Tag Archives: Alzheimer’s

Interviewing is an Act of Love, Even After Memory Starts to Fail

Posted on by
3

by Jerry Waxler

Last year I visited a recording booth run by the nonprofit organization StoryCorps. The purpose of the booth was to invite people to interview and record stories of their elders. Thanks to its presence in communities and the publication of stories through National Public Radio, StoryCorps has become an influential advocate for the simple act of asking, listening, and recording the stories of our elders and each other.

Thanks to the publicity and outreach of the StoryCorps, and other social factors, the general culture has become increasingly interested in preserving the stories of their elders. And yet, for many people, a sensitive topic arises. They fear it may be too late, because Alzheimer’s is stealing their loved ones’ memories.

And so it was with great interest that I recently heard that the StoryCorps is investigating this exact problem, trying to find the stories of those whose memory is starting to fail. The program is called the Memory Loss Initiative. To learn more, I interviewed Dina Zempsky, senior outreach coordinator of the initiative.

My first question related to my surprise. How could an interviewer reach past the ravages of the disease to reclaim the past. Zempsky explained that short term memory deteriorates before long term memory, so people who forget what happened five minutes ago can have a clear memory of something that took place 50 years ago. I knew this was true in principle, but didn’t realize these memories would be accessible in coherent stories .

Zempsky assured me that the Memory Loss Initiative has successfully helped many people gather such stories. She said, “When people actually make the effort to interview their parents, the resulting stories are usually clearer and more interesting than people expect.” And the session of storytelling does more than simply pass on information. Zempsky explained that the families of Alzheimer’s sufferers have come to expect failure and disappointment in their attempts to communicate. These interviews allow them to share intact memories, offering everyone a sense of success, restoring dignity through the simple act of asking and listening.

I asked Zempsky to help me understand, “Why don’t people know about these memories? Why aren’t more families connecting to these past experiences?”

She said, “Even when their memory is intact, most of us don’t take the time to sit down and ask questions.”

Her answer hurt me with the same nostalgic regret I have heard from so many others. Even when my parents were alive and clear minded, I didn’t ask them about their younger days. In the absence of any intentional attempt to elicit the past, their history remained hidden.

When I hung up the phone, I was stunned by this offer of hope for people who think it’s too late. To learn more, I turned to another national organization whose members preserve stories, called the Association of Personal Historians. One Personal Historian, Sarah White, shared her experience interviewing a client with failing memory.

“My client and I had completed the interviews, and they went much as other people suggest — he was able to recall past events quite clearly,” said White. “In fact, he did a masterful job of dictating his life story; completely without notes, he delivered a story with a clear sense of what each episode meant in the big picture of his life. It was an honor to be witness to that act. He had been a great attorney, and all that courtroom prowess was evident as he worked from what was left of his memory.”

She continued, “Only specifics such as names and dates were missing. I certainly didn’t want to pause him to ask “Now what was that guy’s name? How was it spelled?” while he was in the midst of that creative act. But now he’s a couple years older and foggier.  So my problem is figuring out how to fill in the blanks that his mind didn’t supply the first time and is having even more trouble this time around.”

The solution for this particular elder was to research the details amidst his personal papers. But for the rest of us, this is a cautionary tale. Get those stories while there is still time. One step you can take is to go to the StoryCorps website, under Memory Loss Initiative, and learn from the interviewing tips.  If you live near one of their booths, you could visit them in person, and directly benefit from their recording studios and interviewing guidance. Or you can hire them to visit your organization. To keep their work alive, make a charitable contribution.  Visit their website for more details.

And while you are preserving the memories of your loved ones, consider preserving your own. Research indicates that education, mental exercise, and other mental stimulation can reduce the ravages of Alzheimer’s. Of course, it’s not possible to know for sure, but just as physical exercise protects the heart and arteries, it makes sense that mental stimulation will protect your neurons. And it’s fun to stay mentally active so it’s a win-win situation. While you challenge yourself to write the stories of your life, you will stimulate your mind in the present, create a legacy of your past, and at the same time increase your chances for mental vigor for years to come.

—

Notes

StoryCorps Memory Loss Initiative, click here.

