Written by Charlene Thurston, RN, ANP & Francina Bardsley, MS

“Take care of the elders for they have come a long way; take care

of the children for they have a long way to go; take care of those in between for they are doing the work.” African Proverb

Since our last newsletter, we, at Hospice, have been focusing on developing a framework for a Caregiver Resource Program, a new initiative which would provide meaningful support to the many family caregivers of persons with chronic illness or disabilities in our community. Our intention is to again expand our services beyond those typically provided by hospices, so that much of the same support that is available to family caregivers of terminally ill patients, could be made available to caregivers of non-terminally ill persons.

The National Family Caregivers Association (NFCA) defines a family caregiver as “someone who has a deep personal relationship with a person who is chronically ill or disabled and whose own life has been impacted by their loved one’s condition.” The family caregiver may be an immediate or extended family member, neighbor, or friend providing care and support varying from 24 hours/day to intermittent care.

Many caregivers dedicate over 20-40hours/week caring for loved ones, care which is often both physically and emotionally demanding. Very often care is provided by people who are elderly themselves, and it is not unusual for the caregivers to become ill and wonder whether they’ll out-survive the person form whom they’re caring.

At other times, care is provided by adult children who are trying to balance work, spousal, and childcare needs of their own, with those of a parent who needs care. Added to their caregiving burden is the grief they feel over the increasing losses in their loved one’s health. The stress, exhaustion, and financial strain that can occur put caregivers, and often their families, at risk for emotional and physical illness.

The NFCA has given form to the insights of professional and family caregivers in its “Principles of Caregiver Empowerment.” These principles are presented as guideposts in the caregiver’s search for a sense of direction and inner peace.

Choose to take charge of your life. Don’t let your loved one’s illness or disability always take center stage.

Honor, value and love yourself. You’re doing a very hard job and deserve some quality time, just for you. Self care isn’t a luxury. It’s a necessity.

Seek, accept, and, at times, demand help. Don’t be ashamed to ask for help. When people offer assistance, accept it and suggest specific things that they can do.

Stand up and be counted. Stand up for your rights as a caregiver and a citizen.

Since caregivers are frequently unrecognized and receive little help and support in this task, our hope at Hospice is to bring attention to their needs and to try to develop services, in collaboration with other community organizations, that help decrease their isolation and provide respite, support, education, and practical assistance. We invite you to call or write us if you have any thoughts or ideas about how we might best meet these goals.

For more information on family caregiving, see the NFCA website (www.nfcacares.org).

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Funded by the Palliative & Supportive Care of Nantucket Foundation, the Palliative & Supportive Care Program is operated as a department of the Nantucket Cottage Hospital, which is an affiliate of Massachusetts General Hospital, and a member of Partners HealthCare. Palliative & Supportive Care of Nantucket is a specialized health care program dedicated to providing excellent physical, psychological, social, and spiritual care to persons with life-threatening illness and their families.

A Partnership in Caring

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