The Genius of Marian

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*This was actually a post that I started back on September 13, but decided to still post it because this film really should be shared.

Today was a cold and rainy day. We awoke and went for a run, squeezing it in before D had to leave again and go back to work for the next six days.  It was 39 degrees when we started the run, but I still elected to wear shorts, my legs red with the cold before we even hit the first uphill of what would be a very uphill run.  Upon return, D showered, packed, and readied himself, while I made breakfast.  After he drove off, it began to rain in relatively short order.  Now it was in the 40s, but still, that’s cold and rainy as we haven’t adapted to fall temperatures yet.  And so I spent the day muddling inside, reading, working on a slow going sewing project (though all of my sewing projects seem slow going), making sun (oven, really) dried tomatoes, and contemplating going out into the rain to pull beets for canning.  The best thing I did today, though, was to cozy up to the fire (the first of the season) with my knitting and watched “The Genius of Marian” a really intriguing and powerful documentary about Alzheimer’s.

The film made me think a lot about my family, D, and what it means to get old or to not get old but still not be able to take care of yourself.  It’s an opportunity to think differently about how time changes relationships and how your relationship with your spouse, your children, your friends changes, how your relationship with yourself changes over a period.  I think this happens to everyone all the time on some level as we are always changing, right? But when you have Alzheimer’s, a chronic disease, an illness that will shorten your life, these changes are huge, huge and inevitable.  How do the roles of the people around you change? How much should they change?  What’s it like for the person with the illness or the person on the receiving end of help when family become caregivers?  What’s it like for the caregivers who are family?

When I see patients who are older and they come in for surgery with their spouse, sometimes I see what I hope for D and I when we are old.  I saw it in this film, too.  Not that I am as bright and beautiful as Pam White, but the love that Pam and her husband had for each other and still have for each other is inspiring.  He says something that struck me, and this is not a direct quote, but he essentially says that he is going to be fun for her because the disease and the predicament that they are in is not her fault.

It also made me think of Dame Cicely Saunders, known as the founder of the modern concept of hospice, when she said “You matter because you are and you matter to the last moment of your life.”

Recently we had a continuing eduction session at work by a physician who focuses in geriatrics and knows dementia and how it affects people very intimately.  She spoke of how people with dementia are still there and making a bridge to reach them.  Your grandmother is still your grandmother, your father is still your father.  People with dementia are not lost.  There is always a bridge.

What are your thoughts on your parents getting older?  Do you have a parent with dementia or know someone who does?  What is it like?  Have you had conversations with your parents about what they might want when they get older or are no longer able to care for themselves?  Have you thought about what you might want if you are no longer able to care for yourself?

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