Tag Archives: Alzheimer’s

Caregiver on a Hero’s Journey – a model for your memoir

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by Jerry Waxler

Author of Memoir Revolution: a guide to memoirs, including yours.

Martha Stettinius’ life shifted rapidly from the ordinary challenges of raising a family to the extraordinary and disturbing responsibility of caring for a mother with Alzheimer’s. Martha scrambled to adapt, reaching outward to the mental healthcare community and inward toward deeper understanding. Thanks to the changes taking place in the literary landscape of the twenty-first century, Stettinius also took advantage of an ancient method to help her maintain her courage. The method, handed down in an unbroken chain since the dawn of civilization, is called Story.

I first learned about the importance of stories from a series of televised interviews that journalist Bill Moyers conducted with scholar Joseph Campbell. According to Campbell, every society in history has relied on a type of story he called the Hero’s Journey. When I first heard these ideas, they seemed quaint and archaic. The examples I knew, such as the Greek gods on Mount Olympus and the wolves and witches of Grimm’s Fairy Tales seemed out of step with modern life. I assumed Campbell’s observations had nothing to do with me.

However, when I began reading and analyzing memoirs, I discovered that Joseph Campbell’s model of the Hero’s Journey sheds light on the story structure used by contemporary memoir writers. Even though the details change from person to person and era to era, their underlying structure remains the same. The Hero’s Journey throughout human history has allowed us to discover that when facing difficult situations, we can rise to our higher selves.

Take for example the courageous work of Martha Stettinius, who had to care for her mother. In the following synopsis I show how her experience as a caregiver, as described in Inside the Dementia Epidemic, mirrors the Hero’s Journey. By discovering the structure within her memoir, you might get some good ideas about  to turn your own heroic struggles into a story.

Caregiving for Her Mother as a Hero’s Journey
Stettinius’ journey  starts in the familiar world of her home, taking care of her family, going to work, and getting through each day. Life goes on normally until her mother’s neighbors call with bad news. When her mother’s mental health deteriorates far enough, Stettinius is booted out of her normal life and in the terminology of the Hero’s Journey model, she is “called to adventure.”

A dementia ward is a radical departure from every day life. She has to challenge herself to enter their world. What do you say these people? How do you love them? Who are these caregivers and how can you participate with them to serve your mother?

The shocking transition from the ordinary world to the world of the adventure is summed up by the famous line in Wizard of Oz. When Dorothy emerges into colorful land of Oz, and looks around at dancing munchkins, the good witch says, “You’re not in Kansas anymore.”

To fit into this new land, Stettinius has to slow the pace of her own mind. By listening to the silences between words and tuning into her mother’s body language, she seeks a new basis for communication. She searches for the best people and institutions, learning how each one works, and striving to find ones that can help the most. Throughout the long middle, she overcomes discomfort and fears, and works diligently to partner with the staff who take care of her mother.

As a result of her heroic response, she grows more knowledgeable and confident, developing into a deeper, more mature version of herself.  By the end of the journey she has also grown closer to her mother. The story that began with pride of independence when the two women were apart ends in the pride of inter-dependence now that they have come together.

Telling the story is a heroic journey, too
After the story of Stettinus caring for her mother ends, another chapter begins. To become important to others, the story must be told. So Stettinius switches roles from the adventurer inside the story to the writer-hero sitting at her keyboard. By striving to tell her story in compelling scenes, she lets us release our grip on our own reality and enter hers.

Her instinct to share her wisdom fits perfectly with Joseph Campbell’s model of the Hero’s Journey. According to him, after the hero finishes the adventure, he or she returns home to offer lessons. In Native American stories, at the end of the adventure the hero returns with some magic ellixir or ritual that will help the tribe. In Lord of the Rings, the whole purpose of Frodo’s mission is to save the world from annihilation.

However, not all heroes return home to deliver wisdom. Ever since I read Homer’s Odyssey in high school, I wondered why the Greeks held Ulysses in such high regard. He was often self-serving and impulsive and when he finally arrived home, his own townspeople turned against him. What was I supposed to learn?

