My husband was DX'd about 5 years ago at age 59. The first signs were a sudden decline in his conversational and reasoning ability, so much so that a couple of people asked me if he had had a stroke.
When we first began to see his neurologist, my husband never seemed to be curious or asked any questions about his DX. He never attempted to discuss it with me, and I didn't bring it up because it seemed that that was the way he wanted it. Now, he's unable to have a discussion about anything--he basically doesn't speak at all except for yes, no, and a couple of other phrases.
As far as a stage for him, he's physically healthy, still takes walks with me, but does so slowly. He eats and drinks normally, although he also is much slower than he used to be. He doesn't initiate much, but he will take the trash out if he sees the bags, brush his teeth if he sees the brush out with toothpaste on it, and get in the shower. However, if I don't supervise, he might very well pick up only one but not the second bag of trash and take it to the chute, spit his toothpaste into a drawer instead of the sink, and wash only one side in the shower. So, I'd say that he needs a significant degree help with all his ADL's.
My greatest fear is about him being in pain, physical or emotional, and not being able to communicate that to me. He's always been a very positive, easygoing man, and that hasn't changed that I can see. He, more often than not has a smile on his face, and his face always lights up when he catches a glimpse of me. I HOPE that that means he's okay, but I can't seem to find anything in my research that indicates how much someone in his condition understands about what's happening to him/her.
Does anyone have any insights about this in a person at the stage my husband appears to be in?
I don't know if you've had children, but the situation is similar to a child who hasn't acquired the language to express themselves. A child may cry, perhaps throw tantrums, become very fussy, irritable, lose their appetite, etc. when they are sick. You may not know what is wrong with them, but you know something isn't right, and the first thing Mom's usually do is take their temperature.
It is similar when an adult with dementia gets sick or is in pain. You willl more than likely know it. His easy going personality may change to anger and aggression; he may be extremely restless; he may lose his appetitie. There will be signs that will point to something being "off".
A friend of mine called me one afternoon - she was going nuts over her husband's behavior. He was awake all night having delusions of people being in the house; he was pacing; changing his clothes. This went on for 3 days, until she finally asked him if something hurt. He said his throat hurt. Actually, he had an absessed tooth, and when it was taken care of, his behavior was under better control. I understand that your husband cannot communicate with words, as my friend's husband did, but there's a high probability that his behavior will be his communication.
No one knows your husband...maybe his mother...as well as you do! Remember that as you continue along your journey. As far as communicating his feelings, as you know that smile when he sees you, the love of his life..you will also know his pain by non verbal cues lots of time..grimaces, restlessness or by other behavioral issues. You did not mention if you have children. As with your children, you almost can sense when there is emotional or physical pain, or when they are going to be sick. Trust your good judgement and continue to talk to him which even when he stops initiating conversation. Keep up the good work.
Thank you so much Admin and scs...I never thought of that. Yes, we do have a son, and, you're absolutely right, I never had to hear a word from him (and still don't at 22 years old) to know when something wasn't right.
I do talk to him, constantly, and I don't worry about whether or not he responds...guess I'm used to it even though he was the chatty, outgoing one and I the shy, more quiet one. I haul him with me whenever I do an errand, even if it's just to the grocery store, and we take rides just for the sake of taking a ride. I point out the sights along the way (we just moved to Florida) just as if he were still interested which I hope he is, at least on some level. Five years ago, he would have had his camera out and filled up an entire chip with shots of the view, flowers, and wildlife which are all new to us Californians. Now, I'm sure he couldn't operate a camera.
I realize that I won't be able to do some and then any of the above with him at some point, probably sooner rather than later, and I accept that just as I try to accept all the other blows that this disease has dealt him and us as a couple. I think I can bear it if I know that he's as happy as it's possible for him to be.
My DH was dxd 6 yrs ago. He never asked anything about it and has no interest in talking about it. He still for the most part doesnt think anything is wrong with him. if he wants to be in denial, i let him. I just do everything. Hi is happy as long a sI am around for him to depend on. He has never hung closer. He sleeps really close and is more appreciative of me , and verbal about it than he has been in our 42 yrs together. I think he is happy and that is my main goal, keeping him happy balanced with keeping me as happy as I can be under the circumstances.
Ky...thank you. I guess I needed some validation that I'm doing the right thing (whatever that is...) by taking my cue from him from the start. Even if I had regrets, I think it's too late now. And, really, I just don't know what good it would have done then or would do now to try to make him face his fate. It's hard enough for me, and it's not happening to me. Sometimes, I think it would have been easier if that were the case.
