Ch. 29. We are “Care Partners.”
Pat and I recently attended a local conference for professionals treating dementia patients. People there were using the term “care partners” as against “caregivers.” Since language does affect behavior Pat and I decided to consider the differences between these terms. Fortunately, several bloggers have written about this matter. One particularly useful one was written by Linda Shin on a blog about Huntington’s Disease maintained by Stanford University. But I’ll summarize the thoughts of others here as well.
One author noted that the term “caregiver” itself represented a positive transformation from “caretaker.” Caregiver implies more respect than caretaker; it is less objectifying. Still, though, caregiver suggests that someone is providing care for someone who is unable to care for him- or herself. There is a basic inequality between caregiver and care receiver that is built into the concept.
The term “care partner,” however, is egalitarian in principle. Lewy Body care partners collaborate as equals as they wrestle with issues such as medication choices, living arrangements, and finances. It’s much more a two-way street involving cooperation and mutual respect. And, for me, “care partners” reflects our 53-year marriage. I suppose we’ve both become care givers at times, say when one of us was ill, but overall our relationship has been founded on the principle of partnership.
The term care partners also makes room for family members, friends, support group members, and paid professionals as part of a shared community.
Let me provide one example of how care partner works better than care giver for me. As Pat and I have discussed my taking time off (partly to help prevent another melt down), at first, I was haunted by the idea that I was abandoning someone who would be left helpless, unable to take care of herself. After all, she was the care receiver, a passive role. But Pat is not helpless. When she realized what was occurring, Pat was able to sit me down so we could talk together about my need for away time. Together, we came up with a plan. True, Pat agreed, she might need some assistance when I’m away. However, Pat and our children could easily resolve those issues.
So, considering myself a care partner rather than caregiver is a tremendous relief. I don’t have to do this alone. We are still a team. We are partners in care and partners in caring.
Pat’s comments on We are “Care Partners.”
In my opinion a person whose partner is diagnosed with something may feel badly about themselves as well. I think that’s very unnecessary and “care partner” to me implies I am giving respect back to Ron and perhaps he needs that. There is a basic inequality between “caregiver” and “care receiver” that is built into the concept and I am not sure it is always necessary.
And I don’t always need a child to add to my care. Often, I can handle things on my own except I cannot drive.