Navigating the world with a loved one diagnosed with Alzheimer’s or another dementia is tough enough. Add onto it a global pandemic? Since the spring, caregivers across the U.S. have been forced to change their routines. Not just once for many, but again and again as the infection rates ebb and flow. Thankfully, caregivers are a tough bunch. It’s the reason we dedicate the month of November to recognizing them for National Family Caregivers Month. We spoke with two caregivers from North Carolina to better understand the challenges they’re facing during COVID-19, including what the holidays with their loved one may look like this year.
Three times a week since 2016, Charles Clifton visits his mother, 87-year-old Mary Helen Clifton, at her memory care facility in the Durham area. Initially, Charles served as her primary caregiver after she was first diagnosed with Alzheimer’s and vascular dementia in 2013. But their routine visits in the evenings after Charles got off work, came to a sudden halt in March when COVID-19 surged. The memory care community went into lockdown and non-medical visitors were kept out. “I understood because at that time COVID was spreading,” he said. “Although I wanted to go see my mom, I…did not want to have COVID and be asymptomatic and not know that I have COVID and then pass it on to my mom or any of the other residents there.”
Their face-to-face visits over the last three years had created comfort in consistency for both of them. And then, overnight, the visits were reduced to phone calls. Then in May, scheduled Zoom calls. “We were both happy to see each other,” Charles said. “In that [screenshot] I think you can see that. I can at least look at her and know that she’s doing relatively well.” Although, the second Zoom call, he explained, did not go well. Mary Helen was not – as he put it – ‘with it’ that day, as many caregivers have seen and understand.
Next, the two were able to schedule 20 minute-long socially distanced visits outside. At first, he said, Mary Helen was uncomfortable because she couldn’t recognize Charles in his mask. Finally, on Nov. 10, Charles and his mother were able to visit with each other inside, still six feet apart and in a cordoned-off room. It felt most normal, he explained. Mary Helen must have felt the same. “Having those in-person visits I think did some good,” Charles said. “Even the staff said that she perked up.”
The holidays with his mother will certainly look different this year. In recent years, the mother-son duo enjoyed specially cooked feasts at the community where Mary Helen lives. As of now, there will instead be a Zoom call on Thanksgiving. It’s a tough but understandable reality for Charles. “It hasn’t really bothered me that I haven’t been able to go see her as frequently as I had before COVID because I know the risks and she and the other residents are already dealing with enough,” he said. Still, he said, he misses her.
Meanwhile, over on the coast, you’ll often find Kate Harrington on the road. She’s headed from her home in Greenville, where she works as a professor in the ECU English Department, to her parents’ house in Carolina Beach. As of lately, she’s making the five-hour round-trip visit every other week. Her 72-year-old father, Van Harrington, was diagnosed with frontotemporal dementia 16 years ago and now requires 24/7 care.
But Kate calls herself more of a ‘secondary’ caregiver. Her mother Marjorie is the real rockstar who deserves the kudos this November, according to Kate. Her parents have known each other since middle school and been together since high school. “She’s one of the most resilient women I’ve ever met,” Kate said. “She’s true to her vows. She’s a really strong person because she does this day-in and day-out.” A long-term care community or paid live-in caregiver just isn’t financially feasible right now. “She’s been doing this for a very long time,” Kate said. “Her life is in that house. It’s around-the-clock for her.” Kate moved back to North Carolina from Colorado two years ago, specifically to act as a relief system so her mom can recharge. Marjorie enjoys visiting friends or going on small ‘girls trips’ out in nature. “It’s very important for caregivers to get help for themselves; to be in therapy, to join a support group, because it can be very isolating,” Kate said.
COVID-19 has impacted the Harrington family less significantly. Kate said she and her mother are both taking precautions while out and about so that they don’t contract the virus and expose Van. Otherwise, he doesn’t leave the house except for the occasional medical appointment, which now requires a mask. “[Marjorie] tells him they have to wear them to protect themselves, to protect others and to keep from getting sick,” Kate explained. “She has to say these things several times because his short-term memory is so compromised. He has handled it fairly well, but he is very anxious to remove it by the time the visit is over.”
As for the holidays, Kate and her siblings usually gather for low-key celebrations at the Harrington home in Carolina Beach each year. Thanksgiving 2020 will include COVID-safe practices. It will also likely be the last gathering hosted by her parents. The plan is to move Marjorie and Van to Greenville next year and, ideally, get Van into memory care. The otherwise casual conversation with Kate suddenly slowed down as she paused, then said that it just hit her: this would be the final year of the family gathering at her parents’ home.
These caregiver stories show us the breadth of circumstances and challenges caregivers face, even prior to COVID-19. “Maintain patience and keep the faith and keep praying,” Charles said, when asked of his advice to other caregivers. “That hopefully next year, by this time, there will be a vaccine and we should be able to see our loved ones like we used to do… or at least without the restrictions that COVID has put upon us.” There is a common thread. Though their situations are different, they are driven by love. “You hear these stories and you think, if it happens to you, you just can’t do it,” Kate said. “But, I think the human spirit and our compassion and our ability to care for others… you find it in you to do what you have to do.”
Whether you provide daily caregiving, participate in decision making, or simply care about a person with the disease — we have resources to help. Visit alz.org/care or call (800) 272-3900 to learn more.
Madeline is a former TV news reporter & anchor who got involved with the Alzheimer’s Association in Oct. 2020. She volunteers her nearly decade-long experience as a journalist to honor her grandfather, who has vascular dementia.