Frustrations

Mom writes:

I keep thinking about others, all of a sudden, becoming "hyper" about Lyn's symptom's.  The team at UNM, I'm willing to bet, will decide she doesn't have dementia or sundowner's.  They kept saying "Atypical" symptoms.  They seemed to be hung-up on the fact that here at home she didn't exhibit sundowners.  No, but some day she will.  Just because she doesn't do what is "normal" for most dementia patients doesn't mean she doesn't have it.  The medical establishment HATES to think that someone doesn't fall into the box they have established for a condition.

But all this is like a re-run for me.  The last couple years of mother's life was filled with dementia & sundowner's.  She was fine for one minute then some place else the next.  It wasn't until after about 4-5 years that she exhibited signs of sundowners at home.

  One evening we were coming home from a friend's house.  Mom had lived in Albuquerque most of her life.  She and Dad moved back here in 1946 and never left, living in the same home since 1947.  The route I was taking was one she and I had used for MANY years.  I was driving west and she insisted we were going north and would end up in Santa Fe.  I promised her we would be home within 10 minutes and I was going west.  She said she doubted it but as long as I knew that when we stopped she was going to say "I told you so."  Ten minutes later, when I pulled up to the gate and got out and opened it, she still insisted we were some other place.  I got her into the house, into her room and all was well.  No, I didn't say "told you so."   She was fine, knew where she was and insisted I had turned around "some place".  I knew when to keep quiet.

I see things like this with Lyn.  Perhaps it is Atypical.  I have said for 40 years that she is herself.  She has challenges but was never put in a cubbyhole.  Just because "most" people do something one way doesn't mean they all will.  Just because her sundowner's hasn't kicked in at home doesn't mean it won't.  I believe it will - one day.  

I am frustrated with the medical establishment, with a case manager who now seems to be back-peddling on all this.  I'm frustrated!  Maybe it's just that she "didn't read that chapter in the medical books" as a pediatrician once told me.  She's just Lyn.