The Uneven Progression of Dementia

It's hard to write this blog in such a way that it is not a complete downer.  The topic does not lend itself to uplifting emotions since much of what I need to talk about is watching my mother's decline and making a decision, if necessary, about her move to a facility where she can get constant care.  I think she could be at the stage where an assisted living situation is better for her, but I am not sure.  As she declines, I keep adjusting to her new state and I have no objectivity.  She is my mother.

Today was shower and shampoo day.  Her PCA told me that those suffering with dementia hate showers and getting their hair wet.  I find that interesting because if I wash her hair over the sink, or if she goes to the salon for a shampoo and hair cut, there is no problem.  But she absolutely hates showers and shampoos in the shower.  Today I asked her to sit down and cover her face so she wouldn't get water in her eyes and nose, thinking this is what bothers her.  Apparently not because she decided she wasn't going to have a shower and tried to leave.  I am not big, but definitely big enough to stop her from leaving.  So, I took the hose got her hair wet quickly and shampooed it and then rinsed.  For some reason, she tolerated it better than I expected.  Then she cleaned the rest of her body and actually was quite cooperative and willing to do that.

I don't understand this disease. 

I took out clean pajamas which I have been changing every day that she has been at home convalescing. Once she was dressed in clean pajamas, she started to get in bed.  I stopped her because I had made her tea and I wanted her hair dry.  So we got out the hair dryer.  While I dried her hair she moaned and said "Oh God", "Oh God", "Oh God" continuously. 

This is how she has been responding to absolutely everything concerning her personal care lately.   Getting up for breakfast, cleaning herself after using the toilet, getting dressed, getting undressed, climbing into bed.  The only thing that doesn't elicit that response is eating and watching TV.  Once she is at FRA Senior Day Care Center, I notice she doesn't do this at all.  Once she is ready for the world and among friends, then she is able to cope, but it is getting ready and then changing clothes once home that seems to stretch her. 

I don't understand this disease.  What should be simple and familiar has the opposite effect on her than her social world at FRA.

I've also noticed each time she has been ill, that the characteristics of her dementia are worse.  Illness adds a level of stress that totally overwhelms her.  She has slept a lot while home recuperating.  She is probably up no more than 1/4 of the day.  Most certainly, much of that is her aged body healing, but when well, she will sleep more on the weekends than during the week.

At FRA, she will manage the entire day.  True, she comes homes, eats, and then wants to go to bed immediately, but still she is active and doing things for nearly 12 hours.  The stimulation of the Day Care Center is critical for keeping her engaged in living. 

I can't imagine what it would be like for people like my mom if they don't have the quality of care she receives during the day.