Tuesday, May 8, 2012

While the Music Plays On . . .

This past week, Dave and his sister placed their mother in a nursing home.  That's a difficult sentence even to write. She is only 70. With the perfect vision of hindsight, we can find evidence of early-onset Alzheimer's Disease as much as fifteen years ago.  There were small changes in personality; behavior that seemed slightly irrational, but not serious enough to challenge.  Over time, the questionable choices became more worrisome, the flashes of anger more frequent, the confusion more pronounced.  It cost her her job, then her driver's license, then her independence, her memories, and finally, the recognition of even those dearest to her.  Her daily care now mimics that of a toddler - routine tasks like getting dressed require assistance; if left unattended she can wander into danger.  For the past few years, her husband dressed her, bathed her, cooked her meals, washed her clothes, kept her safe and, through it all, did his best to maintain her dignity.  But it all came at the cost of his own lifestyle, freedom and health.  Finally it is enough.  Professional care is now the "right" thing, the best thing for all.

Follow me while I wander for a minute, please.  Have you read the book Still Alice by Lisa Genova?  It is an "inside look", if you will, at a Harvard professor who is diagnosed with early-onset Alzheimer's.  We see and feel the loss and confusion through her eyes.  At the end of the book, she sits in her own kitchen, surrounded by her family, and unaware of her connection to them.  But inside, she's still Alice.  Inside, she knows who she is, who she married, she knows how many children she has - but she can't connect that knowledge with the faces around her.

Now I'm finding that the process also works backwards, in a way.  When I look at the overweight woman in the nursing home, I still see the slim, health-conscious woman who spent years trying to convince me that steamed broccoli is good (its not).  When I look at this woman's close-cropped hair and shapeless, elasticized clothing, I see the beautiful woman with a fashion flair that I so admired.  When I watch her sit blankly in a room of loud, laughing grandchildren, I see the vivacious woman who delighted in socializing and adored her family.  This woman - the one who occasionally calls me Irene and insists it's time for me to go home - is a stranger.  But inside, she's still Dee!  

Here's how I know:  Dee has a vocal talent that defies my descriptive ability.  At fifteen she was performing in musicals at a nearby college.  In her early twenties, she auditioned for and was accepted into the Metropolitan Opera, but when she read the fine print of the contract it stated that she would not, necessarily, be singing in New York.  She could be placed in a traveling company and perform around the world.  She chose to give up that dream rather than leave her young son.  She became a music teacher and shared her talent wherever she could - church, school, local theater - she even sang at our wedding.

Now, with all that is jumbled or confused or lost in her mind, music remains.  She can still sit at the piano to play and sing the familiar hymns.  How can it be that she can no longer tell time or read a simple children's book, but the music is still there?  As time passes, the words are sometimes mumbled and the endings are almost comically loud and flourishing, but the love of music still comes through.  Sometimes it makes me laugh, and sometimes it makes me cry, but it always gives me hope.  Because God created a beautiful, talented, loving woman and, despite the ravages of this appalling disease, she is still that creation. She is still Dee.



*While the Music Plays On by Emery Heim, recorded by Tony Bennett, Doris Day and others.

9 comments:

  1. I am honored to know that Dee! Although we aren't family by blood - I have always felt "family" with Dee and her husband Dean. Dee was always so kind to me and took such an interest in our kids as they grew. Best times were sitting around the pool, drinking tea, watching kids/grandkids! She is my kind of funny - loved her sense of humor. I hate this disease that has taken that - and I won't ever understand it. She is still Dee - a beautiful, stylish, funny, intelligent, no one can sing The Lord's Prayer like her, friend of mine!

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  2. What a beautiful beautiful post. Hugs for what you and your family are going through.

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  3. This is such a beautiful post and a lovely homage to your MIL.

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  4. I am so sorry Tami for your family, especially your husband and his sister. That is such a terrible illness to have and to be affected with it at such a "young" age; because really 70 these days is considered "young". It is interesting though to look back and see the early beginnings of it so many years ago and would things have gone differently if known back then? Probably sadly no. Always a tough decision to place in care like this but safe for so many, the patient, the spouse, the children, etc. I truly do understand the impact it all means on the family having witnessed it one step removed in the case of my husband with his mom, though her dementia was from Parkinson's disease and her placement in assisted care was at age 84. I also grasp what you are saying in looking at Dee now and remembering Dee then and what a contrast, what a difference. It is good that she still has the ability to play the piano and to perhaps enjoy that outlet. Again, I am so sorry........

    betty

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  5. I'm sure this has been a heart-wrenching decision for your family. I think Alzheimer's is such a cruel disease … and I was in tears through most of the end of Still Alice. It is good to hear that a little bit of her is still coming through, and I imagine it is difficult to see her today and know who she was in the past. Hugs to you in this difficult time.

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  6. So sad...this happened to my mom...but she was in her 80's...it is a horrible illness...

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  7. I am so sorry to read this about still such a young woman. It has had to be terrible for everyone. (I did read Still Alice and thought it was gut-wrenching at time.) We'll be thinking of you and yours. Your tribute to Dee is beautiful

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  8. I think it's wonderful that you can "Still" see Dee in what is left of the person she now is. When my Mum went into a nursing home, I cried for days. When she moved out west ( a four hour plane ride and a 2.5 hour car drive away from where I live) I cried again. It was move of an adjustment for those of us left behind than it was for her, it seemed. She settled in very well, felt safe and well-cared for. Life throws curve balls just when we think we have things nicely under control. Always a rude awakening, for sure. Blessings Tami on you and your family.
    Rosemary

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  9. This is a beautiful post. My book club just read Still Alice, and while I missed the discussion, I did read the book, even though I was very reluctant. It just sounded too emotionally difficult. My heart broke for her and your family, but I was glad to see that Alice was still Alice at the end, and I'm glad that your mother-in-law is still Dee. I had a mentally-challenged patient recently who really gave very little indication that he knew anything was going on around him. But he sang his own wordless songs constantly in an achingly beautiful voice. He broke my heart as well, but I felt blessed to have heard his song.

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