World Alzheimer’s Month: Alzheimer’s And The Open Sesame Effect by Sheryl Lynn

My friend Gwen Weaver passed away today.  I don’t know what caused her death.  She was as beautiful on the inside as she was on the outside.  She was elegant and playful, she was dedicated and goofy, she was creative and a badass.  I remember how much fun we had when she stayed with me in the late 1990s.  I didn’t expect to like her so much.  Hearing her name always put a smile to my face, even many years after I’d changed careers.  The breathtakingly beautiful calligraphic letters she created will dance on in my heart forever, and I dedicate the following post in her honor: 

I performed my first and only wedding ceremony a little over two months after my mother passed away from end-stage dementia.  The bride was my server at a restaurant I’d found just after my mother’s death; her loving attention was the reason I was able to swallow a few bites of food.  She’d wrap the rest for me to eat later.  I looked like hell, and Lynn worried about me.  I felt cared about.  I so needed to feel cared about in the midst of so many losses and traumas.

Her groom had lost his father to Alzheimer’s Disease the previous August.  His father had been a strict disciplinarian when Dave was a boy.  Nothing Dave ever did was good enough for him.  Dave never felt close to his father until Alzheimer’s Disease changed his father’s personality.  The continual criticisms went away, replaced by the loving and appreciative words he never thought he’d hear his father say to him.  Their relationship transformed from cold and distancing to warm and supportive.  Dave now loved spending time with his father; their final years together were healing for them both.

Dave appreciates Alzheimer’s Disease for uniting him with his father.

If you ever place your loved one in a memory care unit, be prepared for having no contact until he or she adjusts.  I’d brought my mother to her new home the day before Mother’s Day 2009.  I felt I was putting my mom in jail for Mother’s Day.  My mom took one look at the small room she’d  been assigned and became hysterical.  She wanted to go home, but home was no longer a safe place for her to go.  Someone had recently passed away in Room 40, a larger room down the hall with two large windows.  The room wasn’t ready, but it was either Room 40 or a quick exit, so the staff quickly got to work readying the new room.

I was told to leave.  I was told to not call my mother for Mother’s Day, that I’d be called when she’d adjusted to her new home.  They didn’t know how long that would take.  I walked out of the building hearing her screams echoing through the halls.

The guilt kept me awake all night.

Our next few phone conversations were awkward.  She sounded different.  She was different.  She was adjusting to community living.  The schedule was different, the food was different, the people were different.  I felt like a horrible person for having taken away her organic food, her personal care, and her freedom, even though I knew the time had come to make a change.  She slowly adjusted, and I was invited by the staff to visit her.

I was shocked to see she’d made friends.  Mom didn’t have many friends while I was growing up.  This was a new concept.  Mom and the three other ladies who sat at the same table for meals had bonded.  They walked hand in hand from the dining room to the community center, from the living room to the porch.  Mom walking hand in hand with three other women she barely knew? They clearly cared about each other.  Mom had girlfriends.  They didn’t speak much, but they’d bonded.  I called them The Cool Girls.

I asked Mom if she wanted to go for a walk in the courtyard.  I took her hand and led her to a shaded bench.  We sat together and people watched.

Denise, one of my favorite caregivers, was walking across the courtyard holding hands with a male resident.   She looked at him and said “I love you.”  He looked lovingly at her and said, “I love you more.”  “No,” said Denise, “I love YOU more!”  It was a peak moment in my life, seeing Alzheimer’s Disease destroy the barriers that normally separate us from the love we are.

I realized, in that moment, how lucky my mom was to live in a place so filled with love.  And in that moment, I wished I could live there, too.  My mom and I grew closer while she was living there than ever before; the love that surrounded everyone and everything helped make that possible.

Mom passed away in early 2011.  I still call her facility from time to time to say hello.

I miss feeling that love.  People are too scared out here in the “real” world to say things like “I love YOU more!”

For some who have been diagnosed with Alzheimer’s Disease, it’s an Open Sesame to reveal the hidden treasure, the love they feel that’s been kept away from the world for many decades.

To the people I know who are terrified of love, and there are many of them:

You can wait until your last years to open your heart, or you can breathe through your fear and do it now.

If you do it now, at least you’ll remember you did it.

So will someone else.  So will many someone elses.

What are you waiting for?

Rest well, Gwennie.  I love you more.

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