Finding a way to stay connected during this time of stress and social distancing.
During the spread of COVID-19 and the need for social distancing, we are all feeling more lonely and disconnected. If you are living with or caring for someone with dementia that feeling is even stronger. Both family members and healthcare staff are feeling this stress too.
We began #WordsOfComfort to bring us together and share words of support, advice and comfort as we move through this time. We hope these words of comfort help each of us to know that we are not alone.
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.
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.
In moments of great stress such as these, it is impossible not to recognize, appreciate, and be in awe of the tremendous strength of caregivers in putting aside their own worries and facing the ones they are taking care of with calm reassurance and a smile.
I thought I could do everything by myself to care for my husband with Younger-Onset Alzheimer’s. I didn’t want to impose on people by asking for help. I’ve always been the person who supports others, not the recipient.
When my husband had a significant medical event, I was very overwhelmed physically, emotionally, and financially. Family, friends, and co-workers jumped in to support us. I finally had to let go of the notion that I could take care of him myself, and learned how to ask for help. When I did, my burden was lessened. I find this quote by Cory Booker to be spot on:
“Sometimes asking for help is the most meaningful example of self-reliance.”— from the poem “Sometimes” by U.S. Senator Cory Booker