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Exhausted dementia caregiver wonders which will last longer, the coronavirus pandemic or her

The pandemic has made isolating work even more isolated.

Rose Carfagno looks out her second-floor window during a recent visit with her son.  He did not come inside his sister's home because of coronavirus precautions.
Rose Carfagno looks out her second-floor window during a recent visit with her son. He did not come inside his sister's home because of coronavirus precautions.Read moreRosanne Corcoran

Even before the pandemic, Rosanne Corcoran’s life was isolating, frantic, and more than a little sad.

She was the main caregiver for her 91-year-old mother, Rose Carfagno, who has dementia, vertigo, and bad knees. Carfagno rarely left her big room on the second floor of her daughter’s Collegeville home, but Corcoran, 53, had to sprint up the 15 steps every time her mother tried to walk, which was often. The older woman needed help with dressing, bathing, and tooth brushing. Corcoran’s younger daughter, Erin, was in her last year of high school, with all the usual senior activities, and her husband worked from a basement office.

Corcoran could leave home only during the four hours a day an outside aide came. That was when she crammed in errands, doctors’ appointments, haircuts, trips to Planet Fitness three times a week, meetings of Daughterhood, the local caregivers support group she runs, and precious me time.

Then came the coronavirus.

Corcoran decided she would “roll up the driveway” as soon as her daughter’s school closed. It would be a nightmare if the family caregiver got sick, and Corcoran assumed her mother could not survive COVID-19. The high school closed March 10. The aide got two weeks' pay and permission to look for other work, which she found.

Corcoran’s very hard job, like that of thousands of others like her, got harder.

For months now, she has barely left the house. “You have four walls,” she said at a recent virtual Daughterhood meeting. “When this all started, it feels like you’re in a phone booth.” When she does go out, she worries she’ll bring the virus back with her, so she hurries home.

Normally, Corcoran is an upbeat person. She’s warm, open, easy to talk to. For the first time in her life, she feels numb. It started in mid-April. “I think those of us with a brain thought, ‘Oh, crap. This is big. This isn’t just like a flu and this isn’t going to go away when it gets warm,'” she said. She thinks the pandemic will last at least until next summer. “Then you think, how long am I going to last in these parameters?”

She’s always running up the stairs

She has a camera in her mother’s room that she monitors from her iPad. An alarm sounds when her mother gets out of bed. Sometimes she gets four or five hours of sleep; she’s always on high alert for the alarms. Even though she’s exhausted, it’s hard to fall asleep. Despite all the stair climbing she’s doing, she feels “horribly out of shape." An allergy sufferer, she has fretted late at night that she had COVID-19. One night her heart raced so fast she thought she was having a heart attack. Her hips and arms hurt from supporting her mother. Patches of skin feel like they’re on fire. “It’s stress,” she said.

Her days are punctuated aggressively with interruptions. There are many bathroom breaks to supervise. She delivers meals. She does the laundry. Her mother is upset because she “wants to go home.” She gives her mother a shower. She takes a shower of her own, all the while watching the monitor. The WiFi fails, so she has to get out and restart it, then finish the shower. She gives her mother eye drops for Sjogren’s syndrome and nasal spray for vertigo. She makes the bed with fresh sheets and changes TV channels. They talk or watch together. She snatches conversations with her daughter and husband. She makes separate dinners for her mother, who has gotten finicky about food, and the rest of the family.

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On a recent evening, her mother was in bed by 10 p.m., but Corcoran couldn’t sleep until after midnight. Her Fitbit said she had taken 7,255 steps that day and climbed 28 flights of stairs. She never left the house.

Corcoran has three older siblings, two of whom live nearby and used to visit often and provide backup before the pandemic, when it was safe for them to go inside. They now come for occasional backyard visits with Corcoran. Her mother sees them through her window. Corcoran’s older daughter, Rosemary, who is in graduate school for occupational therapy, has visited a few times. Once, she saw her grandmother from a distance. “Come here,” Carfagno said. “Mom, she can’t,” Corcoran told her. “She actually put her arms out and said, ‘Come here.’” There were tears in Carfagno’s eyes.

Corcoran has learned to cut and color her mother’s hair. She’s also taken on a job that used to be her sister’s: painting her mother’s nails Cherries in the Snow red.

Meanwhile, a “mopey” Erin has started her freshman year at Ursinus College in the family’s dining room. Corcoran’s husband, Kevin, is still working 10- to 11-hour days in the basement. They help out around the house, but Corcoran shoulders virtually all of the caregiving, not so much because she has to, but because she feels she is the one who anchors her mother’s fragile world. She can’t abandon her mother now. She can’t give her daughters and husband all she’d like, either. She’s neglecting herself.

Her emotions are a maelstrom of guilt and grief and anxiety.

She knows she’s not alone. She belongs to several caregiver groups on Facebook and runs her own. “Everybody’s drowning,” she said.

At the Daughterhood meeting, several members talked about desperately needing outside help, but fearing that aides might not be careful enough. Corcoran has hired an aide when she had a doctor’s appointment, but isn’t ready to return to the pre-pandemic schedule.

She has always been exceptionally close with her mother, who was widowed when her daughter was almost 17. Even before Carfagno moved in five years ago, Corcoran visited her daily and called several times a day.

Her mother seems worse

Rose Carfagno, a hairdresser who later became an avid ballroom dancer, has declined these last few months. At her age, some decline is normal, but Corcoran thinks the isolation has made it worse. Carfagno asks about going home every day now. She talks about long-dead siblings as if they were alive. She’s lost 10 pounds. She knows a virus has shaken her world, but doesn’t really understand. “Every morning she’ll say, ‘It looks nice out there. I guess it’s better,'” her daughter said. Corcoran suspects her mother doesn’t always recognize her. “Sometimes when she calls me ‘honey’, I know she doesn’t know it’s me.” In a recent moment of clarity, the mother said, “I’m so sorry you have to take care of me.”

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Carfagno spends much of her day watching television. She likes The Price is Right, The Young and the Restless, and Wheel of Fortune. She loves Everybody Loves Raymond. “Raymond is like another occupant in my house,” Corcoran said. When the world seems especially tense, she puts on the Hallmark channel. “The cure for the pandemic is the Hallmark channel,” she joked.

If her mother gets restless, she brings in a basket of towels to fold. Carfagno loves that. If she asks for more work, her daughter takes the towels into the hall, messes them all up, and brings them back to her mother.

Corcoran realizes she needs to take care of herself, too, and is working on that. Cooking makes her happy. Her favorite creative outlet is Daughterhood The Podcast, interviews on caregiving that she conducts in her bedroom walk-in closet — it’s quiet there and the clothes are great for acoustics. She has electric massagers for her shoulders and lower back. She meditates. She’s trying to sleep more, although, she said, “if I read one more story about how important sleep is, I think I’m going to lose my mind.”

Her life is stressful, yes, but there’s only one way out of this, and she’s in no hurry for that to happen.

Rosanne Corcoran is still, at heart, an upbeat person, and she still has plenty to be thankful for.

“I’m always grateful at the end of the day for the fact that I can do this for the time that I get to do this,” she said. “I’m grateful for [my family] every single day and that I get to see my mother every day.”