Mom is declining now at a rapid pace, becoming wheelchair bound in the last month. She is experiencing Sundowners and even with medication she doesn't sleep through the night consistently. Dad insists on sleeping in the same bed or in the same room so he can hear her if she tries to get up. That means he isn't sleeping either.
My sis and I have both suggested hiring someone at night. He has help 4 hrs/day, 5 days a week and of course hospice makes regular visits. He feels very confined but won't leave her for very long in someone else's care.
My question is, what can we expect as she continues to decline? When do we decide that she requires 24 hr. care that he simply can't provide and what will that look like?
I live 75 miles away and come in twice a week to shop and check on them. My sis lives several states away and visits every three months or so. I have children in town who can be there in a minute if there's an emergency but Dad is determined to do everything he can not to burden us. He's worn out physically and emotionally.
Out of necessity he has relinquished the housekeeping and cooking to in-home care person 4 hours a day/ 5 days a week. He could get by with 3 days a week because I could assist 2 days while I'm in town anyway.
His biggest challenges are getting her to the bathroom, cleaning her up if she messes her Depends (this doesn't happen often but will be more frequent in the future) and of course, not sleeping at night.
The bathroom issues are unpredictable so unless he has 24/7 care there's no way to cover that. If he adds an aide 8 hrs. at night /5 nights a week maybe that would allow him to have sufficient rest.
I've read ways to minimize sundowning which I need to pass on to him. It's interesting that one study showed a much higher incidence of sundowning with in-home care(60%) and as little as 20% in nursing home care.
Bottom line he can't afford 24/7 in-home care, nor can he afford for them both to be in different levels of full-time resident care with Mom's special needs. Right now he's trying his best to keep her home as long as possible.
I don't know how long that will be or when it's time to insist that he can't keep her home any longer.
My ex-husband's mother is 93 years old. She was diagnosed with Alzheimer's about 11 years ago. She has been in a wheelchair for a few years now. My ex-husband is caregiver for her and for his dad. He has to move his mom into and out of the wheelchair, feed her, put her on the toilet, and change her diapers. There is no end in sight.
For an 88 year old person to be a full time caregiver for a person with significant dementia......it really does seem unfeasible to me. I wonder if your father is just not being realistic. He may not understand about incontinence, toileting mishaps in the bed at night, the repeating, etc. Even with help 4 hours per day, there's a lot of time that it's all on him. It's difficult to imagine. How would he get her out of house in case of fire?
Because, my mom's care would be my top priority and she is now helpless, I'd visit to confirm if her care is sufficient. Is dad's judgment sound on this? If not, I'd get a legal consult with an attorney to see what I could do, if father isn't receptive to more help. With Hospice coming in, I would think they would have some input too.