Now that I’m studying memoirs, I realize that there were two journeys represented in the Odyssey, and the second one was at least as important as the first. After Ulysses returned home, the next Hero’s Journey was traveled by Homer. Thanks to tireless composition, and then a lifetime of promotion, Homer turned the Cyclops, Scylla and Charybdis, the Lotus Eaters and a houseful of predatory suitors into cautionary tales, appreciated by readers for thousands of years.

Memoirs blur the lines between these two principle players. In memoirs, the protagonist-hero goes on adventures not to slay monsters, but rather to slay inner demons. Despite our falls and failings we strive to climb the mountains of dignity and mutual respect.  After we return from our adventures and think about what we have been through, we shift roles from adventurer to bard.

By telling the story, Homer transformed a life of suffering and adventure into shared wisdom. Martha Stettinius did the same thing when she chose to write Inside the Dementia Epidemic. Her willingness to share this story with others reflects this underlying desire of human nature. After our years of experience, we are drawn to find the story.

I can see Martha Stettinius’ heroism in both roles. As the protagonist she had to go forth and take care of her mother. Then as the storywriter, she had to endure the discomfort, expense and hard work of sharing her wisdom with her readers.

When memoir writers share experience with readers, everyone wins. The author gains wisdom by turning apparently haphazard events into a meaningful story. And readers take advantage of that work. Through the hypnotic experience of reading a good story, readers enter into the author’s world. Then they take away the gift, the magic elixir. Memoir readers apply the courage and lessons of the Hero’s Journey to their own lives and build up their own reservoir of hope.

Notes

Martha Stettinius’ home page

Inside the Dementia Epidemic on Amazon

For brief descriptions and links to all the posts on Memory Writers Network, click here.

To order my book Memoir Revolution about the powerful trend to create, connect, and learn, see the Amazon page for eBook or Paperback.

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

A Practical Philosophy of Love Revealed in this Memoir

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by Jerry Waxler

Author of Memoir Revolution: a guide to memoirs, including yours.

Martha Stettinius’ memoir, Inside the Dementia Epidemic, took me on a journey in which the author had to fulfill her new role as primary caregiver. By the time I closed the book, I felt inspired and hopeful. How could a book about Alzheimer’s have that effect? Clearly she wasn’t promising that Alzheimer’s would be cured. I wondered for months how to explain the effect the book had on me. What is it about her storytelling that could possibly convert the gritty realities of a failing mind into a reason for people of good will to band together and generate hope?

Based on these considerations, I offer four philosophical conclusions. Two of them are embedded in the book itself, and two of them arise from the very fact that the book exists.

Practical Philosophy Point #1: This is still the person I love
I watched my own mother drift in and out of dementia in the last weeks of her life. Even when her words were scrambled, she was still “there” somewhere. Because the experiences were brief, I did not need to dig within myself for a deeper understanding. I just rode through each episode, never doubting our connection.

In Inside the Dementia Epidemic the downward slide took place over a much longer period, forcing this daughter to come to terms with the notion of a person who exists on the other side of a cognitive divide. In her memoir, she painstakingly traces her own path from confusion to effort and hope. To maintain her own dignity as well as her mother’s, Stettinius focuses on the love between them.

She slows down to adapt to her mother’s new speed, and allows us to slow down with her. At this more intimate pace, she discovers a heartfelt connection, unencumbered by former, edgy patterns. By relying on this core of love, the memoir offers a perspective of the self that is deeper than the one visible on the surface. Despite her mother’s weakened cognitive ability, their relationship continues to evolve.

During Stettinius’ journey, we travel with the two women along a path toward gradually increasing wisdom about contact, mutual respect and love.

Practical Philosophy Point #2: Social support is the highest good
When I was growing up, I mocked the schmaltzy song lyrics, “people who need people are the luckiest people in the world.” My power came from pure knowledge. I never questioned the wisdom of this self-reliant philosophy until it pushed me into such severe loneliness I thought I was losing my mind.

