GRIEVING DISCUSSION BOARDS > Caregiver Support Discussion

Talking to the Outside World

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dsmyer1:
For families living with serious illness, ?the outside world? can create a dilemma. While the world outside of our caregiving circle can offer support and resources, it can also be a source of thoughtless commentary. People may question the care that your loved one needs, who helps you care for your loved one, or other important family decisions. Carol Levine, Director of the Families and Health Care Project of the United Hospital Fund, identifies some of the most common categories of ?unsolicited advice, unwelcome criticism and undeserved praise? that she had encountered in 17 years of caring for her husband. In her article, ?The Top Ten Things Caregivers Don?t Want to Hear?And a Few Things They Do,? she identifies some well-meaning but insensitive comments from outsiders, and some ways to respond. I think it is a ?must read? article for all?whether family caregivers or not. This article and other publications by Carol Levine can be found on the United Hospital Fund website, http://www.uhfnyc.org.

As a leader of caregiver support groups, I have worked with family members who were knocked off balance by ill-informed comments made by the outside world. They experienced shame, guilt and self-doubt. Walking through a park one recent afternoon, I found myself reflecting on the need for caregivers to be stable and rooted in much the same way as are tall, sturdy trees.  I encourage caregiving families to stay grounded, like a forest of redwoods, fed and upheld by strong roots that extract nourishment from rich soil. When we are grounded, we are rooted in our own knowledge, aware of the value of our own perceptions and experiences. And we can readily admit areas where we may need more exploration, training and support. For instance, we may need continued communication with the family members we are caring for, to be certain that we clearly understand their needs and preferences. We are open to training and feedback from the healthcare professionals caring for our loved one.

With support, caregivers can review the resources they have to work with, and their reasons for making their often painful decisions. In this context, they can feel safe to acknowledge areas where they are in need of information and help. They may begin to re-establish confidence in themselves, their knowledge and their caregiving decisions. They get a chance to neutralize others? quick judgments or unhelpful suggestions. As Carol Levine notes, instances of abuse and neglect are ?a big exception??and require professional intervention. But when this is not the case, comments made from a distance, from people who are not well-informed of the caregiver?s family situation, are often not beneficial.

This posting is an invitation to family caregivers to talk back to those who might have spoken in judgment of you thoughtlessly or from a distance. What would you say in response to things that were said to you by well-meaning people in the outside world? First, who comprises ?the outside world? for your family? Neighbors? Co-workers? How do you balance confidence with openness to potentially helpful feedback? With this posting you are invited to practice being grounded, and to consider the rich soil in which you and your family are rooted. Perhaps you can share with others the strategies that have helped you to effectively manage the outside world.

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