To read my observations of the StoryCorps experience, click here.

For more information about Association of Personal Historians, visit their website. And if you want to make the most of what they have to offer, consider their annual conference, to be held near Philadelphia in October, 2009.

Sarah White’s home page is http://www.whitesarah.com/

Bookmark and Share

The powerful story of an ordinary woman

Posted on by
3

by Jerry Waxler

I first met Linda Wisniewski seven years ago at a critique group in Doylestown, PA. Within a few months she announced that one of her essays was going to be broadcast on her local public radio station. I was impressed by her accomplishment, proud to know the author of one of these radio essays. She left the group, and later I heard from a friend that Linda was teaching a course in memoir writing at the Bucks County Community College. Recently, I saw her again, at the Moravian Book Shop in Bethlehem, Pennsylvania autographing copies of her memoir, “Off Kilter.” Thanks to her persistent passion for telling her story, I can read her book and ponder the gifts her life has now offered me.

The crisis that drives the book is the author’s relationship to her mother. As Mom slipped towards dementia, their relationship became strained. Mom struggled inconsistently, sometimes accepting her fate and other times bitterly afraid of going into a nursing home. During this disturbing reversal of roles, when a child must care for her parent, problems that have been buried for a lifetime bubble to the surface.

Naturally, Mom raised Linda to be a good girl. The problem was that Mom’s idea of a “good girl” was fashioned from an older world, when girls were supposed to stay invisible and do what they were told. Linda didn’t want to follow this training. She wanted to expand towards the freedom of an American woman in the Twentieth Century. These two opposing views of a woman’s role played out in a million homes, as daughters tried to find their identity in a world drastically different from the one their mothers were trying to teach. The resulting schisms were buried for decades under layers of politeness and other charades.

With Mom’s strength failing, and Linda thinking it was time for a nursing home, the stress reaches a crescendo, and Mom explodes, “You’ve made a mess of my life.” This attack jumped out at me. What a hurtful thing to say! I wondered what the “mess” was. My first interpretation was that Mom was looking for a handy target to blame for the downward slide of old age. Then I realized that Linda’s development as a proud, independent woman did create a mess. It messed up her mother’s goal of raising a submissive daughter.

Mom’s outburst makes me wonder what other hurtful things she said to her daughter through the years. Since Mom has been teaching her daughter the importance of being passive, it seems surprising that she would use such an aggressive outburst. And again, putting myself in Linda’s shoes, I saw another lesson embedded in Mom’s behavior. That is, if you want to manipulate another person, then cause them pain.

Psychology lessons from Off Kilter

When I was in graduate school, I took a course called “Assertiveness.” I had always assumed the assertiveness meant “pushy,” so I was surprised by how much insight the word contained. The professor explained it this way.

When you need something from another person, such as love, or privacy, you must communicate. Consider these two approaches. One option is to express your needs in words, using simple statements to help the other person understand what you are feeling. This style of communication called “assertiveness” leaves people feeling good about themselves and draws them closer to each other. The other option is to convey your displeasure by causing the other person pain, in effect punishing them for not giving you what you wanted. The pain causes the other person to pull away, resulting in isolation. Or else the hurt one fights back, creating a sickening embrace of attack and counter-attack.

Through the years since I took the class, I have often seen this dynamic play out in the behavior of individuals and nations, sometimes using aggression to cause pain, and other times using clear communication to reduce pain and enhance mutual understanding. But seldom have I seen it represented with more exquisite insight than in Linda Wisniewski’s tale of trying to help her mother.

I am not my mother

When Mom lashes out, it would be tempting for Linda to draw on her childhood training and respond in the way her mother taught her. Her choices were limited. She could either become aggressive, like her mother, and lash back. Or she could remain quiet, becoming the victim. Of course, neither course is desirable. The high road was to break away and strive towards clear, patient communication. Linda beautifully portrays the power of these difficult choices, as she tries to respect and love her mother, while not “becoming” her mother.

