Oct 21, 2013

My Beloved Ed’s Life Before and After Alzheimer’s

So Ed was infinitely better, but I was still in a state of total misery. I couldn’t even have what for me was a meaningful conversation with him.

By +MarieMarley
+Alzheimer's Reading Room

My Beloved Ed’s Life Before and After Alzheimer’s
Those of you who regularly read my articles here have seen many stories about my Romanian life partner, Ed, and my relationship with him. But all of those have focused exclusively on events during the years he had Alzheimer’s.

Now I want to tell you a little about the man he was (and the relationship we had) before he developed dementia and then how things changed as his illness progressed.

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Marie Marley, PhD, is the award award winning author of, Come Back Early Today: A Story of Love, Alzheimer’s and Joy. You can visit Marie’s website at ComeBackEarlyToday.
How Ed Came to the US

Ed came here from Romania in his mid-50s as a penniless political refugee, fleeing the brutal communist regime.

All they would let him take out of the country was $100, one suitcase and the clothes on his back. No documents at all. No birth certificate, no college diplomas, no passport. Nothing to prove that he even existed.

And not only that. He brought his elderly mother with him. Now, political refugees just didn’t do that. They had no idea how they were going to support themselves – let alone an elderly parent.

The Gentleman and Scholar

Ed was the quintessential “old school” European gentleman, scholar and lover extraordinaire. He was colorful, chivalrous, charming, caring, compassionate and courageous.

He would kiss the hands of ladies to whom he was introduced, and send flowers for the smallest occasion – or even no occasion.

The man was also brilliant. He knew seven languages and had two PhDs. But his most distinguishing feature was his stunning memory.

An Eccentric Man

In restaurants Ed was very particular about which table we sat at. If he didn’t like the one the hostess took us to, he pointed to the table he wanted.

That would have been fine, but often after sitting down he would decide he didn’t like that table either. Maybe it was too light or too dark. Maybe it was close to where a child was sitting or too close to the restrooms. So he would call the hostess back and we’d move still again.

Initially I was embarrassed by this, but soon I learned to accept it as just part of being with Ed.

Ed’s “Misuse” of the English Language

Ed learned English very well after he came here, but he still did make little mistakes sometimes.

One day in Walgreen’s he asked the clerk, “Do you have any hangovers?”

She was shocked and asked, “What?”

He said, “Hangovers – do you have any hangovers?”

Well, what he wanted was clip-on sunglasses. You know – they “hang over” your regular glasses.

He never learned how to pronounce “th” either.

He had a friend name Henry Sexton III. So he always affectionately referred to his dear friend as “Henry Sexton the turd.”

What Ed Was to Me

Ed was my best friend, my life partner, my soul mate, my chief confidant, my greatest supporter. He was always there for me. Ed was my rock. And he treated me like a treasure.

Ed’s Mind Began to Slip

After around 25 years of being together, Ed’s mind began to slip. And I was in deep denial. Even when he was found driving on the wrong side of the road I thought it was only because he was driving after dark. He wasn’t supposed to be driving after dark.

But then one evening we had a phone conversation that made it impossible for me to remain in denial.

He had called me in a panic because he couldn’t find his scissors. I told him to look in his kitchen.

“Kitchen?” he asked. “What’s a kitchen? I don’t have a kitchen.”

I was shocked beyond belief. I tried everything to jog his memory. Nothing helped.

His Severe Behavioral Problems

Ed became very depressed and was drinking heavily at the time. He became verbally abusive to me. So much so that I wanted to end the relationship for good.

Finally, a friend of mine gave me the following advice:
  1. Don’t argue with him.
  2. Don’t even bring up topics that might upset him.
  3. If he does get upset, quickly change the subject.

When I finally mastered this advice, our relationship improved considerably.

Ed’s Transformation

When I could no longer take care of Ed he went to a fine long-term care facility for people with Alzheimer’s. Once there he had activities to occupy him and other people around for socialization. Plus, his doctor put him on an antidepressant.

Shortly after that he was transformed. He became the most loving, loveable, adorable, happy person you’d ever want to meet – Alzheimer’s or not.

My State of Utter Despair

So Ed was infinitely better, but I was still in a state of total misery. I couldn’t even have what for me was a meaningful conversation with him.

It got so bad that I didn’t even want to visit. I had to force myself to visit. I wanted my old Ed back. And I knew I’d never be able to accept his condition.

My Transformation

One day on a whim I took Ed a little yellow stuffed chick. He held it to his chest. He caressed it. He kissed it. He named it “The Little Yellow One.”

Then he looked me right in the eyes and said, “Thank you. Thank you so much. I never had such a lovely present in my entire life.”

I then asked, “Would you like a bunny rabbit, too?”

“Oh,” he said, “I would love a bunny rabbit. He would be a companion for ‘The Little Yellow One."

So the next day I took him a bunny rabbit, which he named Adorable. I had to go out into the hall to talk to the nurse, and when I left I put Adorable on the foot of Ed’s bed.

When I came back a few moments later, I saw that Ed had put Adorable on his pillow.

He told me, “Maybe I’m silly at my age – playing with these stuffed animals, but I really do love them so much.”

So I kept taking him more stuffed animals. Then I started making up little games to play with them. We both giggled like a mother playing with her little toddler.

It was fun!

I decided to interact with him at his level rather than try to get him to interact with me at mine. Then we connected in a meaningful way. I soon realized that I had accepted his condition.

Our love had adapted and endured, even despite Alzheimer’s.

A similar version of this article appeared on the Huffington Post.

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