Thanks
@DianaCox As you know it is hard work caring for the elderly, made more so when we have an emotional tie to the person, and yet more so when that tie is a parent/child relationship which becomes reversed. And then have them live out of state...
It's amazing what services communities provide even though many aren't aware. (In my mother's suburb, they provided monthly housekeeping as she was legally blind from diabetic retinopathy.) How are your mother's bathroom skills? I assume these PACE aides are just for an hour or two a day? Can she be left alone for blocks of time? If not, what about advertising free room and board at a nursing school/nurses aide school in exchange for overnight monitoring, if necessary? At the very least can she act worse off than she is to get the most care? Both my parents had very high IQs and hid their dementia very well. They would have gotten help so much sooner if they'd just opened up.
Even when I first moved him, my main concern was that my father needed help in the bathroom. He was not incontinent, he simply had a very short 'warning' time (helped with elastic waist khakis) but could no longer wipe himself. Waiting for the one aide in an AL to make it to his room to wipe him was impossible. And he would freak out over this as he was fastidious to a fault. Staff does not do well with these people in the middle between fully bathroom capable and incontinent. (AL or nursing home). If someone needs bathroom assistance, they'd prefer incontinent so they can change a diaper on their schedule, not the resident's.
Note for
@hilary1617 and others considering AL/SN: Ask about staffing per shift. (Skilled nursing facilities staffing may be state regulated but better SNs exceed that amount.) Many assisted livings say "1 to 3 resident to staff ratio" but after having experience in several states with several facilities, that ratio only applies to daytime. By 8pm my father's expensive AL had ONE aide to assist 52 residents, most in wheelchairs and walkers. I called the fire chief to complain that one person could not get 52 people in wheelchairs, walkers, blind and with dementia out safely in a fire. (The FD are badass and gets things done in my experience.) He agreed it was a disaster waiting to happen but said their hands were tied as legislation has not kept up with the mutation of assisted livings from retirement homes where everyone had to be ambulatory and bathroom capable, to
unregulated quasi nursing homes. The elderly, especially with dementia, do not sleep well at night. They need as much staff then as they do during the day. Yet they hold on to the lower nighttime staff ratio to save money, I believe because we aren't there as witnesses -- the same reason the food is better at lunch when management and family may be there and abysmal at dinner. Also at skilled nursing homes, medicines can be administered ±Half hour; at ALs, medicines may be administered by as long as ±One hour. This can be critical. If you take meds every 3 hours as Parkinson's patients do, at an AL you could get meds an hour apart causing dyskinesia or as long as 2 hours too late resulting in tremors and rigidity. One particularly wretched day for my father, I learned he was given Noon med at 1pm; 3pm med an hour later at 2pm resulting in him grimacing wildly and with "tics"; 6pm med 5 hours later at 7pm and he was like a stone barely able to move.
Sorry you were BOTH denied for LTC. What reasons did they give? I'm curious as to whether DS would make one ineligible. We should be a BARGAIN. Yes it may take more services to wrangle nutritional needs, which no facility will figure out, so we'll die faster and the insurance company saves money.
My father's LTC policy was a godsend -- but he only lived to use two years of the four year policy. If you are unfamiliar, these policies generally only provide monthly reimbursement for a period of 4 years. My father's was for a maximum of $6,000 a month. His AL with privately-hired live-in aide was about $5,500 but when he was moved to a nursing home the last 4 months of his life, it was over the $6,000 max and we had to make up the difference, even though the insurance company had "made" $500 a month on him for 20 months.
My husband and I applied for LTC. Two weeks before the nurse phone eval, while talking on the cell while walking in 3' heels, I tripped over the dog and broke my ring finger. At only age 59 I was denied based on my "history of fractures" -- my "history" consisting of a 1/8" crack in a finger, for crissakes, fully healed by the time the denial came in. Had the damn finger been amputated instead of broken, I would have been accepted! They make it harder for women to be accepted because men don;t often use most of their policies as the wife takes care of him at home for as long as possible. (Look at the data: most LTC policies are only used for 2 years before person dies.) However women always use their policies b/c they've either outlived their husband or the husband doesn't know how to take care of her -- and b/c they live longer, they use all or most of the policy's funds. Anyway, when I applied my state had gender neutral rules but went to gender specific policies 4 months later -- women now pay more for the same policy as a man. Had I reapplied and been accepted, my policy would have been 2x as expensive as my husband -- and he's 4 years older. (He was approved.) Now my LTC policy is a bottle of vodka, a gun and a rowboat into Lake Erie.
