So sorry @ams5796
Condolences and blessings @ams5796
Condolences @ams5796 .
@ams5796 Sending you virtual hugs, energy and support. These days are their own special very hard. Condolences.
Our thoughts are with you, @ams5796.
@ams5796 I’m glad her passing was peaceful. I have no doubt that the hospice nurse was right: she knew she was surrounded by love. You are a wonderful and loving daughter. Be gentle with yourself. I’m sending thoughts of love and peace and comfort.
More hugs @ams5796
So sorry for your loss, @ams5796.
I am sorry for your loss @ams5796 . I’m sure your mother felt your presence.
@ams5796, condolences on your loss, I’m glad it was so peaceful
@ams5796 Sorry for your loss
We just booked a flight to see H’s aunt who is 96 years old, plus see others we know in the area. She’s getting frailer and frailer but still remarkably sharp.
@ams5796, I am so sorry for your loss and hope that your mother’s memory is a blessing to all. She was clearly loved.
I realize I really don’t know as much about senior living arrangements as I need to. I do not think my mom and dad can live successfully their ALF with both having cognitive deficits. I talked with the OT who is working with mom and mom is just not “patterning in” to learn basic skills. She does not remember to wear Depends, does not know to use the toilet on her own, does not know what to do when her Depends is wet. This means she needs to be “timed toilette” every 2 hours.
She also can’t just brush her teeth when told; she is not “scanning the usual field” to look for and see her toothbrush. I guess being told to brush teeth doesn’t really register in her stroke brain, until someone actually hands her a toothbrush ready to use.
So, their current place has a small ALF but I don’t think there are many residents who are similar to my parents and not a lot to do. I think I have to look at other places but I really shudder to think about moving them. The other thing would be to continue to pay private duty aides but that adds up and my parents are starting to chafe at being “babysat.”
Both of them don’t think they have any problems, nor do they think the other one does, even when confronted with evidence like mom walking outside in the freezing cold. Dad did not think she was confused.
I have moved them twice already and each time I thought “this is it, they can stay here forever” and I locked their prices in. I did not realize memory care would be more $$ the the rate lock in the ALF.
The really sad thing is they would both hate to be spending this money this way and they would be mortified to be needing so much help.
@surfcity - Just a heads up that even in memory care, sometimes private duty care is needed. I would say about 1/3 of the residents at my mom’s facility have private caregivers because they have so many medical needs.
You may want to look for a facility that has all levels of care, including skilled nursing if it’s ever needed.
I hope you can find the right fit for your parents.
@surfcity I found out that finding a facility for both parents was challenging. Neither one of my parents ever recognized the dementia in the other spouse. Though they did notice it in their neighbors.
At the small ALF, how do the other residents differ? What would you like for them to be doing that they cannot do in the ALF? Your parents are pretty unique and I think it would be hard to find a place with residents like your parents. I think the most important calculation is if they can meet your parent’s needs. There are ways to bring in activities.
@GTalum It seems like most of the residents have physical challenges. Most use walkers, some in wheelchairs etc. And I think some of them need help with showering, maybe dressing etc. They don’t seem to have the level of cognitive deficiency my folks have. I definitely see people who have memory issues, but they just don’t remember what time dinner is, or what the activity is, and can be cued or guided by staff.
My mom apparently needs a bit of help in the morning to get up, dressed, hygiene and meds and breakfast. The ALF DON told me they cannot support having a staff person on her for 1+ hours.
During the day, they are in their apartment and both are just confused enough that they get each other confused. Dad will say, When is dinner? Mom can no longer answer his questions and she doesn’t know. He gets suspicious that they will not get dinner and he has no money, cannot call for a pizza deliver 
and they get themselves all worked up.
Mom is also hiding things which is frustrating. I know it is common with brain problems but Dad thinks people are stealing from him but mom is actually putting things in a “safe place” that I find later.
I am thinking that a larger, more robust Memory Care place will have staff used to dealing with residents with these issues and hopefully have more activities.
But I am exhausted at the thought of moving them AGAIN to somewhere where they will not know anyone (they are already confused about where they are) and the expense terrifies me. I thought I had set up everything in an affordable way, had no idea that there could be situations that are even MORE expensive.
