By JUDITH ALLEN SHONE
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.
We are nearly 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 months. In addition to daily tasks, I shower him, shave him, cut his hair and nails, and button his shirts and pants. I cut up his food and monitor every pill he takes so I don’t find any elsewhere. I read to him, play music for him, and choose the older movies because he recognizes actor names.
He paints some, but nothing like he used to. We wash dishes together. Lately, I wash, dry and put away, while he supervises. We clean house together – I dust and vacuum, he holds the vacuum cord. 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.
Over the years, I have learned 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.
Before I understood what I had been ‘tapped’ to do, before I found the Alzheimer Society, before I knew other caregivers, I felt desperate and alone. I gained understanding as I went along. Without family help, I longed for support, which was not on my horizon until years later. I always wished I had realized earlier there were others who had offered guidance, who had already shared their journey.
I have 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’ that 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 our earlier years, 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 day it is, 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, 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.
Judith Allen Shone’s background includes a love of art, writing and music. Her BA degree in Art from Colorado State University in 1965 led to teaching art. Then midway in her career-years she shifted to marketing, using her art in the oil-patch, the exhibition field, and then the arena of website design. Her most recent creative growth involved publishing her caregiver books in memoir format. She designed the covers, and now creates her own ads to promote them. Shone lives in Ontario, Canada.
Judith Allen Shone – caregiver-author
Series: Accepting the Gift of Caregiving,
Part 1: Is There Any Ice Cream?
Part 2: Did You Hide the Cookies?
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PERSONAL and SOCIAL LINKS:
Book sites: https://www.Caregiver-books.com
Caregiver Blog: https://www.AcceptingtheGiftofCaregiving.com
Goodreads: Judith Allen Shone