To the editor:
“Caregivers helped us become family. We were lucky,” by Rachel Scarborough King (Opinion Guest Essay, January 8):
King, the wife of Adi Barkan, who died in November, spoke of the harsh reality of what it means to be a caregiver for someone with amyotrophic lateral sclerosis. Their caregiving journeys highlight the political and policy choices that have led to inequalities and challenges in accessing quality care.
Access to dignified care should be a fundamental right for everyone. Lawmakers should pass federal paid family and medical leave policies that: Family law. Caregiving disrupts caregivers' jobs, careers, and financial security. Without paid leave, long-term caregiving almost inevitably leads to financial instability.
Paid family and medical leave allows people with disabilities to spend their paid time caring for themselves, allowing them to work and contribute to the economy. Family Values @ Work Network helped win paid family and medical leave in 13 states and Washington DC The state's victory is a blueprint for a successful national program.
Paid family and medical leave allows us to be there for those who need us, whether for short or long periods of time, as they recover and take their last breath.
Adi Barkan's advocacy has made a significant contribution to advancing the rights of workers and their families. All of us will need to provide or receive care at some point.
Josephine Calipeni
Berwyn Heights, Maryland
The author is Executive Director of Family Values @ Work.
To the editor:
Remember how you felt while sheltering in place during the pandemic? Did you feel stressed when your world shrunk to the walls of your home? Frustrated by the limitations placed on you? Were you there?
I loved that time. I wish I could go back. No, I don't want another pandemic. But I want to be like everyone else, like I was back then.
I live in a limited world as I am an informal caregiver for my husband who has a spinal cord injury. As an informal caregiver driven by her passion and duty, the shelter requires her to spend more time loving and caring for her husband at home than being active in society. It was a respite from feeling different. She thinks other informal caregivers can relate.
Rachel Scarborough King's essay depicts professional caregivers supporting families, but for many of us, informal caregivers provide care. This is because the recipient of care is not completely dependent on professional care. We bridge the gap by taking on multiple roles as unpaid and untrained nurses and therapists (physical, labor, respiratory, mental health).
We strive to make the lives of our care recipients easier and healthier, with little external recognition of our value.
Julie E. Yonker
Grand Rapids, Michigan
To the editor:
My husband was diagnosed with amyotrophic lateral sclerosis in April 2020, just as the coronavirus pandemic began. By December, her husband was completely paralyzed and on a ventilator. He needed help 24/7. Due to COVID-19 restrictions, my friends and neighbors were unable to help me.
We were fortunate to be able to connect with an amazing non-profit organization. Compassionate Care ALSLocated in West Falmouth, Massachusetts, we were provided with medical equipment that was not covered by insurance. The lawyer suggested that I divorce her husband of 54 years to reduce his assets in order to qualify for Medicaid. We found a facility that specialized in his ALS care, and its staff were here faithfully day and night until he passed away.
For $20,000 a month, I was able to keep him in a home where my family could love and support him. Most people don't have the resources I had. Their loved ones are being sent to poorly equipped nursing homes.
It's a shame that this rich country has such a broken healthcare system. Rachel Scarborough King is right. The population is aging and our Congress is doing nothing to alleviate the care problem.
Deanna Downs
acton, massachusetts
To the editor:
I have no objection to anything Rachel Scarborough King said or argued in her opinion essay. I admire what she has accomplished. I admire how her family handled the situation they faced. And I completely agree that home care should be provided to those who need it.
But if I were diagnosed with a medical condition that left me bedridden and unable to perform basic functions, and I needed someone to change and clean my tracheostomy tube, and someone to respond to an alarm in the middle of the night, What if you need it and your physical strength is exhausted at the same time? There are family resources available to spouses and other family members, so I would like to have another option.
At that point I would choose medically assisted dying. This should be made more easily available to those who want it. I don't want to be a burden to my family, even if it's just in my own mind.
sheri cosen
westfield new jersey
To the editor:
Adi Barkan's relationship with one of his caregivers, Robert, reflects the close bond that often occurs between home care workers and the people they care for. As chairman of the New York State Senate Health Committee, I regularly hear from caregivers who love their jobs but are leaving their jobs because the pay is too low.
Although we have recently taken steps to increase home care wages, hourly wages are still not high enough to keep up with New York's high cost of living. And we know that even as we work to increase home care wages, that money isn't reaching workers. Instead, New York state uses private insurance companies to manage home health care for about 300,000 New Yorkers. These companies are reaping hundreds of millions of dollars in profits..
I am working to end this wasteful system and ensure that state funding goes into the pockets of home care workers. our bill is Home Health Savings and Reinvestment Actwould eliminate these expensive middlemen.
like new york age of population, The number of New Yorkers who need nursing care increases every year. We cannot afford to hand over millions of dollars of profits to private insurance companies. Older people prefer home care to nursing homes. So let's make sure we invest in our workforce so that our seniors can retire at home.
Gustavo Rivera
bronx
