If you spend as much time as I do plugged into the Internet’s caregiving community, then you will have undoubtedly come across this infamous picture:
Every time a blogger writes about “caregiving” or “caregiver” this picture, or a variation of it, is thrown up on the screen.
Chimamanda Adichie, a novelist, warns of the dangers of telling a single story: “Our lives, our cultures, are composed of many overlapping stories… If we hear only a single story about another person or country, we risk a critical misunderstanding.”
Considering the number of ways to illustrate the concept of caregiving, not to mention the enormous diversity of the caregiver population, the consistent use of this particular image will tell only one “caregiver story.” Elder care. Senior care. Aging parents. Alzheimer’s care. Dementia. However you slice it, this image focuses on the story of a daughter taking care of her elderly mother who is suffering from age-related conditions.
And, as it happens, that’s the story the public and media tell over and over.
News channels like NBC, CNN and FOX give exposure to women caring for parents regularly (even still, this caregiver story isn’t told nearly as often as it should be). Oprah (and even the AARP!) focus almost exclusively on caring for elders.
This is absolutely not meant undermine the tireless and courageous work of adult children caring for parents suffering from dementia or age-related conditions. People on the “front lines” of caregiving are often found in these circumstances. In 2012, 15.4 million caregivers cared for someone with Alzheimer’s and almost 70% of these those caregivers are were women.
Out of over 65 million caregivers, those 10.5 million women caring for loved ones with Alzheimer’s represent only one story. So let’s consider the stories that AREN’T heard: How about those caring not for someone with Alzheimer’s but another kind of dementia, like FTD or Lewy Body? How about the son caring for his parents? Or the husband caring for his wife? And the father caring for his child with special needs? What about the daughter caring for her mother with cancer? Or her father after a stroke? And her child with cerebral palsy? How about the caregivers who are feeling exhausted and overwhelmed?
The question I pose to the reader is this: How can we hear the breadth of caregiver “stories”?
We can start by listening to the fearless caregiver advocates who are sharing them: Donna Thomson of The Caregiver’s Living Room; Trish Hughes Kreis of Robert’s Sister; Michael Bloom of The Accidental Caregiver’s Survival Guide; Christy Shake of Calvin’s Story; Heather McHugh of CAREGIFTED; Jean Wolf Powers of Dialysis of Healing.
And these are only a handful of many people who get up every day to write, sing, play, speak, or shout their version of the “caregiver’s story.”
We avoid the critical misunderstanding of a single caregiving story by diversifying the images and words that tell them.
Help those who haven’t yet been touched by caregiving understand that we make up a third of the United States’ population. Not only does this help educate the general public, but representing caregiving as the all-encompassing experience that it is, will help others identify the assistance they provide as caregiving, enabling them to better take care of themselves. Over 90% of caregivers, after they self-identify, become more engaged in seeking out resources and information to support themselves and their patient.
The image of “caregivers” as two white women, one elderly and wheelchair bound while the selfless, happy daughter sticks by her side, is only one look at a highly diverse and complex population.
Help another caregiver by telling your caregiver story.
At The Caregiver Space, we’re not interested in one particular group of caregivers– we’re focused on them all. We recognize that you may be caring for loved ones with two or more conditions, or that you might not even be caring for “loved ones” at all.
Our non-profit organization’s online community is for all caregivers caring for any condition. It is a safe place to connect with other caregivers who understand the feelings that come with caregiving regardless of their circumstances. Start by telling your story here on The Caregiver Space.