September 21, 2020 by jas
Books seldom have the whole story. They begin somewhere and end somewhere else. Always there are pieces of the story not included for any number of reasons. Even a memoir cannot be a detailed rerun of life. Sometimes a backstory can fill in a few gaps!
In the series Accepting the Gift of Caregiving, the two books are limited to My Love’s illnesses and behaviours plus my caregiving challenges, responses, and emotions.
A friend challenged me to to re-awaken the spirit that originally brought the books to life to create a backstory.
This is what arrived on my screen when I asked my writing genie what a backstory would look like…. quick, under-discussed sentences…there is probably a bigger connection than you would ever realize.
My wish for the Accepting the Gift of Caregiving series,“Is There Any Ice Cream?” and “Did You Hide the Cookies?” is that our stories will introduce insights and a sense of ‘what if’ to caregivers who are alone and unaware.
I felt a little encouragement laced with humor might reassure those who have no choice but to care for one with various fatal diseases.
THE TITLES and THE STORY
THE TITLES: It is not always obvious why books have a certain title. This is the basis for these two books.
My definitiion of resilience: Capacity to recover from abnormal circumstances.
Examples of resilience in my caregiving experiences: The most ‘abnormal situation’ I have faced has been aggression from my LO. For the most part, his aggression is under control now, but I have learned from it and from other experiences of “abnormal circumstances.”
Distraction, or intervention, is a great tool. It often helps me gain back the situation. I always resort to: “is there any ice cream?” because it works! You would not believe the shift in intensity. It does not always last, and so then, I have to ask: “did you hide the cookies?” and, of course, both questions require thought on his Alzheimer’s brain, which requires a mental shift. Again, the aggression usually dissipates quicker this way. Thankfully, under medication, it has not been such an issue. That was resilience I could create…for me, for my LO and for the situation.
BUT that taught me the value of intervention, distraction and the importance of “recovering from abnormal circumstances,” the importance of resilience. I can recover using those statements, knowing I will get his attention away from the abnormal situation.
(Thus, of course, the source of the names of my two caregiving books…in case anyone wondered how such titles could ever apply to caregiving!!)🥰
THE STORY: Today, we are over nine years from My Love’s day of diagnosis of COPD, Alzheimer’s, vascular dementia, and anxiety, and are currently living in the Canadian isolation of coronavirus – just the two of us, together for over a year. In addition to my normal daily housekeeping tasks, I shower him, shave him, cut his hair and nails, and help with putting on his Tena briefs and outer pants. I button his shirts and buckle the belt that he loves so much I sewed belt loops on his pull-ups so he’d feel dressed. I cut up his food and monitor every pill he takes so I don’t find them in his pocket, on the floor, or under the couch cushion. I read to him, play music for him, and choose the older movies because he recognizes actor names. He sits contentedly, uninterested in most projects I offer.
He paints some, but nothing like he used to. We don’t even ‘wash dishes’ together anymore. I wash, dry and put away, while he supervises. We clean house together – I dust and vacuum, he holds the vacuum cord, watching to be sure I have gotten all the dirt. At night, I sleep with one eye open and keep the door locked, with dog bells hanging off the knob. I put bright glow tape on the walls, so he is guided in the dark of night.
Early on, I created a temporary desk setup in the dining room…we have eaten only from tray tables these last nine years. I can work, write, and do personal business, from my Yamaha stand with a repurposed 12″ x 36″ book shelf that holds my laptop and monitor sitting on a spice rack spinner. Both are boosted up by various sized thick books to reach eye level. It’s the epitome of an improvised, “cobbled together,” workspace.
My centrally located station has replaced my separate office for so long that many office supplies have migrated and are now spread across the floor beside me…I close my eyes to the surrounding chaos. I am just feet away from My Love sitting across the room, while he still feels independent. But from where I sit I can observe ‘behaviours’ in the living room and ‘hot spots’ in the kitchen…like the stove knobs and the cookie jar! I am present, yet I can escape into my work without him suspecting my mind is having ‘respite.’
My earlier life did not include anyone with Alzheimer’s…I had no dots to connect, no reason to suspect our lives were headed down such a path.
Looking back I can see there were any number of clues that My Love was showing signs that, if I had been familiar with memory loss, I might have detected as red flags.
At my mother’s memorial, five years before diagnosis, I asked My Love to take the family picture…push a button on my little point-and-shoot camera. Sadly, I did not foresee his inability to remember my one instruction, and thus my picture of the entire family together, the only one taken, is blurred and washed out. On reflection, I believe he did not want to take the picture. But, I recall being irritated because he resisted. Yes, I pressed for him to do it. I did not comprehend that his behaviour might be a sign that we were beginning our long walk, our long good-bye.
There were other clues and I noted some in the second book.
After diagnosis, but before I understood what I had been ‘tapped’ to do, before I found the Alzheimer Society, before I knew other caregivers, I truly felt desperate and alone.
Over the years, I have learned that making my way ahead as a caregiver is far easier when I have a sidekick. Having one who has gone before introducing me to what I might find dissolves my stress and debilitating fears.
I gained understanding as I went along. Without family help, I longed for support, which was not on my horizon until years down the road. I always wished I had realized earlier there were others who could offer guidance, who knew my feelings, who had already shared their journey in stories.
I have now climbed that steep learning curve in the world of caregiving, gone to Alzheimer’s classes, been in COPD learning sessions, learned to cope with what the doctors call ‘anxiety,’ a disease I still have never seen elsewhere. I have spent untold hours waiting in emergency rooms, going to doctors, memory clinics, hospital rooms and pharmacies.
During the years following my Love’s diagnosis, we met other loved ones and their caregivers. Some were taking care of parents, and many were couples like we were, with one person being the spouse caregiver. We socialized, were in weekly art classes, in exercise classes and eventually support groups together. Wonderful lifeline relationships developed. I was no longer alone as a caregiver. Having such a wide range of resources helped to reduce anxieties, decreased feelings of loneliness, and nearly eliminated moments of despair.
Lately, My Love’s memories have started to slide more. Not just memories of his past, but memories of where he sleeps, where he lives, who he knows, what he might do in a day, all seem distant and meaningless to him. His thoughts do not ‘connect’ to his consciousness. His daily hallucinations, people only he sees, amplify the progress of his disease.
I have learned to speak softly and slowly, using direct, precise words; charades helped for a while. Now, many of his words, plus comprehension of my words, are gone, and our meaningful conversations are nearly nonexistent. So, I write, or scribble notes for later dialogue with myself.
Like a toddler, my 81-year-old love often makes one or two sounds at a time, not always recognizable as words anymore. The attempts are there. When he realizes, momentarily, that he cannot find the right word, he tries again, forgetting that he tried to find that word just moments earlier. But his brief frustration from word loss disappears quickly
I‘ve been his caregiver, his teacher, his mother, his protector, his friend, his cook, his housekeeper, his manager, his coach, entertainment director, (and sometimes just his entertainment). I’ve been his taxi driver, his secretary and confidant, and his partner. I have felt sorrow and joy, desperation and relief, anger and love, all related to both our behaviours, our responses and the challenges we have passed through together.
I hope this ‘backstory’ provides some context for the stories that have developed over the last years and that are revealed in my two caregiver books. 🌷
(If you noticed lately that you seem to only read ‘in snippets‘ – read how we might have changed our reading habits.)
You are my sunshine! Thank you for being here! 🌞
The Backstory (c) 2020 Judith Allen Shone
Books “Is There Any Ice Cream?” and “Did You Hide the Cookies?”
Available to order locally or online from booksellers including Amazon , in eBook, paperback and hardcover with large print as the standard.