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Part 3: Resources One word that is perhaps overused in the professional cancer services field is a word that is also overused in many other humanitarian fields: “resource.” Sometimes, it seems like a catch-all. What do you guys offer? We offer resources! Hm. What does “resource” mean to you? To me, it means something that is drawn from by someone in need of help. Something that is stocked and available to give concrete assistance in a particular situation, and is either infinite in itself, or can be replenished. A replenishable replenisher, if you will! When I see fellow caregivers ask other fellow caregivers “what can I do? How can I help you?,” the answer is always the same. It’s an answer we see every time we ask the #LCCaregiver Twitter chat community the same question: what can your CG family do for you? What is the best way we can be a resource for each other? What can we do for you that is not already being done for you? The answer is so profoundly simple: be there. Listen. Lend a supportive ear. Be a safe space for venting. Sympathize. As much as we all sincerely want to “do more” or “be more” for those who are in our same situation, it seems as though the most important release we can expect from within the “pack” is the one thing we can’t really get from anyone outside the “pack:” understanding. As with any other experience in life, the bond formed when we realize that someone sincerely feels the same way we are feeling in response to the same stimulus is both profound and instant. Only our fellow CGs “get” how we have time to do the shopping and the laundry, but do not have the time to answer the texts or get to the post office (or vice versa), without requiring an accounting of our hours. I swear, my dear non-CG friends and family who may see this, that I know you do not require timesheets from me, but sometimes it feels as if you do. Meanwhile, people who have undertaken a similar journey are not surprised at all when I explain that the day somehow did not actually contain 24 hours as promised on the packaging. As useful (and awesome!) as it would be to live in a place where we could all physically pitch in for our fellow carers (a caregiving co-op of trusted co-carers? Say that five times fast…), it is MORE than enough to lend a shoulder and an “I hear you.” Your support is enough. YOU are enough. Something you have to say could make all the difference in the world for a new or overwhelmed caregiver. So: the number one resource that caregivers have are fellow caregivers. Find them. Reach out. You’re in the right place to start, here on the LCSC: use the Caregivers message board. Use the “LUNGevity Caregivers” Facebook group here: http://www.facebook.com/groups/LungCancerCaregivers/. Come find a buddy in the LifeLine program here: http://www.lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifeline. Come to our monthly #LCCaregiver Twitter chats! If you have been doing this a while, find someone who is new to the situation. Someone who needs to be told “it’s okay. I promise. You will find the new normal. It will become routine. I’m here.”
Part 1: Routines Are you a person who likes routines? Or are you a person who likes to play things by ear, deciding in the moment? See: I had always thought I was the latter. I am not the most organized person in the world (sorry, family!), except in those moments when I absolutely have to be. So, it’s always seemed easier to me to make plans on the fly, at the last practicable moment. Or, so I thought. Funny thing about lung cancer: it’s a “canceller.” A what? A canceller. Picture the big, important businessperson of cliché-fame telling her assistant to cancel all her appointments. All her phone calls. Something else has come up. Something bigger. Something that has to be handled NOW. Well, that’s a canceller. Lung cancer is one of them. It’s the feeling you get when you realize you don’t have your wallet. It’s the huge spider that’s headed for your foot that makes you not care that you’re dropping your pile of clean laundry. It’s the face you make when the grocery store is out of the one item you really needed for dinner (seriously. The ONE thing. The thing that made you get up and go to the store. Really?!). Only, worse. Much worse. I’m not saying anything new to you. If you’re here, it’s because lung cancer has reared its ugly head in your life already. I am so sorry for that. I do not mean to dwell in that place. Rather, I want to talk about the thing that happens after the “canceller” throws its wrench in your plans. It turns out, much to my amusement and chagrin, that we…well, we try and find routine. If I’ve said one thing to new caregivers more often than any other thing, it’s: “don’t worry: it’s terrifying now, but eventually it will become routine. No less terrifying, but it will become routine. You’ll find it.” Here’s another phrase I am certain you have heard: “the new normal.” “Our new normal.” “This is our new normal,” “we’re finding our new normal,” etc. See: even in the face of the canceller, we scramble to assemble pieces of routine to create a new façade of having planned at least SOME of what is going on. We crave a normal. And, what else is “normal” if not going about some form of daily grind, fairly certain about at least a majority of the events to happen in any given day? Trust me, I’m the kind of person who never would have thought she found comfort in routine. But, I do. And chances are, you do, too. The very nature of the “canceller” is that it is the event in your day that you never expected, never had written in your planner, and dealing with it