My husband's dementia is progressing, after a stroke. He seems better in the morning, then is more confused and unpleasant later in the day and evening.
He could go a whole day without saying one word. Our conversations almost always start with me saying something. Even then he may not reply and says, "I heard you" when I ask hime to respond - - that's it!
He was a scholar with many, many accomplishments both academically and personal. He was my friend and soulmate. Now so much is gone and I have a hard time being sweet and encouraging when I no longer get anything from him, emotionally or physically.
I think just having a place to vent will be helpful. I have too much respect for him to talk to friends/relatives about his specific issues. Everyone lives far enough away, so they do not experience his present mental state. He is still able to do so much for himself and is nowhere near the point where outside help would be appropriate. And he thinks he is just fine.
This is a lonely life and whatever years I have left must be spent with him, as long as he needs me. I know he would take 100% care of me if I were the one to be in his situation.
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This is cutting you off from your support system, which everyone who does this desperately needs. Dementia is a disease and it's not a failure either of you are responsible for - would you refuse to talk about his illness if it was cancer or something else physical? And you can lean on those closest without going into details, expressing the sorrow you feel and how different your life has become is about you, not him. Years ago people used to hide things like prostate or uterine cancer and suffer in silence because of taboos that seem ridiculous today, don't do this to yourself.
With my experience every time my husband has a change of mood it is usually related to something physical. The stroke probably really affected your husband a lot.
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Sometimes when a person suffers a drastic loss of language, the focus on that can be so centered that it can exclude other potentially related conditions.
Sometimes a person will respond “I hear you” and mean “I know you said something to me” without meaning “I understand what you said and am going to respond to you”.
I have BEGGED my wonderful husband to have his hearing evaluated for 5 years, and he has consistently and aggressively refused to do so. Recently he unhappily had his hearing evaluated, and will be getting hearing aids sometime this summer.
As much as it distresses me that his stubborn refusals have probably cost him more hearing than it would have if he’d started the process sooner, at least we know NOW.
If you haven’t been offered hearing and speech evals, see what his medical staff thinks. Even partial remediation, if available, can be a real morale booster.
If u have the money, maybe check out a place like this.
You're right -- he would do it for you, too, but be sure not to sacrifice your own health and well-being caring for him. It isn't uncommon for the sick spouse to outlive the caregiving one when the caregiver wears themselves out.
I know of what I speak -- it happened with my parents. My dad was healthy and cared devotedly for my mom, then died only a month after being diagnosed with cancer. My mom continues to hang on nearly three years later.
Make sure you put together a support system for yourself. My dad stayed active in the local Rotary Club, and I watched Mom while he went to his meetings. As he put it himself, his world got very small with Mom's illness, and I think it definitely contributed to his demise, along with getting little sleep as my mom wandered around at night.
Don't wait until you're literally dying yourself to place your husband where he can be cared for. It frees you up to just love him, and that's priceless for both of you.