Don’t Tell Me What to Do; HELP Me Do It! Or: If You Give a Caregiver a Cookie…
Entry posted by DanielleP
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I know it’s happened to all of us at some point during our experience as caregivers: the “self-care” lecture. Eat a vegetable! Take a stroll! Get to the gym, even for fifteen minutes! Get a pedicure!
And on, and on, and on…
How do these conversations make you feel?
I confess that they frustrated me immensely in the earliest days and weeks after my mom’s diagnosis. I was actively offended any time that someone had the audacity to suggest that anything was more important or more time-sensitive than navigating the maze of new information that we were tossed into. I just knew that anyone who could suggest I take time for frivolous activities was way out of touch with reality, and did not understand what I was up against. Worse: I had a feeling in my bones that they did not WANT to try and understand what I was up against. My family’s new normal was in conflict with the suggestor’s point of view on the world where everything was calm and copacetic and pedicures were still a possibility because there wasn’t too much else pressing.
Long story short, my friends: I was a wreck anytime someone suggested I take care of myself first. Furious and righteously indignant.
One of the most hurtful things I have ever taken to heart (perhaps unfairly, in retrospect) was an extended family member telling me to go get a manicure after I had texted her a photo of a cheap-but-cool new ring I had just bought while running errands. Her words cut me to the core. How dare she? After all, did she not know what was going on? Why did I deserve that amount of downtime, and how would I fit it in if I did, with all the stuff that needed doing? I was so close to saying “well, sure, if you want to fly here and relieve me for a couple hours!”
Oh, hold on. Wait a minute. I just looked in a mirror. What’s this I see?
I am STILL that person, still feeling those same feelings. They are hard to cast off, even four years after diagnosis, and even with our family somewhat regaining its sea legs and setting sail more confidently into the future than we did when lung cancer was new. I don’t feel this rage or umbrage as often anymore, especially since my parents themselves have been encouraging me to go and do and play and frolic, and I can honestly say I’ve had a few manicures since the “cruel” text. But, to this day, I definitely still build an immediate barrier between myself and any interloper who deigns to tell me to eat healthy and take more walks “because, after all, you can’t pour from an empty vessel.”
(Ohhhh how the empty vessel analogy used to boil my blood!)
I build the wall because something in my heart tells me that the person who would say those things does not understand me, my family, my parents’ illnesses, my priorities, my choices, or my daily schedule enough to be allowed to weigh in on what I do.
Here’s my thinking: no adult is unaware of the need to eat more vegetables and take more strolls and get more sleep. Nobody in their right mind would deny that this is the ideal. But a serious diagnosis upsets every single ideal that a person and their loved ones have embraced and looked forward to. The anticipated and planned future of day to day or year to year fades away, and survival becomes moment to moment. Anyone who has been through it knows this intimately, and I can’t help but doubt the wisdom (not the good intentions, mind you, but the actual wisdom) of those who have not been through this minefield to understand the situation well enough to tell me to eat a vegetable and have it be sagely helpful to my needs. In fact, I recently told a good friend, a fellow caregiver, that “eat better and get more sleep” must have become society’s newest “bless you!,” because I’m hearing it given automatically after telling folks about my situation, just as automatically as they would bless me if I had sneezed.
To put things more bluntly: anyone who has not experienced the particular choice of sacrifice for the sake of a loved one’s health/convenience/safety (etc) that a caregiver makes every day has no business telling me what to do, because they have no comprehension of the logistics of my day, and all that must fit inside it, and all the priorities that are NOT me or mine.
Don’t get me wrong: I am not advocating for a lack of exercise, sleep, or vegetables. Do I even need to include that disclaimer? I don’t live under a rock and I wasn’t born last night. But that is precisely my point: we must appreciate the intelligence and common sense of caregivers enough to know that such vapid advice does not add information or value to the caregiver’s toolbox. Instead, we as caregivers must encourage more widespread awareness of our situations and all they entail and require, so that people who do have the desire and intention to help can contribute more meaningfully than by speaking platitudes.
In other words: I frequently advise extended family and friends of cancer patients to refrain from instructing the caregiver, and to instead LEARN from the caregiver. Don’t tell a caregiver what to do. HELP the caregiver do what he needs to do. If you want him to have time to go fishing or get to the gym, then offer to cook a meal for his family. Better yet, just cook the meal and bring it over, without pressuring the afflicted family to socialize if they do not wish to.
If you are trying to support a caregiver, and if you remember nothing else I say here, remember this: try and understand that checking things off the “to-do” list can often be the most satisfying “self-care” that there is. Don’t guilt me for not eating vegetables or not going to the coffee shop when that same thirty minutes could be used to do a chore that’s been bugging me for weeks. Please trust the person actually living in the situation to know what would de-stress the person the most. Do not insert your assumptions. In fact, feel free to ask how you can encourage the caregiver in completing that stressful task. Don’t automatically resort to the incentives system you might use with a child (“hey, let’s get ice cream if you finish that paperwork by noon!”), but ask the caregiver in a meaningful way what support structure he or she needs in order to knock it out (and, hey, it might just be ice cream—the point is to not assume, and not to place yourself in a position of authority).
If you are a caregiver, and if you remember nothing else I say here, remember this: encourage those in your life (who honestly want to help) to think of a concrete skill they have or task they could fit into their own busy schedules, and offer them the advice that it would be lovely if they could use that favor as testament to their sincere intent to contribute to the team. Demonstrate that this is the way you could be given the extra thirty minutes in your day for rejuvenation. Empower and enfranchise yourself, caregiver friends: there truly are gems among your networks who want to assist you, but they’ve been given bad information by multiple sources and industries, so they don’t know any better when they suggest that extra piece of broccoli. Nobody is an expert in your situation except you. Nobody is an expert in your loved one’s experience except your loved one. You two should be the instructors, and everyone else in your circles should be the instructed.
If I had thought of that earlier, it may have saved me months of anguish and isolation when dealing with friends and extended family members, because I would have broken my assumption that they did not care to “get” it, and I would have filled my toolbox with helpful resources (in the form of helping hands) much more quickly than I did. Come to think of it, I also should have divorced myself long ago from the notion that someone must fully understand my situation before helping me, but that’s a story for another time.
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