Why did we write it?
Because, like many of you, life handed us big events. Not so much me, but my wife Diane and my daughters, Jennifer and Lauren.
Diane lived through traumas most of us can’t imagine, and she was determined to share her story with the world. With luck, she had the grit to survive it, and the talent to write about it. That’s really where this book started. She and I were both writers when we met, and she continued writing all through our years together. Sometimes I helped her put together the sequence of events from her past when she couldn’t get her memories organized. So many things happened to her it was amazing she remembered any of it.
If you have read our book Incorrigible, you know most of the story. This is the backstory.
A brief synopsis
Diane was born in Minneapolis, Minnesota in 1939. Her father Charles was a high school dropout, had an unstable employment history, and worked as a bus driver most of his life. Her mother Genevieve came from a large family, but both Genevieve’s parents died by the time she was 22 years old. She married Charles about a month after Diane was born, but tried to pretend that they married a year earlier.
The family lived a stable lower middle class life until Diane was ten years old, when Genevieve was diagnosed with tuberculosis, and the family fell apart. For several years Diane lived with relatives, in foster care, alone with her father, and finally for two years at the Minnesota Home School for Girls as an “incorrigible” youth—for stealing ten dollars and for staying out overnight.
After her release from the state school, Diane’s teenage and young adult life careened from one crisis to another, bad choice after bad choice. She married a man who was wrong for her, and soon divorced him. Unmarried and pregnant, Diane knew she had to stop lying to herself and others, and take responsibility for her life and her baby. In a second marriage soon after, she wed Tom without knowing he was schizophrenic.
With her new sense of responsibility she stayed and cared for him until he fell into paranoid delusions. When she began to fear for her safety and her daughter’s, she left him and vowed to take her life in a new direction.
In a bold step to try a completely new experience, Diane backpacked into the wilderness for the first time. We met there, at Mirror Lake in the High Sierras of California.
A year later we married and moved to Colorado, far from her childhood failures and her psychotic former husband.
We had forty years together in a full and interesting life.
What happens when you take responsibility for someone’s life? Many of us had that experience when we became parents. Of course it’s more complicated with dementia: they have new, unexpected behavior; suddenly they can’t do things they’ve done for years; people familiar to them become strangers. Eventually that includes you.
In 2008, Diane was diagnosed with mild cognitive impairment. I was struck by how much I didn’t know—me, the expert on everything. At first, I could cope. By 2011 she was difficult, but not completely different from her old self. By 2012 Diane couldn’t function on her own anymore.
I retired then, and became her full-time caregiver as her condition declined into vascular dementia. Fifty-eight years of smoking Winston cigarettes was possibly the biggest factor contributing to her dementia and death.
In 2013, Diane nearly died from an internal hemorrhage caused by a fall six months earlier that led to an undiagnosed injury, which caused her bleeding. I didn’t know how to manage her, and lost my self-assurance. Her actions became bizarre at times, less in touch with reality. She had delusions, about the neighbors, about her doctor, about her parents. One day she went out for a drive, and no one knew where. After several hours we got a phone call from 40 miles away, and only because she remembered her own phone number so a stranger could call us.
I didn’t know what to do next. That’s when I reached out, and found the Alzheimer’s Association support group. I started going, and found other people who were also caring for husbands or wives with dementia. They talked about similar experiences. They listened. They understood. I had a place where I could go every week and feel sane for awhile. I listened, and learned. I was not completely alone. Her care improved.
I didn’t expect to write anything after retiring except an email or a journal entry. That changed when I started taking care of Diane, as her cognitive impairment became dementia and I became her full-time caregiver.
Spending long hours with her every day, I began keeping a journal of my days as an escape, a way of letting my experiences and feelings out while I was there by necessity. I had no intention of writing a book, but just to have some outlet for my feelings and experiences that I couldn’t talk about to anyone else. Somehow I believed it was important to have a record.
