How the Pandemic Changed Caregiving



How the Pandemic Changed Caregiving

Cynthia Ryan had arranged for her 83-year-old mother to move from Illinois on March 23 to a skilled nursing facility near Ryan’s house in Birmingham, Ala.

But, the coronavirus disease 2019 (COVID-19) changed those plans. Ryan, instead, moved her mother into her home. Ryan said the past few months have been challenging since her mother has late-stage Alzheimer’s disease.

On good days, Ryan said her mother is funny and engaged. But, there are days when her mother forgets how to sit, stand, and swallow. She also wanders the halls at night, and she sometimes falls.

With the coronavirus devastating nursing homes, Ryan said she is not sure whether to move her mother into the nursing home and risk not being able to visit her every day. Yet, Ryan, a breast cancer survivor with cardiac issues, said being her mother’s primary caregiver is taking a toll on her physical health.

Ryan is not alone in experiencing the impact of COVID-19 on caregiving for older adults. Barry J. Jacobs, a clinical psychologist, and health care consultant said support systems families had in place have buckled under the COVID-19 pandemic.

Social distancing and other restrictions were put in place to slow the spread of the coronavirus and safeguard adults with underlying health conditions who are at high risk for infection. The restrictions, however, forced families to make difficult decisions when it came to caregiving.

Jacobs said families had to either take over caregiving responsibilities, or allow paid caregivers to continue working and risk exposing older adults to the virus, or provide no care at all.

Caregivers Caught in the COVID-19 Dilemma

Moira Quinn took care of her mother, without pay, for more than 12 years. But, Quinn has to rely on others to help with caregiving duties since she is raising two children and working full-time as a certified nurse practitioner at the University of Massachusetts Memorial Health Care in Worcester, Mass.

As an essential worker, Quinn is on the front lines of the COVID-19 crisis. Because of her high risk of exposure to the coronavirus, Quinn said she is concerned about caring for her mother.

But, Quinn is also worried that the workers caring for her mother have been exposed to the virus. Quinn understands the dilemma and believes that COVID-19 has made the job of caregiving much worse.

Veteran’s Family Takes on More Caregiving Tasks

Jim and Karen White, of Apex, NC, care for their 31-year-old daughter, Kimmy Fix, the oldest of the couple’s nine children. The Whites’ youngest child is 9 years old. Fix cannot speak and is mostly confined to the bed and a wheelchair.

While serving in the U.S. Army as a Medical Service Corps officer, Fix was involved in an auto accident in Italy and suffered a traumatic brain injury. Fix, who is divorced, has an 8-year-old daughter who also lives with the Whites.

Fortunately, the Whites are enrolled in the Veteran Directed Care Program that provides support for disabled veterans to live at home rather than in a nursing facility.

While Fix has round-the-clock caregivers, COVID-19 kept them away from their duties. Jim White said his daughter is susceptible to pneumonia, a common complication of coronavirus, and her caregivers have underlying conditions that place them at risk for complications from a coronavirus infection.

Since the COVID-19 pandemic interrupted Fix’s caregivers’ routines, the Whites are handling the additional responsibilities which have also impacted other family members.

A 2014 RAND Corporation study found that the 5.5 million military caregivers in the United States perform a variety of tasks and face heavy burdens. According to the report, caring for wounded, ill, or injured military personnel and veterans can impose a substantial physical, emotional, and financial toll on caregivers.

The Whites understand this issue, especially the financial strain that caregiving can bring on a household budget. Jim White says his family would be bankrupt if it were not for the financial assistance from Fix’s military insurance benefits and Medicare.

COVID-19 May Move Up Caregiver’s Future Plans

The COVID-19 outbreak has Deb Hallisey wondering whether she will have to move in with her mother earlier than she had planned.

The Lawrenceville, NJ, resident said she became responsible for her mother, who is legally blind, has diabetes and mobility issues, in 2015 after her father died. Hallisey took care of both her mother and father and her caregiving duties contributed to her losing her job in 2016.

Since then, Hallisey started a business called “Advocate for Mom and Dad,” to help families find answers on caregiving, legal, insurance, and other challenging topics.

While Hallisey’s mother has a live-in caregiver, Hallisey said she takes her mother to doctor appointments, takes care of the home, and stays with her mother every other weekend for four days.

Hallisey said she moves in with her mother if her caregiver gets sick. But, if Hallisey gets sick, Hallisey wonders if the agency would have someone to care for her mother.

Now, COVID-19 has brought new challenges. Hallisey said getting medical supplies for her mother is more difficult because of the COVID-19 outbreak. What’s more, ordering supplies online is cutting into what Hallisey described as a “carefully planned budget.”

Hallisey said she had a “game plan” for how long she could keep her mother in her own home, based on her mother’s finances, but now the plan is “just blown out of the water.” Hallisey questioned whether the current financial situation will soon require to her sell her home and move in with her mother.

Because the coronavirus disease pandemic brought unique challenges, Jacobs said families should not beat themselves up if their plans do not turn out ideally. In many cases, there are no right answers, he said, since families are struggling to make the best decisions with the bad options that are given to them.


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