My DH is in end stage AD but does not talk about it at all. If he messes his pants, he ll deny it was him. Same with wet pants, he wears undergarments. I just feel so bad, here he is on the last leg, and still denying anything is wrong. I've tried to assure him ill be here for him, but he really chooses not to discuss it. Anybody else with this problem?
Ky caregiver, My heart and prayers are with you. I know you have been a loving and dedicated caregiver so you have done all you can do. My DH is nonverbal so I do not have this problem. It is so true that caregivers have to bear the burden till the end. Since they can't reason we will never know why they respond the way they do. Just know that you have done your best and none of his actions are your fault Take care and here is a big (((Hug))) for you.
My husband knows what he has but will never discuss it with me - he does with others though. I have no idea what he will be like when he gets further along if he won't tell me now what is going on.
Hi Ky caregiver, Many AD patients do not have insight into their condition. In other words, they do not realize that there is something wrong with them. That does not mean they are in denial. It means that the disease has robbed them of their ability to recognize that something is wrong.
I do not think that lack of insight into their condition is a problem - I see it as a blessing. My husband originally had insight into his condition but he no longer does. Yet his disease is not as advanced as your husband’s disease is. I hope that when my husband becomes incontinent he does not realize it because if he did, he would feel humiliated and I do not want him to feel that way.
My husband has only once acknowledged that he has dementia (bvFTD) and that was because I forced him to admit what was wrong. That was soon after diagnosis; I still feel "guilty" that I was so insistent that he verbally acknowledge sometime was wrong.
Myrtle is right...many just do not have insight into their condition...I think it's called agnosia. When my husband was more verbal, he would never discuss what was wrong and would only say "nothing's wrong with me". Whether or not he believed that, I don't know. I finally decided not to even bring up the subject; what was the point? If he knew, then discussing it would be hurtful, if he didn't, then why make him face the fact his brain was dying?
I think I was the one who needed to talk about it, not him.
I know it is a blessing in many ways, I certainly don't want hm to be humiliated at all. My concern is, he is dying. I wish he could talk to me about it. I know he is a Christian , very devoted before this disease robbed him. I just don't know that he knows that anymore I guess. I'm not sure what I want. I guess I wast to assure him he will be ok.
When my DH first started saying nothing was wrong with him, even blaming me for looking for a problem.....I also thought he was in denial. But I learned from this site that there is such a thing as anosognosia, which means that someone is unable to understand the fact that there is a problem....so he is not able to "see" his own deficits. In many people with dementia, this trait is present; any attempt at discussing this with such a person would be fruitless and potentially cause the person to be stressed and upset.
I also noticed something related to this. Once, when I was correcting my husband or complaining about something he did, he said sadly, "I'm sorry, I guess I never do anything right anymore." I could have cried. From then on, I made it a point to thank him for any efforts he made and to ignore or gloss over his mistakes. I think that one of the hardest things for people with dementia must be the feeling that they never do anything right and always do everything wrong. It must be very demoralizing.
Please leave your DH be. What do you want him to say? Yes, I poop in my pants, yes, my brain is melting, yes, I forgot about being Christian, yes, I'm dying. Why would you want him to talk about such things, can that make YOU feel better? You say you don't know what you want, but I think you do. You want him to have some peace, some feeling of security and protection that you will be there--and you will be, he knows that, we know that. Whatever his reason for denial, it's his to have. Everything does not have to be talked about. He feels your love and that is no small thing.
Hi Ky caregiver, I've been thinking about your post from yesterday, where you said you were not sure what you wanted but maybe it was to assure your husband that even though he was dying, he would be OK. You also mentioned that he was a devoted Christian but he may not know that anymore. I am not religious, so I am skating on thin ice here, but I was wondering if what is bothering you is that your husband is no longer able to be comforted by the promise of salvation offered by his Christian faith.
If that is the case, I'm wondering if it might be a good idea to talk to your pastor about your concern. Even though your husband doesn't know he is dying, he might find it comforting to be in the company of your pastor and you might benefit from the pastor's reassurance, too. Although my husband and I are not there yet, I know this stage is a terrible time for everyone who goes through it and you have my sincere sympathy.
KY cargiver, so sorry that you at this stage in your life. Yes we are all frustrated, this is the place to let it out without judgement. We have all been there. Do you have hospice in place? they can answer alot of your questions and allay some of your concerns. I know what you are saying, "A life that was full and so full of meaning is deminished to this shell." It is so hard to bear. Arms around you for strength and understanding.
Ky Caregiver, Dan has NEVER acknowledged that there is anything wrong. He was always the master of denial, so I don't know if it's because of his nature, or if he is simply is unable to understand it, or maybe both! It's better for him, but for me, I think I would just like to hear some acknowledgement that he appreciates whatever I do. There again, though, he never was the kind of person who was verbally free with his appreciation or compliments. (Sheesh, does anyone else ever look back over the last 40-50 years, & wonder "what was I thinking"?)!!!
