SFrick19

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.

During my 23 years at the Rush Alzheimer’s Disease Center, I have had the honor of working with residential care staff throughout the Chicago area. I am always impressed at the depth of compassion and respect they convey for the people with dementia. They bring joy, structure and love to difficult situations.

With COVID-19, it’s a tough time for residential settings. You all are strong and will help your residents through with that same compassion and respect. We are sending #WordsOfComfort during this time.

And I look forward to being back with you soon!

On one occasion, I was testing a participant in the Memory and Aging Project who had several physical impairments. Her caretaker was absent on the day of our appointment. While I didn’t meet the caretaker personally, her presence was felt all throughout the apartment: there was a framed photo of the two at the Chicago Pride Parade, the participant used an Amazon Alexa that the caretaker had given her for Christmas, and the caretaker’s warm and giving personality was a recurring topic of conversation.

It wasn’t until later on in the appointment that I learned the reason behind the caretaker’s absence: her sick family member had been hospitalized the night before. It became clear that this caretaker had been acting as a loving, surrogate family member to the participant, in addition to taking care of others outside of her work.

So many caretakers, like this one, go the extra mile. They don’t simply “wipe their feet at the door.” They carry their work with them, touching the lives of those in need, and forming meaningful bonds along the way—all this on top of the challenges they may be facing in their personal lives.

To this caretaker, and all the others, we owe an endless amount of gratitude.

Sandra Shields, a founding member of the Without Warning support program, had a gift for writing poetry. Along with Nancy Swanson, our music therapist, the song Faith was created. This has become a special song to many of our members. Part of this song seems comforting at this time.

Unexpectedly life brings you to your knees.
Just know that there are those out there
That see just what you see.
No matter what life brings you must believe it’s there.
Just as long as you have FAITH.

I have worked with caregivers for persons living with dementia for almost 20 years as a family physician/geriatrician at the Rush Alzheimer’s Disease Center. I always am awe-struck at the transcendence caregivers go through during their journey supporting persons living with dementia. The dedication caregivers show in recognizing the “human-ness” in their loved ones always humbles me.

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.

Through Without Warning, you have many friends who just want to hold you up and encourage you in every way possible.

At this time of uncertainty may you find unexpected blessings in each and every day.

Sending heartfelt cheer and a virtual hug of support!

The caregivers I have a met at Without Warning are so amazing: compassionate, loving and courageous. I cannot imagine how difficult their lives must be, and yet they continue to smile