To me, it's just semantics. All of us who regularly come to this site provide care for our spouses in a zillion ways. Whether we are called care givers or care partners, we are all in the same boat to one degree or another. We could easily be called care providers or whatever. A 'label' won't change what we do ... or how we do it ... or the issues we all find ourselves dealing with on a daily basis. As for me, I still see myself primarily as a husband trying to help his wife deal with what is on HER plate ... while, at the same time, trying to deal with what is on MY plate as I provide that help. As long as I can come to this site, I don't care what I'm called!!
Oh, I get so tired of words changing w/out changing anything, then others get angry and you get accused of not being Politically Corret or worse. I was my DH's CG, but I never stopped feeling like I was doing it because I was his wife. No way I'd do it for a stranger or do it for a living, I'd never be happy as a nurse. Decades ago, some women didn't like being called 'housewives,' wanted to be called things like 'domestic engineers,' or whatever. This group can't be called that or that group must be called this and you can't say 'man[' you have to say 'person.' Yeah, there are some words no polite person would ever use. So call me caregiver, or whatever, just don't call me late for dinner.
When I read Teena Cahill's paper on the subject, I took it to mean that it's more of an attitude adjustment than a renaming of the role. I had never thought about the fact that my husband still tries to be my partner--when he sees me doing something around the house he asks if he can help me; he tells me he loves me and thanks me for taking care of him; he is affectionate and demonstrative. Yes, it's no longer a 50/50 deal--far, far, from it! I'd say it's more like 95/5, but the point is, he's still willing to do what he's able to do to contribute to the partnership. Before reading her paper, I don't think I was focusing on that.
Ehh... I felt like Joan described at first--too aggravated and disappointed by the un-leveling of the playing field to be interested in the term "care-Partner." But acvann is right--it's semantics.
(As for "housewife"...ick. No can do. If I describe why, it may put ladies who don't hate it like I do on the defensive. Semantic, again, but I'll just say this: If I'm a housewife, then any person--MALE OR FEMALE--who has not followed a linear, job-focused path through life is also a housewife.)
At the moment, "Care-Partner" feels awkward to me, like any new term trying to gain a foothold. I recall that in the 60s-70s, "Ms" felt awkward for a time, but now I'm quite used to it, and generally prefer it to the other options. (Likewise, my brother-in-laws Chic, Matt, and Corky switched their names to Chase, Wade, and Gordon, all about the same time. That took some getting used to.)
So, care-partner could catch on. But it does feel like it's stretching a bit. Reaching for a twinkle of reciprocity which--through no fault of his own, obviously--my husband is completely unable to muster. So, there's a feeling that if I adopt the term--I'm a CARE-PARTNER!--it falls into the same category as when I talk about, for example, taking my kid college visiting: "WE took Gabe to see Dinky College last weekend." Well, "WE" were both there, to be sure, but one of us was just along for the ride.
Ultimately--at least for now--I don't think I'll go with it. I would still feel like, while I might be saying "I'm a care-PARTNER!" it would still be just me, standing there shaking an inert ragdoll and insisting that the two of us make decisions together.
(also--I didn't read the Cahill article in depth, and would NEVER rank my caregiver burden against someone else's--but I have to wonder whether her husband's stroke robbed him so completely of the vitality and life that seeps away from our AD spouses day by day. In other words--We know what happens here: Our people turn into ghosts...shadow people of themselves. That which you once saw in their eyes...that spark that says "I'm in here"...goes to flickering, then extinguishes. Maybe in her stroke-impaired husband--through all his infirmities--there's a spark left that enables her to see the partnership aspect.)
Care Partner sounds to me like you have another person helping you with the decisions and cargiving responsibilities. I don't think it fits me. Sweet Pea
I can see wanting a word that separates the aide who is called a Caregiver from the spouse (or other family member) who is the primary person responsible for seeing that a patient receives care. But frankly, there is no partnership involved in what I'm doing for my husband except that my daughter is sometimes my partner in seeing that he is safe and cared for.
I'd rather that they come up with another word for the aides. I'd prefer to keep the Caregiver word for me.
There is one huge difference between caring for someone with dementia and someone who has had a stroke and can benefit from cognitive therapy. And that is the fact that they can BENEFIT from cognitive therapy. My husband has had such therapy twice now. Once it helped get him diagnosed, and in the last month it locked down what is happening to him with is dementia. You can't fool a cognitive therapist. If you are dealing with stroke and not dementia, you can be a partner. That other person may be temporarily locked inside their own mind, but it isn't going to last. They will find ways to communicate again because they still have the ability to communicate.
Using the term Care-Partner to describe DH's efforts to still participate in/be a help with our daily life does help focus on a behavior he still has but is losing. There a couple chores I have yet to have to take over, though I hve filled in a few times. When he stops doing these little things I miss them. The things he still does remind me of the bits and pieces our daughter took on as she grew up. They were appreciated, but they didn't make her a partner. Reality is: we are well past the point where he is a partner. I am a Caregiver.
What is wrong with calling aides aides? If they need to distinguish from nurse's aide, then call them caregiver aides.
Unlike others, my hb does not tell me he loves me or appreciates all I do for him. He has told my sister that but not me. He tells my sister his greatest fear is that I will leave him. He tells my sister a lot of how he feels but not me and that infuriates me. I have told him that but it does not good. So we are not partners as far as I am concerned in this journey.
Sometimes I am given one title that just about makes smoke come out of my ears. More than once I've gone to a new doctor and been asked about what I do for a living. I tell them that I am a full-time caregiver to a husband with dementia. They then say, "Oh, you're a housewife". No, I'm not a housewife. I've been a housewife at various times in our marriage, and that was a picnic compared to being a full-time caregiver. Sometimes I wonder if they even cover dementia in medical school, or if these doctors skipped class that day.
My vote on caregiver vs. care partner: I vote for caregiver. Care partner implies a shared responsibility, an equality of some sort, at least to me.
When I first retired, if I met someone who asked what I did, I would say I was retired. Now, when that happens, I say matter-of-factly that I have a full-time unpaid job. Of course, that always provokes another question, and then I explain that I take care of my husband who has AD.