Am curious if any of your spouses ever mention or talk about their condition? Mine NEVER does. One of the most difficult things for me is the lack of any feedback.....especially he was the one I relied on not only for medical advice, but to share all troubles (I am probably rehashing what you all must have written in the past.)It never ceases to surprise me how readily he accepts his helplessness and my help in ALL things. It is hard to believe that he REALLY thinks it's all my fault when I don't know aways know what he is saying or wants me to do. I wonder what he really knows! He has been legally blind for eleven years, and was always amazed how he accepted THIS disability and the fact he had to retire. That is when he noticed his diffficulty in finding words and the progression of AD (misdiagnosed at first) has been very gradual.
My DH talks about AD sometimes but he doesn't think he is that bad. He isn't compared to others on this board but he doesn't realize how bad his memory is. He ALWAYS has an excuse for why he forgot something or got things confused and that is as aggravating as his not remembering!
Marcia, my 82-year-old wife was first diagnosed with probable AD and started on Aricept almost six years ago, and she accepted the diagnosis philosophically and has made no secret of it -- she might even volunteer to a stranger that she has Alzheimer's in explaining why she's no longer able to do something. She has subsequently had to gradually give up various activities like golf, church, driving, gardening, etc. and has done so very gracefully and without complaint. Her disease has now progressed to about Stage 6c by my reckoning, but we've just taken it a day at a time and she's never really asked questions about what the future holds. In fact, I had also largely avoided confronting what the future holds as her disease progresses until I was forced to do lots of unappetizing reading three years ago in trying to formulate care plans for one of my wife's widowed and childless sisters who also had AD. As far as I can tell, my wife is not curious about what's coming next, and it's certainly not something that I'd want to burden her with knowing and worrying about. She understands fundamentally that things don't get better, and she's done all the right medical directives etc., including even signing consent forms for her brain to be autopsied after her death as a part of a Late Onset AD Genetic Study that she is participating in voluntarily. I believe she's just confident that I'm on top of things and will take care of her, and she often tells me that she's sorry to be "the way she is" and not able to be more helpful and better company to me. I tell her that I know she's doing the best she can and I am too -- isn't that what Jessica Tandy and Morgan Freeman told each other in the last scene of "Driving Miss Daisy"?
My DH tells people he has AD. Many times, they say, no, you don't. Everyone has senior moments. Depending on who we are talking to, I tell them,yes, he has AD and is on medication, is in a drug trial. Good friends who have known us a long time have seen the changes, but to others he presents really well. He uses his AD as an excuse when he cannot do something and very readily depends on me to tell him how to dress. Sometimes he wants to drive and I will say, no, you don't know how to get there. Luckily, he accepts that. At this stage he accepts having AD.
My wife seems to have no concept of having AD. Occasionally she will ask what is wrong with her, but not much lately. She does seem to appreciate the work I have to do, and sometimes says she should be doing something, but never does. Her "conversation" is getting harder to understand. Today, driving in the car, she kept up a steady stream of chatter - commenting on things along the road or about what needs to be done, etc. A lot of it bears no resemblance to reality, so I just agree with her and keep driving.
My wife can't remember what is wrong with her but in her many fits tells me she's going to die. So, she does remember there is something wrong. She's completely forgotten about the driving issue, so that is a good thing. Her speech has become very hard to come by and makes no sense most of the time. Younger kids home for Christmas and they are astounded to see how far DW has regressed. Bright side - last week while tucking her in she told me how much she appreciates all that I do for her. Wow, right out of left field. Made my day. Hope everyone had a wonderful Christmas and was able to enjoy family and friends. Thenneck
My hb has vascular dementia, knows it, and talks about it sometimes. Has told some people he has dementia. We even joke about it sometimes--especially when I'M the one who's forgotten something. He doesn't read much more than the newspaper, but I've given him some articles to read about it in his good time. Once in awhile he says he doesn't think he has dementia. We take a day at a time, and I try to maintain a sense of humor. When I get upset w/him, he gets confused and upset which only makes matters worse. At this point the thing that "bugs" me most is that when something happens to tip the apple cart a bit or dumps it, I'm always at fault, I'm always the one who has to give in. I'm always the one who has to calm the waters so to speak; and, of course, I'm the one who makes final decisions; so the circle goes on. Ah, well, I've rambled off topic. So many of you are so much farther along the trail and are coping. I admire you and appreciate your help for those who are following.