To escape my isolation, I was forced to reach out for help. When I did so, a few caring souls noticed my need and reached back. The nurturing of friends and supporters ushered me into a much more satisfying version of adult life. My appreciation for interdependence continues to deepen.

Hillary Clinton’s book It Takes a Village to Raise a Child brought attention to our shared responsibility toward children. My disastrous experiment to grow up without social support revealed that it takes a village to raise a young adult. Over the middle decades of my life, I gained an ever-increasing appreciation for the importance of the village throughout adulthood, embracing the fact that our relationships are crucial for moral, mental, and emotional survival.

Early in my memoir-reading journey, I came upon an author who spent a lifetime trying to find words to explain this need humans have for each other. In her memoir Here If You Need Me, Kate Braestrup loses her husband in a freak accident and must raise her children without him. To support her family, she becomes a police chaplain, a job that requires her to console people after crime, accidents and other suffering. In her darkest hour, she recognizes that the support people pour out to each other is the crucial ingredient, the antidote to evil. Through her eyes, social support is the highest moral achievement. (See my article here)

And now, in Inside the Dementia Epidemic, Martha Stettinius shows how the village plays a crucial role in aging. To care for her mother, she needed an army of helpers. By highlighting the caregivers who participated in her mother’s care, the book lifts us out of isolation and into the support of the community.

In my next post, I offer two more practical philosophy points that I derive from the book Inside the Dementia Epidemic.

Notes

Martha Stettinius’ home page

Inside the Dementia Epidemic on Amazon

For brief descriptions and links to all the posts on Memory Writers Network, click here.

To order my book Memoir Revolution about the powerful trend to create, connect, and learn, see the Amazon page for eBook or Paperback.

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

Lost Memories: A Daughter’s Memoir about her Demented Mom

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by Jerry Waxler

Read Memoir Revolution to learn why now is the perfect time to write your memoir.

When Martha Stettinius reached young adulthood, she and her fiercely independent mom parted ways. Years later, Mom’s cognitive decline forced the two women to reunite. After grasping the seriousness of her mother’s condition, Stettinius gradually incorporated this extra responsibility in her already busy life.

As a novice Alzheimer’s caregiver, Martha had much to learn. She quickly realized her mother needed more care than she was able to offer at home. Through experimentation and research, Stettinius learned about the types of facilities, and the theories behind them. So over time, two things were taking place. Stettinius was gaining expertise in what it takes for a daughter to care for a mother with Alzheimer’s. And at the same time, she had to relearn her relationship with her mother. In a surprising twist, this opportunity to care for her mother became the culmination of their mother-daughter relationship.

Martha Stettinius chronicles their journey in the memoir Inside the Dementia Epidemic. The memoir works on multiple levels. First, is Stettinius’ attempt to make sense of her evolving relationship with her mother. Second, is the story of her growing need to find the best care possible. And third is her desire to share this important information with others who face similar challenges. To achieve these three things, Stettinius was determined to create a readable, interesting book.

An unusual story of mother-daughter bonding
Since her mother often didn’t even seem to be tracking their conversation, Stettinius needed to learn new rules. One thing she learned about caregiving for Alzheimer’s was that since her mother was losing touch with the past, it was the daughter’s responsibility to do the remembering for both of them.

When the author tells her mother, “I love you,” it’s difficult to know if Mom’s smile was connected to the moment or was only an automatic reflex. Stettinius solves the dilemma by choosing to infuse her mother’s smiles and words with their shared history. Through Stettinius eyes, mutual love informs every syllable and gesture.

In the early stages of writing the book, Martha intended to use it as a way to hold on to her mother’s rapidly fading past. As the book evolved, she discovered that her relationship with her mother was actually growing deeper. She wanted to share this hopeful message with others in similar situations. And more practically, she wanted to help others learn the ins and outs of the Alzheimer’s caregiving experience.

