CW: Death
Working remotely during the pandemic was a relief for Aida Beltré.
She was caring for her father, now 86, who had been in and out of hospitals and rehabs in recent years due to a debilitating series of strokes.
A stroke happens when a blood artery carrying oxygen and nutrients to the brain is either blocked by a clot or bursts (or ruptures). When this happens, a portion of the brain is deprived of the blood (and oxygen) it requires, and it and brain cells die.
Stroke is a major cause of disability and death worldwide, and is classically defined as a neurological deficit attributed to an acute focal injury of the central nervous system (CNS) by a vascular cause, including cerebral infarction, intracerebral hemorrhage (ICH), and subarachnoid hemorrhage (SAH).
She could handle it because she worked from home for a property management company. She, like most family caregivers during the early days of the pandemic had to deal with it.
Community programs for the elderly were no longer available. Caring for her father was manageable even after Beltré transitioned to a hybrid work schedule, which involved spending some days in the office and others at home.
In 2022, she was asked to return to the office full time. Medicaid was covering 17 hours of home care per week by then, up from five. it was far from enough. Beltré, now 61, was always rushing and concerned. She couldn’t leave her father alone for that long.
In 2016, Beltré moved her father into her Fort Myers, Florida, home following the death of her stepmother. His needs have increased, and she has been juggling employment as well. She is currently unemployed and exhausted.
Beltré Is not alone. In 2020, AARP found that more than one-fifth of Americans (21.3 percent) now provide care. Family caregivers cared for an adult or child with disabilities in the previous 12 months. In addition, According to the Rosalynn Carter Institute, roughly a third have quit their jobs due to their caregiving responsibilities. Others have reduced their work hours.
Economic stress is also common among family caregivers. A report from AARP titled Caregiving Can Be Costly — Even Financially shows that family caregivers spend more than $7,000 a year on expenses related to caregiving. Additionally, according to the Rand Corporation, family caregivers lose half a trillion dollars in family income each year. The amount has likely increased since the report was published nearly a decade ago.
Beltré had a remote employment for a short time before quitting. The work forced her to make sales pitches to those who were dealing with elder care, which she found unsettling. She only goes to the grocery store and church, and even then, she’s always checking on her father.
Sarah Rasby was running the yoga studio she co-owned in Lincoln, Nebraska, while also caring for her two young children. Then, at the age of 35, her twin sister, Erin Lewis, suffered a severe cardiac event that resulted in a brain injury that was ultimately fatal. Her sister’s needs were overwhelming for three years, even when she was in a rehab center or nursing home. Rasby, her mother, and other family members stayed by her side for hours on end.
Remote work is a tremendous help to family caregivers. It can be helpful when someone is recovering from an injury, an operation, or difficult treatments. It can also help when a paid caregiver is absent, or ill. Remote work also allows people to provide breaks for a primary caregiver.
The flexibility is what Rose Garcia appreciated. Her husband had ALS. Alex Sajkovic, who was also Garcia’s business partner died in April of this year.
Amyotrophic lateral sclerosis (ALS), widely known as Lou Gehrig’s disease, is a rare neurological disease that affects motor neurons—brain and spinal cord nerve cells that drive voluntary muscular movement. Voluntary muscles are those that we move to create motions such as chewing, walking, and talking. The disease is progressive, which means that the symptoms worsen over time. There is no cure for ALS, and there is no effective treatment to slow or stop its progression.
ALS is a motor neuron disorder. When motor neurons deteriorate and die, they cease to deliver messages to the muscles, causing them to weaken, twitch (fasciculations), and waste away (atrophy). The brain eventually loses its ability to originate and control voluntary motions.
Garcia downsized and restructured their San Francisco stone and porcelain design firm in response to his needs and the pandemic’s devastation. In order to pay for part-time caregivers, they used his retirement fund. She occasionally went to work in person, especially to meet architects and clients, which she enjoyed. She worked from home the rest of the time.
The cost of caregiving is exceptionally high, both monetarily and otherwise. Family caregivers need support in order to continue providing vital care to their loved ones.
Sources:
“Alex Sajkovic Obituary (2023) – San Francisco, CA – San Francisco Chronicle.” Legacy.com 1 June 2023, http://www.legacy.com/us/obituaries/sfgate/name/alex-sajkovic-obituary?id=52119992.
“Amyotrophic Lateral Sclerosis (ALS).” National Institute of Neurological Disorders and Stroke, http://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als.
AARP and National Alliance for Caregiving. Caregiving in the United States 2020. Washington, DC: AARP. May 2020. https://doi.org/10.26419/ppi.00103.001
Kenen, Joanne. “Remote Work: An Underestimated Benefit for Family Caregivers.” KFF Health News, 19 May 2023, kffhealthnews.org/news/article/remote-work-an-underestimated-benefit-for-family-caregivers/.
Sacco, Ralph L., et al. ‘An Updated Definition of Stroke for the 21st Century’. Stroke, vol. 44, no. 7, American Heart Association, July 2013, pp. 2064–2089, https://doi.org10.1161/STR.0b013e318296aeca.