@surfcity - Just from reading these posts, it does sounds like your parents may benefit from memory care at the skilled nursing care level (SNF); what used to be called nursing homes. This level of care allows for all medical needs to be tended, a much higher staff to resident ratio and if labeled memory care, usually involves the opportunity to participate in structured activities at a range of ability levels. My father went from AL to such a place and it was the best answer all around. Of course, YMMV. When the head nurse said that once he was there, they had him for the duration, whatever the future might bring, the relief was huge. No waiting for the other shoe to drop, no crisis move to whatever was available at the time, and he was able to participate in social activities, once the daily prompts were added to the mix and opportunities were built-in. The expertise of the staff allowed his needs across all parameters, including socially, to be addressed. It is a quality place and that, of course, is critical.
It is helpful to fully understand level of care and financial implications. While only certain specific, medically licensed ALs in my state may grant subsidies for providing care to low income residents, for example, skilled nursing facility care is almost always covered by Medicaid if funds run out. This takes some of the fear out of this move. While some people hire aides even at the skilled nursing level, at an excellent facility, this is likely optional. These facts can change the financial equation significantly. I had my mother with 12- 24 hour aides in a quality, medical AL for about a year (so she could be near father during her terminal illness). The cost surpassed the payment to the the skilled nursing facility. Also, the coordination of care is often simpler with a nursing home and many medical care options are available on-site, sparing frail elders the challenge of transport to outside providers.
I hated to move my father (and it was within the same excellent continuing care facility he knew) and he was with it enough to note that some residents there were “very confused” when he was about to enter. I explained that just like AL, residents all had different needs, … I was fortunate that he trusted me with decision-making and we never looked back (the “blessing” of memory loss). I prioritized making as few moves as possible, noting how easy it was to be a step or two behind my father’s decline. In a routine situation, he could appear “better” than he was. Change one thing and I could see that he like a duck on the surface of pond. He looked tranquil, but he had to paddle too hard.
Good luck with all of this. They are lucky to have you in their corner.
Wanted to add that it is often helpful to confer with a geriatric specialist or elder law attorney when one reaches such a fork in the road. There are sometimes ways to optimize financial decisions and consider the total picture that would not be obvious otherwise.
@travelnut thank you for your good comments. This is difficult for me because it is so nebulous. When I just had a lot of concrete tasks to do for my parents, it was a lot to juggle but I knew what I had to do: pick up laundry once a week, pay bills, drive to appointments, manage paperwork, etc.
Now I don’t know what is going to happen next. Sometimes I visit and everything is great. Sometimes I walk into a problem.
Every time the phone rings, my husband and I are jump. No one calls except parent problems or spammers and we always anticipate the worst!
My mom has been walking on the edge of this cliff for 6 weeks now, and it’s still not clear whether she is going to fall off the edge or get back to solid ground. Or keep oscillating.
She is doing better with PT, but the OT is needed (according to me) but not authorized by the PT director who depending on the time of day either thinks it isn’t needed (she is capable of doing everything herself, clearly not the case) or that my mother won’t cooperate with it (was true 4-5 weeks ago when she was physically a wreck but no longer the case). But without the right reports and forms regarding PT, the treatment can’t continue.
And everyone who knows her and visits raves about how much better she looks than she did last month, which is true. But the PT director thinks no more progress is possible.
And it could all just not matter because it may never be possible to get enough of the heart medicine and diuretics to keep her from filling up with fluid without dehydrating her and shutting down her kidneys again.
So they will recommend release to a residential nursing home environment, not Skilled Nursing, with possible PT 3 times per week. And we will protest and insist (again) on continuing therapy. And who knows which way it will go.
And it’s a CCRC, and there’s a waiting list for independent living apartments, and she has a great 2 bedroom one, so there is that pressure too.
And her mind is back to 100%, or maybe 90% of what she was which is 120% of most people you’ll meet on the street. So she knows exactly what is happening and what the release from the rehab wing to the residential wing means. And is crushed and frustrated with her body. She wants it to heal or quit, not this slow fade.
Anyway, thanks for the place to rant. A lot that I’ve learned here has helped me understand the medicare billing talk that’s going on.