Boutska still struggling

[Boutska]

I wrote several months ago about my husband David, who was diagnosed with PSP last April in 2019. He has become totally apathetic and the only person who seems able to bring him to life is a wonderful PSW called Randy, who makes him come alive and who can cajole David into doing all the things he otherwise refuses to do, like walking, exercising, having a shower... and even getting out of bed. Recently, during a respite stay, David refused to eat meals and preferred to stay in bed during most of the one week stay. I found out today that his caregivers tried to get him up for meals but received an emphatic NO when they told him to get up out of bed. I said they mustn't take the initial no for an answer because his first response is always no - even to me. He is apathetic, not even interested in watching his favorite programs on tv and has no with to socialize with anyone there.

His first respite-in September and was tolerant despite that he preferred to skip meals hand stay in his bed for the duration. This stay in December I'd not give him the routine carême should have hade, like biweekly showers dressing every day, shaving every day.

My greatest fear is that I won't be able to. Cope with the care he needs. I have been walking around with a broken arm for over 2 months, can bare. Dress myself m much less him, and feel I need help desperately to cope with what'll will happen next. PSP is a merciless disease. I'll watch over him at a dstance if need be.

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Everyone reacts to PSP differently. David is going to do what he is going to do. You have to think about your well being also. Caregiving is hard enough without having a broken arm to deal with. I had a hard time letting go of control of Larry’s care. I would use any support you can get from your health system.

[salem16]

My husband was in nursing home, I had my own issues at time he was diagnosed. It sad to watch my hubby go down hill . I constantly wonder to this day if I had him at home he would have lasted longer or I would have cracked. It so hard, he passed July/19. I constantly try to imagine me in his situation. At some point you may have to put him in home. The best answers are on this site. Hugs to you.

[MaddyS in reply to salem16]

Hi Salem

This disease does not let go, even after our loved one dies. We, the carers start to wonder whether we should have done this and not the other ..... Try not to dwell on these thoughts. We all do it - we all did our best at the time, we could not have done more. Take care of yourself now, he is in a better place, away from PSP. Love and hugs - Maddy x

[salem16 in reply to MaddyS]

Hugs Mandy thanks

[Cwolpe]

You need to tell his Dr that you neex help with him and they will set it all up for you. Trust me. You need it. Im walking around with a broken arm as well and couldnt imagine if mom was still here and i had no help. Good lord it would be a mess. Please keep coming back on here as this is a wonderful place for support and ideas. Talk to his Dr. You need the help.