Friday, April 22, 2011

Reluctant End-of-Life Caregivers: Would You Do It Again? (Research, Video 3:10)

Most people don’t set out to become caregivers. Some enjoy nurturing loved ones and find the caregiving experience challenging, but rewarding. Few people talk about caregivers who feel depressed, guilty, trapped in a hole with no way out except the death of persons in their care. Maybe they were the only sibling living near the parent, the only relative or friend with resources to provide care, or the only person willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of the situation. If they had a choice, would they do it again? Some say they would not.

In a study reported in the “Journal of Pain and Symptom Management,” factors associated with an unwillingness to become caregivers again were reviewed. Former caregivers of palliative care patients were interviewed. Comparisons between those who would do caregiving again and those who would not were made with these results:

1)   One in 13 (7.4%) former caregivers indicated that they would not provide such care again.
2)   One in six (16.5%) would only "probably care again."
3)   Increasing age and lower levels of education controlling for spousal relationship lessen the willingness to care again.
4)   Despite most active caregivers being willing to provide care again, a
proportion would not.

This Visiting Nurse Service of New York video titled “How to Relieve Stress When Caring for an Aging Parent or Spouse” presents ways to cope with caregiver stress.

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.


  1. I just stumbled on your blog. I am a computrt novice....becoming more venturesome because of becoming a "reluctant" caregiver and needing an outlet for boredom and guilt for feeling the way I do.. I definitely would never volunteer for this, but neither can I back away from doing the best I can to help my spouse of 53 years thru this period. I was doing quite well until dementia set in making facing each day more arduous and more challenging. It doesn't help knowing that his dementia is not (yet) as debilitating as others, it's just that it seems so unfair. Life should not have to end this way, and I can't help wishing he had passed away months and years ago when he was near death. I do not thank modern doctoring abilities that saved him for this! And for the months when he was in a nursing facility with both of us hating every minute of it. Thanks to hospice care we were able to bring him home, but now he doesn't really know where he is a lot of the time and I am the only one hating every minute of this useless life! There, I have now gotten my frustration off my chest. It would be interesting to know if others share

  2. Thank you for responding in such an honest manner. Your feelings are more common than most people want to admit. I notice that you are receiving hospice care, but your words "boredom and guilt" and general frustration imply that you could use additional support. Have you sought extra respite care for yourself and counseling through the hospice social worker? After your husband dies, you can still receive bereavement support from hospice for at least a year. The Alzheimer's Association can also provide you with assistance now and later.

    Continue to be honest with yourself. It helps with your own growth and healing. Take good care of yourself in terms of sleep, diet, etc., and request help from others if you feel you are overwhelmed. Be sure to monitor closely your husband's advance directives stating how you want him treated or not treated medically (no resuscitation, hospitals, feeding, etc.). While your frustration with this situation is understandable, at this stage, it would be best to accept his limitations and focus on making the most of shared quality time with the time you have left together. I wish you both the best on this journey.