Caring for the Caregivers

With caregiver burnout on the rise and quickly becoming a serious healthcare dilemma, finding ways to help the family members who care for the injured and the ill has become a national focus. “The caregiver is often the silent patient; they are stressed, not eating or sleeping, but often nobody asks them how they are doing,” says Patricia Boyce (right, center), Director of Westchester Medical Center’s Caregiver Center Program. Mary Delaney, LCSW-R (left), Director of the Family Resource Center at Maria Fareri Children’s Hospital at Westchester Medical Center, further explains, “Maria Fareri Children’s Hospital and WMC have the highest acuity/case mix in the United States; our patients are some of the sickest and most critically ill anywhere.  This type of service helps the caregiver cope with so many things which they feel are totally out of their control.”  This is why WMC has created two distinct caregiver services programs.

The Family Resource Center at Maria Fareri Children’s Hospital offers families a comforting place to decompress, borrow books for their child, use computers, etc. It’s also a hub for families to gather information, have their laundry done by volunteers and access library services. The Caregiver Center Program is staffed by Boyce and a part-time Coordinator, Loretta Fabel, LCSW-R.  It is an outreach program whose volunteer staff provides support, resources and information to families and friends in both the main hospital and Maria Fareri Children’s Hospital.

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Boyce and Delaney shed some light on what it takes to offer state-of-the-art caregiver services, and tips on how caregivers can avoid burnout.

Patricia Boyce, Director of the Caregiver Center at WMC

What is so special about WMC’s Caregiver Center Program?

At WMC we treat the sickest of the sick, we are the only Level 1 trauma center for 8 counties and as an example –we are the only burn center between NYC and the Canadian border, so when a patient’s family arrives they may have traveled hundreds of miles from home.  Many families may be in shock and need help finding a place to sleep, get their daily medications or buy clothing because they rushed to get to their loved one in the hospital and didn’t stop to think of the resources they would need. The Caregiver Center Program is staffed by trained Caregiver Partner volunteers, who round in all ICU’s and floors in WMC and Maria Fareri Children’s Hospital. We provide families with information from where to eat in the hospital, to maps of the area, hotels, pharmacies and places to shop, as well as referrals for social workers, chaplains and other professional staff.  We follow up daily, visiting these families to provide continued support.

Why is “caregiver burnout” such a big deal?

I recently read in AgingCare.Com that 30 percent of caregivers’ deaths precede the loved one they were caring for.  Having a loved one hospitalized can be very frightening, traumatic and overwhelming for caregivers.   We want them to know that they are not alone and we are here for them. Caregivers themselves often neglect their own medical issues and place themselves on the back burner.  That’s something to think about! That’s why this program is so important.

What can caregivers do for themselves to avoid burnout?

First of all connect—don’t isolate—and develop a support network. Make a list of friends, family and community partners from whom you can find help.  Communicate your needs. Focus on the good. Even if you are in a situation in which you find out your loved one is critical condition, try to care for yourself by exercise, eat and get rest.  Caregivers tell me that writing a journal daily helps reduce their anxiety. Stay positive.

What is the most important service you provide caregivers?

Supportive listening is the most important service we provide.  Within the intensive care areas and throughout the hospital we connect with the families and friends of the patients.  We provide compassionate supportive listening and offer resources within the hospital and community.

Can you give us a “sneak peek” at what to expect from the new Caregiver Center being built?

We just broke ground on our new Caregiver’s Center. It will be right off of the lobby of the main building to invite and engage caregivers; we’ll be the first thing you see! We will have an education room to help inform and empower family members, and a therapy room that offers reflexology, Reiki and massage. A spa shower, amenities and afternoon tea time will offer caregivers an opportunity for relaxation, rejuvenation and recharging of their battery.  And we will provide a resource center with computers, fax machines, etc. It will be a mirror of what we are doing now but enhanced. We are excited to be building this state of the art Caregiver Center to serve our families and visitors.

Mary Delaney LCSW-R, Director of the Family Resource Center at Maria Fareri Children’s Hospital

The Family Resource Center provides families a place to decompress and access resources, but what other important services do you provide?

Sometimes a hospitalization is for a few days, however, it is not uncommon for children to be here several months. The FRC’s role is to help families by providing them with support –whether it seem large or small. Support comes in different forms. The Family Laundry Room is staffed by volunteers. The role of this volunteer is to do the family’s laundry AND to provide supportive listening to the family.  Additionally, volunteers staff the Traveling Library, which lends books to children who are unable to leave their beds. FRC volunteers are trained to provide emotional support as well as information about concrete resources both of which help the families in coping with the hospitalization of their child.

What are the biggest stressors for parents with hospitalized children?

They are faced with a lot of juggling.  This includes providing for other children at home; keeping up with the responsibilities of their job(s); paying bills and navigating the new territory of the hospital in order to provide for their sick child.

What is the most challenging part of your job? 

As a licensed clinical social worker who has worked in the hospital setting for 20 years, I believe the greatest challenge is to accompany the family members during one of the most difficult times of their lives and assure them they are not along during this scary time. The journey can feel very lonely and we want the families to know that we are there for them and they are not alone.