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  • BIOETHICS FORUM ESSAY

Help, I’m Drowning! Rescue Swimmers for Family Caregivers

During the 17 years I took care of my late husband, who was totally dependent because of a severe traumatic brain injury, I was frequently overwhelmed. Most family caregivers feel the same – sometimes, often, or always. They say, “I’m drowning” or “I can’t keep my head above water.”

And yet, health care and social service professionals typically say, “There is lots of help available, but caregivers don’t ask for help or don’t know where to go.” “Where to go” often means a phone number to call, where “information and referral” specialists send the caller on to other places to call. Hardy and persistent caregivers can find some help through these sources, but those who are already drowning usually give up and sink further below the waters.

Here’s an idea for a different approach, adapted from – of all places – the United States Coast Guard. Its mission includes rescuing people from sinking ships. But even when the helicopter rescue teams are on the scene, if the people in the water are so depleted and debilitated that they can’t get into the rescue basket by themselves, the mission will fail. A terrible incident in 1982, in which 33 members of a ship’s crew died while the helicopter crews hovered just a few feet above them, led to the creation of an elite team of “rescue swimmers.”

The idea is simple, although the training is arduous and requires mental and physical toughness. The rescue swimmer jumps right into the water, even in the worst weather conditions, and helps the people in distress help themselves. Once in the rescue basket, they can be lifted into the helicopter and flown to safety.

Apply the analogy to the caregiving situation. When information and referral are inadequate to help a caregiver in so much distress or so depressed that he or she is immobilized, a specially trained “rescue coach” could be assigned to jump into the waters right along with the caregiver. That would mean spending a day and ideally a night in the home, working along with the caregiver, directly observing what is happening, making suggestions on the spot, and also taking notes for future training, assistance, or whatever is needed. Unlike the person taking a phone call, the rescue coach can evaluate the whole situation and give realistic advice.

Don’t home health care agencies already do this? No. Home health care is highly regulated and organized around the needs of the sick person, not the family caregiver. Nurses are able to spend only a brief time in the home, and social workers are rarely deployed. The rescue coach idea, however, could be a special service available through home health care agencies. Paying for it would admittedly be a challenge, but its effectiveness and costs could be assessed.

There is of course no safe haven in caregiving, as there is in a successful helicopter rescue. But getting the drowning family caregiver to dry land would be a very good start.

 

Readers respond

I’m intrigued by the idea of “rescue swimmers” and the use of the USCG analogy, but I wonder how we might quantify the caregiver inundation that you describe. I also wonder how we would create norms for the cultural, social, and religious differences that we observe in various situations. What might be appropriate for my family might well be an affront to yours.

– Hal Lewis, M.Div., MAPF
Chaplain & Patient Advocate
Newman Regional Health

 

Thank God for Carol Levine and her willingness to share from her our powerful story. “Help along the way is so needed.” This is a wonderful way to start.

– Rev. Gregory L. Johnson
Assistant Director of Caregiver Programs and Community Based Activities
HIP Health Plan of New York

 

I have been struggling with how I could take my work one step further to help those whose stress and tasks have so overwhelmed them that even talking to them is a challenge. The idea of a rescue coach is very similar to the Patient Navigator concept that is contained in a law passed in 2006 but never funded. I had wanted to start a Patient Navigator program for some of our patients with little ability to implement needed health care changes in their lives. Once they leave the hospital, they often do not follow up with healthcare professionals and they “bounce back” for additional hospital days.

As a caregiver myself (my husband is transitioning to the middle stage of Alzheimer’s disease), I find myself overwhelmed with his needs. Even though I have a group of very wonderful friends who help, they are not there in the middle of the night to support me as I clean up accidents or to relieve me when I have had about enough of being followed around for 8 hours. I know there are responses better than I give to these and other issues in our house. I just don’t remember them in time to keep myself from making silly responses. Modeling and coaching would really be helpful.

Carol does point out the obstacle to such a program: finding funding. That is the biggest problem to most good ideas! I hope that we can find a foundation or other funding entity that would like to take a chance on a new concept – or maybe it could be a concept that people are already familiar with: using the principles of the navigator role to assist caregivers rather than patients.

– Jane Henderson, L.C.S.W.
Family Caregiver Training Program
St. Luke’s Hospital

 

I’m writing in response to reading “Help, I’m Drowning! Rescue Swimmers for Family Caregivers,” by Carol Levine. Some questions came up right away:
– Do you think this would be a paying job or a volunteer job?
– Would it be feasible to have both volunteer & paid staff?
– What qualifications do you think the “rescuer” would need?
– How would people get qualified?
– Would you Combine education and experience?
– Develop special training for already qualified health care workers?
– Develop special training for novices who want to move into the field?
– Some other kind of training?
– How would you find a venue to be the first place to try it out?
– What do you need to translate this idea into at least a test framework?
– How would you figure out if it’s working?
– Where would one look for funding when the test program has its bugs worked out?

This sounds like a great addition to the range of services available to caregivers!

– Katrina Wynkoop Simmons, BRFSS Coordinator
Center for Health Statistics
Washington State Department of Health

 

What an excellent idea! In our Family Caregiver Support Program we send an Information Specialist to the home to assist the caregiver in learning about and connecting with resources and supports available in the community or on the web, but it would be so great if we could also send out someone who can give specific caregiving training. Right now we do send out nurses to do what we call “mini Fundamentals of Caregiving,” where safety techniques are demonstrated in the home and general information about nutrition, hydration, and skin care issues is disseminated. How much more effective it would be to have a behavior expert there as well.

This idea is certainly worthy of serious consideration. It would be a win-win situation, with caregivers able to provide informal care longer and loved ones able to remain in the least restrictive environment of their choice longer. Now if we can only convince legislators of the fiscal soundness of such a service….

– Lynne Van Horn
Family Caregiver Support Program Coordinator
SE Washington Aging and Long Term Care

 

Yes, this is exactly what is needed. This would be akin to family preservation service model which provides short term crisis and emergency services around-the-clock to keep families together in the Child Welfare System. All that is needed is the will to “raise the bar” in what we expect of caregiver supports; good models are available for how to do the work

– Richard C. Birkel, Ph.D.
Executive Director
Rosalynn Carter Institute for Caregiving
John and Betty Pope Distinguished Chair in Caregiving
Georgia Southwestern State University

 

Yours is one of the best articles I’ve read in a long time about caregiving. As a former caregiver myself and now an Information & Referral Specialist, I think you have hit the nail on the head. Caregivers are so overwhelmed and exhausted at times that the last thing they can think about, or even have time for, is calling all the various numbers they are given, to find help for their situation. We do need to take this a step further, zero in on the needs and even make those calls ourselves, if possible.

Thank you for such a succinct article.

– Pat Hilgendorf
Asheville, NC

Published on: May 2, 2008
Published in: Caregiving, Health Care Reform & Policy

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