For those of you newer members, there were many old posts about anosagnosia (a patient's apparent unawareness of their disease). This occurs when the part of the brain that would allow awareness is damaged; it's different that the psychological condition "denial". It is literally a physical situation that makes self-awareness impossible and is common with AD. Personally, I think it's a blessing because who would want to realize they have dementia? Not every patient has this symptom, but many do.
Oh, how I wish DH had this! He is so aware and it frightens him so very much. He often talks about it, and it tears me apart. Sometimes ignorance is bliss.
My wife also didn't want to know anything about it. Eventually it was similar to my cats. It was up to me if I saw anything that might mean a problem and check. If she seemed to be favoring something I would touch it and check if she reacted. I even opened her mouth a few times and looked over her teeth.
It's odd what you remember later. Our favorite thing when she could no longer do things or articulate much but was still pretty mobile was doing her hair.
My dh's favorite words are...."I'm not really that bad". I don't think he has a clue what his condition is or how he is getting worse. He is living in his own little world and isn't in touch with much of anything except what I tell him. Some days I say I am not going to say one word to him and see if he goes all day without saying anything...but I never do that.
In the very early days dh said "I've lost so much of myself that I'm not worth anything" now though he seems content in his own world. I think it is a blessing. Folks who have no clue ask "does he know?" Well, he has dementia he knows what a person with dementia knows in whatever stage they're in.
ac- your post really hit home for me. My husband was diagnosed @ 6-1/2 years ago at age 53, and FYI, no longer speaks at all. When he was first diagnosed, it was actually a relief to him---he must have realized something was horribly wrong and at least it now had a name---but if he understood the long-term prognosis, he never articulated that. We had no "heart to heart" talks about our future because he just seemed happier to travel (which he could do for about 3 years) and visit with family and friends, and after he could no longer do that, have lunch with his friends at home. When he got upset or stressed about something that was happening, for example, when he could no longer drive, he blamed me, so it was not a good thing to discuss anyway. So sometimes I look back on those early years, and wonder if I could have done something different, but I guess I have made peace with the fact he was quickly becoming unaware of what was really happening, and that was a blessing. Plus, since we had a freshman in high school when he was diagnosed, I did what I could to keep her life "normal" which is what I know he would have wanted. Regarding how to know when your husband feels pain, my husband has been hospitalized twice since he became non-communicative, once for a GI bleed that occurred very quickly, and second time for hernia surgery, which we were able to predict. What we learned between the first and second situations is to watch his sleeping patterns---if he seems agitated, we look for reasons. Most days he just gives us big smiles and as you mentioned, he seems to know his caregivers with his eyes. When he seems a little frightened on his neighborhood walks (usually because of a loud noise), we just take his hand and that calms him.
Marylyn, how do you know if your loved one is aware when they can no longer communicate which is the case with my husband. He APPEARS to be happy which seems would not be the case if he really did "get it."
Vickie, I'm so, so sorry for you and your husband...I'm terrified for my husband, knowing what he's facing, and I can't even imagine how I'd deal with my own fears in addition to his!
Wolf and Judith, I think, as flo said, it's a blessing if they seem to be content in their own world and aren't aware of how much they've lost.
Flo, I remember, early on when no one had any idea what was going on, when my husband messed up a simple DYI project. This was so unlike him...he had single-handedly added an entire room onto our house from the foundation up as a "hobby," the year before, and, in fact, he had his own business doing that sort of work. I found that he had spent several hundreds of dollars in one day's time, going back and forth to the hardware store to buy lengths of crown molding because he kept getting the angles wrong. I remember being stunned and questioned him about it, and his response was, "I guess I'm just not very bright." There were other things later, of course, but, by then, he had been diagnosed and promptly placed on early SSD. Even now, if I get upset about something he does (which I try, try, try not to do), his face will fall and he says, "I'm sorry," one of the few things he's still able to say.
texas mom, seems we've got a lot in common...diagnosis at a young age, and we also had a high-school-aged child when my husband was diagnosed. It was very hard on him to watch his dad drift away (and still is) since he was always extremely active and completely involved in our son's life.
I noticed when we first saw our neurologist for the initial testing, he was very careful to NOT use any specific terms but would always ask my husband if he had any questions. He didn't. But, when we left, he gave me a packet of materials including a book on Alzheimer's. I decided then that I would let my husband lead the way and ask my own questions in private. So, we never had a discussion about it, and now we can't, but it probably doesn't matter.
