Dear Lisa,
I began a memoir project with my dad four years ago. It’s been an incredibly healing process to write together about his alcoholism and how it affected our family, as well as how his commitment to sobriety changed everything for the better. There are moments in our writing sessions that helped my inner, hurt child to know that I was always loved, even within the shadow of his addiction.
Last year, our family received devastating news. My dad was in the beginning stages of Alzheimer’s. Though the book is almost done, we are still working on some developmental edits which require his input. As he loses his capacity to remember, the process of editing has been hard on both of us. We meet together once a week, and often times he can’t remember the edits we made last week. Or, he fights me on a change we already agreed upon months before. As much as it frustrates me to rehash decisions, I know it’s even more frustrating for him. When I press him for details about a particular scene, he can’t remember them. You can see the pain in his eyes as he tries to pull sight, sound, texture and memory from some trapped vault inside him. He’s beginning to cancel our weekly writing dates.
I want nothing more than to finish this book. But I don’t want to do it for the sake of my ego. I truly see this book as a spiritual journey that has the ability to help so many families beyond ours. How do I gently work with my dad to finish our book before this disease claims more of his mind?
Sincerely,
Clear Eyes, Broken Heart, I Don’t Wanna Lose Him
…..
Dear Clear Eyes,
First, I’d like to say wow. Many stories have been written about the heartache and strife that abound in alcoholic family systems. Few provide a roadmap for forgiveness and reconciliation. The world needs your book.
I’m deeply sorry your story has taken such a dramatic and difficult turn. I could offer you platitudes about the gifts inherent in chronic illness and the lessons you’ll learn, or how this very experience may become your next book. But let’s face it, Alzheimer’s disease sucks. It’s an unfair illness that strips away a person’s time and memory and robs the world of someone who’s deeply loved.
Your letter includes questions about how to honor your father and the work you’ve done together. Co-authoring a book under optimal circumstances can be a trying experience, but add intermittent cognitive impairment or cognitive decline to the mix, and the challenges are monumental. It’s likely you developed a variety of effective processes and routines over your four-year book journey, but it’s clear they’re no longer working. You see the pain in your father’s eyes as he tries and fails to remember certain pastimes, and seeing that pain breaks your heart. That pain is stalling your writing process. The first step in bringing him back to the writing desk is to understand more about his experience so that you can help him regain some agency and control over the process.
Unfortunately, I can’t give you a glimpse inside your father’s head, but I can share my personal experience of living with dementia-like symptoms. In 2012, I was diagnosed with Lyme disease. At the peak of my illness, it felt like I had a combination of the flu, rheumatoid arthritis, and Alzheimer’s disease. During the first two years of my recovery, I couldn’t read a book, not because I couldn’t read words, but because they made no sense. When speaking, I lost words, sentences, and conversation topics. Sometimes, they sat cruelly on the tip of my tongue—just a hairs-breadth beyond reach. I’d point to a plate and know I was looking at a plate, but I couldn’t say the word plate no matter how hard I tried. Once, I lost the concept of long division—every single part of it. Keys ended up in the refrigerator and the milk in my backpack. I’d stand in rooms unsure why I was there. Getting lost on my way to the store became the norm.
I never knew when my symptoms would occur. Some days, I felt completely fine and I’d believe the worst was over. But oftentimes, the following day I would have no idea what was going on. To compensate, I faked my way through meetings and conversations by thoughtfully grabbing my chin and offering extra-long pauses or rambling in hopes that I sounded smart. But rambling made me lose focus and the pauses, well, they just amplified my panic. These symptoms were always worse in the evening, something referred to as sundowning. Some nights, all I could do was nod. Each loss reminded me that my body was failing, but what kept me up at night was wondering about all the things I didn’t know I had lost.
Losing ideas and memories is maddening and terrifying. To compensate, I shrunk my life down to what felt like a manageable size. I quit my job, and not wanting friends and colleagues to witness my decline, avoided other people and situations that caused me stress (which was just about everything). In some ways, shrinking down my life minimized my symptoms, but it also made me feel powerless, incapable, and devoid of purpose.
We carry these identities inside us. Mother. Father. Teacher. Doctor. Smart Person. For me, intelligence was the one quality I could always count on. But the day I lost long division, my Smart Person identity vanished. In its wake, I felt a soul-crushing grief over what I had lost and what I anticipated losing. It’s likely your father is experiencing a similar identity crisis. Perhaps the one thing he always relied on is no longer dependable.
I am very aware that while there may be some overlap in our experiences, there are some key differences. Though my experience felt like it would last forever, it didn’t. I got well. Your father is at a different stage in his life and has a different prognosis. If he’s willing to talk about his experience, try to find out about the pain you see behind his eyes, so he doesn’t have to carry this burden alone. The more you discuss it, the more you can find ways to cope.
