Help at home can be cheaper than a move to a facility and enable her to stay home for longer. We were able to keep my Mom at home all the way to the end because I had hired help. No judgement at all for families who must make a different choice.
I found aides thru agencies and word of mouth referrals. We tried them out slowly, before it was absolutely essential, just so she’d get used to them. First few times were invites to family meals for socializing & hanging out, getting to know them. It helped that my family is large and ethnically & racially mixed, so whomever we’d have would look like a relative and not appear foreign no matter where they were from. We had 3 helping us cover round-the-clock. Friends of mine have used live-in, which might work out to be cheaper. Look now. Someone you know will know someone and people are always looking for their next client.
I believe staying in familiar surroundings (same bed, same bedroom, same bathroom) added to her happiness & peace. She was far easier to manage than her siblings who went into facilities and wound up being moved around a bit. Even when she couldn’t articulate needing to go to the bathroom, there was some muscle memory, as if she moved on autopilot.
Her siblings, in contrast, got depressed & agitated, had pneumonia and experienced isolation during lockdown in their facilities. They spent months in diapers. For mom, she was in pull-ups and she was managing herself; only needing to be lifted to a commode and have someone manage intimate cleaning the last week or so. You will be able to do whatever is necessary, just as your mother once did for you.
For POA & Healthcare proxy, have a back-up assigned. And get this for Dad now, too. And yourselves. My mother outlived her 2 oldest children who died after her dx of dementia. Had there not been a back-up for mom, it would have been a mess. I was knee deep in that mess b/c my sibling had no one named for himself. When he could no longer advocate for himself, Medicaid told me we could have a hearing in 30 business days and then I could be appointed, but in the meantime, we could not access his homecare benefits and I simply had to pay out of pocket. He died before the hearing ever happened. But for mom, the paperwork was all in order. We still paid for her care, she didn’t qualify for Medicaid, but we could readily access her money for everything Hospice didn’t cover.
For mom’s primary care doctor, we had a concierge practice. It was around $4000/year and they came to the house every month, available by text and responsive to phone calls. They didn’t take insurance, but could order all tests to be done at home and billed thru Medicare. This was so much easier than trying to get her into a vehicle and into a doctor’s office at a prescribed time. There will be days when you (or your dad) feel like you’re trying to direct a 5 foot toddler who has zero incentive to cooperate. One less thing to stress over is a relief. Obvs, not everyone can pay for this, but that was less than the cost of 2 weeks in my Aunt’s assisted living. Absolutely worth it to me. All told, between the aides for 16 hours/day, concierge doctor and general expenses to maintain Mom’s house, we spent just over half of what assisted living expenses would have been in a Memory care unit.
Mom lived 5 1/2 years after dx. But she wasn’t as far along as your mom sounds from what you described. Everyone’s disease will progress at a different pace. Eventually my mom lost a considerable amount of weight and she was referred for hospice. I think the tipping point was how little she was eating and the circumference of her bicep. The hospice service provided an aide for 1 hour each week. They would also provide 2 weeks respite care in a nursing home if we’d wanted it. Never used it. All the hospice agencies are different, and we could have shopped around a bit more. They’re all going to provide supplies & medications. But their other offerings vary. It’s impossible to know this beforehand. Talk to folks. Like with the aides, look now. Get references before your father is fully on-board. I’d recommend having an elder companion come in and sit with her once a week for 4 hours while Dad goes out and meets with friends or goes to the gym, runs errands. Maybe a person who comes over and does her hair? Brings a dog for her to visit?
My CavalierKingCharles/Corgi mix dog was a highlight in my mom’s day and at the nursing homes where her siblings were. An infinitely patient dog who loved everybody, he always improved the mood. Babies have a similar effect. One of our aides often brought her toddler to work and she brightened the whole house.
Mom lived on Honey-nut Cheerios and Blueberry-Pomegranate Ensure for a longtime. The former is easy for toddlers & dementia patients to eat and not choke on. The Ensure became the “house Red” and was served in a wine glass. It’s the best flavor. All the others are nasty IMO. Swallowing reflex is affected by dementia. Eventually the appetite goes, too. But before that, they don’t know how to eat some things. There may be weeks of eating pudding or applesauce or things that don’t need a lot of chewing. Dramatic drop in protein intake is the beginning of the end. This happens to all mammals at the end of a natural lifespan. They just don’t want as much to eat because they don’t need it where they’re going. They don’t show signs of being in pain or discomfort for lack of food. We kept tasty things available and spoon fed her ice cream & sorbet when she couldn’t remember how to use a spoon. But eventually her body will be ready to go. Whatever you will have done will have been exactly right. Don’t doubt yourself. Take care of you & your Dad.