requires a tightrope walk between the planned (appointments) and the unplanned (results). Like so many other perspectives and perceptions, becoming a caregiver cruelly removes this inherent ability we all have: to subconsciously rely on routines for safety, while all the while cavalierly denying the need for routine, thinking of it instead as a boring or stuffy way to live. Ohhh how foolish I was! I used to brag about not being a creature of routine: I craved spontaneity and I sought ways to keep the days interesting. I thought that the difference between getting coffee at the same shop in the morning on some days and in the afternoons on other days would save me from ennui. I really thought I had this all figured out. But then, when mom was diagnosed and we were figuring out our new roles and jobs and needs and priorities, I was left aghast at how I was suddenly and sharply yearning to wake up at the same time the next morning and get coffee at the same place and take the same grueling hours to get through my same inbox. I didn’t want to deal with oncology appointments and scan schedules and treatment research and insurance verifications. Who does? That grass on the other side was urgently bright green, and all I wanted was the down-to-the-minute synchronism of the day before the diagnosis. Who wouldn’t? Our routines are also where we as caregivers tend to notice our sacrifices in the clearest terms. “Okay—I can run these errands today and still get in about three hours of my own paperwork.” “Okay, well, that took longer than expected, and I didn’t have a good dinner planned, and that’s on me, my bad, so, well, I guess I can scrunch up that three hours into one hour and just do my best to get it all done.” “Well, okay. I really didn’t know the kitchen would take that long to clean. I’ll try to get my stuff done tomorrow.” And so on and so forth. It occurs to me to assure you that I am not complaining: I would never. Caregiving is a choice I made, and one I feel blessed to be able to make. I am just trying to give voice to what I have learned is a common but unspoken experience in the journey. The lonely hours I used to begrudge giving to email and other necessary evils are now hours of peace and quiet that I miss. How often, as a caregiver, have you been told to “take care of yourself first?” It’s probably a piece of advice you’ve heard many times, all from well-meaning folks: other experienced caregivers, or perhaps loved ones who are worried about you. I maintain that taking care of yourself is often antithetical to the idea of caregiving, but putting that aside for the moment, notice: so much of what we really want for self-care is actually just a return to routine. Time to get to a salon. Time to take on an organization project at home. Time to bake. Time to knit. Time to do any number of mundane things that got left on the back burner when lung cancer rang the doorbell (out of nowhere. Rude). For me, Sunday afternoons are the times when I am most aware of this juxtaposition. On Sunday afternoons (or, on holiday weekends like last week, Monday afternoons!), I try and take the time to do the small things that sit undone in the busy-ness of business hours: change dead lightbulbs, refill the coffee pod carousel, wind the analog clock. Odds and ends. It is meditative work. It’s repetitive. It’s calming. It needs doing, but I find such joy in doing it. It’s…routine. Routine is a teddy bear that gets taken from us, and we spend much of the process of coping with cancer and caregiving trying to pick the perfect replacement teddy bear. It has to be one we can afford, and it has to be one we can fit in our arms with everything else we must carry.
Part 2: Resets The beauty of the Sunday afternoon chores, in addition to creating a zen moment before winding up for the assaults of phone calls and emails and appointments that can come between 9am Monday and 5pm Friday, is that they serve as a sort of reset. A blessed, welcome reset. Whatever was undone from the week before is still undone (LOL!), but nobody died because of it. The cans of cat food that didn’t get moved from the kitchen counter to the bin in the pantry? Not lethal, it turns out. I didn’t have it in me, Wednesday evening, to move those cans to the bin. I just didn’t. One or two or three of us in this house had had a doctor visit, or there was a pile of paperwork with a deadline, and it was all we could do to three-musketeer (three-stooge?) through that particular endeavor before we collapsed. But, now, it’s Sunday afternoon. Tomorrow is a new start, with a new list of responsibilities and schedules, sure, but for now, I can luxuriate in moving those cans of cat food from this counter to that bin. That’s all that’s required of me in this moment. It’s delicious. It’s delicious, and it’s necessary. I am angry at cancer for so many things, but oddly thankful for this lesson that the small chore in the right time can be a way to wipe a slate clean before moving forward. A way to acknowledge what was done, forgive what wasn’t, laugh about it, and start from zero once again. And, if I try really hard, maybe I’ll even commit to that actual hour of work in the morning, instead of getting it swept off the board. Maybe I’ll be that organized. Maybe I’ll structure the day around what needs to get done, and finish the necessities with verve and focus, and by virtue of that organization I might have several hours to give to one of those back-burner projects. And, if I don’t, that’s okay, too. I will have replaced the light bulbs, and wound the clock, and moved the cat food from the counter to the bin. That’s a lot, and that’s enough.