What is the date you began writing this memoir and the date when you completed the memoir? It wasn’t a straight, even line from conception to publication, and it took longer than I originally anticipated. My memoir spans less than 6 years—from the time Alan and I met in 2005, through his diagnosis in 2006, and until his death from dementia and Alzheimer’s disease in 2011. It’s about our mid-life romance that was cut short by this horrifying disease and my ensuing grief process.
From the day Alan and I met, I’d been jotting down notes on my daily planner about our life together—dates of certain events, trips we took, and things we did. As time went on, I recorded his loss of abilities, things he could no longer do for himself that I took on for him and the things I couldn’t, and finally some of what went on during the last fourteen months of his life (which he lived in a nursing home), as well as my experiences as a caregiver.
During that time, I knew how our story would end—and sadly—but I didn’t know what would happen along the way, how I’d get through it, or what meaning or glimmer of hope I could give my readers. How could I possibly write a book without knowing all of that? Our story wasn’t over and not close to being psychologically processed. So I decided to write about the events and experiences along the way. These short memoir pieces appeared in blog posts and local and national newsletters, literary magazines, and anthologies. Some of it appears in various incarnations in Grapes. So in a way, you can say I’d been working on the book since the day we met, gathering details of our lives, noodling how everything would fit into some sort of book structure that would convey the story of our dementia journey.
After Alan died in July 2011, I began the very rough first draft of the book and finished it just before what would have been our sixth wedding anniversary in December that same year. Work on the second draft started a couple months later. But unexpectedly, it threw me into a deeper state of sadness and depression than I’d ever been in, so I stopped after a few weeks and wasn’t able to pick it back up again until several years later.
Wren Wright with Phoenix in December of 2011.
Wren Wright in May 2016.
Copyright by Wren Wright.
In May 2016 I sent the second draft to developmental editor Sheila Trask for her input and recommendations. After she returned it, I started the third and final version of the book, incorporating the edits that made sense to me. I was close to finishing the final edit when I encountered another bump in the road: an unexpected surgery that revealed a host of childhood traumas I wasn’t aware of. Once again, I had to put the draft aside as I faced, challenged, quieted, and befriended my demons.
Finally The Grapes of Dementia was published in November 2016, more than 5 years after I started the first draft but ten years after Alan was diagnosed.
Where did you do most of your writing for this memoir? And please describe in detail. I started writing the first draft at home, but I didn’t get far. I was overwhelmed with grief. I cried more than I wrote. Since I was releasing but not accomplishing much writing, I decided to try to write in coffee shops. That worked. Every day I’d write for an hour or so at a time—it was as long as I could hold back the tears. At that point, I’d pack up, go home, cry, and repeat the routine fresh the next day. I started work on the second draft at home but stopped, as I mentioned, when my grief took over.
A few years later I moved from the majesty of the Colorado mountains to the Redwood Coast of California. I lived close to the ocean and walked on the beach every day, weather permitting. The ocean called me. I’d go there, walk along the shore and face the water, its rhythm and power. I consciously inhaled the air, full of sea spray and (I learned later) healthy negative hydrogen ions that helped balance my serotonin levels to increase my mood and decrease my stress (which I didn’t believe I had but did). And then one day, after 3 months of walking along the shore, my inner guidance system led me to my laptop and opened the file I hadn’t opened for more than 3 years. And I wrote. I worked on the second draft, as well as the final manuscript, at home in my study.
What were your writing habits while writing this memoir—did you drink something as you wrote, listen to music, write in pen and paper, directly on laptop; specific time of day? I can type faster than I can make a pen go on the paper, so I write directly on my laptop. It also made it easier for me to make minor corrections and edits as I write, which I do frequently. As I was writing the first draft in coffeeshops, I’d sip on a mug of chai (with soymilk, no foam) and munch on a hazelnut biscotti. At the time, I was working a brief stint in Human Resources for a company that provided in-home caregiving to disabled adults, and when I left the office for the day, I’d stop at a coffeeshop to write for an hour or so before I went home. The coffeeshop clatter background noise soothed me.
I don’t usually listen to music as I write because it distracts me. I play the djembe drum, so it’s a given that I’ll get caught up in the beat, end up pulling out my drum to play along, or tap a pencil on the desk—anything percussive. However, when I’m stuck and don’t know where to go next in my writing or have no idea what to write, I don my headphones and tune into a Mozart violin concerto and I’m back to writing within a few minutes. I also have some CDs made by friend Gregg Hansen who plays fingerstyle guitar. His music boosts my creativity in the same way.
I wrote the second draft and final manuscript at home in my study. By that time I was fully retired, had moved out of state, and could write whenever I wanted, although I’m not much of a morning person. Oftentimes I wrote after a nice, long ramble on the beach. It refreshed and energized me, and it left me with a lot of energy to put into my writing. I also enjoy writing in the evening, so I wrote then as well.
