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Love Endures, Despite Alzheimer’s

Friendship Dialogues Founder, Ellen Pearlman
Founder, Ellen Pearlman

Love and loss go hand-in-hand. You can’t avoid that. Loss comes in many different ways. There’s the loss of someone you love that comes suddenly without warning (as it did when my father died of a heart attack while at his office when he was 50 and I was 13). There’s the loss of someone you love that comes gradually as they succumb to a devastating illness (as it did when my best friend Madeleine died when she was 58 after suffering for over six years with a rare form of cancer combined with Myasthenia Gravis, a neuromuscular disease). Then there’s the loss of someone you love that is long-term as they slowly lose their mental capacity due to Alzheimer’s disease (as it happened to my brilliant sister-in-law, a former math teacher, who died after more than a decade of decline).

Regardless of the time frame in which loss occurs it is devastating to all those connected to the person whose life is ending. But having experienced loss many times in my life and for many different reasons, I believe the hardest loss to witness is the slow decline of someone with Alzheimer’s. With Alzheimer’s you lose the person when they are still alive. You lose the ability to have meaningful conversations, you lose the ability to reminisce about the good old days, and you lose the ability to have shared experiences. But recently I was reminded of what you don’t lose – love.

My cousin Michael was diagnosed with Alzheimer’s about six years ago. For several years his cognitive impairment was mild, but after a grueling year when his wife Gloria was in and out of the hospital and spent months in rehab after being treated for colon cancer, his decline has hastened. She wrote to me this week about the recent changes she has observed, providing a glimpse through dialogue of how their life is changing and his disease is progressing. But through it all, love endures.

An update…..

I can’t find the flashlight. I need a flashlight.

I’ll get it, What do you need it for?

The flashlight in the bathroom went out, I have to change it.
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I need a wet thing.

A sponge?

A wet thing for my hands. I need to dry them.
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The candleholder you stained should be dry. Bring it up and we can put it on the screen porch.

What candleholder?

The one you made from the piece of wood.

I made a candleholder?

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Neighbor: How are your grandchildren?

                 Sometimes I watch them on television.

                 Do you mean the computer?

                 (Laughing) I think I mean the phone. It’s fun. I miss them.

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Why can’t I stay by myself?

Because if there was an emergency you don’t remember your address or phone number or who to call.

What would be an emergency?

If there was a fire or you got hurt.

I’d go outside.

Who would you call?

Sarah or Zach.

You have to call 911

Why? What’s 911?
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Are you in the den?

I’m working on a picture. It’s hard.

Do you want to take a break?

No. I want to do this. I used to be able to do this without thinking.

I need to do this.

1/2 hr later…….This is hard.

How ’bout a short break?

No.

1hr later……Look at my picture!

                   It’s  beautiful! (Achingly, amazingly, wonderfully beautiful)
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Where are we going?

To see Stella.

5min. later

Where are we going?

To see Stella.

5min. later

Where are we going?

To see Stella

30 minutes later exiting onto Riverside Dr.

This is like coming home. I used to walk those other dogs over there. (He did and it was.)
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The grass needs to be less. I have to vacuum the grass.
__________________________________________________________________

After the center we have to go to my appointment with the surgeon.

Why?

He has to check the incisions.

Why did you get those incisions?
__________________________________________________________________

Looking at the diner menu.

What do I like to eat?
__________________________________________________________________

Why did you give me fewer pills (vitamins)

Oh! I gave you mine by mistake.

You’re getting like me!
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Me: Are you depressed?

       No, I’m still me. Just not the same.

       And I have you. I love you.

Me (crying): I love you too

        Why are you crying?

         I don’t want to lose you.

         You’ll never lose me. I’ll always know you in my heart.
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Language is lost, memories fade, things that should be easy aren’t, things that seemingly should be complicated sometimes aren’t, some days are hard, some filled with joy, life is often minute by minute, always sadness and worry….. love endures.

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