Ok, so this recently came up in one of my FB support groups and I feel it’s so important I actually put it in the “Helpful Tips For Cancer Caregivers,” section of my blog and I want to post it as an actual blog as well since I know it won’t notify anybody that I made a change to my site. We as caregivers do a lot more than just “give care,” it’s not about wiping asses or changing diapers it’s mental, it’s emotional and physical support. To me personally, “caregiver,” is almost an insulting word since it’s not really descriptive enough to actually convey what one actually does as a caregiver. Or, maybe it does as many caregivers don’t really have to do much at all…or so they think. Again, it’s much more than just many people think. Anyways….this was my response to somebody who felt he/she felt they didn’t do that much and that because it was just being/caring for a loved one the term didn’t apply.
Ooooh boy do I have something to say to you (name redacted)..my dad is the most stubborn, most hard headed, most arggggg man in the world. I’m 32, he’s 63 and I’m pretty sure he was born in the wrong decade. He’s like one of those WWII vets that can do anything and everything on his own and will never, ever accept help from anybody. Truth be told, he can. He doesn’t really need my help most of the time but here’s what he does need. He needs somebody to vent to. He needs somebody around so he doesn’t get lonely. He needs an “emotional punching bag,” to which I am not exactly happy about but I take it because if he didn’t I know he would internalize all of it and it would not be good for him mentally and emotionally. He would overdo it and I can tell when he does so I’ll sort of jump in and not ask if he needs help, I just sort of…start helping out with stuff…lawn work, taking in groceries that I know are too heavy that he shouldn’t lift. I clean the litter box before he can because I know his immune system is shot. He refuses to let me call myself a caregiver so a lot of times I just call myself his son. I live with him because I’m a college student and it takes the financial burden off of me so I can spend more time on my studies instead of having to work as much…I make excuses so that in his eyes he’s taking care of me and that gives him purpose. I’m his “battle buddy,” against cancer, I’m his “comrade in arms,” I’m his “helper,” when he needs it or his “driver,” if he needs to be sedated and they won’t let him drive home. Am I his caregiver, you bet your ass I am. Am I allowed to call myself one? Nope. But, would he be better off without me? Absolutely not. A caregiver is more than somebody who wipes somebody else’s ass because they can’t. We recently had to evacuate because of hurricane Irma and had to take a ton of stuff with us to Orlando. Do you think he could’ve done all that on his own? No way. I mean, could he have? Sure. Do you think it would’ve put more stress on his body and shortened his life because of it? Maybe, probably. Would it have exhausted him to the point where he may not have been able to ride out the storm over at my grandparents and also keep an eye on them since they’re octogenarians and make it more difficult to keep an eye on them since he was especially worried about them? Absolutely. The term “caregiver,” is a very broad term. You’re absolutely right. He’s not your patient, he’s your loved one. A patient is somebody under the care of a medical professional which you are not. A caregiver is somebody who cares for a loved one in a time of need, which you are doing. You are caring for a loved one during a time of need, ergo, you are a caregiver. Call it what you may, the word irrelevant. A few months ago I was asked to be part of a study or whatever where they paid me to do a phone interview about being a caregiver for somebody with multiple myeloma and the last question they asked me was “What do you think we as medical professionals should change for caregivers?” My immediate response “Stop calling us caregivers. We take offense to the term and so do the people we “take care of,” as we don’t take care of the person we love. We offer assistance, we go out of our way to do what needs to be done, we do what some family members can’t or won’t. We are their battle buddies against cancer, we are their comrades, we are so much more than what a single word can describe and the medical community needs to be more understanding of that. The medical community needs to treat caregivers as patients just as much as they treat the cancer patients themselves. We hurt, we anguish, we get depressed, we need help too as the journey we take is painful and takes a toll on us whether we are incredibly involved or hardly involved. Our loved ones take offense to the term as they don’t want to be cared for, they want their independence and they deserve to be treated as individuals who are capable of doing so much more without a specific term that denigrates their capacity to live their own lives.” I think they got the point as the interviewer didn’t say anything for about 30 seconds and maybe she was just taking notes or maybe she just didn’t know what to say but she followed up with “Oh, ok, wow. I didn’t think of it that way.” To again which I said “And that is exactly the problem. When a patient checks in somewhere with a caregiver, why not have somebody say oh, and who is with you? Oh, your son, wonderful, glad he’s here too! And leave it at that.” We know what we are and what we do. Don’t feel bad about terminology. It’s a word. That’s all it is. Just a word.