Summary
“This series of short stories and the accompanying original art were created to document and share my journey as a dementia caregiver. If you are caring for a loved one who is challenged by Alzheimer’s or another dementia, may they resonate with you while seeking meaning in your caregiving work and a better, brighter and healthier future. If this is your first time stopping by, I recommend starting from the beginning with Story #1: A Few Things I’ve Learned.”
– Gerald
Stories from a Caregiver: Love, Resiliency, and Renewal
Story #18: Living Our New Normal
By: Gerald Lloyd Wood
Our lives changed dramatically after her diagnosis of Alzheimer’s disease. We now sense time is of the essence and are circling the wagons for protection, albeit the emotional kind. In fact, our love for each other has never been stronger as we face this new challenge together. Indeed, we have loved each other since that first date long ago. Seven months later on one of the happiest days of our lives I still remember those vows that began, “I take thee Linda, to be my wedded wife.” We’ve passed that part with flying colors. But, our commitment today is being tested on that more foreboding part, “for better or worse.” Indeed, one phrase we exchanged, “in sickness and in health,” was just words all too easy to recite with little relevance. Reality today brings those chickens home to roost when her brain is now like a camera without film.
On daily trips to meetings or shopping she repeatedly asks, “Where are we going?” It’s exasperating for me. But for her, losing both long-term and short-term memory is even more upsetting. She is aware and sometimes acts out uncharacteristically from frustration. I’ve learned to always answer her repetitive questions as if hearing them for the first time. It’s a practiced response that works most of the time. Sometimes, I forget and say, “You’ve already asked me that ten times” or, “Please, write it down.” When I’m tacky, her tears and well-deserved wrath make me feel like a jerk. Acknowledging my error, I apologize while remembering that it’s not her, it’s the disease. To make things worse, our companion dog gives me the eagle-eye when he hears that tone.
I have yet to find any redeeming qualities in Alzheimer’s but one is when she forgets quickly when we have words. That may sound humorous; but, I must not make light of any acrimony in matrimony. Most assuredly, this disease has become a well-spring of emotions for both of us because it can’t be fixed. It brings feelings closer to the surface. Hence, we navigate a combination of good days and bad days with a foreboding about the future.
In fact, our love for each other has never been stronger as we face this new challenge together.
Alzheimer’s disease is insidious because it makes everything harder. Recently, Linda got lost at Symphony Hall. I had a gross lapse in judgment by allowing her to go unaccompanied to the restroom at intermission. After waiting anxiously for her to return, I became worried and got up to search for her. I looked everywhere in that cavernous place with multiple exits to the streets outside. As house lights dimmed, I was relieved to find her coming down the spiral staircase from the balcony, of all places. She was visibly shaken, disoriented and in tears. The fear and panic I saw in those eyes at being lost touched me deeply. I’ll never forget. Being an experienced caregiver, I should have known better than to let her go alone, because that ship had already sailed.
It was slow coming, perhaps as a form of denial, but a valuable lesson was learned that day. Her confusion seems to worsen in unfamiliar places. We needed to work harder at being careful. In the past, she shopped independently while I sought the nearest cup of coffee or easy chair. But now, letting her out of my sight is no longer an option. The very thought of her getting lost in a shopping mall or delivery back alley is terrifying. Hence, dementia has stolen personal freedoms from both of us.
© 2022 Gerald Lloyd Wood. All rights reserved. This story and accompanying art are used with permission of the author.
Don’t Miss Gerald’s Next Article
Thought for the day: “Solutions to problems may be found in new paradigms. Logic is out the window with dementia. Thus, newfound creativity in ADLs (activities of daily living) is required!”
Ready to Find Meaning and Hope?
Finding Meaning and Hope is a free program for family caregivers based on the book, Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief by Dr. Pauline Boss. This which features videos with caregivers like Gerald and facilitator guided discussions.
