Tag Archives: dementia

Practical Philosophy in Memoirs, Pt 3

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by Jerry Waxler

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

When Martha Stettinius’ mother became ill, Stettinius was forced to enter a world she would certainly never have entered voluntarily. Once inside, she learned much, about her relationship with her mother, her own compassion and willingness to help, and the impact the disease is having on her community.

When Stettinius lived through the events, she had to cope with the challenges and setbacks. When she turned the events into a memoir, Inside the Dementia Epidemic, she offers two important aspects of her experience  — her journey as a caregiver and her journey as a writer. By reading the memoir closely and thinking about what I’ve read, I draw lessons from both aspects.

In my previous post, I proposed two practical ideas that are embedded inside the author’s story of caring for her mother. Today, I describe two more healing notions. These philosophical points are apparent when I step back and consider the passion and effort that Martha Stettinius poured into this project. By turning her complex, often-painful experience into the shape of a memoir, she offers a path others can follow.

Practical Philosophy Point #3: The container of Story helps transcend suffering
Before writing a memoir, my entire life was contained in the raw collection of my memories. The limitations of memory seemed so natural and normal, I didn’t question them. However, after I learned about memoir writing, I began writing anecdotes and watched a narrative take shape on the page. Having embarked on this mission, I realized that memory provides a haphazard, emotionally inadequate way to understand my own past.

One reason why memories are inferior to writing can be found in the way our brains are constructed. In order to keep us safe, our brains are loaded with trigger points that set our teeth on edge as soon as an unpleasant memory comes into view. Another reason memories are inadequate is that they are stored in random order. When we remember our past, the sequence is jumbled and it’s difficult to remember how one thing led to another. As a result of these two features of memory, we tend to see our past as a collage of emotionally-loaded snapshots.

A memoir writer extracts this raw material from its messy piles and through hours of craft converts it into a well-constructed story. Stories are the containers that humans have invented to help structure the past, and the future, into a coherent whole. By the time a memoir has been structured, revised and polished, these same events are seen as steps along a purposeful path.

Martha Stettinius applied this process to her own experience. She constructed a story from the events of caring for her mother. On the pages of her manuscript, she reveals the purposeful courage to support her mother. She becomes the hero of the journey rather than its victim. By transforming the mundane reality of caregiving for Alzheimer’s into a Story, she offers us the image of a woman who discovers truths, overcomes difficulty, and finds love in the gritty spaces between challenges. By sharing the memoir with us, Stettinius elevates our imagination to that same hope that stories have been lifting us to since the beginning of time.

Practical Philosophy Point #4: Memoir transforms private experience into public service
To care for her mother, Stettinius was forced to learn about the stages and treatment of the disease. She reached out to the caregiving community where she found support not only for her mother but for herself. With their help, she learned and grew, gradually becoming a sophisticated partner in her mother’s care.

As the long, harsh journey continued, Martha Stettinius knew things she wished someone had told her when she started. She wanted to share this knowledge with others. This generous impulse required another round of learning. She would have to extend her expertise from caring for Alzheimer’s to writing about it. This attempt became a journey in its own right. She had to improve her skills sufficiently to craft a readable book. By attempting to write a memoir, she would provide information as well as solace to those who entered the dementia epidemic.

The instinct to seek community through the act of storytelling lies at the heart of the Memoir Revolution. Memoir readers want to deeply understand how others have lived. However, they don’t want to learn about someone who meandered through life. A good story has passion and forward motion. So every memoir author must go on the journey to shape their experience. In the publishable book, the protagonist moves purposefully through setbacks, carrying readers along to some goal.

The purposeful experience of the protagonist in a story follows the advice of psychologist Viktor Frankl. In his memoir Man’s Search for Meaning, he observed that living with purpose makes the difference between life and death, health and disease. He said that to stay healthy all of us need to live for something greater than ourselves.

Every memoir author attempts to follow Viktor Frankl’s advice, not once but twice. First they look back at life and highlight the purpose that drove them from the beginning of the book to the end. And second, they following the purpose of sharing this experience with the world.

Martha Stettinius’ memoir embodies such a two-stage search for a purpose. First she had to care for her mother while maintaining dignity and love. Second, she had  to share her wisdom with the world. By writing the memoir, Inside the Dementia Epidemic, Stettinius transforms, Alzheimer’s Disease, one of the great challenges of the twenty first century, into Memoir, one of the new century’s most exciting creative developments, converting her mother’s illness into a message of healing and community

The construction of this book demonstrates that by writing a memoir, each of us can transform life experience from a sequence of events into a purposeful story. Constructing the story lets us exert authorial control over the messy process of being human. Giving the story to others allows readers to see the world through our eyes. They can use stories as they see fit: to increase empathy, to create community, to learn information, and to increase collective wisdom.

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.

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.