My DH doesn't talk about the AD by name but does mention his memory, losing words, etc. Doesn't want me buying him any new clothes. Talks about being in the last part of his life, etc. He has Parkenism with both Alz. and Vascular dementia. I'm not sure how they diagnose him with both kinds of dementia. He still remembers people when he sees them after years and that makes me wonder if he has the Alz. His spinal stenosis is really pulling him down. He has started therapy again and that is good. We went to daughters yesterday and he walked both down and up a flight of stairs to her basement, which surprised all of us.
We have always talked about my DH's AD, since before it was even DX'd. I don't usually bring it up, but he will- and it's usually when he isn't feeling very good. He keeps telling me "I don't know how you do it". I'll say "do what?" Then he says, "how you cope with me and doing all you have to do to take care of me". These are the roughest times. And he tells me he knows he is getting worse and he worries about me. He called our funeral director last week (a good friend of ours) to come over to "plan his funeral". We had already done that - but he came over anyway, and they talked, and he was satisfied.
He will tell anyone he has ALZ. I think it's a defense mechanism because he knows he doesn't "act right" sometimes.
I do think it's easier if you can talk about it, but only if the spouse still able to comprehend and not get terribly upset by the conversation.
Even though DH knows he has memory problems, there are times when we are going to be seeing other people and he will tell me not to tell them he is having the memory problems. I tell him I won't but, they can tell at first glance he does have problems, but he thinks they "don't know". Maybe that is a defense mechanism?
When I remind my hb about having AD he looks at me like I'm speaking a foreign language -- doesn't deny or accept it just ignores it (or appears to) I have a hard time knowing what he feels he never was one to talk about feelings but it sure would help now --especially when I lose it (I'm ashamed to say)
My DH never mentions ALZ. Strangely, he doesn't talk about his condition or if or when he'll get better. It's just what it is. We went through a long period when he'd say "Why don't I die", "Just let me die" , but that sems to have passed at least for the present. Last night he did say that he knows he's alot of work for me. I too felt he wasn't aware of what I do for him, but down deep something is still there.
kathy37 just read where your from page --I'm in the pac.nw!!!! We live in Westport, Wash. Alittle fishing village west of Olympia Is that familiar to you? We are about 3 hours from Portland maybe too far but would love to "chat" My hb has AD -- in the beg of stage 3 (out of 3 stages) He's 72, I''m 69 Both retired teachers - live on the beach - great soothing medicine plus fun for my dogs to run on
My husband doesn't bring it up. He's aware of the diagnosis, and he did read up on it at the time. He was adamant that nobody else be told, for maybe a year afterwards. Now, it doesn't seem to bother him if other people know -- I've told a couple of neighbors that he has AD right in front of him.
I talk about it very casually, although I carefully avoid any reference to the worst things that could happen. He's fully aware I spend time here. He asks how y'all are, in a very general way, but never wants to read any posts.
He seems totally unaware that his level of functioning is below par ... he makes vague excuses for why he needs help with simple things, and sometimes seems rather fascinated that I can easily do something he's having trouble with.
He never seemed upset with my wanting to petition for conservatorship, and seemed very relaxed when he was talking with the court investigator and with his attorney, and also at the court hearing. He seems to accept, completely, that it was just so that I can keep him safe from his blasted children (none of whom made any attempt to contact him for Thanksgiving or Christmas.)
When I've asked him if he is aware of having problems, he has told me that he doesn't believe he has AD but, if he does, he is sure that it won't ever get really bad. He apparently read somewhere that most AD patients die of something else long before they get to the end stages, and he claims to be confident that will happen to him. He does not seem at all worried about the future.
But I have noticed that he gets very quiet when something like those Aricept commercials come on TV, and he won't watch any shows that hit a little too close to home.
Don't let him see The Savages, then! WOW, did that hit home for me. I watched it after he'd gone to bed, and found it very powerful. I thought a lot of it rang true.
