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Dee2015 Asked December 2014

My husband is so terrified of having dementia that he is still in denial. How can I care for him as long as he refuses to accept it?

His fear is so great that he cannot accept what happened to his mother and grandmother. I am walking on eggshells caring for him without talking about his failing mental abilities. I have to talk with doctors and others separately so that they can treat him without distressing him. It is extra difficult now that he is making so many more mistakes and he wants to continue doing whatever he wants. Has anyone had a similar experience, and if so, any suggestions?

jeannegibbs Dec 2014
My husband knew and accepted that he had Lewy Body Dementia, and I think that made things much easier for both of us. It did not always believe that the dementia made it unsafe for him to do certain things, though. We would have conversations like this:

Coy: I can carry my own snack try!
Me: I know that you have done it with no problems for many years. But today ol' Lewy seems to be up to tricks and you seem a little unsteady. Just to be on the safe side today I'll carry it.
Coy: Well I don't think you need to, but OK if it makes you feel better.

If he didn't know and accept that "Lewy" could trip him up it would have been harder to convince him, I think. Also, as the disease went on he seemed to relax and just trust me more. That helped, too. And that mostly took time.

I feel sorry for you with the extra challenge of caring for someone who doesn't accept his disease. That is hard.

My mother's lifelong coping style has been denial. She has dementia but my sisters and I never talk to her directly about it. She is in a nursing home now. When she says, "Oh I can't remember anything any more! I don't even know if I ate lunch today!" I say, "that is OK, Mom. The helpers here are very good about remembering for you. They come and bring you to the dining room when it is time. You are now retired from having to remember everything." She, too, seems to have relaxed some and just trusts others to care for her.

I guess either way you have to build up trust. Whether they accept or deny it, the person with dementia has to feel they are being taken care of and they can trust their caregivers to do the right thing. That doesn't happen overnight.

jiowa12 Dec 2014
I will say that after caring for someone with dementia is extremely difficult. It's hard to discuss delicate matters about them without them getting upset. I hope that you take time for yourself and things get better. My prayers are with you.

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notrydoyoda Dec 2014
Wow, you are caring for two dementia parents at home! You must be super woman. What are you doing to take care of you? At some point the 24/7 care of two persons with dementia is going to become overwhelmingly impossible. I hope you have a back up plan. Love, prayers and hugs.

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