In 2002, my husband, Ken, was diagnosed with mesothelioma, a rare form of lung cancer. Though I knew my husband was getting good care in various hospitals, I felt isolated, depressed and overwhelmed with having to navigate the complex healthcare system. I spent long hours in the hospital at his bedside. I gained 20 pounds and felt physically sick much of the time. I was constantly stressed out and at my wit’s end, all while raising a family.
After Ken’s death in 2004, I thought how wonderful it would have been if there were a refuge in a hospital where caregivers could go to “escape” and recharge themselves — an “oasis” of sorts, away from the bright lights and noises of the hospital, a place where one could relax, get advice about caregiving and avail themselves of some counseling.
I looked into what it would take to create such a center in memory of my husband. Although Ken died at another hospital, I selected Northern Westchester Hospital (NWH) in Mt. Kisco, NY, because it was recognized by the Planetree organization for being a model of patient-focused, family-centered care. When I approached NWH, they were extremely receptive to the idea of having such a center in their facility. Over the next six years– through community donations and a matching grant– we raised nearly $2 million for construction, furnishings, and an endowment.
In 2006, while awaiting the completion of the physical Caregiver Center (which opened in November 2007), we first developed the counseling program; free of charge, this program provided emotional support and advice for family caregivers from a professional social worker and trained volunteer coaches. We got referrals from doctors and nurses who recognized that they could use help in dealing with families of ailing loved ones. Among other topics, we provided guidance on end-of-life issues, health care proxies, discharge planning and how to talk to children about illness. The success of the program was apparent early on, by the appreciation from families and from the hospital staff. It was also very gratifying to see that the patient-satisfaction surveys reflected positive growth, which, of course, made the hospital administrators pleased.
The award-winning Ken Hamilton Caregivers Center at Northern Westchester Hospital, now in its seventh year, was the first of its kind in the New York Metropolitan area. Today, the Center has become a model for other hospitals around the country, including Montefiore Medical Center, Bronx, NY; Overlook Hospital, Summit, NJ; Mid-Michigan Medical Center, Midland, MI; White Plains Hospital, White Plains, NY; and Westchester Medical Center, in Valhalla, NY. The Center now has 28 community volunteers who offer support to family caregivers and has more than 7,000 interactions with patients and their families each year.
After seven years of experience in caring for the needs of family and professional caregivers, we are now offering a specialized replication package and consulting program to assist interested healthcare institutions with the development of their own family caregiver center. That includes long-term care institutions. With 46 million family caregivers nationwide, the need to support families is becoming more and more apparent. We are pleased to be able to help out in recognizing and nurturing the important role that a family caregiver plays in caring for the health of a loved one.
Marian Hamilton is the founder of the KHCC. Those interested in learning more should contact The Ken Hamilton Caregivers Center replication coordinator at [email protected] or 914-242-8128.