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On Routines, Resets, and Resources: Part 1 of 3

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DanielleP

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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.

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Danielle,

Oh my, there is so much to digest in part 1 but that said, I yearn for parts 2 and 3 of your Three Rs.  

Lung cancer: the surprise that keeps on surprising.  I was the patient.  I had it easy compared to my wife's continuous reset of her life while tending to me.  This is wisdom for the ages.

Well said, no extremely well said!

Stay the course.

Tom

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Thank you, Danielle.

Thank you for putting so eloquently everything that I feel and everything that I don't know how to say (or don't want to say). I personally thrive with schedules and routines. Anything out of the ordinary puts me in a fury and I want to melt. My mom's cancer feeds my fury daily!  I typically want to punch people when they tell me to make sure I am taking care of myself. Your statement "so much of what we really want for self-care is actually just a return to routine" hits the nail directly on its head.  There is no better way to describe the joyous and often tumultuous job of care giving. Thank you, thank you. I am crying because someone else "gets it" and has so perfectly written what so many of us feel. 

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On 9/7/2017 at 9:15 AM, Tom Galli said:

Danielle,

Oh my, there is so much to digest in part 1 but that said, I yearn for parts 2 and 3 of your Three Rs.  

Lung cancer: the surprise that keeps on surprising.  I was the patient.  I had it easy compared to my wife's continuous reset of her life while tending to me.  This is wisdom for the ages.

Well said, no extremely well said!

Stay the course.

Tom

Thank-you so much, my friend! That means the world, coming from you. I wouldn't exactly say you patients have it "easy!" It's so strange how it's all a dance of different responsibilities and different sacrifices. Thank-you so much for your kind words.

Right back atcha. 

DP

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On 9/7/2017 at 4:14 PM, Steff said:

Thank you, Danielle.

Thank you for putting so eloquently everything that I feel and everything that I don't know how to say (or don't want to say). I personally thrive with schedules and routines. Anything out of the ordinary puts me in a fury and I want to melt. My mom's cancer feeds my fury daily!  I typically want to punch people when they tell me to make sure I am taking care of myself. Your statement "so much of what we really want for self-care is actually just a return to routine" hits the nail directly on its head.  There is no better way to describe the joyous and often tumultuous job of care giving. Thank you, thank you. I am crying because someone else "gets it" and has so perfectly written what so many of us feel. 

Steff,

Oh, my friend! Thank you for your kind words. Thank you so much for commenting and venting! I feel you. I love how you say "melt." That's such a perfect word. And I feel the exact same way when people tell me to take care of myself. I know they mean well, and I know it's healthy, but...you know. You get it! Please reach out to me ANY time. The beauty of us understanding what each other are going through is that we can BE there for each other! Sending you SO much love, girlfriend!!!

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