Illinois Cognitive Resources Network

The support group meetings were a life-line to me as I was navigating the care of my late husband, who had early-onset Alzheimer’s. I remember another spouse saying her husband had recently gone on a special day-trip for Alzheimer’s patients. The spouse said, “He doesn’t remember the trip, but he had a good time.” I was completely baffled. Why did he bother to go on a trip that he did not remember? I soon realized that any enjoyable experience contributes to our well-being and is therefore beneficial. It’s like a good night’s sleep. We don’t remember it, but it does us good.

When I think of the caregivers that I’ve come to know and love, I am blown away by the sheer force of their devotion, advocacy and unconditional love for their companions, most often the spouse. I think of how they are taking those marriage vows to heart while at the same time experiencing such profound sadness and loss.

I have wanted to write some #WordsOfComfort for those living in residential care with dementia, for their family members, and the facility staff, but each time I begin the words aren’t there. The gravity of COVID-19 for seniors and especially seniors in a facility with dementia, the inability of families to visit, and the enormity of the work for staff, all leave me struggling for words. And honestly, my words won’t make any of that change. The fear, pain, stress, and worry that people are feeling right now won’t go away anytime soon. The risks are real and won’t go away anytime soon.  We are in a moment of collective pain and connected health, where much is out our control

I grew up in a faith tradition, with a grandfather and father who were ministers. That tradition taught me that even in our darkest and most desperate hours, we are not alone, and I think the same holds true now. Whether you are a staff person working hard to keep your residents safe while worrying about your own health, or a family member worried about your person and missing the connection, or a person living with dementia in a facility trying to understand this new normal, you are not alone. Not to say the loneliness isn’t there. It is, but the more we can put words to it, the better. The more we can lean on and support each other, the better. The more we can find connection in this socially distant world, the better.

For years, I have known Bob Hawley, a gentleman who has Alzheimer’s disease and he often said in our support group meetings, that he wanted to live with Alzheimer’s with grace. In this moment of collective pain, grace might be our strongest tool. To realize and express the sadness in ourselves and in each other, might be our way forward. To find or develop community might be our way forward. For staff and family members to support each other and find ways to form relationships with the person living with dementia, might be our way forward. Life with Alzheimer’s is often described as a day-to-day experience, and that is even truer with COVID-19. This is a tough situation right now and it isn’t going to change anytime soon. Knowing, however, that there is still grace and connection in our world, just might be our way forward.