However, as the past several months have shown, managing these issues, and the emotional toll they can take, is particularly problematic during a global pandemic. If you’re a caregiver for someone with Alzheimer’s disease or another form of dementia, chances are you’ll need support as you and your loved one navigate the challenges posed not only by their condition but also by COVID-19. As part of National Family Caregiver Month in November — the theme for this year is, appropriately, “Caring During Crisis” — two caregivers, Michele Cook and Ken Gregersen, share how they’ve handled the role and grief during this time. Both have cared for and, sadly, lost someone close to them since the start of the COVID-19 pandemic. At the time of his COVID-19 diagnosis, her father was in a skilled nursing facility, receiving care for Parkinson’s disease and Lewy body dementia, a related complication. He had been diagnosed with Parkinson’s in July 2019 and was living at home in Winder, Georgia, with his wife (and Cook’s mother), Joyce, until last winter. However, by then, his care needs were more than Joyce, who is 80 and has cryptogenic organizing pneumonia, could handle. “When he was at home, I was on the phone with my mom every day, providing emotional support, and we had a home-care company helping out,” says Cook, who is 56 and lives with her family in Huntersville, North Carolina, a four-hour drive away. Once he was admitted to the skilled nursing facility, Cook would FaceTime with her father daily. “He still recognized us and remembered our names, right until the end, which was a blessing,” she says. But visits soon became impossible because of the pandemic, as the skilled nursing facility, and others like it across the country, was closed to outside visitors to prevent the spread of the virus to patients.
Birthday Celebration: The Last In-Person Visit
The last time Cook or her mother saw Chuck in person was in March, when they celebrated his birthday in his room at the facility. Within a week, the facility went on lockdown. A few weeks later, he tested positive for COVID-19 and died from the disease soon after. On the day of his passing, Cook, her mother, and one of her brothers stood outside the window of his room and talked to Chuck on the hospice nurse’s phone. “He was incoherent at that point, but we all talked to him,” Cook recalls. “We hung around for a little while, and then we left. Within an hour he was gone.” The other of Cook’s two brothers was able to don personal protective equipment and sit at their father’s bedside during his final moments. “My brother went in with him,” Cook recalls. “I said to him, ‘I can’t go in and see dad because, if I do, I can’t go be with mom because I can’t take any chances of giving her COVID-19.’”
A Small Backyard Memorial Service in the Middle of Dad’s Garden
The complications of the pandemic also impacted how the family mourned the loss of their husband and father. Because of restrictions on large gatherings, they couldn’t have a full funeral, opting instead for a memorial service in the backyard of the family home. “In hindsight, my dad would have been thrilled because he was the best gardener in the world, so the fact that we all sat in the middle of his garden probably had him smiling,” Cook says. “But it was still pretty surreal.” That was in large part because the brother who had been at their father’s bedside, albeit with PPE, still had to sit several yards away from the other attendees at the memorial service in case he had the virus. Thankfully, he never experienced symptoms and later tested negative.
Guilt, Sadness, and a Sense of Unreal in the Aftermath
Understandably, the family continues to struggle in some ways with Chuck’s passing. Cook says that her mother still feels guilty that she didn’t visit her husband more prior to lockdown and that she and her siblings “really haven’t processed it yet, because this whole year has been kind of surreal and hasn’t made sense.” She adds, “I can tell you I cried harder the day I heard that he had COVID than the day he died, or since, because in my heart I knew that was the end. I don’t know that we’ve all really mourned [his death] yet because we can’t be together [because of the pandemic].” The isolation necessitated by the pandemic has particularly impacted Cook’s mother, who now lives alone and doesn’t venture out much because her health problems place her at risk for severe illness from the virus. “I tell people I’ve held so many people’s hands as they’ve left this world, and the fact that I couldn’t be there with my dad was a little heartbreaking,” says Cook, who worked in the senior-care industry for 20 years and now consults with All About Seniors magazine, a resource guide for the greater Charlotte, North Carolina, area. “But, looking back, COVID was kind of a blessing for him, as odd as that might sound [because] it brought the end faster. He wasn’t going to recover. He was never going to be able to go home again anyway. He was only going to get steadily worse.”
Her Best Advice? ‘Don’t Beat Yourself Up’
Her advice to others facing similar challenges? “No matter what the circumstances are, don’t beat yourself up,” she says. “Don’t get upset with yourself, that you should have done this or should have done that, because no one on earth knows what’s going on with this pandemic. You just do the best you can. I keep telling everybody that I’m trying to use our experience for good now, to help others through it. Although my dad would shake his head, because he wouldn’t believe people are talking about him, he would want me to use it for good.” “I felt like I could no longer care for her at home safely, because she had lost her ability to walk,” says Gregersen, who is 88 and lives in Ankeny, Iowa.
From Daily Visits to No Visits to Socially Distanced Meetings
Even after Evie moved into the facility, Gregersen visited her daily and tried to be with her during all her meals. That routine ended in March 2020, when the facility caring for Evie had to close its doors to outside visitors. The couple celebrated their 67th anniversary with Gregersen standing outside the window of his wife’s room. Starting in July, with the weather warm enough, he was able to spend time with her on the facility’s grounds, socially distanced and with both wearing masks and face shields. But pandemic restrictions meant they were able to do that only three times before she died. Gregersen thought it would be easier to cope with his wife’s death since he hadn’t seen her frequently in her final months, but he was wrong. “I miss her terribly, but I have so many fond memories of our life together, especially after I retired, when we traveled a lot, so we did things together,” notes Gregersen, who worked in advertising. “I guess what I try to do is treasure those memories and not dwell so much on the loss. I find that grieving is not just sadness and tears but it’s reminiscing. I think there’s a picture of her in every room of the house.” Evie’s ashes remain in an urn on the mantel of the fireplace in the home they shared together, and when Gregersen dies, their two sons will inter them together at the Iowa Veterans Cemetery (he served in the Army). Evie was a lifelong Lutheran and an active member in their church (as is Gregersen), but her funeral service was limited because of the pandemic. In addition, the native Iowan has funded the installation of a bench in a local park. When it’s in place, it will have a plaque that reads “In Memory of Evelyn ‘Evie’ Gregersen, 1933–2020.” The spot is important to Gregersen: He rides his bike past it nearly every day. That exercise has also helped him deal with the loss. “I try to bike year-round,” he says, adding that he has a blog called Bike Reflections on Facebook. “It’s my exercise, and it’s also a time to just clear my head.”
His Best Advice? ‘Stay Busy, and Try to Concentrate on the Pleasant Things’
The fact that this holiday season will be Gregersen’s first without Evie by his side isn’t lost on him, though. He plans to spend as much time as he can with his sons and five grandchildren, and he will “put out all the decorations, the same decorations that Evie and I would have put out, and I think that’s going to be good therapy for me,” he says. That’s not all. “I like to bake, and if things turn out well, I’m going to share some of the treats with the friends and neighbors I’m blessed to have,” he says. “If I had to give anybody any advice who’s lost a loved one, I would say to stay busy and try to concentrate on the pleasant things.”
Resources for Caregivers During the COVID-19 Pandemic
For other caregivers negotiating these challenging times, the Alzheimer’s Association has a couple of resources, including Coronavirus (COVID-19): Tips for Dementia Caregivers, as well as a guide called The Holidays and Alzheimer’s during COVID-19.