In your letter, Clear Eyes, you mention your father’s struggle to remember what you’ve agreed upon during prior writing sessions. The pain and frustration you are both experiencing hits me in the lungs so hard it stifles my breath. It’s terrible to forget and to have your ideas forgotten. I can see why this breaks your heart and why he may not be calling you back. Your writing sessions could be amplifying the grief he feels about his disease while it also causes feelings about old disappointments to resurface.
Empowering your father will be the key to bringing him back to your writing desk. When I was sick, certain aspects of my brain worked better than others. I’ve never been good with auditory directions, but even during the periods when I couldn’t speak or read, I could still write down my thoughts. Signposts and visual aids helped me remember what I needed to do next. My computer monitor was—and still is—a mosaic of Post-It notes. Some people use notecards or alarms. Other people work best when they can touch or manipulate textured objects like fuzzy sweaters or glass Coke bottles to stimulate memory. As you develop your new working relationship, identify and play to your father’s cognitive strengths.
At the end of your writing session, record your plans for moving forward in your father’s strongest modality, be that a written plan, or an audio or video recording. Have him summarize and record the ideas in his own words. Because his disease is degenerative, he may need to create a script now that he can read before he begins to remind him that this is your mutually agreed upon plan. Encourage your father to review the plan either privately or with you before you start your next writing session so the content is fresh.
As you revamp your writing process, consider the time of day that you write together. As best you’re able, schedule your meetings around your father’s best hours of the day. Your father may function best early in the morning, midday, or later in the afternoon. Follow his lead. It will minimize the frustrations you both feel as a result of his symptoms.
All of this leads to the final question in your letter: how to access your father’s stories when he can’t remember. It’s likely some of your father’s memories are still stable, though he may need cues to prime his memory pump. You can do this with photographs and other visual stimuli from the time you’re trying to capture, but don’t underestimate the power of other senses. Songs from that time period, familiar foods, a family member’s cologne, and phone calls from old friends can serve as powerful memory triggers. If he’s willing and you’re able, consider video recording phone calls with people who knew him at that time you’re writing about. In a relaxed state, these conversations could help him access memories he couldn’t otherwise retrieve. As you watch the videos, pay attention to your father’s words and his body language. His expressions and gestures may give you insight into the flavor of that time period when his words cannot. These videos will be invaluable, especially if your revision process exceeds his capacity to help out.
When he can’t remember, relaxation is key. If I forgot something I knew, forcing the issue was futile. Moving on or trying again later frequently helped me express myself. But I also learned another useful trick: talking around the subject. Instead of getting angry with myself because I couldn’t say the world plate, I’d say all the words around plate—round, eat, that thing you put food on. My non-sequiturs frequently made me laugh so hard I retrieved the word I was looking for.
There’s a fist in my heart as I say this, but some of his memories may be lost, except as impressions. And yet, even these impressions may lead to something beautiful. I invite the two of you to create mandalas for key time periods in your book—ones that rely on shapes and colors instead of words. Perhaps you’ll find your father sees the time period as hazy blue with a trace of red while you see it as a dollop of green. Maybe you both have a swipe of yellow. You can also create collages using old magazines or create playlists on Spotify for important time periods. Go to thrift shops or antique stores and see if he can create an outfit or a dinner setting that stands in for a memory. Perhaps there’s a menu for that time. Instead of fighting against Alzheimer’s and your father’s memory loss, make it part of the story. Exploring the significance of what he cannot remember may be just as useful as the memories you recover. I realize these suggestions may feel tangential to the project you are working on, Clear Eyes, but they may offer you a poetic entryway into those crucial chapters that may not otherwise exist.
To work as a team requires enormous creativity and flexibility. You’ve spent four years practicing these skills and while the universe has given you a major detour, you have what it takes to pivot. As you continue to work on this book, remember that your father is still in there. While he may be struggling, he retains a vitality and purpose that are important to this book.
Somebody I Used to Know is the Sunday Times bestselling memoir by Wendy Mitchell. Her memoir is proof that people living with dementia still have a story to tell. I spoke to her while crafting this post. She had this to say about her illness. “We all had talents before a diagnosis of dementia, we don’t suddenly lose them overnight. We simply need help and the support of those around us to outmaneuver the challenges dementia throws in our direction.”
I know you will outmaneuver the challenges you’re facing and complete this book. It will be a huge gift to you, your father, and your family. More importantly, your book will provide us with a desperately needed roadmap for broken families that wish to be whole.
Warmly,
Lisa Ellison