“People must decide to be hopeful despite all, and they must make this decision again and again.”

           Stephen G. Post, PhD     

Several months ago, our friend Mike Splaine suggested I read an article by Stephen Post, Director, Center for Medical Humanities, Compassionate Care, and Bioethics. When I saw the words “the deeply forgetful,” my eyes filled with tears. Dr. Post truly honors and understands people who are living with dementia and their care partners. I’m sharing just a portion of his beautiful story of hope, with a link at the end, so you can read the rest.

HOPE IN CARING FOR THE DEEPLY FORGETFUL: ENDURING SELFHOOD AND BEING OPEN TO SURPRISES

Stephen G. Post

In the lives of carers for the deeply forgetful, hope might be best defined as “an openness to surprises.” Dementia, in its intractable, progressive, and irreversible form, is often caused by Alzheimer’s disease (about 60 percent of cases). There is much bleakness in the insidious pealing away of memories and capacities. Where is hope? Is there any at all?

The idea of hope as “being open to surprises” emerges from twenty years of working with carers in support groups and community dialogues. Yes, there is an assault on the story of a life, but despite the losses, there are also sporadic indicators of continuing self-identity that make caring meaningful.

The term demented is so often used in a derogatory manner, and lends itself to dehumanization and despair. The deeply forgetful suggests continuity with a shared humanity, for which forgetfulness is a problem of degree, from the absent-minded professor to the shopper who has forgotten where the car is parked, from the patient who has just awakened after shock therapy to the athlete who has suffered one too many concussions, from the young child whose capacities for memory have not yet developed to the adolescent with attention deficit disorder. We all have some problems with memory, but to varying degrees at different times. I recognize that classically “dementia” implies a precipitous decline from a former mental state, and has been sharply contrasted with “normal” age-related forgetfulness. But with such middle ground as “mild cognitive impairment” and the like, there is clearly a continuum involved. It is all a matter of degree.

Thank you to Stephen G. Post

Stony Brook University School of Medicine, Department of Preventive Medicine, Director, Center for Medical Humanities, Compassionate Care and Bioethics

Please visit his site to complete the article and read more.

www.stephengpost.com

 

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

Every week, I interview couples and write their love story for the Kansas City Star. Every story is different and talking to people who are in love is always inspiring; often couples have to overcome enormous obstacles to bring their relationship into reality. A few days ago, I talked with two friends whose love and cosmic connection shone out from their faces and rang out with their words. I wanted to share this small part of their story with you.

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The coffee date was going better than Charlie, age 60, could have ever imagined. Just a month earlier, his best friend had burst into Charlie’s dark apartment and roused Charlie from his lethargy, saying, “You need to open up these windows and let some light in. You should start dating.”

“Who would go out with a guy who has Early Onset Alzheimer’s?” Charlie asked his friend.

“Maybe you should find out,” his friend replied.

So Charlie Miller pried himself out of his depression and joined eHarmony. And this coffee date with Elizabeth Hack was the result.

Elizabeth, age 55, was brilliant, interesting, energetic, curious, and shared many of Charlie’s interests. When she asked Charlie what he liked to do, he mentioned listening to music, attending theater, visiting with friends and volunteering for the Alzheimer’s Association.

Elizabeth knew nothing about Alzheimer’s. She asked, “Does someone close to you have the disease?”

“Yes,” Charlie answered. He wanted to say more but the words stuck in his throat. He had never envisioned this casual meeting could possibly turn into a romance. Yet he was already comfortable with Elizabeth and felt their relationship was meant to be.

Over the weeks, they continued seeing each other, meeting at concerts, going to plays, and exploring new restaurants. As their friendship deepened. Charlie knew he had to share his diagnosis with Elizabeth and he worried she wouldn’t be able to accept it.

But before he had a chance to broach the subject, Elizabeth, wanting to learn more about Alzheimer’s and about Charlie’s interests, visited the local Alzheimer’s Association website and noticed a picture of Charlie, as a volunteer and a person who has Alzheimer’s. She was shocked, dismayed, and confused. But she was also in love with Charlie; his diagnosis did not diminish her deep feelings for him.

alzCharlie suggested she meet with his social worker at the Association to learn more about the disease. Elizabeth did that and though the information was daunting, her connection with Charlie was strong and true; she, too, felt they were destined to be together.

They began traveling and made plans to move in together.  In a vineyard restaurant in Napa Valley, Charlie proposed and Elizabeth said Yes. Today, they are living happily, grateful they have found each other

“None of us know what will happen next,” Elizabeth says. “Just the other night, we were at a dinner party. One friend was just released from the hospital after heart surgery, and another friend was facing a hip replacement. I felt concerned for my friends and I felt so lucky that Charlie and I were happy and together. We are dedicated to living with joy and curiosity in the present moment.”  Charlie&Elizabethz

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Q 4 U: What is a reason for gratitude in your life?