Lifelong process in this adult Coming of Age story

Using flashbacks, Linda shows her journey from child to adult, striking upward like a climber on a hard scrabble mountain. During the climb she was too young and too caught up in the process of growing to be able to step back and understand her family dynamics. As a result, she entered adulthood with unresolved issues. Now, as Mom is growing old, they struggle for warmth amidst their interpersonal tensions. At first, a cloud of doubt descends upon me, making me feel pessimistic about the possibility of love in such a situation.

As I ponder the memoir Off Kilter, I find another dimension that offers me uplifting hope and optimism. By writing her story, Linda has performed a remarkable service to herself and her readers. She has broken the code of silence, and exposed her family dynamics to the world, where we can all compare notes. In a sense, she has taken the high road of assertiveness, not only in her relationship to her mother, but more broadly, as a responsible neighbor and friend. This assertive book can help readers understand her, and by sharing her experience, she helps us understand ourselves.

—

Links

“Off Kilter: A Woman’s Journey to Peace with Scoliosis, Her Mother, and Her Polish Heritage”  by Linda Wisniewski
Linda Wisniewski’s Home Page
Amazon Link for Off Kilter
For another book about a daughter caring for her mother, see Carol O’Dell’s Mothering Mother
To read my essay about Mothering Mother, click here.

Bookmark and Share

Memoir about Caregiving for Mother offers lessons for life

Posted on by
4

by Jerry Waxler

According to caregiver.org 50 million people in North America are informally caring for the elderly while 8.9 million of those caregivers face the added burden of Alzheimer’s and other forms of dementia. Carol O’Dell, author of the memoir “Mothering Mother” was one of those people. Not only was her mother no longer able to care for herself. She had literally lost her mind.

There is nothing pretty about the helplessness of aging, but unless our parents and everyone we love die fast and young, at some point we can no longer push aside the recognition that aging happens. One way to prepare for that realization is by learning about the experiences of those who have gone before us. Through such lessons as offered by the memoir “Mothering Mother,” we gradually do the emotional and spiritual work to accept the variety of stages of our lifetime journey.

O’Dell built a room onto her house and invited her mother to live with her family. By becoming her mother’s primary caregiver, O’Dell immersed herself more deeply into caregiving than she anticipated. She had to set herself aside, the way a mother sets herself aside to care for a newborn. But this was no cuddly infant. This was her mother, lost in forgetting so profound, she not only forgot the past. She forgot how to be human. It’s like a horror movie in which some evil force has stolen the person’s true self, leaving behind the shell.

O’Dell didn’t have the choice to send her mother to a care facility. For one thing, she and her husband were concerned that they could not financially afford to get adequate care for her mother. For another thing, O’Dell had promised her mother  she would care for her at home.

There were times the strain was so severe she felt she was losing her own mind. Her experience was consuming, draining, demoralizing, overwhelming, even traumatic. Her memoir gives me a powerful glimpse into her emotionally complex situation. And she does it without overwhelming me. I found myself wanting to know more and actually raced along to see what would happen next.

One of the reasons I wanted to know more about her experience was to try to understand how she coped. If she could cope with this situation then there is hope for humanity. And in fact, she did exactly that. She cared for her aging, failing mother to the best of her ability and in the process earned my respect. Her ordinary life gave her the material to inform millions of people what that experience was like. While O’Dell’s experience seems overwhelming, by sharing it with us, she also shares some of the strength and sanity she gained by immersing herself so deeply into the final throes of her mother’s life.

Writing a memoir is exactly the opposite of the mental deterioration of dementia. By writing a story about taking care of someone with Alzheimer’s, O’Dell was exercising that part of her brain, the prefrontal cortex, that distinguishes humans from the other creatures on the planet. The very act of writing helps the writer cope, and once the story is written, it can be reread, reorganized, and shared. This organizational ability of the brain is the basis for much of what we consider sane and sacred about being human. While Carol O’Dell can’t erase her mother’s suffering or her own, she can write about it, choosing her words and phrases and images. These simple tools let her organize events into a story. And through this process she can reclaim some of the humanity that was lost and offer it to us as a gift.

More memoir writing resources

To see brief descriptions and links to all the essays on Memory Writers Network, click here.

To order my step-by-step how-to guide to write your memoir, click here.

Bookmark and Share