Monday, June 10, 2013

Comment Response

I ended last week with an update from Mom on how Lyn's ISP meeting went.  In it, she mentioned that she would be spending some time soon (sorry, I got my dates mixed up) with the staff at day hab teaching them what she has learned about Alzheimer's.

One of our cousins posted a comment indicating surprise that the day hab staff were not familiar with Alzheimer's disease.  Mom responds with:


"It is not uncommon that most people know very little about Alzheimer's. It's like anything else, unless it touches you personally you don't learn about it.

 I was somewhat shocked during the ISP when I realized case managers and day-hab staff didn't realize how much she sleeps and how she is still able to 'cover up' when she doesn't understand.  When the ISP was over I asked day-hab staff if I could come talk to them.  I wanted to share what I've learned over the past 2 years.  She jumped at the idea and our case manager asked if she could also be there.  I said it needed to done when Lyn's not there because I will be very honest.  I will explain that this is a terminal disease, which they didn't know.

I have pictures of a healthy brain as well as an Alzheimer brain.  I will explain how "dementia" is the umbrella and there are 5 kinds of dementia.  I finished reading the book The Alzheimer's Journey and made notes.  It is such a wealth of information and practical advice.  I want them to understand how when she does "cover up" it is called "rising to the occasion."  I want them to know NOT to treat her differently but with kindness and respect as they do now.  I want them to understand how important they are in our lives since family has deserted us; other than her siblings & their families.

By using the example of the movie reel I can easily show what happens to the brain.  I'm excited about doing this on June 27th at 3pm.  Respite will pick her up at 2:30 which is about the normal time for Thursday."

I would like to add this in response as well.  Most dementia diagnosed in the intellectually disabled has been limited to those with Down's Syndrome.  It is widely recognized as a common event in the later life of those with this genetic condition.  However, dementia, particularly early on-set Alzheimer's is often misdiagnosed or overlooked in the neural normal population.  To have it identified and acknowledged, even grudgingly, in an individual like my sister who is intellectually disabled without Down's, it extraordinary.  I think this was only possible because we knew what she was able to do before and we were able to specify clear example of a loss of lifelong skills like turning the car radio to her favorite station or knowing how to turn on the washing machine.  We were met with "So?  That's not unusual for this population."  We had to counter with "Yes, but it is unusual for HER."  

I honestly believe that Lyn would have been overlooked or misdiagnosed and allowed to decline faster if it were not for the attentive care she receives.

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