Who Cares for the Caregivers?

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“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” ~Rosalynn Carter

The number of people in the United States living with a life-limiting illness today is staggering. In 2013 (the last year for which accurate data is available), there were an estimated 14,140,254 Americans living with some form of cancer. Another 5.4 million have Alzheimer’s disease, and millions more suffer from Parkinson’s disease, multiple sclerosis and ALS.

Many of these people are relatively self-sufficient. They live alone, with a spouse or with other family members. They prepare their own meals, take care of their personal hygiene and manage their illnesses independently, for the most part. Others need ongoing assistance with activities of daily living, such as bathing and dressing and moving about. Still others are completely dependent on caregivers for their most basic needs.

AARP estimates that there were about 35 million Americans providing care for an adult over the age of 50 in the home in 2015. These caregivers are the “center and the soul” of the long term care system, said former Assistant Secretary for Aging, Kathy Greenlee, at a conference on caregiving in 2010. Nevertheless, these largely unseen and mostly forgotten “heroes” rarely receive the support or assistance they need.

“I am so tired,” said Marjorie, standing in her kitchen, clearing the dishes from the evening meal. A strikingly pretty woman in her late 40’s, Marjorie is a divorced single mother of two sons who are attending college in a city several hundred miles away. Until recently, she worked as a paralegal in a busy law office and enjoyed a vibrant social life.

Then her 73-year-old father had a catastrophic stroke. Paralyzed on one side, unable to speak and suffering from significant dementia, he requires almost constant care. Marjorie has two siblings, but neither of them lives close by. She has taken emergency family medical leave from her job, and receives a small stipend from the federal government for caring for her dad. Still, money is tight, and home health aides are expensive. So she does all of the caregiving herself.

“The worst part is that there is no end in sight,” Marjorie says sadly. “Isn’t that awful? Here my dad is suffering horribly, and all I can think about is that this could go on for years and years. But I can’t help it. I love my father. But I want my life back.”

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Marjorie certainly isn’t the first or the only caregiver to feel hopelessly stuck in a role she never wanted, wasn’t prepared for and acquired more or less by default. Few of us think that we may become a caregiver for an aging or ailing relative one day. What’s more, literally no one who hasn’t “been there” is capable of understanding the enormous physical, emotional and financial toll caregiving exacts.

“I feel so alone,” Marjorie explains. “So isolated. I have no one to talk to all day but a man who may or may not understand me and can’t speak. I try to be compassionate and loving with him, but I feel so….depleted,” she says. “And then, of course, I feel guilty and selfish and ashamed.” She smiles wanly. “It sucks.”

Nor is there any room in America’s healthcare system to provide respite or support for people like Marjorie. Her father is seriously disabled, but he is not dying and is therefore ineligible for hospice care. Her sons help out when they come home during school breaks, but those are few and far between. And her siblings “are oblivious” Marjorie says.

There is often a sense of hopelessness that accompanies long-term caregiving — an emotion that all too often turns into despair. In fact, a study conducted by the University of Missouri last year showed that one in four people who are caring for a loved one with a terminal illness suffered from clinical depression. And a third of them had symptoms of anxiety. What’s more, an overwhelming number of caregivers report that their own health has suffered since they took on the caregiving role.

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Sadly, there are no easy answers for people like Marjorie, or the millions of caregivers who share her helplessness, frustration and despair. Nonetheless, it’s terribly important that we who are not currently in the caregiving role do what we can to support them. And it is equally as important that caregivers reach out for help.

When I spoke to her a few months ago, Marjorie was certain that there was nothing she could do to improve her situation. But with a great deal of coaching and coaxing, she eventually reached out to her sister, Leslie, who lives several hundred miles away. When Marjorie told Leslie how difficult caring for dad had become, Leslie arranged a conference call with Marjorie and their older brother, and they came up with a plan for the three of them to chip in equally towards their father’s care.

“I had no clue,” Leslie said later. “I wish Margie had reached out to me months ago. I would have been there in a heartbeat if she had asked.”

Perhaps the first rule of caregiving should be: Never assume no one is there for you. You’re almost certainly wrong.

For more information on care-giving resources, visit Caregivers Action Network or the Family Caregiver Alliance at the National Center on Caregiving.

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.