Gary Barg, Editor-in-Chief
I look to two colleagues I truly admire when discussing this particular subject which is something near and dear to my own heart.
Lynn Friss Feinberg, senior strategic policy adviser for the AARP Public Policy Institute and Howard Gleckman, author and resident fellow at The Urban Institute have written clearly about the importance of language when talking or writing about family caregiving. In part, their comments centered on the absurdity of the term “Informal Caregiving”. I can think of a slew of words which can be appropriately modified by adding the word informal, but as any caregiver can attest, caregiving is not on that list.
In fact, what Howard and Lynn have done is to awaken our good friend The Caregiver Curmudgeon, of whom little has been heard in the past few years. One of his pet peeves turns out to be the careless application of inappropriate language.
Some of the Caregiver Curmudgeon’s Communication Commandments
- Lest ye not suffer unto us the words “suffer,” "suffering with," and (worst of all) "victim" when talking about our loved ones. For example, a person living with Alzheimer’s disease also has many more facets to their existence of importance to themselves and those who love them. People do not need to be dehumanized by being categorized, classified and defined by their disease, in person or in print. The fact that our loved ones are battling these diseases or illnesses should not be their defining characteristic when writing or talking about them. (Feel free to replace the word “Alzheimer's" in the above sentence with any other disease, illness or disorder.) I am actually astonished by how many experts use these phrases in their press releases, books and writings. I don't know about you, but I think we can all do better.
- Honor thy father and mother as they would wish to be honored. I think we should strike the phrase “parenting our parents” out of the lexicon. Even if many of the tables have turned and you are performing a lot of the duties for your own parents analogous to parenting a child, they have never stopped being your parents. How about “Partnering with our Parents” or as in Howard Gleckman’s book title "Caring for Our Parents"? Even if they cannot offer any support as we care for them, and in fact if their mental state offers specific challenges to the help we do give, I think it is imperative that they at least feel as if they are still in charge. Ask Dad’s opinion about what show to watch; give Mom a basket of mismatched socks to fold when you are doing laundry. Only you know what technique might work for your loved one.
- Speaketh ye with love about those whom we love. I love to read when the people for whom we care are referred to as “loved ones” or even “clients” as opposed to “care recipients” or “patients.” One should only be referred to as a patient by their own care professional (and even then, I like the word “client” better.)
As they say in elementary school, “Sticks and stones can break my bones, but words can never harm me.” Perhaps, but they can stigmatize and negatively define a relationship in a way that you didn’t mean for it to be defined.
Ain’t nothing informal about that.
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