“Thank you, thank you for what you do.” Those were the words I had been longing to hear. But Bob Schief, a facilitator for Caring for the Caregiver was the one who said them. He says it is how he begins the Caring & Healing Circles he facilitates. I am in a caregiving relationship for the third time in my life. When I was in college, I was the secondary caregiver in the last months of my father’s life. I have since blocked out the daily anguish, sacrifice and hardship of that time. Without regret, I remember the love, reconciliation and ultimately, the loss. I think I am not alone in what I call “Caregivers’ Amnesia.” A few years later, I was back in a caregiving relationship, but this time as the patient. My mother was rock-solid. She never wavered in her support or patience. Now my sister and I are the caregivers for our mother. Most of the time, I feel unequal to the task and guilty. But in spite of my guilt, sometimes I just want to feel appreciated. A simple and sincere thank you would be like being bathed in warm sunshine.
A caregiver is the person who has the primary responsibility for the physical and sometimes emotional well being of another adult at a time when the loved one cannot fully care for his or herself due to illness. Although there are reoccurring themes and emotions for caregivers, the daily triumphs and challenges of caregiving are as unique to the individuals involved as a fingerprint.
When a family member becomes ill, society traditionally believes that the person with the disease is the only one afflicted. Caregivers know the truth about the emotional costs of caregiving. The family lives with the disease as well, whether that disease is chronic, like diabetes or multiple sclerosis, progressive like Alzheimer’s disease, or terminal, like most forms of stage 4 cancer. There is little recognition and few resources for families and caregivers living with the stress of caring for loved ones. Caregiving tends to be an isolating experience. People tend not to disclose their struggles.
Beyond the emotional issues, there are substantial financial costs associated with caregiving. According to a MetLife study, the total estimated cost to US businesses for full-time, employed caregivers in 2006 was $33.6 billion.
Founded by entrepreneur Craig Jennings in 2008, Syosset-based non-profit Caring for the Caregiver is building a community for caregivers throughout Long Island. Using a “healing circle,” caregivers have the opportunity to have solution-driven discussions with others in similar situations. The organization is growing as caregivers come out of the shadows and seek the resources necessary to stay healthy and whole.
Despite the growth of assisted living facilities and communities, many families do not have the resources or the stomach to place a loved one in the care of strangers. These facilities have come a long way from institutional nursing homes of the past. They dot the landscape of Long Island and often look like resorts or quaint bed and breakfast inns. Some, like Gurwin Jewish Nursing & Rehabilitation Center, are expensive and filled to capacity. These facilities work hard to create a nice experience and most are diligent and caring, but there are no guarantees.
Set aside any preconceived notions about caregiving and who is giving care. In the 21st Century, according to “Women in the Workplace,” a 2011 report released by Inforum and Sphere Trending, over 70% of women work outside of the home. As a result, the idea of moving of a loved one into the home of the female child is not assumed anymore, although women are still more likely to take on caregiving responsibilities. According to the MetLife study, 40% of the caregivers are male. As a result, it is not unusual to hear about a son caring for his mother. The idea of Gen-X and Gen-Y women having to care for their children and aging parents is being turned inside out as increasing numbers of retired women care for their spouses and adult children who are both ill.
Albert Husband, a 72-year-old Brooklyn man, spent four decades living with and caring for his mother. Like most caregivers, he has no regrets. His mother passed away in 2006, but from 1965 until her death, they built a relationship that was “more friends and partners than anything else.” Husband was matter of fact about caring for his mother. “It was definitely different, but we had to get over it. It had to be done. I could not let her sit there and not be clean. Yes, there was embarrassment as first, but then you forget about it, and that was it. But it was kind of rough at first.” According to Husband, he never considered putting his mother into assisted living. “The black community favors at home.”
Dawn Morris, 43, of the Bronx was in the interesting position of being a caregiver by profession and having to be a primary caregiver in her personal life. Another common trait among caregivers was the willingness to take on more than most people would. While studying to become a Certified Medical Assistant, working full-time and raising a young child, Morris’ father was diagnosed with cancer. As a professional caregiver, she believes that patients able to stay at home with loved ones have better medical outcomes, but their caregivers are usually stressed to the breaking point. By the time she arrives to help, they are “emotionally a wreck.” Morris says many patients see her as “a constant.”
Linda Passaretti, 45, of Troy, NY relocated from Vermont to her home state, at age 34, to live with her dying mother in the last months of her life. Linda noted the complicated dynamic that can exist among siblings during the stressful time of caregiving. Because of financial assistance from her father, one of her siblings was upset, although Passaretti’s three other siblings were grateful that she was with their mother. Passaretti’s sister was her greatest disappointment during this time. She described herself as “emotional and reflexive” in giving care to her mother. But interestingly, Passaretti didn’t see herself as a caregiver. “I just was a daughter who was grappling with losing her mother, and I would have done anything.”
Sabrina Mark is at an age where most would expect someone would be caring for her. Instead, she has the unique responsibility of caring for her adult daughter, Selma*, who is living with sarcoidosis, a chronic illness, and her husband, Sean*, who is suffering from Alzheimer’s disease. “I watch two people I love disappear in front of my face every day.” Despite only having two four-day breaks in the past two years, a nursing home isn’t in the immediate future for Mark’s husband. “I do think about it frequently, but there are two things stopping me: Money—we don’t have the money—and he isn’t ready.” It is clear that after 61 years of marriage, she isn’t ready either. “He is not going to know the difference, but he’s a human being.” Mark said coming to grips with her role of caregiver is an ongoing process. “How are you going to get used to it? I can’t get used to it. It’s something that’s progressing.”
There are no surprising differences among caregivers, regardless of gender, age, race, relationship to the loved one, or depending on the disease. For those who have a supportive, empathic outlet that allows caregivers to care for themselves, such as Caring for the Caregiver, there is perspective and candor about the rigors of caregiving.
When listening to caregivers, the brightest line appeared between those who are actively engaged in caregiving, versus people looking back on the experience. Because the experience is rooted in love and family, the “Caregivers’ Amnesia” seems to be a common theme, but everyone seemed to recall the reality of dealing with bodily functions. Caregiving is a perilous path for many. “…you don’t know what’s coming, but you know it’s not pretty,” said Mark. No one, except Mark recalled the true anxiety of doctor appointments, the frustration of awful home aides or the sting of days when a caregiver feels unappreciated, isolated and overburdened.
Caregiving is one of the most complicated personal relationships one will ever encounter. Most caregivers would never want our pity, they lovingly chose this journey. In the final analysis, caregiving is a crucible of love. The lesson to be learned is how to give care without getting burned up in the process. There is much to learn. Our families benefit if we are more caring, but society benefits most when we learn how to support caregivers.
*At her request there are pseudonyms created to protect the privacy of Sabrina Mark and her family. She is a 79-year-old former resident of Brooklyn who retired to the south with her husband Sean in 1993.
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