I am working in the Family Room, sitting with the laptop perched on my knees, writing without any interruptions. The house is silent save for the whirring of an overhead fan cooling my skin on a humid morning. I think about a time, only a couple of months ago. The TV would have been filling the room with noise to entertain my mother. It would have been distracting as I tried to work; but the real distractions would come from my mother’s constant interruptions...her manic behavior of perpetual motion. Her repetitive scratching at her arms, her head or her legs, or fidgeting with her hands, rolling and unrolling the hem of her blouse, and kicking her walker, would wear on my nerves.
All of that has changed now. My mother’s new residence is a nursing home in Chatham County. She lies in a bed slowly wasting away. I am reflecting on the past four years of full-time caregiving and reminding myself of the hardship, the difficulties, and the sadness. I also remember the many good days and the joy of sharing more time with her. She, who had once been my best friend, my confidant, my champion, became my charge, my responsibility. I have written so many words complaining about all of the big and little things that drove me crazy; but now...oh, how I miss having those moments!
Caring for Mom at home was a choice that was made for us when she ran out of money while living in a retirement community. At the time, she suffered from mild to moderate Alzheimer’s and could still live semi-independently. As her Alzheimer’s progressed we hired daily nursing care to assist with pill-taking and dressing; but still, she remained fairly self-sufficient. Then came the time when she required full-time assisted living and as my husband and I looked at her dwindling bank balance we knew that we would have to take care of her at home. We made modifications to the house so that she was safe and comfortable, we put up with her newly-formed habits that seemed to reflect her diminishing cognitive abilities (Sundowner’s Syndrome, poor hygiene, rummaging, tearing up tissues, hiding household items in her walker, and myriad other behaviors she never had before). Week after week, month after month we observed her steady decline that required more caregiving on our part, less freedom to leave her alone, and most of all less time to work outside of the home. Both my husband and I had to set aside our careers to serve my mother’s needs. We shared the responsibilities of watching Mom, sitting with her, supervising her. We tried to support each other, working around appointments and schedules as best we could but knowing that our own income suffered as a result of caring for Mom. (This is a common issue with caregivers and as much as they prepare ahead many face financial hardship.) Moreover, we lacked sleep with her nocturnal interruptions. Even when we did sleep we were always aware of the slightest sounds from her room, checking the monitor, remaining alert to her needs, an accident, a cry in the night. When Mom moved into the last stage, advanced Alzheimer’s, she became angry and aggressive. In this stage there was no remnant of the sweet woman I had known all my life. She was a stranger who hit me, who yelled and...yes, even cursed and spat out sarcastic comments. Up until that point I had found great solace in humor, and shared my journey through writing, knowing that it was better to laugh than to cry. Now, however, I could barely bring myself to write and if I did, my writing was filled with sorrow.
I missed the days when we sat on the screened porch amiably sipping tea and munching cookies. I missed watching Mom drawing in my books. When I complained about all of the floral embellishments in a book I had given her, she would say, “Well I thought that I would make it pretty!” I missed the “child-woman” who fingered food that was left out to cool, or who took a bite out of the peach my husband was eating but had left on the counter as he answered the phone. I missed the woman who threw my china plates in the trash or who took an envelope containing our power bill from my desk, squirreling it away in her walker’s storage compartment. Furthermore, I missed the person I had been for four years. I had defined myself as a caregiver. It was who I was, what I did. Now I was free, feeling like I had emerged from a dark prison cell blinking in the bright sunlight, free to go back to work, to go out to dinner with my husband, to sleep soundly at night, and to leave the house whenever I chose. Still, I felt like something had been ripped away from me and I needed time to adjust.
I can’t say how all caregivers react, but I do know that for those with whom I speak from the vantage point of being a facilitator of caregiving support groups, there are many who feel the same. We grieve over a long period of time. Each slipping-away moment causes us angst, stress, and sadness. We go through the many phases of letting go, while first, denying, then railing angrily against the disease and the manifestations. We find humor, comfort from others and sometimes even respite time. We discover strength within ourselves. We do things we never ever dreamed of doing. Finally we begin to accept the inevitable and while we still experience daily frustrations, impatience, stressful times and moments of anger followed by feelings of guilt, we live with all of this. We roll up our sleeves and do what must be done.
Today, while writing this, feeling stronger and more like my old self, I thought I was past the melancholy. Then I remembered something...a moment my mother and I had shared, and a wave of sadness washed over me. Tears welled up in my eyes. I, who believed that I was past the grieving for my dying mother, began to sob. I thought about the once so full of life person now lying frail and alone in her bed, her hip bones jutting out unnaturally, her cheeks sunken, a face I no longer recognize, and the once bright eyes now dull and glazed. Then, I reminisced about bygone days (and even recent times) recalling fondly, lovingly, the great memories, the laughter and the pure joy of sharing lives together. I thought, “How fortunate we are to share the circle of life with others.” I brushed away my tears and sad thoughts knowing that somewhere in my mother’s dreams as she sleeps away her last days on Earth she knows how much she is loved. She knows how deeply she is cared for. Still, my emotions are raw...my heart aches. This is both the curse and the blessing of caring for others.
- from an April 2019 blog post entitled “Caregiving”
Jessica Bryan, a Chatham County resident, is an author of more than 30 books in assorted genres, four of which are on caregiving. She is an AlzAuthor ( a group of vetted authors writing about Alzheimer’s and Dementia), an online facilitator of caregivier support, and a public speaker.
Working as a Triangle Realtor at Real Living Carolina Lifestyles Realty in Pittsboro. She is serving on the Chatham County Aging Plan Implementation Committee focusing on care services. She was also editor of the anthology “The Mighty Ant,” a book of short stories for those with cognitive impairment and memory disorders. The sales proceeds are to benefit the Chatham County Council on Aging.
Blog: https:// fromjessicatoyou.blogspot.com
Books: https://amazon.com/author/bryanjessica