Jennifer, the daughter at the center of Diane’s renewed vision of life, had contracted Hodgkin’s lymphoma in 1981, when she was just seventeen years old. Her cancer was cured with radiation therapy, but the radiation left lasting damage to her heart and lungs.
In 2015, Jennifer died during heart surgery to attempt to repair the damage. Diane never knew.
I cared for Diane at home until she died in 2018 from cerebral vascular disease.
After Diane died, my life as a caregiver ended. My next thought was to memorialize her life by taking her ashes to the place where we met in 1967.
One does not simply walk into Mirror Lake. For the next few months Lauren and I were occupied with planning the trip. A travel blog took form, and every day we posted in it. That became the record of our odyssey to Mirror Lake and the rest of our journey. Then we were on the road for six weeks.
We set out on a nine thousand mile odyssey to return to the California wilderness and scatter Diane’s ashes at the place where we met.
During that journey we met old friends, relatives, and even a wanderer on his own pilgrimage. We bested accidents, adversity, and fatigue to complete that quest, and reconnected with our past to prepare for our future.
Digging up the past
Diane spent years revisiting her memories. She kept journals even before I met her, and I still have all of them from 1968 on. From the 1980s onward she worked diligently to recall events from her childhood. She sent away for old school records, and interrogated her parents and other family members relentlessly about their lives. They often did not want to discuss the past, out of shame and embarrassment for their sins and errors. In 1992 she started using a word processor, and, later I moved all those files over to her computer so she could continue writing the story of her life and her family. I made backup copies of everything she wrote on the computer. When her dementia began to impair her thinking she stopped writing.
She delved into her past and began the effort to reconstruct her own history out of confused memories from literally over a hundred different childhood addresses and a hundred different schools. I helped her create a way to sort her memories of specific places and experiences into the years they likely happened. I made a board that held rows of envelopes, ordered and marked for each year and school semester. As she pinned down an event or a place, she would save it in the most likely envelope. That became a spreadsheet she used as a reference to put her memories in sequence. During this period, Diane was writing her thoughts and feelings about our life together, along with the doubts and conflicts she felt as she lived through maturity and middle age. That all went into the story of her childhood, adolescence, and early adulthood; of the years before we met and the years after.
Her one overriding goal was to publish her stories. She wanted to be a published writer.
The Book Project
Once we returned, my next question was “What now?” The answer was obvious. I sat down at the computer and began. Delving into the past, poring over journals and records, writing outlines and drafts, were dry, technical tasks.
Days led to weeks, then months as I sat before my computer, filling in the silence with hours of Bach instrumental music in the background (singing interfered with my writing). I focused on recreating the history of our lives, in a somewhat disengaged way, as I was accustomed to doing for years as a technical writer. At that stage I must have been staving off emotional reactions to the material, intent on getting the story written. I think I stayed in that state throughout the project. Yes, it was a project to me. Each chapter was a step on the way to the final goal of a complete story, a story that began some time during World War Two and ended after Diane’s death in January, 2018.
The project, as I thought of it, didn’t invade my feelings until the book was finished and ready for publishing. Then I began to realize how it had changed me. After caring for Diane during her decline, I felt her as a diminished, impaired old woman, not the vibrant young woman I met fifty years earlier. But in the course of researching her life, reading her stories and journals, and recalling and retelling memories of our life together, she once more became the woman who lived, fought, and adventured with me for most of my life.
As I wrote our story, my recent memories of her as a dementia patient faded and her memory was restored as the whole woman, the woman I loved.
At the same time, revisiting Jennifer’s story opened up the anguish and grief that I couldn’t allow myself to feel when she died, while I was still caring full-time for Diane. At that time, I had to suppress and ignore those feelings, to carry on as if nothing had happened. Whenever Diane asked if Jennifer was coming over, I had to pretend that Jennifer was out of town, working on a big project in California or somewhere else. Recently I realized that when, after talking to her husband and sister, we told Jennifer’s care team to turn off her life support system, that was the hardest decision any of us ever faced, and one that still hurts.
All of the feelings that came from losing both of them are close to the surface now, and will be for some time to come.