So many questions! Ups and downs, rapid decline, toileting issues, when to move....

@lauraleaf23

Hi and welcome. I am sorry for your need to be here but pleased you found this place.

You said:

1. She has friends, familiar faces and caring workers in her AL place. As dementia progresses her friends will drift away. Some because of their own health issues but most because interacting with a PWD is difficult and not rewarding.
2. She has a routine and it feels like home As PWD progress, former routines will need to change. Many will become confused about "home" as they progress into stage 6. At that point many will be begging to "go home" even if they're in the actual building in which they've lived for 50+ years. At this point "home" is more of a feeling of safety without confusion than a place.
3. She has lived in the same city for 43 years- if she were to move closer it is not as beautiful and I think she may be disoriented. This would not concern me. Most PWD by stage 6 aren't actually out in public very much so which city doesn't really matter. The other piece to this is that with a decline in cognition, changes in visual processing and a tendency to kind of time travel the PWD weren't oriented to location. I moved my dad from his beloved house in FL to suburban Philly and when he looked out he thought he saw palm trees and fretted over tropical storms. Auntie initially believed her lovely MCF was the married student housing at Rutgers circa 1949 and later described the view from her room as overlooking the ocean and rocks and not the stand of pines that the rest of us saw.
4. I am her #1 support and caretaker. If she is closer I can be there more often and it will take the stress of travel off of me. This is the number one reason to move her and trumps any other concerns you might have. As the disease progresses there is a real likelihood that she could have a fall and be sent to the ER to be checked out. When a facility sends a person to the ER, they do not send a caregiver with the resident which could result in mom alone in an ER unable to advocated for herself. You not only need her closer, ideally you want to be able to get to that ER before she does. As her POA it's best you are there for her.
5. Should we do memory care or AL? Board and care? I went through this with my dad, but he was at home with my mom until he couldn't be, then we did a board and care which seemed to hasten his decline because they just kept him in a wheelchair all day (he was ambulatory before) and had almost no stimulation. This was extra heartbreaking to see. When I was in your shoes, I chose a MCF. My cousin put her mom with dementia in an AL not realizing how much scaffolding she was providing before the move. It was a disaster. My aunt couldn't track time and missed meals, she couldn't keep up with the activities and conversations with the other residents and became more isolated. A few of the ladies who didn't care to interact with a PWD were outright mean about it. Care at this place was a daily well check and medication distribution-- my aunt had a fall and wasn't discovered for hours. She suffered a hip fracture and went downhill from there rapidly. I don't know if Board & Care is a thing where I live anymore. My grandmother was in one years ago that was a real dump; my cousin moved her within the month. From what I hear though, I would prefer a MCF where staff are trained in dementia care and all aspects of the community are dementia-informed from the design of the building to the activities offered.--HB

I'm sorry for your experience with dad. That is heart breaking.

For a PWD I lean towards a high quality MCF.

The Board & Care my grandmother was in sounds similar. On paper it sounded appealing-- a more "homelike" setting "in the community" with a similar staff to resident ratio. In reality, the ratio was seldom as presented as the caregivers were also charged with laundry, cleaning tasks and meal prep so effectively there was one person tending to care a lot of the time.

Dad's MCF was designed with "neighborhood" that each had a dining room, kitchen and living room area for 10 residents at most with 2-3 hands on caregivers from 7am-11pm plus the DON during the day. Schedules were set so that there was no "weekend B-team" meaning dad always had someone who knew him and vice versa. This place only did MC; staff was not only well trained in dementia-informed care they were working there by choice. My aunt's MCF was very good, but it was part of a CCRC and they did sometimes have floaters or newbies who took the MC job in hopes of transferring to a different unit.

They had activities daily and a recreational therapist who filled the role of activities director. She offered all manner of coffee groups, daily walks and exercise, music programs (live ensembles from area schools or a DJ for the monthly family party), crafts, games, and movie matinees. When she learned dad liked golf, she dug up a putting practice set for him and a few others.

HB

@lauraleaf23

I'm in suburban Philadelphia.

Dad was in a Promedica Company "Arden Courts Memory Care". They have facilities in several states.

Locations - Arden Courts (arden-courts.org)

I live in an area well served by these sorts of places. I passed a dozen MCFs on my drive to dad's place and they've built 2 more since he died. I toured a dozen places before placing. A few of the fancier ones didn't take Medicaid if dad outlived his assets and they tended to be the kinds of places that cherry-picked for the pleasantly befuddled. My sweet auntie would have been a good fit for such a place, but dad probably wouldn't have gotten past the interview.

Dad's place was less fancy- no crystal chandeliers or 9' case clocks there. It was clean and nice, but it had a more lived-in patina to the public areas as a home's family room would have. Staff was well trained and paid a bit more than other places so retention was better. The place was very accommodating of staff-- the DON would them pick them up if it snowed because many of the aides didn't like to drive in the snow and they even allowed school aged kids to come in on school holidays if childcare was a problem. Dad loved when the kiddos came.

Checking ratings can be hard post-COVID. A number of places near me were sold or otherwise rebranded. This is probably related to distance themselves from the numbers of people associated with the facility that died in the pandemic. Another thing that has happened near me is that a facility might be sold by the parent company after an incident like you described-- they sell it to a new company and rebrand it often with new staff. There's one very nice facility near my doctor's office that has been sold and rebranded 3 times in the last 12 years.

Regarding the outdoor space. Depending on where you live, this may be less of a deal-breaker than you would know. Dad's was a pretty large backyard like space-- I'd guess maybe 75 x 25 yds square. There were some raised planters for those interested in gardening as an activity and they decorated with lights at Christmas. His room and the dining room overlooked this space which was nice. It wasn't always available to residents. If it was too cold or too hot or rainy/snow-covered it was closed. On a perfect day weather-wise the doors might be open but if a jacket was needed, residents needed to ask to get the door opened so staff could be sure they were dressed appropriately. There were usually hourly well checks during the day, but if residents were outside, they needed to have eyes-on every 20 minutes which meant the garden wasn't open during meals or while aides were getting residents ready for the day.

HB