Decreased Memory

One year ago today, Lyn was diagnosed with early on-set dementia.  The physician actually wrote "Decreased Memory" in her charts.

This diagnosis was brought on by the conversation her team had in her 2011 ISP meeting.  During that meeting, as each member of the team spoke, a picture was revealed of Lyn's lost skills.  At that time, they noted that she had lost the ability to turn on the washing machine and the ability to turn the car radio to her favorite preset station.  The various meeting participants had different examples and it was the first time they had come together and started comparing notes.

The diagnosis of decreased memory kicked off a series of tests.  Lyn had an MRI, lab work and the neural consultation scheduled.  The tests were scheduled to start on July 7, after Mom and Lyn returned from a week's visit to my home.  While that first official diagnosis was "decreased memory," Lyn's physician was also using the word "dementia."

It hit Mom and spun her for a loop.  She didn't even discuss it with me until a day or two into their visit.  She needed time to process it.  She needed time to grieve for Lyn and time to steel herself for the journey they find themselves on today.

During this visit, I pitched the idea of this blog to her and she was open to considering it.  We started it a couple of weeks later on July 8.

The past year has seen more changes in Lyn.  Her speech is more stilted and discombobulated.  Sentences are frequently left incomplete and the topic is dropped easily.  Lyn drools more now, even when she's awake and conversing.  Her evaluations continue to show decline.  She is more moody and easily frustrated.  However, she can still be redirected.  She requires oxygen for each night's sleep and she no longer tolerate of any travel that takes her more than an hour from home.  Her world, while still busy and engaged, is definitely shrinking and becoming even more regimented than before.

Lyn remains capable of love, especially towards Nikka.  She expresses concern for my children and gets excited to see them on camera during our weekly Skype sessions.  I can see her work hard to ask about them by name each time we speak.  She has decided they are important to her and for this effort, I am grateful.

Lyn continues to drive me to read and write about dementia each day.  Unfortunately, the overlap of information about dementia and about the intellectually disabled who do not have Down Syndrome is vanishingly small.  I look but find nothing.

In many ways, we are in uncharted waters with Lyn.  It is not that we are the first to experience dementia in an intellectually disabled loved one.  It is that we may indeed be the first to document it, to publicly share it and to seek more insight.

So, even as Lyn's memories continue to decrease, we will continue to document and remember for her. She deserves at least that if not more.

Continued tomorrow with Mom's thoughts.


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