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On the Spot with Fraught Family Caregivers

Posted By Barry J. Jacobs, Tuesday, September 18, 2012

Even before the designated hour was reached, my computer screen was filled with dozens of questions from family caregivers from around the country. When 3:00 struck, dozens more--expressing raw, vexed emotions--arrived in a long line. Scrolling through them, I saw that there were many similar questions from caregivers who feel guilty about resenting the loved ones they are caring for. Several contained consternation about demented loved ones’ resistance to having home heath aides in their homes or going to adult day care centers. There were two questions about the caregivers’ likelihood of developing dementia themselves.

I was the speaker/responder in an hour-long, live family caregiver web chat on the AARP website (here’s the link to the transcript). I felt like a grim-faced public official at the podium in a tense, post-natural-disaster press conference. I chose questions rapidly, tried to answer them soberly and succinctly, and then took a breath and plunged ahead with more questions. I was drained by the hour’s end.
Dr. Barry J. Jacobs
We have to go to them via every media outlet available to share what we know.

We have the goods they need.

It was a privilege for me to have been asked to participate in this event. The experience brought home to me two revelations:
  • There have been family caregiver advocacy organizations (e.g., National. Family Caregivers Association, Family Caregiver Alliance) providing excellent service to caregivers for 20 years. But when behemoths of the power and size of AARP (40 million members and growing) reach out to family caregivers, they set off a stampede. By recently adding a Caregiver Resource Center to its website (http://www.aarp.org/relationships/caregiving-resource-center/gettingstarted.html), AARP has helped define and legitimize the concerns of many of its members who are caring for aging parents and disabled spouses. By setting up frequent web chats with experts from its new Caregiver Advisory Panel, it has created wide-open forums for having those concerns addressed.
  • There is an evident hunger among family caregivers for the kind of information that medical family therapists and other family-oriented healthcare professionals know well. But most caregivers would never dream of seeking psychotherapy per se. Rather, we have to go to them via every media outlet available to share what we know. That could be bare-knuckled web chats or authoritative online articles or illustrative YouTube clips. We have the goods they need.

 

Barry J. Jacobs, Psy.D. is the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA and the author of The Emotional Survival Guide for Caregivers (Guilford, 2006). He was recently named to AARP’s Caregiver Advisory Panel.

 

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Matthew P. Martin says...
Posted Tuesday, September 18, 2012
Barry, I'm glad you survived your "bare-knucked web chat"!

Two thoughts: First, it's amazing to see the influence for positive growth a group like AARP can wield. It seems that their support for caregivers has really opened up a lot of doors. Hopefully this continues exponentially.

Second, good point about psychotherapy-phobia. I have found working in medical centers that describing the first session of psychotherapy as a "consultation" is helpful in allaying fears. Perhaps some family members and patients believe psychotherapy requires a commitment that they cannot agree to initially. So, consultation to me signifies a more brief, less confrontational appointment. In some regard, that first meeting with a family really is a consultation that could lead to more traditional psychotherapy.

Thanks for sharing your expertise on a very important subject!
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Lisa Zak-Hunter says...
Posted Tuesday, September 25, 2012
Barry, your blog reminded me of two dilemmas that MedFTs face.

1. Increasing visibility (within healthcare systems and the general public) and how the family systems piece influences the type of knowledge we bring to healthcare.

2. Finding avenues to disseminate our knowledge and ways to support families and healthcare professionals.

I agree that family members or caregivers may not identify psychotherapy as the way to help address challenges with patient care. In my experience, offering 'therapy per se' to a family facing medical concerns is met with the response 'we don't need counseling, it's not THAT bad'. There seems to be a thought that meeting with a mental health professional to discuss concerns with caregiving or how illness has affected a family is only reserved for the most challenging cases or the sickest patients. Therefore, when I step into an exam room to offer a brief consult with a patient, I sometimes question how I should introduce myself. 'Counselor' or 'psychotherapist' may send some people running whereas others might experience some relief! At times, I don't address it at all. I'll say something along the lines of 'My name's Lisa. I hear it's been crazy at home lately. How about if we talk about it and see what we can come up with to help you feel less stressed'. As the conversation continues, I look for cues from the patient or family as to whether another session is needed and whether its focus is 'therapy', 'consultation', 'education', 'support', or another word the patient/s use to describe what they are looking for. I encourage everyone in the family to come to get more 'knowledge', 'tools', 'tricks' etc. In that manner, I hope to match patients' and family members needs and expectations.
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Barry J. Jacobs says...
Posted Wednesday, September 26, 2012
Matt and Lisa--Thanks for the comments. RE; your recommendations for reaching out to therapy-phobic family members: I often present myself as a caregiver educator or consultant. Families that engage me in this way often then meet with me for periodic sessions--sometimes months apart--for the explicit purpose of gathering information and suggestions rather than doing affective, relational work. Sometimes these consultations deepen into something more akin to systemic family therapy. Sometimes not.

By the way, my recommendation for hospitals and churches which are trying to start up caregiver support groups is to name them caregiver education groups instead. It will be less stigmatizing for attendees and garner larger groups. Of course, many so-called education groups become warm-and-fuzzy, tear-jerker support sessions.
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