As for the driving, our doctor was the "bad guy" in that situation, but, by then, I think my husband was still aware enough to realize that he was begining to make dangerous mistakes and was maybe relieved to have me take over. When we walked out of the office that day, he went right to the passenger side and never again went to the driver's side...he was the type that did all the driving, preferring to drive himself and have me be the passenger.
ac--if your husband appears to be happy (content is the word I use about my husband), then I would assume he is. If my husband isn't happy, his behaviors will tip people off. The only thing that bothers him is when the aides at the ALF try to shower, wash or toilet him when he doesn't feel like it. He will either walk away, push or hit them; by doing that, he's indicating that he's unhappy with what's going on. They know to just stop trying and to have a go at it later. Believe me, there is no doubt when most AD patients aren't happy--their behaviors will clearly indicate it.
This thread has brought to mind what I consider a worse dx than Alzheimer's--ALS. I don't think we've ever discussed it much here, but with that disease, the body is failing but the patient is clearly aware of everything that is going on, that it is terminal, etc. No matter how bad things have been for us, I have always been thankful that it is not ALS.
Marilyn and Elaine...I agree. In fact, seeing ALS firsthand (I used to manage an office for a neurologist) has haunted my dreams since, and I think I see what's happening to my husband through that ALS lens which is probably not very rational. But, I hope and pray that my husband hasn't realized and will never realize how his body and brain are failing him at a relatively young age. The ALS patient I remember most clearly was a young-ish professional man with a young-ish professional wife who chose to end his life.
Marilyn---interesting that you brought up ALS---when we were visiting the various Congressional staffers in April, the only staffer that really seemed to "get it" told us at the very beginning of the conversation that his father had died last year of ALS and that he was overwhelmed by what his mother had to deal with----I recall the time from his father's diagnosis to death was about 2 years, and he mentioned that he couldn't imagine us having to deal with such a longer timeframe. We all agreed later once we left the office that while we hate to compare diseases, ALS seems to be near the top of terrible.
Right after I began to really think there was something really wrong with my dh...from numerous strange actions....this was the point that I knew it was Alz. When I would ask him to go to the little neighborhood store for a qt. of milk and a loaf of bread and one day...he said..."Could you write that down for me". I thought he was joking and I laughed and then I saw the look on his face and I knew it wasn't a joke to him.
But, isn't it strange that a simple 2 item request could be a problem so early on in the condition. You would think that early on a 2 item request wouldn't be a problem. This condition never seems to be what you expect.
It is fortunate(?) for me that I would have needed to write down quart of milk and loaf of bread for my entire life. So, no sign of decline so far. Although I CAN tell you three words: They are "apple, penny, and table."
Judith, that happened early on in my husband's case as well. A couple of times, even with a list, he'd forget something on it. Or, I'd write "artichokes," and he'd come back with a bell pepper.
Emily, I also have to write down items when I shop and always have. Otherwise, the minute I get into a store and see all the "stuff," I can't regain my focus on what I went there to buy to start with.
Like you my DH doesn't seem to be aware of his illness. DH has been in a nursing home for the past 17 months. He no longer communicates but seems very content and happy. I should mention he has not known me or our children since September '10. There were many incidents that something was wrong about 2 years before Dx. But it was the night my DH was driving us home when I mentioned he'd forgotten to turn on the headlights and he turned to me and told me he did not know how, I will never forget the lost look on his face. The next day I made an appointment with a neurologist and two weeks later he was Dx. It has been 5 years ago this June.
Ruth, it is good to hear from you again. I'm glad that you husband is getting such good care in the nursing home. That must be a great relief for you and your family.
Lloyd's first sign was difficulty carrying on a conversation in 2007. He can't talk at all 99% of the time now. Nor can he do anything else except walk and that is with difficulty. He has very few accidents only because I take him to the bathroom at the same times every day. He comprehends nothing except hugs, kisses, affection, and "I love you". For the most part he is oblivious, but on very rare occasions he will burst into tears. Those are the times that I know he knows what is going on. Then all I can do is reassure him that I will be right there with him to the very end. I just don't understand why something this terrible happens to good people!
