The Longest Day—the day with the most light—honors those facing Alzheimer’s disease and their caregivers. On this day (happening Sunday, June 20), people from across the globe come together to fight the darkness of Alzheimer’s disease by raising funds and awareness for the care, support, and research efforts of the Alzheimer’s Association.
Written by Elizabeth Coleman, Associate General Counsel, Litigation, Global Competition, Government Investigations & Special Matters, IP
For each of us, the pandemic created new personal and professional challenges and compounded existing ones. My mother has been living with dementia for several years. My brothers and I all witness to a rapidly increasing and excruciatingly painful decline in her cognitive abilities over time. Nothing could have prepared us for the impact the pandemic would have on her and on us as a family caring for someone with dementia.
So much can be said about this disease and its impact on families. Dementia takes many forms and the journey for any one person or family is uniquely theirs, but there is a shared experience in the progression of the disease—the fact that your loved one continues to slowly slip away.
As my mother’s cognitive abilities began to decline, I, like most people in this situation, entered a grey zone where I wasn’t really quite sure of the severity or speed of the decline. At first, there are many normal moments; mostly normal. And, then you start to get questions – what is the name of this vegetable, how do I get home from the store, what do I do with this credit card? You always remember the first clear sign. My mother had gone to the salon to get her hair done – the same salon that she had gone to for 20+ years. When she was done, she called me at work and said, “I am standing on the street. I don’t know which one. I don’t know what to do or how to get home.” That moment is frozen and etched in my memory, but especially prominent is the fear and sadness I felt. For her, for us, for what lay ahead.
With my father having passed away, and my siblings and I all with demanding jobs, we rallied together and started with shifts to take care of my mother. Among us, our significant others and my mother’s grandchildren, we could ensure nearly full-time coverage. This is surely one of the blessings of a large family. And we did that for nearly two years. One of us would be there for every meal and ensure my mother took her medication, was occupied, content, and safe.
Pre-pandemic, after extensive research and consultation with my mother’s physicians, we ultimately reached the heartbreaking decision to turn to a residential memory-care facility. I would visit my mother a few times a week. We would go on walks, look through old photographs and books, play cards, share a meal – simple things that were not too taxing or demanding of her declining cognitive skills. She would always recognize me. Even if not always by name but with a warmth, a recognition, a smile, a hand over her heart, an outstretched hand or a “that’s my girl.” I always knew that she knew I was someone she loved.
And then the pandemic. Visits were no longer allowed. We would attempt to video chat, but it could never hold my mother’s attention for more than a minute or two. It looked as though she thought she was watching a video; not something live. I was now watching her decline in one to two minute video sessions a couple of times a week. The facility would send out strikingly sterile daily and weekly updates on COVID cases: # confirmed cases, # deaths. It was devastating and shocking. And, then we received the call in October 2020: “Your mother has tested positive for COVID and is being transferred to a COVID facility.”
Her hospital room was on the first floor of the COVID facility and the most contact I could have with her was to stand outside her window and blow kisses and air hugs. She survived. But COVID took an unspeakable toll on my mother —both cognitively and physically. Throughout this past year and a half, I came to realize that all I wanted —what I really longed for during that long stretch when I could not be with her—were really quite simple things: a hug, laughing together, holding my mother’s hand, a familiar facial reaction, or sitting around a table together.
No one can prepare you for the role of caring for an aging parent. In most cases, our parents have been our strength and support, there for every bump and celebrating every success with unconditional love. But many of us will be thrust into this position. You will find strength in places you didn’t know existed, and it will underscore that it is truly the simple things in life that matter. Where I have found strength in caring for my mother, I have come to realize, is from the love of my parents and the values that they instilled in me: Hold on tight to those you love. Be grateful for everyday moments. Take nothing for granted. I was able to visit my mother in person this month for the first time in over a year—to hug her, to hold her hand, and sit by her side. It was all I had wished for.
The Longest Day—the day with the most light—honors those facing Alzheimer’s disease and their caregivers. On this day, people from across the globe come together to fight the darkness of Alzheimer’s disease by raising funds and awareness for the care, support, and research efforts of the Alzheimer’s Association. At Uber, we are fortunate to have the Sages ERG, a valuable resource that promotes diversity and inclusion of all generations by celebrating and sharing the wisdom that comes with age, and providing resources for the associated challenges, like caring for a loved one.