The word alzheimer's has never been mentioned around him or to him. He has been told he has dementia. He asked what that was and I told him it was memory problems. He denies he has memory problems and says he's not demented or crazy. He NEVER brings it up and it isn't discussed at all.
We are 3 years after onset of the first symptom(s) and one year after getting a MCI Dx (age 58) which DW calls "Multiple Memory Cognitive Impairment".
She readily tells people she has Alzheimers. Family & friends both. Mostly through emails but also in person to people she has worked with before 'retirement'.
One thing she does NOT talk about however is the 'retirement'. There seems to be a belief(?) that she can somehow return to her career as an RN (wont stop the professional magazines or discuss retiring her license). She also wont discuss even attempting another type of work.
She originally fought it when I would give her daily quizzes about what happened that day as a way of trying to keep the memory functional. ("Why are you always asking me that stuff?") I make sure I slow down and not tell her the answer (but sometimes offer hints) and now she will do her own mental contortions and can commonly arrive at the correct answer. I think this gives her some confidence that she retains some control and this has also helped her accept the entire situation.
When we talk to friends in public the reaction is well known to this board; "So how have things been?" "Oh, I have Alzheimers" "What? No you dont, we all have senior moments" Then I pipe in and say that yes she does, but the Aricept is a big help.
Then as an effort at public education to distinguish between AD and senior moments, I will bring attention to something weird she just did and expaln that that 'social error' is exactly what AD looks like. This always stops them and you can see them thinking "Maybe this is real?"
At first it was a little embarasing but then I thought what the heck, the disease is real and you are not supposed to be ashamed of having it and maybe if I can teach them a little now, they will understand it a little bit better the next time they see it either in public or (God forbid) their own family.
DW does not see this as a problem, the symptoms are real why not be honest?
Close contacts (friends and family) now all understand the situation and readily forgive all the things they might otherwise take offense at. So this is a benefit.
My DH mentions it occasionally,usually if a telephone company rings & wants to ask questions he cant answer then he will tell them he has AD.sometimes he will tell me he doesnt have AD as there is no actual proof until an autopsy has been done,so I just agree he is right & change the subject & hope he moves on with something else.
We do talk about it, and he will say to other people that he can't remember anything. Over the holidays he saw my DIL's parents, whom we only see a few times a year and my SIL's family who we might see a little more often. I make sure I mention people's names when we see them, even if we saw them recently. But he will say that his memory is bad to everyone. We've discussed how his mother was at his age, and I've pointed out that the meds do help, and it's important that he take them. He knows, and I've shown him some of the video's that Joan has put here on the site, just so he knows that he's not alone. I also tell him about the smart and famous people who are suffering from this disease. Peter Falk being the most recent. I think it makes him feel less alone.
My DH refuses to acknowledge/admit he has AD. However, when seeing his PCP or Neuro he does not disagree with them at all. He admits then that he has "issues with memory."
mine says he has holes in his head. But interestingly, he has been actually BETTER lately. A while ago he put some bread with butter on it into the microwave, on a plastic dish, to soften the butter. He hasn't tried to use the microwave in two years!
My husband doesn't talk about it at all. He really doesn't believe he has it except that the doctor told him. Even then, he challenged the neurologist and asked him how he know. I have been working really hard to get our finances in place for the 'worse case scenario' and he seems to be good with it. He tells people that he sometimes has trouble with his memory but that's about it.
My DH knows he has been dx'd with AD and is angry with the neurologist for making that diagnosis. He thinks it has been taken care of in the earliest of stages and he is just fine now "thank you". When I talk with him about AD he glazes over and will not acknowledge it. He is in stage 6 on the AD scale, with FTD.
My husband has FTD but doesn't really seem to know what he has. He will just say that his brain in shrinking. That's it--no other conversation about it.
My DH talks about his AD quite a bit. Although he is pretty far along (at least stage 6), he is still upset at what he can't do. He will say that his Alzheimer's (can't really say the word anymore, but gets out enough that I know what he is talking about) makes it hard for him to talk and makes his arms jerk around. It's really sad when they are this aware and this far along. He does think that the doctor will have a cure and always wants to go to the doctor.
