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anonymous256140 Asked October 2015

At-home care or nursing home?

My 93 year old father has Alzheimer's dementia- stage 6ish. He is wheelchair bound, and incontinent. Luckily, he is compliant and pleasant. We have tried to hard to keep him at home with 24/7 caregivers employed with agencies. My sister and I manage the specifics of his care. We do not live locally but visit 2-3 times a week, His daily care is dependent on live-ins. Although we've had live-in care for 4+ years, this past year has been awful since he has become wheelchair bound. His caregivers come and go, sometimes without explanation or warning. We have had 10 caregivers over the past 9 months. I am so discouraged at this point and am always waiting for the next problem phone call. I have visited nursing homes for long term care and I think keeping him at home in his familiar environment is best for him. However, this is taking a toll on me. I am struggling with feelings of guilt and anxiety and don't know how to proceed. I feel responsible for Dad's well being because the live-ins are not medical people. Do I keep living with the uncertainty of his care and just gut it out? Or do I proceed with nursing home placement? When does one know the answer to these questions?

anonymous256140 Oct 2015
Thank you for your comments and observations. I think my difficulty is that we are right on the cusp of deciding that nursing home care would be a better option for my dad. It's a hard decision, but your insights and suggestions are helpful!

freqflyer Oct 2015
Jan, my Mom is in long-term-care and I have noticed it will take two Aides to lift her from her bed to place her into a wheelchair, and here my Mom is a tiny person of 80 some pounds.

I would assume your Dad is much heavier, and eventually the live-in caregiver will develop back issues, thus the high turn over. I hope your Dad has a workman's comp rider on his home insurance in case one of the Caregivers does claim injury.

Instead of having a live-in caregiver, why not hire 3 shifts so at least the person on each shift can go home and get some rest and be refreshed for the next day. Otherwise, one person is working 168 hours a week, and that's very exhausting especially with your Dad having advanced Alzheimer's.

My boss's wife had Alzheimer's and he have one gal who would work almost 12 hours a day caring for his wife, and he would take the next 12 hours. Some days he couldn't come to work as he had no energy as his wife was up half the night. It is so sad to see this happening to a loved one.

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Windyridge Oct 2015
I think Cwille's last paragraph sums it up. An elder at this stage needs more than a sitter and helper. A skilled care facility will provide for all his needs. If he is in this advanced stage of dementia I should think it would be a fairly easy transition for him. Remember you also have to take care of you. You can't go down with the ship because you feel guilty.

cwillie Oct 2015
I apologize if I am wrong, but I think part of your problem may be that you expect too much from your live in caregivers. I have my mother living with me because she needs supervision 24/7. She too is very compliant, mostly bed bound, really easy to care for in a way. But I still must provide continence care, dressing, meal prep, dispense medication, do laundry, watch for specials and shop for all the products she uses, try to provide some form of entertainment to give her life meaning, and am on call through the night if I am needed, all the while basically trapped in my home under house arrest. Even live in caregivers need nights off and days when they are not on duty. I do get 8 hours of care from aides each week, and I can go out briefly in the mornings because she sleeps a lot, but would I do this for a stranger, heck NO.
I suppose you or your sister could try to personally take over more care yourselves and rely less on live in help and more on daily aides, but otherwise I would seriously begin searching for an appropriate facility closer to you that can provide shifts of trained caregivers, socialization and activities. Good luck.

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