James Russell is a caregiver for his daughter, Lynne, who is living with younger-onset Alzheimer’s disease. He is a widower, and in addition to Lynne, he has two younger children and five grandchildren whose families also care for Lynne and him. You can follow Jim’s and Lynne’s journey through their blog, Nevertheless Dementia, We Persist, or on social media via Facebook or Twitter.
Every day I deliver a tray of iced coffee with cream on the side to my 54-year-old daughter, Lynne, who is living with Alzheimer’s dementia — and who is now isolated to her apartment in assisted living. When the COVID-19 lockdowns hit, my role as caregiver changed, as I searched for ways to energize Lynne’s daily living in isolation. I call it “Caring for the gaps.”
Prior to the pandemic, Lynne was the most active participant in a community with 124 apartments. Family and friends visited often and we took her outside on many trips. As the youngest resident by 15 years, caring for other residents had become Lynne’s new mission.
Isolation, however, quickly increased her anxiety and diminished her social and problem-solving skills, as brain research predicts. Three months after COVID hit, we moved Lynne to the secure memory care floor where increased staff ratios would keep her safer and let her roam the floor to socialize and be active again. Shortly after her move, she was completely confined to her room because COVID-19 infected four residents and four caregivers on the floor.
The community’s quarantine policy was to give ten “touches” to every resident each day to reduce loneliness and increase their safety — which I originally thought was excellent. I’d seen her caregivers use skills from the Dementia Care Practice Recommendations, “embracing her reality” to relieve anxiety whenever they touched her. I’d learned a lot from them.
But the increased load on caregivers during the pandemic means they briefly care for her and cheerfully leave Lynne alone again. Silence descends and loneliness ascends.
We’ve tried different approaches to replace that silent loneliness with fun and memories. We’ve set up activities she can enjoy in her apartment. I ordered an inexpensive portable stationary bike and had it assembled for her. That night it was still in the garage, so the concierge immediately wheeled it up to Lynne’s room. You could see her excitement, as she took her first ride.
We posted a list of her favorite TV series, tennis channels and movies on her wall. We bought a foot bath basin with lavender epsom salts for foot massages. She likes to carry books she will regularly scan and look at pictures.
We quit using her cell phone because we’d lose it and couldn’t keep it charged. Instead, we bought her a Facebook Portal, so she can answer or initiate calls. We also added an Echo Dot to her room so she and family members can drop in on each other. She can also tell it to play music, so we’ve taped lists of her favorite music to the wall so staff can quickly choose songs she’ll like.
Another way to care in the gaps is to bring her gifts to please her or allow her to share. I’ve added her favorite trail mix, and even a frozen cookie to enjoy, along with her daily coffee tray.
Family and friends mail gifts to me. We used to mail them to her, but too often we couldn’t confirm she received them. They have included headbands, a page of internet jokes, comic strips from Calvin and Hobbes and pictures from scrapbooks. A high school friend sent a picture of a scooter Lynne rode that generated lots of laughs. I gave her a photocopy of her favorite picture of her and her sons. At our video chat that night, she said, “Everybody liked the picture of my boys. Can I keep it?”
The fall has brought freshly-picked HoneyCrisp apples, Halloween candy and two small pumpkins with smiley faces one day and scary pictures the next. “They were hilarious,” she said.
I can’t stress enough how difficult it is to make every caregiver and supervisor aware of the many options to entertain her. She had a new set of caregivers when she moved into memory care. Staff work different shifts 24 hours a day during the week and different ones work during the weekends (let alone substituting for COVID-infected staff). When Lynne would call me in tears, I would call the concierge to see if someone could check in on her.
I write emails to supervisors and remind caregivers who “touch” her about lists and activities that could entertain her. Many are not familiar with the Echo Dot and Facebook Portal. My second goal is to get them to ask Lynne to choose ways to entertain herself as the last thing they do before they leave her alone, such as, “Would like to listen to Dolly Parton?” or “Would you like to ride your bike?”
Lynne needs more help than I can provide in her daily living and on video chats when she’s sobbing. Fortunately, the community’s director of caregiving has an office on Lynne’s floor. She has fun with Lynne. She told me, “Lynne was sitting outside my door one day. I said, ‘Come on in.’ She laughs a lot. One day, Lynne told me she was done working for the day and was ready to go home. She is the number one resident caregiver here.”
The director of caregiving has coached me to avoid commiserating with Lynne’s anxieties by first getting her to breathe deeply with me to calm down and tell fun stories from our memories together. I’ve learned ways to entertain her by laughing at myself as a 79-year-old father doddering around without Lynne’s mother.
The best times are when her laughter flows over both of us and rinses away fear.
Lynne and a caregiver called for a video chat to cheer her up — and me at that point. Inspired by interviews with her friends who remember singing and dancing with her at outdoor concerts, I asked her if she wanted to hear music. She said, “Yes, Lyle Lovett.” I told her to say, “Alexa, play Lyle Lovett.” Her Echo Dot played Lovett. She soon sang the lyrics and we rose out of our chairs to dance through our video chat. And we laughed.
I love Lynne more deeply than ever right now. My wife often warned me I was missing the love in our family when I was absorbed in work and community service. I’m grateful I can care for her at this precious, rapidly disappearing time. I am living the lyrics of Kris Kristofferson’s song, “Loving Her Was Easier.”
“Coming close together with a feeling that I’ve never known before in my time.
Wiping out the traces of the people and the places I have been.
Dreaming is as easy as believing it is never gonna end.
Loving her is easier than anything I’ll ever do again.”