Additional ‘care’ still needed in memory care?

jenjohnston06

My father is likely entering ‘early-late’ stage. He is still mobile with a walker but increasingly unsteady with difficulty getting on his feet. He can get to and from the bathroom and is primarily continent during the day though he can often have accidents. Incontinent during the night. But the biggest change I’ve noted of late is changes in appetite drive and his ability to get adequate nutritional intake. He has lost 24 pounds in the last three months.

We moved him from assisted-living into memory care about five months ago. It is a new facility (opened just 10 months ago). Rooms, common spaces, etc., are beautiful. Some of the staff are exceptional. Most generally caring but certainly not highly trained professionals. I don’t know the exact staffing ratio, but feel the need to find out. Residents in this particular facility are likely on the higher functioning/earlier stages on the disease spectrum perhaps because it’s a new facility. Of approximately 25 residents, only three are in wheelchairs. I vaguely remember the marketing person telling us that as needs become more acute, staffing levels will change.

As I read more about what lies ahead with later stage Alzheimer’s, and understand what optimal care taking would look like, I’m begin to see the gaps in what he’s currently getting and most significantly what he will need as the disease progresses. No one is going to sit next to him for 15 minutes to work on getting him to down a nutritional smoothie (the food is bad there), no one is going to help brush his teeth. It is hard to imagine him being repositioned, stretched and moved every two hours as he becomes less mobile.

So my question to the group – Did anyone pay for private caregiving to augment what they don’t get in these institutional memory care units? Were your loved ones needs met all the way until end of life in MC? Any tips or tricks for ensuring their needs were met in the later stages?

M1

Hi Jen and welcome to the forum. This has been an issue for us as well; my partner has been in memory care for over two years and in her current facility (which is very well staffed and regarded) for about 15-16 months. She is a loner, does not like group activities or being parked in common areas, has had increasing balance problems and multliple falls, and cannot/will not use a walker. She fell and fractured her maxilla in early June with a terrible open head wound as well. She was put on hospice at that time, and now is pretty much room- and bed-bound; she is still partially continent and only gets up to go to the bathroom.

We hired full-time sitters for about two weeks after the last fall. This was very frustrating to her; she is resistant to most attempts to help (will not let anyone besides me physically assist her, pretty much) and many times threw the sitters out of her room. It's also extremely expensive; $37/hour on top of what we're already paying for memory care. So after two weeks we let it go. The facility will not allow cameras or bed monitors in the room; they will allow motion sensors, but these are very disruptive and almost too sensitive. So we are just letting things go. They have found her on the floor twice during the night, but no further injuries yet. I think it's just a matter of time.

She has pretty much stopped getting out of bed except to go to the bathroom; she does occasionally putter around her room, which I know because I find things moved around—-every time I am there she is in bed, and she sleeps the vast majority of the time. She will not leave her room for meals. I am going every day to feed her lunch (she has pretty much ceased any attempt to feed herself), so I know she is getting at least one meal a day. We are fortunate in that the food is generally good at this facility.

Going daily is not trivial, as I have a 45-minute trip each way. Last month she had lost 7 lbs. and we have not weighed again yet. Certainly 24 lbs. is a big red flag for being on the downslope. We gave up regular toothbrushing years ago. Sometimes i can get her to brush her teeth when we clean her up, which is maybe once a week or every ten days or so. She won't let anyone but me change her clothes.

Even if you put him on hospice (which he might qualify for by virtue of the weight loss), it will not buy you extra monitoring. It will gain you an adjustable hospital bed, which has been a boon, and as needed medications for pain and agitation. That has been the biggest advantage so far. We're on kind of a death vigil at this point, but I have no idea if it is going to be long or short. I fear long. But in your shoes I would definitely discuss whether a hospice evaluation is warranted.