Prose & Comments: Hospice is for everyone

What is “hospice?”

Almost all dictionaries agree it’s a program of care for a dying person in his or her home provided by a hospice organization.

What you won’t find in any dictionary, however, are essential words associated with hospice: dignity, compassion, comfort and support.

Here on Shelter Island, East End Hospice (EEH) has made it possible for patients to spend their final days at home.  Since 1991, patients and their families have received thoughtful, compassionate care, surrounded by their loved ones, far in distance and spirit from impersonal hospital rooms. There are currently five EEH patients on our Island and, over the years, there have been over 250.

As a hospice worker in Manhattan, I’ve heard, “To accept hospice is to admit defeat.”  East End Hospice begs to differ. It’s a pro-active organization offering palliative care in many forms, including visits by nurses, social workers, pastoral care, nutritionists and volunteers providing a broad range of support. In this all-inclusive process, not just the patient, but also the family is cared for.

Through these many services, hopes can be realized — for freedom from pain, for resolution of a strained relationship with a loved one, for help making difficult and confusing decisions, for comfort in knowing those left behind will be able to rely on hospice for bereavement services.

Camp Good Grief is a shining example of how East End Hospice touches those who have lost a family member. A day camp for kids ages 4 to 17, the camp comes to life for one week each summer. For years the camp was held here at Camp Quinipet. Now it moves among varying locations, and this year will be in Wading River. For all of the 200 plus kids who attend, it’s free of charge.

I spoke with Liss Larsen, whose mother, Nancy, died unexpectedly in May 2012 on Shelter Island.  At the urging of a friend, Liss sent her two sons, Ben and Ollie, to Camp Good Grief. They got so much out of the experience (while having a ball), they returned last year.

One of the extraordinary aspects of hospice is support comes from so many different sources that healing and insight can come at unexpected moments. Take Liss’s case: “While registering my sons, the director asked me questions about them, ‘Are they sleeping well? Do they have strong friendships? Has their behavior changed?’  I thought I was the only one grieving. She made me think more clearly about how my sons were dealing with their grandmother’s death. She opened a door and engendered awareness in me.”

The death was recent when the boys first went to Good Grief. But Liss feels their second year was more useful in sorting out the boys’ emotions. “Because they’d had a year to process, there was a kind of mentorship to the first-timers. They said things to the other kids like, ‘I know you’re really hurting, but you’re going to feel better in a year, so give it time.’ They helped the newcomers understand the pain could diminish without losing the memory of the loved one.”

To better comprehend how Good Grief gets kids eager to return to such a non-traditional camp experience, I spoke with Sarah Zimmerman, the bereavement coordinator for EEH.  “The kids do a lot of hard work during the two hours of daily therapy, but we make sure we send them home with a smile,” Sarah said. “Each day ends with a performance with clowns or a carnival or dancing. It sets them up to be with their families.”

Asked why the camp isn’t a sleep away, Sarah responded, “After an emotional day, they need to be with their own pillows and teddys at night.”

Another reason for making Good Grief a day camp is that a lot of healing happens when the kids get home and share their day with their families — who, of course, are also grieving.

Which brings us back to one of EEH’s core beliefs: Their programs aren’t just for one person, the patient. They’re for everyone close to that person because the trauma of losing a loved one is one of life’s most profoundly painful experiences. Over the years that I’ve done this work, I’ve heard repeatedly that hospice’s support made the difference for everyone, patient and family, in accepting something so intolerable.

Liss summed it up: “When a family member dies, there’s a great deal of isolation because we’re constantly sheltering the feelings of the people around us and ourselves. Knowing there are professionals who can support us, who aren’t immediate family is a relief. East End Hospice is there before, during and after to break down that isolation and give support that is unconditional.”

East End Hospice provides all of their services to everyone in need, regardless of ability to pay.  Some of what they do is covered by insurance, but a lot isn’t. This is where you come in: EEH relies on donations to make up the annual shortfall of approximately $800,000. Please visit eeh.org or call 288-7080.

The cycle of life being what it is, even if you don’t need them now, you or your family can count on them in the future.

Deborah Grayson is a nutritionist working for Visiting Nurse Service of New York.