I am my 74 year old husband's caregiver. He was originally diagnosed with Parkinson's Disease (from agent orange - Viet Nam) in 2002. Since then the doctors' diagnosis differs from Parkinson's to Progressive Supra Nuclear Palsy. He also has Parkinson's related dementia and is clinically blind - as he can no longer open or keep his eyes open. We did good until eleven years ago, when he fell and broke his arm. Since then he has continued to decline. He gave up driving seven years ago. I am his sole caregiver - as we have no children or living relatives. With the exception of the neurological condition and it's related issues, he is extremely healthy. No heart, high bp, sugar diabetes, cancer or other issues. He could live for a number of years. He still likes to exercise (do what he can do - to keep himself as strong as possible) almost daily.
I'm exhausted. Most recently he has developed something new - where he has to get up every two hours at night to urinate. I forget the name of it - starts with a "N". We've been to three different specialists. They know what it is, but there really isn't a good treatment for it. Also, I need to put a plan in place - should something happen to me (either for short term or death). Since I am healthy and four years younger than my husband he thinks I'll outlive him and continue to be able to take care of him forever. It is getting more and more difficult.
I've told him for the past year, it's time for help and finding a place - even if he doesn't move now - so we have a plan. He is able to understand this, but is in denial as to the state of his condition.
His condition isn't good enough for Assisted Living, but most days, his condition is too good for a nursing home - just sitting in bed or a wheel chair for most of the day.
All comments and suggestions are welcome.