Caregivers of elderly relatives during COVID face ‘nothing but challenges’
Things were going well for Dave Fuller at the beginning of the year. The 36-year-old Stratford resident owned his own home, had his master’s degree, was working in communications for Monroe College in New Rochelle and had some additional marketing gigs on the side.
Then coronavirus hit. Like so many others, Fuller found his life turned upside down. Not only did he lose his job, but his mother died of a heart attack in June, leaving him as the sole caregiver of his 91-year-old grandmother who has advanced dementia and Parkinson’s disease.
“I’m finally living for myself, doing well for myself,” he said. “Then this falls upon (me). There’s no course for that. It’s a dive off the deep end and then throw COVID-19 on top of it.”
Fuller now spends his days caring for his grandmother, who lives a half-mile up the road in her own home, while balancing freelance work and trying to get her assistance from the state.
He has to help his grandmother with most basic tasks, like eating and getting dressed, on top of managing her bills and legal paperwork.
Fuller has been trying to get his grandmother into a home or find some aid for her, but COVID has slowed everything down. Even getting power of attorney for her has been a challenge.
“Something that may take a month or two to accomplish now takes three to six months to accomplish,” Fuller said. “There’s not a lot of information. Elder care is tough even without coronavirus...Between this situation and the overall pandemic, it’s just been tough. A year ago looking into 2020, I was like ‘this is going to be a great year.’ It’s been nothing but challenges and nothing but suffering.”
COVID-19 has thrown a wrench into the already difficult task of caring for an elderly
relative. Many caregivers find themselves isolated while at home with a loved one all day. Many are worried about COVID exposure from hiring outside help or if they leave their home, so they have no time to recharge.
“The people I’m really concerned about are the people at home with loved ones who don’t get a break,” said Donna Spellman, executive director of River House Adult Day Center in Greenwich. “The aging process has challenges in and of itself... (Some aging adults) need to be watched 24/7. Some (caregivers) are nervous about additional support. They don’t want people coming and going in their homes...They are so isolated and trying to go at it alone. The rate of anxiety, depression and plain fear is off the charts.”
Spellman said River House has also seen a number of members die this year, not from COVID, but health that went into rapid decline when they went
into isolation.
“It’s not because caregivers weren’t doing their best,” she said. “It’s due to this upset in not being able to leave their homes. You can be socially isolated even surrounded by family. That’s something very real and really played a huge, huge role in the decline of so many people. Not to mention people aren’t moving around. They’ve lost direction. Everything, for so many people, has just fallen apart.”
Norwalk resident Jill Arvanitis said her mother’s health has been affected by the pandemic, not only from isolation, but from the delays in medical care the virus caused.
Arvanitis left her job at the beginning of March to care for her mom whose health had begun declining in late 2018. The plan was to take a few months to help her mom get through a series of appointments and procedures to help get her health back on track.
“I was balancing six or seven different specialists and appointments,” she said. “Balancing that with working full time was hard...I said to my husband I just need six months to bang out doctors appointments. The ironic thing was we were walking into a pandemic.”
Arvanitis’ mother had just begun seeing a new physical therapist to help with her leg pain while walking. She had exploratory surgery scheduled to aid her failing vision. And her memory had begun to improve after moving to an apartment in an assisted living facility in Wilton after doctors suggested her decline could be attributed to living alone. Then March came, her appointments and procedures were canceled and she was isolated again.
“We had all this momentum to really bang out all these appointments and not just have procedures, but immediately be able to follow up,” Arvanitis said. “But then when the pandemic hit, it all stopped. It was this incredible feeling of momentum that just stopped in its tracks. It was hard and you had this feeling of we've been making so much progress. Are we ever going to get back to this place?”
Knowing she had to care for her mother, Arvanitis and her family adhered to strict quarantine rules. She would only see her mother to deliver groceries and set up her pills, but kept away from her. Her mother began to have trouble again remembering things like what day it was as a result of being home all day, every day.
“I would try to stay on the other side of the apartment and tell her stay on the other end,” Arvanitis said. “It was literally just trying to keep her alive. It sounds weird, but that’s basically what it was especially in those early days when we didn’t have any information on how to keep people safe. You have fears of am I going to be able to keep my parents alive?”
When the state reopened in May, Arvanitis tried to get her mother back on track while staying safe, but a lot of progress was lost. Her twice weekly physical therapy appointments were like trying to teach her mother to walk again, she said.
The bright spot was the medical procedures originally planned for the spring were rescheduled. But COVID guidelines require a test before each one which can sometimes take Arvanitis all day to get — between picking her mother up, waiting for the test and getting her mother home. While she might have had her mother take a car service before corona hit, this isn’t an option now.
“It had to be me as a caregiver because of COVID,” she said. “Pre-pandemic there were certain tasks I could’ve (delegated), but because of COVID...it’s been a huge amount of effort on my part.”
With the COVID vaccine hitting Connecticut nursing homes, relief and hope is on the horizon. But the effects of the lockdown will linger in the long term.
David Rabin, CEO of Greenwich United Way, said his organization is conducting a needs assessment of the community in the coming year and mental health is already at the top of the priority list.
“I think the pandemic has brought (to light) a lot of underlying issues that weren’t being addressed,” he said. “Now as we’ve gone through nine months of this, we see this being one of those issues which has bubbled up to the top...We need to be preparing for the mental health services when it comes to the aging population. We think it’s festering in homes where there may be limited care, help and resources. Zoom only goes so far...We have to be very careful (with family caregivers) too. Without the proper social and emotional interaction, it’s going to take its toll.”