Wednesday, January 30, 2013

A Reader Request - Part 1

Previously, I've invited you to offer up suggestions about topics you would like to see us address on Dementia be Damned.  I am serious about that offer and will gladly take reader requests.  I don't have all the answers, but I'm happy to ponder the questions you pose.  A friend of mine suggested that he would find it interesting to read a post about the role that faith has or has not played in this journey with Lyn.  To adequately answer this question, we need to have two posts because my answer for this question differs from Mom's answer.

If this topic is not a topic of interest to you, please feel free to skip today and tomorrow's posts.  Today, I will speak about my own view of faith and how it impacts my experiences with my sister and her Alzheimer's.  Tomorrow, Mom will provide us with her perspective.

First, let me start with a bit of context.  I was baptized and raised Catholic.  I am a 3rd grade CCD drop out.  I left the Church in high school.  I attended a nominally religiously affiliated liberal arts college and struggled with my faith for a number of years before settling where I happily am today.  I am a Humanist.

Yes, my Mom knows.  It has been obvious for a very long time.  I am not exactly subtle.

I'm constantly looking for the truth.  I want evidence and repeatable methods.  I want to understand you, Lyn, Alzheimer's and everything else that crosses my path.  I believe that it is a moral imperative to try and make the world a bit better for all of us.  If I can improve life for some one else, then I can improve it for all of us; just a little bit at a time.  This is part of why I became a foster parent.

As my sister moves through the stages of her disease, my need to understand and to try to make things better comes into play in several ways.  First, I want more information.  I search for the latest scientific papers and studies.  I read over an hour a day, most days of the week, on just the topic of Alzheimer's.  I then try to distill it for Mom and for you.  Second, I write this blog.  I want to document what we're seeing with my sister and I want to share the knowledge I'm gaining with anyone interested because maybe, just maybe, a connection will be made that makes a difference.  I want to record Lyn's life and help people understand why an intellectually disabled woman with Alzheimer's is worth writing about.  Finally, and probably most importantly, I just want to do what I can to take care of Lyn.

Lyn is my sister and I love her.  It matters to me how she feels and how she spends her time.  It matters to me that she's changing as a result of Alzheimer's.  I want my children to have a record of why Lyn matters and why it is so important to try to help her.  I don't want them to think that we can just hope for some miracle to happen.  I am not expecting a cure to be found in her lifetime.  However, I want them to see that sometimes, even when we know that we won't change the experiences of the person we set out to help, that we keep at the work we have chosen because there is value in caring and value in the work itself.

I have had several people say to me that they are praying for Lyn, for my family or for me.  I thank them.  While I don't pray, I appreciate the well wishes, the love, hope and support I hear in such statements.  I understand the comfort of ritual.  I just don't accept things on faith.

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