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If your husband is a Veteran the VA may have programs that he would be eligible for. (and if he is a Veteran YOU can get paid to care for him)
If he is eligible for Hospice Medicare, Medicaid and most other insurance will cover Respite (almost 1 week) each year.
At this point you should seriously consider placing your husband. Of course he is resistant to anyone but you caring for him, but this is very common with dementia and with the elderly who do not have dementia.
It is not his choice to make though. You cannot continue 24/7 because that will not end well. Something like 50% of caregivers die before the person they are caregiving for.
Think about that. Would your husband be better off of you worked yourself to your grave?
No, he would not be better off.
Yes, he will probably decline if he's placed in care, but he will get used to it. He will have to. You can be his advocate and make sure he is well cared for.
Please consider placement for his sake and your own.
I have the feeling that he will still resist any in home care even though he tells you to do something. It is the nature of the disease.
An ideal situation could be a day care which gets him out of the house for a few hours. At some point you and your sister will need to gang up on him and tell him that he needs a helper and that he needs to follow your instructions.
It is a fine balance providing care w/o abusing oneself.
Try contacting your local Area Agency on Aging to see what services they offer.
If your DH qualifies for hospice, they offer respite. Please don’t assume he doesn’t qualify w/o having him evaluated. My DH aunt has been on hospice now at least 3 years.
And yes, he might very well decline when he isn’t with you.
You are declining because you are forced to be with him non stop. You have to matter too. You are also a person who deserves care. I’m not saying it doesn’t matter what he wants but his life is not the only one being affected.
My cousin cared for her mom with Parkinson’s for many years and she finally had to accept that she had to have respite. It was a big help for her when her mom started receiving hospice care.
https://www.gastongov.com/443/Adult-Aging-Services
https://www.medicare.gov/care-compare/results?searchType=Hospice&page=1&city=Mount%20Holly&state=NC&zipcode=&sort=alpha&tealiumEventAction=Landing%20Page%20-%20Search&tealiumSearchLocation=search%20bar
Also Senior Services or in my city the Shepherd Center has volunteers that will come stay a few hours so you can get a break.
You can also take him to your local Adult Daycare Center where he can stay 5 days a week and up to 8 hours a day, which would give you plenty of time to get done what you need to.
Ours does a wonderful job with keeping the folks occupied and fed breakfast, lunch and a snack. However that is not free, but they do offer financial assistance for those who need it.
It is so very important that you take care of yourself during this journey with your husband as the statistics say that 40% of caregivers will die before the one they're caring for.
If that doesn't scare you, I don't know what will.
I wish you well in finding the help you need.