To the Editor:
Re “Caregivers Helped Us Be a Family. We Were Fortunate,” by Rachael Scarborough King (Opinion guest essay, Jan. 8):
Ms. King, the wife of Ady Barkan, who died in November, shares the stark reality of what it means to be a caregiver for someone with amyotrophic lateral sclerosis. Their caregiving journey underscores the political and policy choices that have led to inequalities and challenges in accessing quality care.
Receiving dignified care should be a fundamental right for all. Legislators need to pass a federal paid family and medical leave policy, like the FAMILY Act. Caregiving causes disruption in work, career and financial security for the caregivers. Without paid time off, it is almost inevitable that providing long-term caregiving leads to financial instability.
Paid family and medical leave also enables disabled persons to work and contribute to the economy by allowing them paid time to manage their own care. The Family Values @ Work Network has helped win paid family and medical leave in 13 states and Washington, D.C. State wins are the blueprint for a successful national program.
Paid family and medical leave make it possible to be there for people who need us, whether for a short or long period of time, whether for them to recover or take their last breath.
Ady Barkan’s advocacy significantly contributed to advancing the rights of workers and their families. At some point, we will all need to give or receive care.
Josephine Kalipeni
Berwyn-Heights, Md.
The writer is executive director of Family Values @ Work.
To the Editor:
Do you remember how you felt during the pandemic’s shelter in place? Were you stressed when your world shrunk to the walls of your home? Were you annoyed by limitations placed on you?
I liked that time. I wish we could go back. No, I don’t wish for another pandemic. But I long to be like everyone else as I was back in those days.
I am an informal caregiver for my spinal-cord-injured husband, living in a limited world. Shelter in place was a respite from feeling different as an informal caregiver, obligated by passion and duty to spend more time at home loving and caring for my husband than being active in society. I suspect that other informal caregivers can relate.
While Rachael Scarborough King’s essay describes professional caregivers supporting her family, many of us informal caregivers provide care because the recipient of our care is not quite dependent on professional caregiving. We fill the gap, often wearing multiple hats as unpaid and untrained nurse and/or therapist (physical, occupational, respiratory, mental health).
We strive to make our care recipient’s life easier and healthier, with little outside recognition of our value.
Julie E. Yonker
Grand Rapids, Mich.
To the Editor:
My husband was diagnosed with amyotrophic lateral sclerosis just as the Covid pandemic hit, in April 2020. By December he was completely paralyzed and on a ventilator. He needed help 24/7. With Covid restrictions, friends and neighbors were not available to help me.
We were fortunate to be in contact with a wonderful nonprofit, Compassionate Care A.L.S., in West Falmouth, Mass. We were provided with medical equipment that insurance would not cover. A lawyer suggested that I divorce my husband of 54 years to reduce his assets so he could qualify for Medicaid. We found an agency that specializes in A.L.S. care, and its employees were here faithfully, day and night, until he passed away.
At the cost of $20,000 a month I was able to keep him at home, where our family could love and support him. Most people don’t have the resources I had. Their loved ones are sent to ill-equipped nursing homes.
It is shameful that this rich country has such a broken health care system. Rachael Scarborough King is correct in pointing out that the population is aging, and our Congress is doing nothing to alleviate the caregiving problem.
Deanna Downs
Acton, Mass.
To the Editor:
I have no quarrel with anything that Rachael Scarborough King stated or advocated in her opinion essay. I admire what she has done; I admire how her family has handled the circumstances they were dealt. And I totally agree that in-home care should be available to those who need it.
But if I am ever diagnosed with a medical condition that leaves me bedridden, unable to perform the basic functions of life, in need of someone to change or clean a tracheotomy tube and to respond to alarms in the middle of the night, while depleting the family resources available to the spouse and other family members, I want another option.
I would choose medically assisted help in dying at that point. This is something that needs to be more readily available to people who want it. I do not wish to be, even if only in my own mind, a burden to my family.
Sheri Kocen
Westfield, N.J.
To the Editor:
The relationship between Ady Barkan and one of his caregivers, Robert, reflects the close connection that so often develops between home care workers and those they care for. As chair of the New York State Senate Health Committee, I regularly hear from caregivers who love their work — but are leaving the job because the pay is too low.
Recently, we took steps to raise home care wages, but the hourly rate still isn’t enough to keep up with the high cost of living in New York. And even as we work to raise home care wages, we’ve found the money isn’t reaching workers. Instead, New York uses private insurance companies to manage home care for nearly 300,000 New Yorkers — and these companies are pocketing hundreds of millions in profit.
I’m working to end this wasteful system and ensure that state funding goes in the pockets of our home care workers. Our bill, the Home Care Savings and Reinvestment Act, would remove these expensive middlemen.
As New York’s population ages, more New Yorkers are going to need care each year. We can’t afford to hand millions of dollars in profit to private insurance companies. Older adults prefer home care to nursing homes — so let’s make sure we’re investing in the work force that will allow them to age at home.
Gustavo Rivera
Bronx