I mean, if I have a caregiver (and there are many in my life who offer me care), should I not then be the caretaker? But no. By definition, a caregiver and a caretaker can be the same thing. And with ambiguities like this in the English language, how are those of us needing care, let alone the general public, supposed to understand the subtleties of this delicate topic?
Many People in My Life Give Me Care
When I consider those many in my life who offer me care, I mean it in the broad sense of what multiple sclerosis (MS) care means to me. The man who mows the lawn, the woman who cleans the house, the butcher who will deliver if I need, the neighbor who calls in for tea if I’m not seen out of the house for a few days … these are all people who offer me care in relation to my disease and its ever-changing needs. But are they my caregivers? My wife, Caryn, above all, is there to offer up care. From my household chores she may need to take on from time to time to the tasks that are simply no longer possible for me, she is surely a caregiver-caretaker. But she is so much more than that and so, frankly, am I. The term used more here in Ireland and in the U.K. for a person who cares is “carer.” Like horse riding rather than horseback riding (because where else would you ride on a horse), the more succinct term feels a bit closer. Still, it feels clinical and one-sided … and that’s where my issue lies.
Caring Requires Input From Both Parties
All of these care terms — caregiver, caretaker, carer — imply that one party offers and the other receives. But I feel that I am a participant in the care process. Along with those who help us, we comanage the level of assistance we might require from one day (or sometimes hour) to the next, and it goes beyond healthcare delivery. How is it that the accountant I use to do my taxes — because mathematics beyond the simplest equations is no longer possible — isn’t considered a carer? Before MS, I did my own taxes, and now I don’t because of the disease. How is that service not “care” in the sense we’re using? Surely many professions are used by those of us with health issues simply because we have those issues. I want to recognize all the people who offer care to me, but I want to do it without feeling like I am a burden to them or a drain on society as a whole. And that’s the thing about those care terms: They make me feel needy, and that’s one thing I could do without feeling. We can need without being needy. We can require care without being caretaken. We receive care from many people. We also give care to some around us. In the care we receive, I like to think that I am an active participant in deciding the level of assistance. Like deciding if it’s a day for a cane or a forearm crutch, the level of required help changes and, if that help comes from others, we have a responsibility in that care as well.
My Preferred Term: ‘Care Partner’
The term I like to use is “care partner.” The partnership isn’t always a 50-50 split. If I’m being honest with myself, it’s hardly even 60-40, but I do carry a share of the load, even if it’s not my fair share. But there is responsibility to and for both parties in a partnership. A partnership also implies an agreement. I agree to pay people to help where appropriate, and to simply accept the help and say “thank you” when it’s offered in a manner where payment would be insensitive. I agree to ask for a little help before I get to the point of requiring a great deal of support. We can agree to a watchful eye if we’re given a little slack to try things for ourselves without judgment. So others may acknowledge National Caregivers Month in November, and so will I. I’ll just thank those who help me without labeling them as anything other than my partners. Wishing you and your family the best of health. Cheers, Trevis
