Today’s blog

Lynn Murphy Mark

A lesson in sorrow

Lately, actor Bruce Willis has been in the news with his diagnosis of Frontotemporal Dementia with aphasia. In my nurse’s brain that translates into another mean neurological disease that progressively robs its victims of their personality as the disease unfolds. People with this condition may also have parkinsons-like movement symptoms, or may experience aphasia and lose their ability to communicate or remember words. According to the National Institute on Aging, this type of dementia, known as FTD, typically gets its start at a younger age: about 60% of people with FTD are 45 to 64 years old. 

I only know Bruce Willis from the silver screen and have enjoyed watching his movies over the years. Now that he has been diagnosed, his family has asked that more media attention be paid to this disease that affects more younger people than other forms of dementia. Perhaps they will contribute in meaningful ways to encourage research into the identification and treatment of FTD. As the dementias go, this one is relatively rare, with one out of twenty dementia patients having it.

One of my dearest friends was diagnosed with FTD some years ago. I don’t know this for sure but I think she was in her early 60’s when she got the formal diagnosis. Her troubles started some years before that. Thinking back on time we spent together she began to communicate less and less when she still would have been in her 50’s. She and I had often shared about our problems with depression, so when she became quieter and quieter I believed she was depressed and withdrawn. 

She began to have problems at work. She and I worked together for seven years and became good friends. I know her as a competent, compassionate and thorough nurse. She will always be that to me. But after a long career at the same hospital she gradually lost her ability to do detail work. She had to take early retirement, and that broke her heart. Those of us who had worked closely with her were appalled at the way she was handled. Little did we know that her “executive” brain functions were being eradicated by the beginnings of FTD.

She and her husband were good friends of ours. They made it a habit to visit us both in Santa Fe and in Naples. We spent a lot of time together enjoying each other’s company and having lots of laughs. Her husband was a botanist. I say “was” because in the early stages of my friend’s troubles he was diagnosed with stage 4 lung cancer and died before a year was through. Once he said to me, “I have to take care of myself because sooner or later I will need to be there to care for her”. When I think back on that statement I feel a profound sorrow for both of them, robbed of the opportunity to grow old together.

For a long time, my friend was able to live in a sweet basement apartment at her daughter’s house. Yesterday I learned that she has moved into a memory care facility. She can have company any time but, as her daughter put it, I’ll have to do most of the talking. She still recognizes people but her language skills are mostly gone. 

She and I share a great love for Cardinals baseball. We used to go to a couple of games every year around our birthdays in September, or at any other time that tickets became available. I don’t know if she still loves the game, but I aim to find out. If so, I will pack popcorn and peanuts and head out to watch a game with her. I hope that is something we can still do together. If not, just being in her company for a while will be a gift.

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