No discussion about it here. Was diagnosed in 2005..but doesn't agree. He will tell the dr. that he's actually getting better he thinks... Interesting though about the 'hole in the head' mention.. DH believes that during his bypass surg they 'drilled a hole in his head' (?) At times he wants me to look at the place where they 'drilled this hole'..as far as I know there was NO hole drilled in his headddd..Anyway, no discussions possible here. Very defiant and defensive..so we go the route of keeping things calm if possible.
Not much discussion about AD at Our House. DW knows she has AD and mentions that she can't get her words out and that her memory isn't very good anymore. She can be very defiant and and lapse into a defensive mode at times. We had a good Christmas holiday, she did very well, we did our best to simplify things for her and it helped out a lot. She really didn't want to go along with the program but finally said It had worked out well.
She has told people that her doctor told her she has AD but she is taking Aricept and she is better. She understands that the Aricept won't work forever, but we don't talk about the future. Her younger brother died of AD earlier this year, she did spend some time with him several months before he died. She says he is better off dead, but makes no mention or doesn't ask what the future holds for her.
It seems to me like most of them with dementia just don't want or can't dwell on it and therefore just have their own mind problems wiped off their brain. My husband seldom mentions it.
My husband talks about it like it's a joke. Our Christmas was difficult for me, as I had to realize that I won't be able to do the "big Christmas thing" at my house anymore. As wierd as it sounds, I think DH uses his AD as an excuse, if that make sense. Although he is taking Amenda as well as an anti-depressant, he thinks I'm the one with the problem. He gets very defensive about his behavior, but after reading the posts on these boards, I have come to realize that our story is not unique. It is, unfortunately, the norm. I lost both of my parents 8 years ago, and so my sister is the only family I have left. (I have my kids and grandkids, of course), but I get really pissed off at her because she is clueless as to what I am dealing with on a daily basis. She doesn't seem to understand not only the AD, but the financial hardship we are under sine DH isn't able to work anymore. I want to have a dialog with her, bu don't know how to start it. Any suggestions?
Lynn has never talked about it either. In the beginning he would often just stare deep in thought. Sometimes he just said over and over he wished he had the courage to kill himself. That was a very hard time. Now of course he is beyond even knowing what AD is.
Diane, you will find some siblings and some children will stay in denial no matter what you say. Be prepared for this response, even if you are fortunate and they believe you and you get support. No one can fully understand what we go through on a daily basis (even my grown daughter who lives with me and helps me with her Dad - now stage 6 - can understand the loving, touching, bed talk, future planning, and help with everything we do to run our house and lives as joint partners that I miss so very much!). The burden of LOSING your soulmate should be enough for them to realize that you will be in mourning for the length of the illness. You explain that you have had the burden of making certain all financial aspects have been taken care of; durable powers of attorney in place; eldercare attorney to help with the financial matters to keep you from losing everything.
Unless you want her to know the details of your financial situation, you could just tell her that you are not able to go and do as before due to the lack of your husband's income. That you have had to make cuts in your budget to make ends meet. I found that when I tried to talk about it to others, they really didn't want to hear. They sympathize with you, but they don't get it. They will even try to make excuses for your spouse's behavior rather than believe that they have AD!
There are several discussions on trying to get through to family members what we are going through. I can't remember them but maybe others can. I wish you well in getting through to her.
p.s. My husband never wanted to discuss his AD but was not in denial of it - in fact he told our children and best friends at the time of his diagnosis that he had AD, but now has aphsia and is beyond discussing anything.
Mary, thanks for the response and good info. You are so right when you say she doesn't realize I have lost my soul mate of 35 years. I think in her mind she thinks that because he is at home, and I continue to work, everything is normal. As she and her husband make good money, she doesn't understand my financial situation. I'm just feeling a little overshelmed tonight as we didn't have a good day today. Thanks for caring!
p.s. Sorry about being beyond the point of being able to discuss anything. My gosh, I know I will be there too, someday soon, and it scares the hell out of me. You're in my prayers.
