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.

Thank you.

Hi LexiPexi!

You might find this article helpful:
A Senior Living Advisor at A Place for Mom are also helpful resources to explore what services (in & out of the home) you may qualify for. Their service is free for families as they are reimbursed by communities across the country. They will get you connected with an advisor in your area who can go over what resources may be available now or in the future.

Your husband is lucky to have you! Don't forget to take care of yourself as well, caregiver stress is a real thing!
Helpful Answer (0)
Reply to Dianne Stephens

I feel silly asking this but are you rather is your husband seeing doctors at the VA?
The VA is bending over backwards to help Vietnam era Vets. (by the way from what I have heard do not use the term "Agent Orange" the term should be "Agent Rainbow" as there were many chemicals used and if you say Orange and he was not exposed to orange but Yellow it may effect how he might be classified.)
Anyway....if you are connected with the VA great as they can help a lot. If you have a facility near you that has "The Green House" set up please tour that. The Green House is set up like a house with a central kitchen, large gathering room and individual bedrooms. Very much like home not like a hospital or "nursing home" set up.
And since he was exposed to chemicals and those chemicals have a great deal to do with his current health status he would likely be classified as 100% Service connected disability. If that is the case his stay in a VA facility will be of no cost.
PLEASE contact a Veterans Commission Office or the VA and they can help determine what his benefits are.
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Reply to Grandma1954

Omg what is with this expert and her pushing of “a place for mom”? It’s spam!
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Reply to worriedinCali
Segoline Jan 13, 2019
Thank you for saying so. I feel the same way. I had a terrible experience with that outfit. The Seattle Times did an article on such organizations.
Hi Lexiepei, sounds like maybe neurogenic bladder. We have a good urologist who gave a med that helps a little for our situation. Anyway, there are different types of catheter type of ways a urologist can help with that might be a solution to getting up so much at night. Check with a urologist to start. Does private pay or Medicare pay for a home health aide to come in a few times per week? That could give you a bit of a break. Feel free to message me
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Reply to Silverspring

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