When I started in earnest on the second draft, I got in the habit of running the television with the sound muted. I wanted to be able to periodically look up from my laptop screen and see something beautiful. The window in my study overlooked a dense forest that began just a few feet from the house, and watching the squirrels, the yellow-breasted chats and other birds come and go was sweet and calming, but it was a one-note scenario. With the TV set to a movie channel that was still showing Christmas movies, I’d look up from my writing to see glittery Christmas lights, dazzling decorations, the actors dressed in holiday attire. Sometimes there’d be snow and mountains that reminded me of Colorado. These movies were visual snippets of joy that brought me up for air before I dove back into the world of dementia.
Out of all the specific memories you write about in this memoir, which ONE MEMORY was the most emotional for you to write about? And can you share that specific excerpt with us here. The excerpt can be as short or as long as you prefer, and please provide page numbers as reference. Without a doubt, the most difficult memory to write about was the event that exponentially increased the level of Alan’s dementia. It pushed him further into his disease. While we knew there’d never be an improvement or a cure for Alan, one morning he took a fall that pushed his dementia over the edge and landed him in a more advanced stage of the illness. He was moving into the final stages of the disease, toward the end. Our relationship had been emotional all along, but this presented no doubt that the end was finally approaching. It got real. This downfall and the aftermath where Alan suffered a bad reaction to an antidepressant he was given in the hospital traumatized me and stayed with me for years afterward. I was clueless and had a difficult time writing it, crying the whole time. The PTSD imprint it left would still be with me today had I not sought treatment several years later for a different (but as it turned out), related issue—the surgery I mentioned earlier.
Since The Grapes of Dementiawas published as an ebook only, there are no page numbers. However, this excerpt is the first piece in the “Spring 2010” section of the book. Here’s the first part:
A Fall
I’m in the kitchen, making breakfast when I hear a thud. I run to the bathroom and find Alan lying on the floor. He’s taken a shower, dried off, gotten dressed.
“I don’t know what happened,” he says, unfazed. “I was brushing my hair and now I’m on the floor. I don’t know what happened or how I got here.”
I help him up, our bodies are playing pieces in a jigsaw puzzle. We’re both shaken. I think this will be the end of it, that he won’t fall again. I am wrong, at least partially. At breakfast, he has a mental fall to match his physical fall. He goes from having dementia to having DEMENTIA. He ponders the bowl of oatmeal I place in front of him. He’s working out the details of how to eat it, how to manipulate his spoon. I gently put it in his hand. His fingers can’t grasp it. So I feed him, like a baby. He opens his mouth so sweetly, like a hatchling, beak open wide, and makes chirping sounds that erupt into giggles from both of us. I “fly” the oatmeal into the hanger of his mouth. He smiles and laughs, my husband/baby boy.
The same thing happens at lunch and dinner. He doesn’t know how to feed himself and his mind can’t process my impromptu how-to lessons. So we repeat the breakfast fly-the-airplane-in-the-hanger routine. We laugh, and I spoon-feed him, not letting on how much it disturbs me. I’m not one to pray, but I pray he’ll be able to feed himself at breakfast the next morning.
He can’t.
I call his doctor. She instructs us to go to the emergency room for a battery of tests. Several hours later, he’s been admitted. All the rooms in this hospital are private, so we are alone, and this turns out to be a good thing. Out of nowhere, Alan becomes a disturbing flurry of activity.
In his hospital bed, Alan moves, moves, moves, always moving. He fusses with his blankets, tears off his hospital gown, picks at his clothes. He’s ripe with hallucinations—some pleasing to him, others not. He grasps at the air, peels bananas that aren’t there, asks me anxiously to pull the needles out of his legs. There are no needles, but I go along with it, telling him I’ve removed all of them, and he’s satisfied for a moment.
I caress the aura of his mental landscape, putting myself in his distress. I feel his helplessness and vulnerability. He can only react to his anxiety. He can only go into it and experience it. He can’t get out of it, but I don’t have to. Although I’m inside his experience, I have the choice to also be outside of it. It’s up to me to help him, to comfort him before he knows he needs it.
He says our favorite coffee shop is closing. It’s not, but I go along with it and tell him we can find another. He’s excited at the idea of finding a new coffee shop and falls asleep smiling. At last he’s quiet and content and I take a break from being on dementia alert. I’m exhausted. My toes tap out a shaky foothold on my wobbly mental landscape.
Too soon, he wakes up, restless. He flails about like a colicky infant, arms and hands and head moving in short, jerky motions, grabbing at my hair and necklace. He squeezes my hands so hard (how can he have such physical strength?) that I remove my engagement and wedding rings to head off an injury. He reaches for me, misses, unintentionally grabs and bumps and punches me.
He has a tight hold on my right thumb, and it HURTS! I manage to ask him gently to let go of my thumb. He squeezes it tighter, not understanding. Argh! Still gently coaxing him to release my thumb, I try to pull it out of his hand. This only makes him squeeze harder.