Diane, one thing you might try to start the dialog (not about your feelings as a spouse, but simply the nuts and bolts of caregiving) is tell her you found a great little booklet, that can be downloaded for free, "Coach Broyles' Playbook for Alzheimer's Caregivers."
http://www.alzheimersplaybook.com/
The link for the free .pdf is in the upper righthand corner of the page.
Thank you Sunshyne. I sent her the link, now I hope she'll read it. I was going to give her this website to browse, but decided not to as people here are so brave to share stories and experiences. I don't want to break that bond and confideniality. Thanks for being there. Off topic, but i think you'll relate, my DH is taking his first shower since Christmas morning, and finally changing his clothes! It's a good day.
I feel fortunate that DH got his dx from the neuro and it went over his head and always said the dx was wrong- and he always said, it was "burnout- work related stress." if he had really thought at the time he had a terminal disease like alzheimers, i dont know what he would have done but i dont like to imagine that at this point. he was a very intelligent man and would have known what was in store for him in the end. i am glad he never knew. Divvi
My DH talks about AD sometimes but thinks he is okay. Quite a while ago he said something about having holes in his brain! That might be a good description of AD.
Came across this thread and it’s something I’ve been wondering about. My wife does not talk about her condition at all. She’s aware that she has problems finding the right words but to her it seems to be more of an inconvenience than the disability that it actually is. She of course does not realize that she’s asking the same questions every 5 minutes. When we have an appointment with the neurologist she says, “I hate going there,” and when doc asks her, “how are you doing?” she says, “I’m fine.” At this point she does not seem to be depressed, for which I’m thankful. I'm wondering if she will reach a point where awareness of her condition comes crashing down. ~danielp
Dan, my husband has FTD and talks often about his condition. One of the cruel twists of FTD is that the memory last longer than AD and so he is more aware of his condition. Most times he can't evaluate how far he has deteriorated but notices and gets frustrated with difficulty with speech, lack of concentration, no more books, which he loved, difficultiy following the plots on tvs and movies. At one point he was incredibly depressed (pre-dx) but now I am seeing a difference on the Seroquel. He is smiling more and is letting things go when confronted with a problem with our 9 yr old. I'm told that his memory will be one of the last things to completely go. Likely he will lose his speech, ambulation and etc. first.
My DH is very aware he has AD and likes to educate everyone about the disease. Since he no longer has a business card, he had cards printed up with his name, phone, e-mail that say say "Ask me about Alzheimer's disease. Let's Talk." If he is in a store and is having problems, he will discretely hand to the cashier. His acceptance has made it much easier for me to cope with the disease.
He contacted an Oregon State University Gerontology Professor a few years back has spoken to her geriatrics class (although he is only 55) for the last 3 years. He is now in the Elan study at OHSU and today the Dr. asked him if he would attend a Phd class at OHSU this Monday and answer questions about AD. We agreed because, as I told the Dr., we want to raise awareness among professionals that many people in their 50's like DH have AD and in the early stages can be very functional. The Doctor shared how the infusion center was resistant to having the Elan study participants mixed in with the other patients because they thought they would be exhibiting poor/bad/disruptive behavior. The nursing staff did not understand that early stage patients could seem and behavior so normally.
My husband says, as he looks around at the other residents in the care facility, "Alzheimer's. If I ever get like them, I hope you'll shoot me." He sums up his problem as, "Short term memory loss that's getting worse."
My husband will talk about it now - but I let him bring it up. BUT for the first four years, he told everyone that I was delusional and making things up about him. That was tough. He is high functioning and sometimes I will see his face contorted and he will be crying freely. When he does bring it up, the crying is about feeling awful about AD.
My DW used to volunteer to people that she had AD, but it seems like now she's forgotten it. She knows that there's something wrong with her, but has seemingly forgotten the name -- she asked me the other day what it was. Two of her next younger sisters, both widowed, also have AD and live in apartments in an assisted living facility back in MS. In talking with my DW's youngest sister yesterday (she doesn't have it -- yet), she told me she'd recently talked with one of the sisters back in MS and had mentioned something about my DW having AD, and they said, "Really? I didn't know she had that -- I wonder why Jennie and I don't have it?" So I guess that's three for three who have forgotten it.