Caregiver, Care Partner, or Dementia Slave: or, this job by any name still sucks
Here’s another discussion that I find can get quite heated some days. What should we call ourselves? The current trend is “care partner” which implies that our loved one is assisting and part of our “team” in the battle of dementia. I get it. I do. I also get where some people might feel that this is misleading as there is not as much “partner” as they would like.
Let’s look at some definitions:
Caregiver: “a person who provides direct care (as for children, elderly people, or the chronically ill”. Makes sense, right? We’re providing direct care. We’re making appointments, filling prescriptions, dealing with insurance, taking care of every worry. Some might read this as direct care in a more literal manner; meaning that they are doing everything for their loved one who is unable or incapable of any self-care. I get that too.
Care Partner: “A care partner is someone who assists a licensed nurse with caring for patients. They form strong relationships with patients and help them with everyday tasks.” Also true and relevant. We assist the nurses, doctors, and other professionals in our lives in caring for our “patient” or loved one. We already have these strong relationships and assist with everyday tasks. The word “partner” implies equality in my mind, which any caregiver would agree is not how it feels in the dementia process. I can, however, see where this term would be more acceptable for those with memory loss, especially for those who are more aware of their situation. Sometimes just changing that one word can prompt them to be more agreeable to accepting help.
Slave: OK. I added this one for a little humor, but in reviewing the definition, it might be closer to the truth than we’d like. A slave is “a person held in forced servitude” or “a person who is completely subservient to a dominating influence”. Sound familiar? While I sincerely hope the term “dementia slave” never becomes a thing, it sure can feel that way some days.
I think in the same way as we described dementia, it really comes down to us and our relationship with our loved one living with dementia. Does Care Partner make you feel more comfortable? Perfect! Is Caregiver better for you? Perfect! Find what fits best and go with it. In all honesty, there are so many other things that demand our attention in this hot mess called dementia. And truthfully, polishing up the name doesn’t change the job. It still can really suck.
I had someone ask me the other day why I’m so comfortable referring to dementia by its name. My immediate, blunt response was “because that’s what it is”. But the more I thought about it the more I realized that while I call it what it is, doesn’t mean that everyone else is OK with that. I’ve worked with PLENTY of clients who assured me that there was nothing wrong with them (although they couldn’t remember their spouse’s name, where they were, or why they were seeing me) and that I was a dirty liar by saying they had any condition that might imply otherwise.
Here’s the scoop. Call it what makes you and your loved one the most comfortable. Some of my folks and I call it by the specific type of dementia they have. With Lewy body we call it “Lew” and talk about it like he’s another person in their life who is like a naughty elf who just likes throwing wrenches and making their life miserable. I’ve found that a lot of people living with Lewy body appreciate this approach and find it easier to talk about it when we do. I’ve done this with other conditions as well (especially as many are named after the physician who identified it. I’m sure they were great guys who are, unfortunately, associated with a horrible illness. Doesn’t make me stop bashing their name though) with some success. Others want to just call it memory loss. Some want to talk about it with the full title (I have Frontotemproal Dementia) and some don’t want to talk about it at all. I’ve even had a few make up completely different titles for what they have because it works for them. Perfect!
My point is, this is not necessarily a fight worth having with someone if they are not comfortable calling dementia dementia. While I tend to be an overly direct person, I’ve also done enough tap dancing to make Fred Astaire look like an amateur to work around someone’s discomfort with their disease process. I know what’s really going on and I know what they need to help navigate the journey. What we call it, is not as important as all of that.
What’s in a name? Well, with dementia, it doesn’t really matter what we call it. It still stinks.