I’ve been thinking lately about how we need a new language for family caregiving. For instance, what do you call the person being cared for? I mean, sure, I call her “Mom,” but the English language doesn’t have a good counterpart for the term caregiver. Care-receiver? That’s cumbersome. I notice in Great Britain the term “caree” often is used in conjunction with “carer.” Carer and caree. That’s a combination I could get behind.
Beyond this basic language about the relationship between one who provides care and one who receives it, the terms used for caregiving activities and products also need to change. So much of our terminology has been adapted from the language of parenting, and I feel it’s inappropriate. Some terms I would like to banish from the language of family caregiving:
- Adult diaper. Diapers are, by definition, for babies. Incontinent adults, regardless of their mental status, do not wear diapers. They wear briefs. Specifically, they wear incontinence briefs, underwear, or pads. Please do not demean (and do not allow professional caregivers to demean) your loved one by referring to incontinence briefs as “diapers.”
- Adult day care. While this is a technically accurate term, it again derives from the language of babies and children. Adults, no matter how advanced their dementia may be, are not children. While we may observe childlike qualities in their speech or behavior, they’re mature individuals. I’d like to see programs that reflect respect and dignity in describing what they do. Some suggested alternatives: Memory Care Center; Elder Activity Program; Day Respite Services; Senior Care Services.
- Parenting the parent. My friend Meredith Resnick, L.C.S.W., wrote an eloquent blog post recently about how “you can’t actually ‘parent’ a parent.” Sometimes, the tasks we perform for our elderly parent feel the same as ones we perform(ed) for our children, but the issue here isn’t the tasks involved. The issue is our relationship with our loved one. Our ‘caree.’ If our caree is our parent, he or she always will be our parent. We will always be their child. If people persist in claiming they “parent their parent,” I at least would like to hear them qualify this by saying something like, “Sometimes it feels as if I’ve become Mom’s parent.” Better yet, I’d rather they never used this phrase and instead characterized the relationship with loving and respectful terms: “I take care of Mom.” “I help Mom when she needs it.” “I advocate on Mom’s behalf.”
I don’t blame people for using any of these phrases. While family caregiving is as old as human existence, a new generation of caregivers is struggling to find its voice and define what it means to be a family caregiver today. But please, let’s not demean our elder loved ones by using terms that refer to babies and role-reversal when discussing what we do. Remember: our elderly parents once were young. They lived vital and vibrant lives. They have not regressed back into babyhood simply because a terrible disease now afflicts their brain. They deserve to be treated – and spoken about – with dignity. They’ve earned it.
Weigh in: Does the language of caregiving matter?