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Caregiver, Care Partner, or Dementia Slave: or, this job by any name still sucks

1/14/2023

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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.
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