I live alone , hence no caregiver. Shortly after my diagnosis, I decided to move from the home I had since 1987 to a Continuing Care Retirement Community (CCRC). Do you have a caregiver that lives at home with you? If not, have you made plans for your future should your disease progress?
Indeed, I have a wonderful caregiver, my wife, who just happens to be a nurse, though this is a two-edged sword, because she deals in her job with many people in the most extreme stages of PD and can’t help thinking I may end up like them. So I’m afraid my PD has upset her more than it has me.
I’ve been “fortunate” (of course, if I were truly fortunate I wouldn’t have PD to begin with!) in that my day-to-day living hasn’t been grossly affected, so our plans for retirement and eventual need for assisted living are what they’ve always been: when we can’t care for ourselves, someone else will have to. And so we save every penny! Old and incapacitated is bad, but old, incapacitated and broke is worse.
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