What It's Meant For Us

After hearing about Pat Head Summitt's diagnosis of early-onset dementia last week I thought I'd share a little bit about my own family's experience in dealing with dementia.

   When my mother was first diagnosed with Multiple Sclerosis in 1993 she had a whole host of symptoms.  Fatigue, nerve pain, spasticity, loss of balance and slurred speech were her most noticable problems.  She was also having some trouble with her memory, something that her neurologist defined as cognative impairment, but given all of the other symptoms, her memory (or lack thereof) wasn't the focus of our attention at the time.  She compensated for her cognative impairment pretty well for a number of years. She carried a notebook with her and made lists upon lists of things she needed to do and she hung sticky notes up all over the house.  She's now closing in on twenty years of living with her MS diagnosis and at this point her once defined "cognative impairment" is now officially "dementia". It's her most problematic MS symptom.  I wrote the following entry on her Caringbridge site in April of 2010.  ________________________________________________________________

One of the interesting things they are doing with my mom at Stallworth is working on a memory book.  This isn't a scrapbooking kind of thing but a very utilitarian binder that contains an April calendar page and a copy of her daily schedule including the names of the people she met and worked with that day. When I was there yesterday I noticed that there were sheets of blank notebook paper in the back so I decided to write her a note to let her know that I had been there and where we all were and when we would be back.  Today when I went in I found that her therapist had put my letter in the binder which I guess means she likes the fact that I wrote it. Sarah was with me today so in addition to leaving her a note telling her that we'd had dinner with her and that I would be there for lunch tomorrow, Sarah left lots of hearts and butterflies and "I love you's" all over the page.

   Yesterday was a really good day.  My mom was more alert and focused than I have seen her in a very long time.  We had a conversation about the fact that my dad has gone to Knoxville for a few days to take care of a some things and that she is in a rehabilitation facility and not a nursing home.  She said she had noticed that some of the other patients seemed much younger than her and it made sense to her that they are all there recovering from some type of automobile accident, just like she is. Like I said, it was a good day.

    Today was a more typical day.  She was very tired this afternoon and her responses to many of my questions and attempts to converse with her were flat, for lack of a better word.  She had more trouble focusing. She has always had good days and bad days (cognatively speaking) and in the last year or so she has fallen into a pattern of one good day followed by several down days - it's just that yesterday's "good" was off the charts for her and as hard as I tried to not let it happen I was hopeful.   I wanted her to smile at me and reach her hand out to me when I walked in the room today like she did yesterday and she didn't. I'm grateful that I had yesterday though because we really did have a pretty good afternoon.

     As for my mom, when anyone asks her how she's doing she always says she's doing fine.  Always.  The answer never changes.  And I guess that's kind of where my head is tonight and really has been all day because she's not fine, not really. She's in a wonderful hospital and she's getting excellent care but the fact is that there's no amount of physical or occupational therapy that can now undo what the MS has done to her in the last seventeen years.   And I'm sad and I miss her.  I miss her a lot.

"Hope is the thing with feathers
that perches in the soul
And sings the tune
without the words
and never stops at all."
                      - Emily Dickinson