Skilled Nursing challenges for dementia patient

quartlow2 · August 2021

Mom passed away in June but this is an issue that needs addressing. I believe that Mom's "dementia" was mostly aphasia. She was not officially diagnosed. She could read out loud accurately but she couldn't string words together, on her own, to make a meaningful sentence. I believe our speech was probably garbled by her hearing in the same way. She seemed to think pretty clearly but couldn't express what she needed. Her memory was good. When we listened to her ramblings we could eventually pick out a subject and then guess from there. Hand motions and facial expressions (without masks) were more effective. She also had trouble with numbers, calendars and clocks; not knowing what was higher\lower, earlier\later, etc.

After a fall landed my Mom in the hospital, they recommended Skilled Nursing (SN) for physical therapy (PT). It was hard for us (husband of 69 years and 3 children) to know if\where she hurt and how much. Mom was VERY active, walking\caring for herself, etc, before the fall. I asked for SN references from her Memory Care unit. The first 2 we talked to said they couldn't accommodate her with her dementia. The third still had a fair rating but I was beginning to get concerned about the level of care she'd get. The hospital talked to them and they accepted Mom without even talking to me. I'm guessing I gave the first 2 too much information about Mom's activity level before the fall? I think the hospital was pressured to move her out.

She was making some progress in SN and they were planning her discharge. But communication with the facility was frustrating to non-existent. MC couldn't get the records from SN to know if they could care for her. I live out of state. So the first time I saw her was on the 15th day. She didn't recognize me fully gowned and masked per COVID restrictions. My observation was that she seemed to be in pain and cold. I expected the aids\nurses to know more about that than me. So I asked and told them what I thought. They brought a warm blanket and I think they gave her a pain med after I left. I was also there to be with my Dad, who was living in MC with Mom because they couldn't stand to be separated. Dad was in AL but was starting to have Parkinson's dementia, so he technically qualified for MC also. Anyway, I couldn't be with either of them constantly but I visited each one each day. Nor could my brother, who lives nearby, but he has a fulltime job and active family. We are dependent on the "experts" to know more about dementia than we do!

On the 18th day, SN called EMS for my Mom. She was hypothermic, severely dehydrated and had a UTI from ecoli.