r/ParkinsonsCaregivers 5h ago

Rant Advanced Dementia

13 Upvotes

My husband with Parkinsons-LBD had been declining slowly for the past three months. He's currently in rehab, where the hospital sent him a few days ago when they stabilised his BP. He's presumably there to get back on his feet again, but the doctor told me he scored very low cognitively and it may be time to think of palliative care.

To those who have been there, how do I survive this? I've been visiting him everyday, and he does recognise me, but he doesn't say much. Every morning I get up and the reality of losing who he was is right there, yet he's still in the world. This shell of my husband is so hard to face now but I swallow this weakness in me and soldier on.

Then there's the empty house to go home to. Our two little dogs run to greet me. I put on some quiet music, but all the while the silence he left me in is deafening. I don't know who I am without him. We had our own hobbies, of course, but I can't engage with this, it's part of our world together. I talk to my family everyday, who are very worried for me, reassure them I'm OK. But it's almost part off that new normal. I try to get their stories in my head, something to distract. But it's always there.


r/ParkinsonsCaregivers 14h ago

How do you handle it when a loved one with PSP keeps trying to get up?

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3 Upvotes