With these goals in mind, she fretted that too much specific information about her mother’s life would shift the reader’s focus into the past. However, she was also concerned that too little would leave the reader without context. As a memoir writer, Stettinius had to decide how much of her mother’s actual history should she include in the memoir.

She decided to focus mainly on the mission to help readers learn from her experience. To achieve the goal, she applied her best understanding of craft, sought feedback, and revised again and again. Eventually, informed by feedback from editors, beta readers, and her own intuition, she decided that to reach readers in the most meaningful way, she had to reduce the backstory to a minimum.

The resulting book neither drags us back in time, nor ignores the past. Rather it offers an alchemical fusion of both. By turning confusing events into a narrative, she makes more sense of them for herself. By publishing the story she turns her painful experience into lessons that could help others.

Writing Prompt
What experience in your life could help someone else? Write an overview of such a story, or write a scene in which you learned a lesson you wish you could share.

Backstory: How to Find the “Right” Amount in Your Memoir
Many memoir writers struggle with the question about how much backstory to include. Too little risks lack of context. Too much could bog down the story. To assist with your decision, consider the example of Inside the Dementia Epidemic. Stettinius researched her mother’s life, and wanted to tell it to the world. However, in order to write a book that would be meaningful to readers, she chose to cut back on the detail about her mother’s younger years.

The resulting memoir centers on the daughter’s journey to care for her mother, a powerful story involving the progression of the disease and the relationship of the two women. As readers, we benefit from her hard work and commitment to her craft. However, in order to fit it all into a good story, she had to compromise. Only the author knows about the painful decision to cut interesting anecdotes.

When making decisions about your own memoir, there is no “right” and “wrong.” Your story emerges from your specific circumstances. From this raw material, you must shape a story that will convey your meaning to readers.

To make the most informed decision about how to construct your final version, get feedback from readers. And also expand your options by reading memoirs. After you read each one, ask yourself “What is it about this story that makes this particular literary choice effective, or not?”

When you finally publish the book, it will have gone through a series of such difficult decisions. And of course, none of them are perfect. You are simply doing your best to offer readers the most interesting possible representation of your experience.

For another article on how much backstory to include in your memoir, click here.

Writing Prompt
Write a synopsis of your proposed memoir. In one version, include your early life to show the reader how you grew up. In a second version of the synopsis, start at a later time, with a central dilemma or challenge in your life. Is there enough information in this second version to allow readers to experience the emotions you are trying to communicate? Are there things about your early life you want to explore in the story? How do you feel about these two books? Which one would focus the reader and help them understand your experience in the way you intend?

Other memoirs about caring for those who can’t care for themselves
When Stettinius attempted to write about Alzheimer’s, she was not speaking as an expert, but as a daughter whose life that had been profoundly altered by the problem. Carol O’dell was in a similar situation. After caring for her mother with Alzheimer’s she wrote Mothering Mother. When Diane Ackerman’s husband had a severe stroke, she knew a lot about the brain but hardly anything about caring for someone with a dysfunctional one. She wrote a fascinating account of caregiving for him after he lost his ability to speak in 100 Names of Love.

Jill Bolte Taylor was a brain expert but that didn’t help her when she suffered a massive stroke. She wrote about her recovery in My Stroke of Insight. Even though Jill Bolte Taylor’s book is about her own stroke, caregiving plays an important role in her story. The person who came to her rescue was none other than her own mother who helped her daughter in her hour of darkest need, a reminder that even in adulthood, service between parents and children can flow in both directions.

Notes

Martha Stettinius’ home page

Inside the Dementia Epidemic on Amazon

For brief descriptions and links to all the posts on Memory Writers Network, click here.

To order my book Memoir Revolution about the powerful trend to create, connect, and learn, see the Amazon page for eBook or Paperback.

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

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

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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.

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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/

The powerful story of an ordinary woman

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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.

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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.

Memoir about Caregiving for Mother offers lessons for life

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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.