Unwilling, End-of-Life, Family Caregivers (Research, Video 2:29)

Let’s be honest about end-of-life caregivers. While their contributions can be significant, they don’t always choose to have that role. Some caregivers enjoy nurturing loved ones and find the experience challenging and  rewarding. But few people talk about family caregivers who feel depressed, guilty, trapped in a hole with no way out except the death of persons in their care. 

Maybe unwilling caregivers were the only siblings living near the loved ones, the only relatives or friends with resources to provide care, or the only persons willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of their situations. If they had a choice, would they do it again? Some say they would not.

In a study about family caregivers and unwillingness to serve again, questions were asked about the following:

1)   Whether someone close to them died within past 5 years (25%)

2)   Relationship to the deceased

3)   Provision, intensity, and duration of care

4)   Supportive/palliative care services used

5)   Willingness to care again 

Former caregivers (9%) indicated they would be unwilling to provide care again regardless of time since the death, duration of care, education, and income.

It is interesting to note that older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome. Clearly, caregiving a loved one at the end of life can have negative ramifications that need to be addressed. In this video from the National Hospice and Palliative Care Organization, Anita Brikman explains caregiver stress and how to cope with it.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
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