Finally, I manage to pull my thumb from his hand—and he jerks and grasps the bed, as if he were falling and my nearly broken thumb is his only lifeline. I speak softly in his ear and hold him tenderly, oblivious to the swollen thumb and to the bruises forming on my arms.
The muscle spasms in Alan’s legs begin at 6:00 p.m., slowly at first. By 6:30, they’re more frequent, more pronounced, more uncomfortable for him. Finally, the nurse tells us an order has gone to the pharmacy for something that will help. We wait, but when we check, the pharmacy hasn’t received the order. We ask the nurse to page the doctor. No reply. Page again.
The spasms come every 30-50 seconds, and they’re so strong and painful that Alan’s back arches during each attack. It’s frightening and hard, so hard, to see Alan go through this and not be able to help him. I rise from my chair, both of my hands holding Alan’s hand, and fix my eyes on him. What to do? I ask the universe. Calm, it says. Invoke tranquility for him. I do, but it doesn’t seem to help.
The only way past it is through it.
This is no comfort.
Still no doctor. Why? The nurse says the doctor is busy in the emergency room with some admissions. What? This is an emergency. Can’t she see this is an emergency? We’re already in the hospital. We’re already here! She wouldn’t have to admit us. We’re here! Why have we been put on hold when we’re already here and need help NOW? My husband’s current state is an emergency and it’s been going on for hours—far too long.
Firmly, with assertive innocence, I say to the nurse, “I have an idea. Here’s how we get some relief for Alan. Here’s how we get him to see a doctor. Let’s take him downstairs to the emergency room! A doctor will see him there!” And I start to gather our things for the trip downstairs, although I have no idea what I’m doing or how I’ll get him down there. The nurse looks at me as if I were a misbehaving child, as if I had just been admitted to the psychiatric ward, as if I were speaking an ancient Egyptian dialect. The nurse frowns, then goes blank, turns briskly, and leaves the room. I busy myself with figuring out the mechanics of the hospital bed, fully intending to take Alan to the emergency room.
Within two minutes, the doctor moseys in. It had been two and a half hours since the start of Alan’s muscle spasm ordeal. Two and a half hours of excruciating pain for him, two and a half hours of non-stop adrenalin-pumping, psychological and physical trauma for me. Two and a half hours of trauma in a place that’s dedicated to healing but instead perpetuated this larger-than-life ordeal. The doctor gives Alan a small dose of morphine. It relaxes his muscles enough to allow him a fitful sleep. Finally, relief for my sweet Alan. He’s not out of the woods yet, but now he can rest.
I, on the other hand, am a mess. My psyche had been crying all day, hurting all day. I stay with Alan until late in the night, after doctors and nurses assure me he’ll sleep until morning, that he’ll be fine. I need to take care of myself, too, they insist. I wouldn’t have had to, I think, if they had done what I begged them to do when I first asked.
At home, I weep into the wee morning hours. I let go of all that we had been through since Alan’s fall. I weep for having traveled through the deepest, darkest jungle without a map or chart to guide us. I shed tears from the stress of having battled monsters and demons and more monsters and demons. I howl and wail and whimper, sob. I mourn for the man I first met—so gentle and present, alert, alive—the mystic in English professor clothing who was available for anyone who spoke with him, who gave all his attention to whatever was in front of him. I cry for that man who is not here and cannot be here.
After my weeping and sobbing and tears stop, I wonder over the ordinariness of how one single fall—a slip at home, on the bathroom floor—can change a life, two lives. When Alan fell, our world downshifted with a powerful thud. Today we crawled through hell, and we came out the other side, still very much apart, and still very much connected. I should be pleased, but I’m unraveled, exhausted. This disease is ramping up. It’s sure to bring more craziness. The best I can do is hold Alan’s hand as we wait for it, forever in fight mode, with no choice but to allow it.
Can you describe the step-by-step process of writing about this ONE MEMORY? I wrote the first draft of this memory at 11:00 p.m. the same day it happened. It was fresh in my mind, and even though I was exhausted from all that had transpired that day and the days before, all I could think about was writing it down, capturing the juice of the experience. I woke up my laptop and vented and vomited words onto the screen. Because the experience was fresh, I spilled it out like so much raw sewage, unprocessed, coarse. I cried and sobbed and wailed as I wrote it.
While later edits to that section were minor—mostly adding bits and pieces here and there for reader clarity—I nevertheless cried and sobbed and wailed through them all until I came to the final read-through just before publishing. I credit the difference to the EMDR (Eye Movement Desensitization and Reprocessing) therapy I went through a few months after the surgery I already mentioned. After EMDR, my psyche was then able to file those memories in the proper portion of my brain—along with the memory of Alan’s fall and hospital ordeal, since it was a comparable memory. Those memories are still there and accessible, of course, but the charge that accompanied them is not. I was then able to resume writing with greater concentration, focus, and clarity.
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