I need a perspective from caregivers who thought it best for Mom or Dad to move to an assisted living facility or nursing home.

Hi Carol - We have corresponded before but for others looking for perspective, I will share my reasons for thinking my mother should move from her condo to an independent living apartment:
1. Health status - Extremely limited mobility, cannot exit her current home without assistance. Manuvers in the home with walker but due to floor plan cannot go everywhere so she clings to countertops, furniture, towel bars. Has occassional incontinence which she cannot clean up herself. Has no access to a shower. Has macular degeneration which is getting worse, CHF, IBS. Cannot cook or clean home by herself. Cannot keep food in cupboards (as she cannot reach) so leaves all non perishables on counter or floor and cannot see insect infestations or mold. Emotionally, she is very negative, a constant stream of complaints and a victim mentality.
2) Status of home - all accomodations that can be made have been made. She is a hoarder so the home has to constantly be cleaned out to maintain access. There are steps into the home and no room for a ramp (small condo complex)and the railings that were installed are no longer enough to get in and out of the house safely. (She uses a wheelchair when out and needs to be assisted to get out.) There is a small yard that must be maintained.
3) Social - she gets out for a couple hours a week, has phone visits with her kids and 2 hr. home health aide visits three times weekly. Mostly watches TV and complains nothing is on. I am the only child in the area and she is mad at me so she will not let me take her out.
4) Financial - She will not pay for more than 6 hrs a week of in home help and she has limited financial resources.
5) Family - no one in the family wants her to live with them
6) And the biggest reason of all is that, IMO, it's the best way to AVOID ending up a in a nursing home. To me, the WORST place to be is a nursing home (unless there really are 24/7 skilled nursing needs or dementia that causes unsafe behavior). A move to a living arrangement with better access, peer pressure to eat better, staff available 24/7 in an emergency, social activities available (she used to be very social), discounted rates on home health aides in case she absolutely needs more care, acceptance of Medicaid Waiver payments so she could age in place if she runs out of money - all these things add up to the most independent living for the longest possible duration at the most affordable cost.

If your parents are of relatively sound mind (ie not a danger to themselves or others) and able to somewhat manage for themselves, then a nursing home would be a very bleak existence. Assisted Living is very expensive but I don't know what you are spending now for 24/7 care in the home or what your parents' financial resources are. Some assisted living places are very nice, have opportunities for social interaction and might compare favorably to what is being spent on 24 hr care in the home. However, with Assisted Living, you have to consider that most will not accept Medicaid waiver payments so should your parents run out of money they might be forced into a nursing home situation before they are ready. Assisted Living can also evict your parents for health status. Because they are licensed as more of a medical facility, most have "levels of care" (with increasing costs). The "level of care" is their discretion, not yours. Some types of care are not supportable, so they can evict you. It is not necessarily a place where your parents can stay until they die. Independent Living apartments are not licensed as medical facilities. They cannot evict you for health status, just like an apartment complex could not discriminate for health status. (unless you pose a risk to other tenants). You can have in home care in an Independent Living apartment in the same way you have in home care in your own home and most accept Medicaid Waiver. If your dad is a veteran, you can also get @ $1000 a month in assistance with the living costs of Independent Living.

As you can see, each case is likely individual but should consider their safety and health (including emotional health and need for social interaction), their financial resources and how long their resources will last in each setting, and family resources available to assist. It is great that even though you and your sister are not in agreement, your family communication is open enough that you have agreed to meet with a third party to do some long term planning in the best interests of your parents. There is a lot of space in between the family home and a nursing home that might meet your parents' needs for independence and their financial picture. I wish you all the best in finding the right solution.

Carol, have you ever checked into adult foster care? We had really good luck with the one we chose for my father-in-law in the months before he died. His wife, my mother-in-law had to move into asst living after he died because he was the one helping her. She is also legally blind because of macular degeneration, and she has dementia. Her memory is about as long as a gnat's eyebrow, so there wasn't really any choice. She was REALLY distraught having to go, but all the doctors she saw said it was time. Now she's safe and sound, and when I'm out running around doing dumb stuff I take her along with me which she loves. There are two of us as POA, but I'm the only one with the checkbook, so I pay her bills etc. Anyway, check into adult foster care if you can. It's usually cheaper, and they get more one on one care. Well that's my story, good luck to ya.