Can you imagine your doctor calling on a Friday afternoon with the diagnosis of mesothelioma -- a fatal form of cancer -- and leaving you to agonize about it until Monday? That's what happened to my husband, Ken Hamilton, and me, on May 3, 2002.
Can you imagine getting the news via telephone that your husband's aggressive lung cancer had spread? Can you imagine hanging up the phone, becoming hysterical in a hospital lobby, and not one person coming to help you? That happened to me in August 2003.
Can you imagine getting up every day with the feeling of utter powerlessness over your loved one slipping away? That happened to me for two years, from 2002 to 2004.
When you become a caregiver, your life instantly turns upside down. Without any training, you are thrust into a world of doctors, hospitals, tests and prognoses, and asked to make potentially life-altering decisions about your loved one's medical care. You're often exhausted, not thinking clearly, not eating, experiencing overwhelming stress, and feeling guilty when you take time for yourself. It's a recipe for disaster.
During our two-year ordeal, my husband received good medical care, but I, as his primary caregiver, felt depressed and pretty much at my wits end. I gained 20 pounds, went on anti-depressants, felt physically sick, and believed my needs were unimportant. I felt inadequate and constantly questioned if I was doing enough or the right thing. All thiswhile trying to care for two teenage daughters.
Sadly, my story is a common one for caregivers. At any given time, about 64 million people -- 29 percent of the U.S. population -- are giving at least 20 hours of care weekly to a loved one. A quarter to half of caregivers meet the criteria for major depression.*
After Ken passed away in 2004, the experience of caring for him profoundly affected me. I felt compelled to make a difference for other caregivers and asked myself, Whatcould have helped me as a caregiver? I came up with the concept of a caregivers center in a hospital, an "oasis" where I could have gone for respite, guidance and support. In 2005, I approached Northern Westchester Hospital (in Mt. Kisco, NY) about creating a community-funded caregiver center. As a patient-centered hospital, they totally "got it."
Following a successful fundraising campaign, the Ken Hamilton Caregivers Center (KHCC) opened in 2006. Two trained volunteer "coaches" and I began working with families, giving them the opportunity to share their feelings with a non-judgmental listener. Often caregivers would break down, cry and vent. I was amazed that they were willing to talk to a total stranger. I remember how the first time I asked a caregiver about herself, the change in her was dramatic. It was as if she came to life as a person in her own right. I learned quickly that caregivers' needs are often unmet, and that by giving them permission to value their own needs, I'm helping them take care of themselves.
Over the past 10 years, the KHCC has grown from three to 34 volunteers, and our staff now includes two social workers and a replication coordinator who guides facilities across the U.S. in adopting our model. We have had over 50,000 family interactions!
Our beautiful "oasis" at KHCC provides a wide range of resources and support to caregivers in the hospital, and at home in the community, as well as to long-distance caregivers and professional caregivers, all free of charge. Besides providing counseling, we act as an extra set of ears at patient-care team meetings and help caregivers debrief afterwards. Caregivers are so stressed they often can't process what the doctor is saying. We help caregivers understand discharge plans, advanced directives and end-of-life issues, and also provide them with community resources.
As hospital stays become shorter, caregivers are expected to provide more care at home,and isolation and stress increase. At one point, I had to give Ken medicine in an IV twice daily at home, and was told that doing it incorrectly could kill him. Can you imagine how scared that made me? And for those caring for a loved one with a chronic condition, there is no end in sight. This is why we began a Stay-In-Touch program to continue to be a lifeline for caregivers post-discharge.
In closing, Maya Angelou's words say it best: "...People will forget what you said, people will forget what you did, but people will never forget how you made them feel." We at the KHCC live by this belief and know how important it is to support the caregivers, an underserved and silent population. One of the greatest compliments came from Joel Seligman, President and CEO of Northern Westchester Hospital, who said, "I can't believe we ever functioned without a caregivers center." And so it became part of our mission to spread the model to even more hospitals and healthcare facilities. I am so proud that the caregiver center model has so far been replicated in 11 other hospitals.
I am humbled by being named a 2016 L'Oréal Paris Woman of Worth. I accept this great honor on behalf of all who are caring for a loved one. Know that your work is greatly appreciated!
* National Alliance for Caregiving in collaboration with AARP. Zarit, S. (2006).Assessment of Family Caregivers: A Research Perspective
Who is Caring for the Caregiver?
Who is Caring for the Caregiver?
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