Dr. hassaid"Noo moresmokingand guardiaan hassaidtheycan't affordthemanymore; startproviding them, to keep him happy. Smuggle cigarette to him nibn tyhehospitsal. And now he's in a NH, with a second Terminal Condition as well, encourage his idea that he's recovering and will eventually be able to go to an Adut FosterCare Home near you. "He's just a little confused."
DH is well into Stage 6 with VaD and now has CHF which is being watched closely,
My gosh, I hear all of this loud & clear! D. has never, never wanted to realize what is going on. He was always the master of denial. Of course, I realize at this stage, he most likely would not be able to understand it. I've also come to realize that he has probably had a fear of aging, of dying (even though we are people of deep faith), would laughingly say he would live forever, other guys his age are "old men" (look in the mirror, dear). Denial of the inevitable. Coco, when I read about your sister-in-law, I was incensed! How dare she!!! I think I would have lost it, & sent her packing!
Yes my DH knew he had Alzheimer's and would tell people he had it, but would not really recognize his symptoms, etc. I was trying to think of the name for it... anosagnosia! Thanks Marilyn. Such a weird disease. But if I had it, I wouldn't really want to be aware of the symptoms, outcome, etc. either.