Tuesday, September 4, 2012

Alzheimer’s Journal: Heartbreaking Visit to a Loved One With Dementia, There Is No Greater Sorrow


“There is no greater sorrow than to recall happiness in a time of misery.” Those words from Dante’s Inferno never rang as true as they did that day.

By Marie Marley 
 Alzheimer's Reading Room

Alzheimer’s Journal: Heartbreaking Visit to a Loved One With Dementia There Is No Greater Sorrow
Marie and Ed
I almost never cry. Maybe once a year. If at all.

One day I went to visit Ed, my beloved Romanian soul mate of 30 years, at the Alois Alzheimer’s Center. When I arrived I heard someone pounding away at the piano in the distance.

I figured it must be sing-along time, so I went to the dining room, where sure enough, there was Jan, one of the activities staff members. She was at the piano, sleeves billowing as her arms flailed and fingers flew across the keys. She was playing a medley of well-known songs and singing with gusto.


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I really liked Jan. She was lively and energetic; sweet and compassionate. You could tell just by her facial expression and tone of voice that she cared about every one of those residents. That mattered to me more than anything else.

When I saw her interact with Ed, I knew she loved him. And I loved her for that.

There were about a dozen residents sitting at the tables, some alone and some in groups of three or four. Ed looked nice - close-shaven and hair neatly combed. I walked over and touched his shoulder to get his attention. He looked up, smiled, and told me how beautiful I was.

He always started every visit by telling me how beautiful I was. It was so endearing.

I sat down to keep him company. All the songs Jan played were ‘golden oldies,’ and of course Ed didn’t know them. He was living under the brutal communist regime in Romania when they were popular, but he appeared to enjoy the festive atmosphere anyway.

He was smiling and giving Jan his full attention. If she weren’t playing the piano, I was sure he’d be telling her how beautiful she was.

“She’s the most talented ‘moo-sician in America,” he told me. “She is very famous. Everyone knows her. It is an honor to hear her play.”

“But when she plays, she plays without stopping for four hours. R-r-really. I mean it. She plays for four hours! It is too long!”

Someday I’ll have to tell Jan that story. She’ll get a kick out of it.

She played a wide variety of songs, mostly from musicals like Oklahoma, Porgy and Bess, The Music Man, West Side Story. Things like that.

Having run the gamut, she started ripping into some patriotic songs – God Bless America, Born in the USA, even The Star Spangled Banner, to which no one stood.

A few residents sang along. Others moved in time, or out of time, with the music. Some sat stoically, as though the music hurt them, while others’ heads drooped while they dozed off.

Next she plunged into the Beatles’ song, Yesterday. I was caught off guard when I heard the first two lines. I fought back tears and my lower lip quivered.

It was true. Yesterday my troubles had seemed so far away and it looked as though they were there to stay. He wasn’t going to get better.

I was about to burst into tears and sit there sobbing. I looked up at the ceiling and around the room to distract myself. I bit my lip. I didn’t want to make a scene in front of Ed, the staff and the other residents.

She kept right on playing and I kept struggling to keep the tears at bay. The words became more painful.

Yes. He wasn’t half the man he used to be. There was a shadow hanging over him.

If a great poet tried, he couldn’t write more poignant words about a loved one with Alzheimer’s. I realized I couldn’t control myself much longer so I jumped up, abruptly told Ed I had to go, and headed straight for the parking lot.

Once in my car I lost it. I pulled onto Damon Road and drove home on autopilot, crying all the way. I kept hearing the song in my head over and over.

Memories of ‘yesterdays’ from nearly thirty years before flashed into my mind as vividly as if they were literally from yesterday.

Ed standing tall at the ocean, his Eastern European skin darkly bronzed. Ed elegantly dressed, taking me to exquisite restaurants every New Year’s Eve. Vacationing together at Lake Garda. My Jewish Ed having me decorate his little Christmas tree each year and his delight upon seeing the tiny blinking lights.

How could Jan play that song?

In retrospect I’m sure she didn’t link the words to a person with dementia. To a man who wasn’t half the man he used to be. To a man with a shadow hanging over him. Otherwise, she never would have played it. But that realization didn’t stop my blazing pain.

More memories. Making love on his Kilim when he returned from that one especially long trip to Paris. Our pet names for each other, which we used to that day. All the times he sat on the sofa while I stretched out on it and rested my head in his lap and we talked for hours.

Staying at Harbour Town, listening to the folk singer below our window sing Puff the Magic Dragon. I could hear Puff in my mind as clearly as if the singer were performing it right then in my car. That made me cry harder.

“There is no greater sorrow than to recall happiness in a time of misery.” Those words from Dante’s Inferno never rang as true as they did that day.

It was the first time I’d felt the full force of having lost Ed to Alzheimer’s. The first time I’d cried about it. For in all those years I’d never realized until right then just how much I’d loved Ed, and loved him still.



More articles by Marie


Come Back Early Today:
A Memoir of Love, Alzheimer's and Joy

Marie Marley
Marie Marley, PhD, was a caregiver for Dr. Edward Theodoru, her delightfully colorful, wickedly eccentric Romanian soul mate, for seven years. After he passed away in 2007, she wrote an award-winning book about their relationship, Come Back Early Today: A Story of Love, Alzheimer’s and Joy. In the course of narrating their 30-year love story, Marie illustrates the solutions she found to 14 different issues that typically arise when loving and caring for someone with dementia. You can visit Marie’s website which contains a wealth of information about caregiving at ComeBackEarlyToday.

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