I have learned so much from reading all of this. Such as the 2item List. I remember a couple of years before dx, I ask dh to run to the store for dill pickles. He came home said they didn't have any, just sweet pickles, I just couldn't I'magine them not having any. I went myself and sure enough, on the same shelf as the sweet was the dill. At the time I thought it strange, now I understand. He knows he has az, some days he will say, I'm going fast, and yes he sometimes cries. Bonnie
Bonnie, My DH knows he has AD. Yesterday as I was preparing dinner, he said to me " I am sorry I am such a burden that you have to do everything" (he used to cook all our meals). My response was - " its alright, you aren't doing it on purpose - you can't help it", which made him feel better. RE: discussion above on ALS. I have a good friend with ALS - she was diagnosed about 10 months ago, and it is as hard to watch her deteriorate as it is watching my DH. I know that she must find it extremely difficult to not be able to be active like she was before, and to be so aware of the disease. But, she has a great attitude. We send each other an email every morning with an inspirational message or joke, because we care about the pain each of us is going through, although the pain is different. As she likes to say, when life hands you lemons, you make lemonade!
We just got back from spending a week at our cottage. DH constantly forgot where everything was even though we have been going up there for 30 years. Even at one point I asked him to get a bucket of water and he had to ask where do I get the water. At one point when we were sitting quietly I said "sometimes I really have trouble coping with this disease of yours" and he said "imagine how I feel". I was able to say: "I have no idea how you feel about this, you never talk to me about it". And he said, "I'm scared but I don't want to complain". (This is so much his old personality - he was the last one to ever complain). It opened up a dialogue and I was able to get a glimpse inside his thoughts. It was sad but I was grateful.
My husband does not talk either - I find out from what he tells others. That in itself irritates me because he has always been that way. He seeks out women to talk to, tells his inner thoughts and feelings - not me. It has always bothered me since if I even talked to a man he would get upset. As for this disease, I wish he would tell me. It might make it easier to deal with him.
ring, what a gift he gave you. My husband has never admitted he has anything wrong with him and would never acknowledge he has dementia (FTD). He was raised in a family that declared "we have no diseases or illness". Funny how that is - his maternal grandparents died of cancer, his mother and her siblings died of heart disease and his father and brother died from dementia. When you ask him he'll tell you "nothings wrong with me". I really wish he would tell me how he feels about losing his abilities and having this disease but it will never happen. I think it would help me be a better caregiver.
AC you asked for insights as to what stage. The URL below lists all the symptoms typical that define a stage. No one is ever an exact match, no two Alzheimer's patients are alike. It's the norm to overlap an earlier and a later stage. Admission of the disease means a concept of the present and the anticipation of the future two capabilities or concepts that disappear as the disease progresses. DW was all too aware when she was DX'd, her mother had it and we cared for her... the ensuing depression was horrible. But now, other than Sun downing she always in a good mood and always appears happy. (comments that hurt: How can she be sick she looks so good and is always so happy..... Excuse me.. Did you hear her say a word? Whom do you think showered her, Brushed her hair, put on her clothing ??) With my DW (DX'd in 06) the" present" has a life span of about 5 minutes on a good day usually nothing is recalled a moment after it's said. Her ability to ponder or of the future is a concept far beyond her capabilities. There is no point eve arguing because what is being disagreed upon is lost in the first moment. I make it a rule never to bring up future plans or events, the conversation will not be retained. and at best all discussion of any future plans will do little more than increase my DW's anxiety level. http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
Charlotte, you husband sounds a lot like mine. Talk quite intimately to women, never to me about anything. Could always express his anger though. Today while visiting him in the adult foster care home he was in a crying mood but couln't tell me what was bothering him. Attention span is about 30 seconds most of the time and wants to know when we are leaving to go home so over and over trying to explain I can't lift and take care of him and he can't remember but he just doesn't understand or I should say can't. It helps so much to know others are going through the same experiences so that we don't feel like the only one. Dorie
Bonnie: My dh also thinks it's too much for me, that I have to drive him everywhere, no matter how much I reassure him that I don't mind. This morning we were putting trash out, had a lot, I'm cleaning out to move. He got sooo upset, said he just couldn't move, just too much for him. He would just go to that place to live (nh), and I could move to OK. We are moving so I will have help from family as he gets to that point. As the day went on he would talk like we were moving, saying things like we will have to spend a lot of money buying those things ( pointing to dishwasher, stove microwave , and frig). Marty Take what they say as a compliment, she must look very nice, shows you are trying hard and doing a dam good job taking care of her. Forget the fact that they are sitting on their brains. Bonnie