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Should we try harder to move Mom?
I am new to this group. this is kind of long as I provide background.
Welcome to the board, but sorry you are also dealing with this terrible disease.
Is it possible to set up a camera in her room, like Amazon Echo, so you or your sisters can drop in and see what’s going on at night?
I am sorry you guys are all going through this. I am pretty new to all of this as well and will just be moving my mom into MC at the end of this week.
Have you been to visit? How are the staff with the residents? Do you like where she is now? Does the staff seem to understand how to work with a PWD? Just asking these questions since I think they would be important in deciding. I could see how it may not matter where she lived. She may just be unhappy regardless, but I do wonder if the staff are trained at working with PWD then I would think this could make a huge difference. ….But night time may be much more difficult. Again just throwing questions out in case that helps.
Best of wishes to you all.
To be honest, it makes me wonder when a facility decides to put someone in a wheelchair who's physically able to climb through a window to elope. The weight loss would also be a concern to me. I've actually witnessed first hand facilities that stick people in wheelchairs and use a transfer belt to restrain them so the PWD can't wander around all the time. I've also seen patients who've had food placed in front of them and abruptly removed after 40 minutes whether they've taken a bite or not. When asked, Admins will claim they just don't have the staff to encourage eating and suggest that a family member come in to assist with every meal if they are concerned. We had to move my MIL out of one such facility.
It may not make a whit of difference in your mom's complaining or exit seeking, but if it was my mom, I'd try to find a better facility for her. If it meant a longer distance to travel for visits, I'd be comfortable visiting less often if I had confidence that she was getting a little more attentive and compassionate care.
To be honest, it makes me wonder when a facility decides to put someone in a wheelchair who's physically able to climb through a window to elope. Normally I would agree with you. But I have a friend whose docile little mother used to shuffle through the house slowly holding onto the furniture or handrails her DD installed for her. My friend used a wheelchair to take her mom for a daily walking on the trails near their home and on any trip to the doctor or errands. But at night she had to alarm the doors because mom became an escape artist who moved swiftly and could disappear into the darkness on their unlit rural road before DD could make it down the stairs. It was as if the moon gave her super-human powers. Debdg-The weight loss and UTIs would concern me. A loss of 10% is corelated with a much higher rate of death in the next 6 months. Has the UTI been effectively treated? Was a culture done to make certain she is on the correct abx and are they taking proactive steps in terms of hygiene to prevent a recurrence? The UTIs may be impacting her ability to adjust.IMO, a PWD in the mid and early late stages is best cared for in a MCF with dementia-trained staff and dementia-informed activities. Decor is immaterial so long as the place and the residents are clean and cared for. A little "Lived-in" looking is fine. At dad's MCF, staff were very tuned into whether a resident was eating and would quickly replace a meal that didn't appeal with something else if the resident wasn't eating.HB
I hesitate to suggest you can do better without knowing more specifics, but it does seem possible. What you are describing was not the norm at the two MCF we had my mom at in middle and end stages. They were very on top of eating, would prompt and assist if someone wasn't figuring it out and hand feed purees in the later stages. The staff were trained in and understood dementia well. There were dementia informed activities let by activities staff during the day that mom could handle. We had care conferences routinely to discuss how she was doing and see if any changes were needed in her care. Do you think she needed to be placed in a wheelchair? If a family member sits with her at a meal to encourage her does she do better?
I will say that UTIs and falls happen even at the best of care facilities. In the later stages falls are nearly inevitable, no matter the PWD lives at home or a facility. You only have to take your eyes off them for a minute. And once they are in Depends the UTIs just seem to keep coming. Make sure each one is cultured to find the right antibiotic. I would not assume either is necessarily indicative of poor care. Certainly poor care could lead to an unnecessary increase in them. It's hard to say on that.
I moved my mother in the later stages. The first facility was great in the beginning but then had some changes during covid and I started to wonder if it was still a good fit for her. She was sitting around and dozing in front of the TV way more than before without many activities and the staff turnover was so fast I was suspicious. My gut told me a move was in order. I took the plunge and was very happy I did. The second place had her up and moving more. She stopped losing weight and got a bit stronger and was more alert from the social interactions and activities. I was so glad I did it. I gave her 7 really great months there before she passed that I almost didn't bother with. She was late stage 6 at the time of the move and transitioned so smoothly. I was pleasantly shocked she settled right in. I think part of it was the staff at the new place were so skilled and nice, and part that she was so far along she didn't really notice the surroundings were new.
If you can't get the weight loss piece figured out you might have her evaluated for hospice. That kind of weight loss alone may qualify her with the dementia diagnosis and they are an added layer of service and an extra nurse to help with care decisions who is not employed by the facility. Good luck. None of this is ever easy.
I have visited a few times staying several hours each day. The day staff seem to be caring and thoughtful. I have no idea about overnight.
I have not received communication about the medical care, and I don’t think the sister who is the primary contact has gotten meaningful communication either.
The best way to know if there is neglect or abuse is to have eyes on the patient, as in frequent visits. Your sisters are visiting daily. Would they be able to do so if she were moved? Does she eat for your sisters as if she’s hungry or does she seem full? Weight loss happens as dementia progresses. Sundowning happens late afternoon and into the evening. Is it possible that your mom is sundowning and that’s why she doesn’t like the place at night?
Currently every place is short staffed. Is the possible new place better staffed? Do they actually have more activities? Or are they just a newer prettier more expensive facility!
I agree having visitors present likely improves attention and care.
Mom seemed to eat well when I was there, sharing my bag lunch and then eating some or all of the meal the home provided. So I was surprised by the weight loss.
Unfortunately there is no designated MCF closer to my sisters. There is a nursing home closer and more highly regarded but it doesn’t have enough staff for them to fill all their beds, hence the waiting list.
Fellow quilter, quilting really helps with stress management.
Yes, it definitely seems like sundowning. Worse some days than others.