Dan has also been a believer. I asked him just a couple of weeks ago if he still believed in Jesus Christ - his answer was so lucid - "oh, yeah, that will never change". Maybe some things are just so deep that it's still there, but just can't be expressed.
BIG HUGS to all of us out there trying to do our best with no visible results - this sure isn't for wimps!!!!
Mim & all - yes, I have looked back over the decades and wondered what my life would have been like if the boy I married was who I thought he was. See, I believe that my DH always had AD, from things that happened years before it became obvious, so much can be understood now that left me so bewildered then. I always trusted him completely, I knew he'd take a bullet for me, he was just the most decent of men, but there was always 'something' wrong. Well, there are no do-overs.
Bettyhere*, I've been wondering the same thing....did he always have memory problems leading to his dementia? My husband was kind, very loving, enjoyed traveling and fun times, was a steady if not stellar worker, loyal and a man of great faith. BUT, from the day we met he would constantly forget where his wallet was, his keys, his eyeglasses. I always attributed his forgetfulness to being disorganized; never putting things back in their place, just dropping them wherever he was at the time. That's why I "missed" the early signs, he was just being himself. Looking back now, I wonder. If so, it would have started when he was 30.
Bettyhere* andLFL, I have from day one of the dx thought this. My DH was the same early on as your husbands were, then as time went on he started changing in that his reaction to situations became unpredictable. He could over react or under react, never know what I was going to get. One glaring example, once he blew his top when I gave him a spoon with his beef stew! I should have known he wanted a fork!! I always said he was 90% the perfect husband. But that 10% was crazy making. I told his doctors that I did not know when his personality that I knew ended and the AD started. They seemed to flow one into the other.
I think for some the AD is just there under the surface and slowly comes to the top as time goes by.
Once found his glasses in the shed after looking around the house for hours. Then another time in the yard. Keys, oh my they ended up everywhere.
Bettyhere, No I don't want him humiliated, Ive said that. MiM my DH was always as you say "the master of denial" But we are talking about serious stuff here, dying. My husband and I had some serious problems during the years of our marriage. I feel certain a lot of it was Alz at work in the later years. we"ll soon be married 44 yrs. My husband has acknowledged his thankfulness a few times. He told me once he was sorry I had to do everything! That was a few yrs back. As for the forgetfulness, my husband wasn't too bad about that. Confusion was his bad trait, just one thibg at a time on his mind. Well, ive alredy had our pastor out, and DH went to sleep sitting there beside him. And hospice started last week also, so im right on par with your suggestions. Thank you all for your input. Ive seen several times on this site that hospice isn't called early enough, so thank you all who said that, and God Bless each of you, whatever stage you are in on this journey!
Oh, dear, Ky, I never thought you wanted your DH humiliated by your questions - far from it. I know too much about what you are both going thru to think that.
We were married 53 yrs when he died. People always challenged me when I said he always had it, I had no idea we were dealing with a brain disease! But there was a phone call to me from his supervisor at work when he was about 25. He suggested I take DH to a doctor, he didn't think he was responding to things normally. It was in the 50's, long before anyone talked about AD or even said the word, I did nothing about it. I thought he was afraid DH was out to get his job, or something, I didn't understand the call at all. Years later I'd realize the supervisor probably knew someone, maybe his father, who acted like DH and got so bad, he was trying to warn me but didn't have the words to say it clearly and I wouldn't have believed him anyway. Today we know that it can be there for decades before it comes roaring out. Tough on a marriage. Take care of yourself, dear lady.
My husband never discussed his memory issues at all at any time..I think that the memory issues in it's own odd way protects them from realizing they have a memory problem at all...that is why it is US who have the problems...and they can't help it. And it leaves us feeling so alone in this when we feel we need to talk about it and even understand things better but they can't go there because they don't know they are there in the first place.
I am sure you are right Mimi*. I know DH only was aware of his problem for a very short time (less than a few weeks) after the dx. Then it all went out of his mind never to be thought of again. And I for one am glad.
A psychiatrist who was a member of a support group I went to a several years ago (his wife had EOAD and has since died) told us that some people know they have a problem and some people don't. My father knew there was something wrong with him almost until the end of his life. My husband knew until about six years after his diagnosis, although he became less able to articulate it. He is a very polite man and he always said to me, "Thank you for helping me."
Now that blue, LFL, and Betty bring it up, I am beginning to wonder whether there were signs as long as 25 years ago. But I will lose my sanity if I go over those happy years with a fine-tooth comb looking for signs of AD, so I'll just leave it be.
OMG, I thought I was the only one with a husband who absolutely does not think anything is wrong with him even though two doctors have point blank told him his is in early stages dementia. He had a CAT on the frontal lobe of his brain and it did show that he had a silent stroke at some time. I keep hoping that is the only reason for his memory loss but the doctors don't feel that way.
I am new to this site - I live in Canada - and so far I have gotten a lot of information! Thank you!