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.

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Have you actually been in the house and witnessed how much care she needs? I know that when my LO who had Vascular Dementia went to her wheelchair, it really does increase the work and physical stamina that is required. Plus, there is the all night vigil. Doe she take a sleep aid to help her rest at night? I'd explore that with her doctor.

For an 88 year old person to be a full time caregiver for a person with significant 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.
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Your mom could live a long time. If at all possible, please try to convey this to your dad and encourage him to pace himself by getting more assistance now.

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.
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He is a sweet husband putting in such a valiant effort. God bless him! If the suggestion below doesn't work maybe go at it from another angle: that you and sis need help and would he do it for your sake? His plan to keep her at home "as long as possible" is really a tornado that is sucking in you and sis, besides exhausting himself. If he is determined to do it all (which obviously isn't true since he already has outside paid help plus you two) and he doesn't have dementia, you can't force him to accept any more help. He may have his own health crisis that makes the decision for him (and I sincerely hope that doesn't happen). Of course, the care is all going to get more and more intense, so are you and sis willing to go down that path with him? Does he really want his last times with her to be in a state of fatigue and emptiness? You both may need to scale back so he sees the need to add more in-home help until her time comes for hospice. Wishing you peace and patience as your dad comes to accept reality.
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Dlanz0423 Aug 2019
Thank you! We've discussed his need for self-care if he's to safely and efficiently care for her. We've also encouraged him to be a husband providing comfort and companionship and leave the daily chores and "caregiving" to someone else.

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.
What a dedicated husband. Hugs to him for caring and loving his wife so. I would ask him to please try to accept some help at night. Once he gets comfortable with someone he would feel ok about getting some rest himself. Tell him that you are concerned about his health and ability to remain healthy if he can’t get enough rest. Best of luck to you with both your parents.
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