My mother on her wedding day.
It was a cool, crisp fall day as I pulled into the driveway. Living almost three hours away and working full-time made it difficult to see my mother as often as I wanted to, but the driving and trips were always worth it. I shared caregiving responsibilities for my mother with my father and four siblings as we navigated uncharted waters in this maze of caring for an elderly parent.
Our mother had fought the ravages of heart disease, diabetes, and Alzheimer’s for years, and it was finally taking a severe toll on her, my dad, and all of my siblings. Caregiving is a stressful, time-consuming, and difficult job. It often extends for many months or years as the need for care and attention increases over time.
Houses are not typically built for the convenience of the elderly or their caregivers, and we had to make multiple updates and renovations to our parent’s 1950’s home to make it suitable for keeping my mother at home as long as possible. Even with updates for handicapped access to certain areas of the home, it was not an easy task.
Juggling schedules and calendars among caregivers to ensure the best care possible is challenging, and disagreements and frustration often result among siblings and other caregivers.
The physical, emotional, and mental stresses of caregiving creates challenges beyond expectations – sometimes causing emotions to collide.
It was now September and we all knew that our mother ‘s health was steadily declining. Both her physical and mental capacities had deteriorated significantly. It took 24/7 care to keep her safe and comfortable.
A particular fall day is now emblazoned in my mind and I will never forget it. I can describe what I was wearing and every other detail of the day. I packed my car and headed down the road to spend several days with my mother as her caregiver for my designated time – thankful to be able to relieve my sisters and enjoy being with her. I was always so excited to see my mother – her big smile and warm, inviting hug made me feel like a child again at times.
As I arrived and began to unpack my car, I felt a chill in the air. I remember looking up at the autumn sky and thinking it was unusually crisp and cool that morning. A shiver ran through my body as I closed my trunk and headed in to see my mother. I was excited to be here again.
“Good morning – I’ve missed you mama,” I said as I quickly dropped my bags and packages and headed for a hug from my mother who was sitting in her wheelchair. I couldn’t wait to feel her arms around me and to give her a big hug too.
But to my shock, she pulled back fearfully and appeared quite afraid as she said, “What’s your name? Who are you?”
For a moment I stood silenced, shocked, afraid, and even angry. How could she ask who I was? I was her daughter. I stood back to figure out what was happening, and then I realized that she really did not recognize me. Her memory had failed her and she was afraid. She was truly afraid of me and the reality of the situation hit me like a ton of bricks. I knew I had to retain my composure and help her work through this moment as I choked back tears and my mind raced with worry. Finally, I was able to reach out to her.
“My name is Rhonda and I’m your daughter,” I said tearfully. I stood back and waited for some sign of recognition.
The blank stare in her eyes and her hesitation were deafening to me. She did not recognize me and she was afraid of me. There had been humorous moments in the past when for a fleeting second she would say, “Which one are you?” referring to her five children, but this was different. She was clearly afraid of me and for what seemed like an eternity, we just sat and looked at each other. She gradually became less afraid and over the next few days, we enjoyed some special moments together. But it was obvious that her mind had taken a turning point that no one could have prepared me for. With more than 20 years in healthcare, I knew the clinical progression of her disease – but this was my mother and clinical explanations meant nothing at this point.
For the next few weeks, her memory would fade ever so more and she would not remember most of the people who came to see her. On occasion, there was a glimmer of recognition but never the feeling that she really grasped again that I was her daughter.
The day I had to tell my own mother, “My name is Rhonda and I’m your daughter,” is a day that I will never forget. It was a day that no caregiver is truly ever prepared for – and no daughter ever wants to experience.
She passed away on November 9, 2007 – just weeks after that day – and as I stood by her graveside and laid a rose across her grave, I quietly told my mother, “My name is Rhonda and I’m your daughter.”
National Family Caregivers Association
In 1994, the National Family Caregivers Association began promoting the celebration of family caregivers during the week of Thanksgiving. President Clinton signed the first presidential proclamation in 1997 and every president since – Democrat and Republican alike – has issued an annual proclamation appreciating family caregivers. As interest grew in family caregiving issues, National Family Caregivers Week became National Family Caregivers Month [in November].
Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.
For local Richmond caregiver resources, visit Lift Caregiving and access a list of locally trusted providers to support caregiving needs.
