As my sister-in-law’s cancer journey nears its end this week, I have found myself spending a lot of time thinking about the last 7 months. Elizabeth has been raw and honest in sharing her own journey as a cancer patient (and now survivor!) on her blog. I haven’t done as much reflection here.
That’s in part because feelings are complicated (duh), and while writing has always been how I process feelings, I haven’t always felt comfortable sharing my thoughts in this public forum.
Then, last week, I had a conversation that made me think that by not sharing my experience, I’m doing a bit of a disservice — to both myself and to other caregivers who might appreciate knowing they’re not alone.
I get a lot of comments from people about how “strong” or “amazing” I’ve been as one of Elizabeth’s caregivers. I appreciate those sentiments so much. When they come from people who are (or have been) caregivers themselves, I know they understand firsthand how draining and hard the role can be. But you know what? There are a lot of times I haven’t felt strong or amazing. I’ve felt weak and helpless.
And I’ve felt guilty. A few times, it’s because I wanted to do more but couldn’t. But mostly, the guilt stems from a belief that I don’t have a right to feel anything. Certainly, I haven’t felt like I have a right to complain. Nothing I feel is as intense or raw or emotional as what Elizabeth is going though. And my role in caregiving pales in comparison to what my brother has — and continues — to do.
So whenever someone pays me a compliment, I compulsively put it in perspective: “I’m not doing nearly as much as Steve.” A friend inquires about my feelings, and I deflect: “It’s been a good week. Elizabeth seems to tolerating the chemo better now, and her spirits are high today.”
In quieter moments, I question why I can’t be more open and honest. Why do I feel compelled to devalue the nice things people say to me? Why can’t I allow myself to express my own feelings?
I’m going to dedicate this post to those feelings, no holds barred. No sugar-coating. No diminishing language.
Cancer f#%king sucks.
It sucks for the patient, obviously. It sucks for the spouse, also obvious. If the patient is the center of the suckage universe, the spouse/partner occupies the next ring out. And the next ring in the orbit is home to a small group of immediate family and best friends.
That’s the ring I’m in. Let’s talk about what that felt like.
I felt grief.
For the first 3 weeks after diagnosis, I cried every time I was alone. I cried on the way to work, and on the way home. I cried when I drove to the grocery store, and I cried in the parking lot of Home Depot. I cried behind my closed door at work.
Most times, I didn’t even know what I was crying about. I tried to hide my grief, minimizing it because I was not in the center of the cancer circle, or even in that first ring. I didn’t feel like I deserved to feel grief at the intensity that I did.
But what I learned is that grief will not be denied its opportunity to exist. Ignore it and it will leak out every chance it gets.
Eventually, I found a support structure — both formal and informal — and that helped provide a healthier outlet for the pain. Mostly, it helped connect me to other people who could empathize, and who could offer advice (REAL advice… we’ll get to fake advice in a moment) about how to cope and move forward.
I felt lonely.
My lowest point: a day after Elizabeth’s emergency surgery, my parents flew in. I was exhausted, scared, and overwhelmed as I arrived at the Elmira airport to pick them up. Once I got inside, I looked on the “arrivals” screen and found that their flight was listed as “diverted.”
I inquired with a Delta employee at the ticket counter: “Excuse me, what does ‘diverted’ mean?”
This is what she said: “We’re not sure. We have never seen that before. We’re trying to get the control tower on the phone.”
This is what I heard: “The plane has crashed and everyone is dead and now you don’t have parents.”
I lost it. I literally crumbled onto the floor and started sobbing. My bag came off my arm and everything tumbled onto the floor: wallet, chapstick, several packs of gum, a pair of fuzzy socks I wore at my brother’s place the night before, a toothbrush, half a bag of M&Ms that had been my lunch, used tissues, a plastic baggie of alfalfa pellets (another story), random pieces of paper from the hospital, old receipts and about $7 in coins.
The Delta employee didn’t know what to do. I scooped up my belongings and she picked up my cell phone and asked me who she should call. Her words barely registered. My brain was screaming: MY PARENTS ARE DEAD AND MY HUSBAND AND BROTHER ARE AT THE BEDSIDE OF MY CRITICALLY ILL SISTER-IN-LAW AND I AM AN HOUR FROM HOME WITH NO ONE TO HELP ME.
I don’t know if this technically was a nervous breakdown, but if it wasn’t, I don’t ever want to have one. And when my parents showed up a few minutes later (because in aviation language “diverted” apparently means “we’re having a small computer glitch and the plane will arrive in 10 minutes”), they barely made it through the security doors before I collapsed on them, heaving into their shoulders. It took minutes before I could even tell them why I was acting so insanely.
That is my worst, most drastic example of the times I felt alone. There are others. While other people exist in the same ring of caregiving as I do, we were all dealing with our own stuff. We couldn’t always be there for each other, and people on rings further out rarely understood — really understood — what I was battling at any given time.
I’m a classic introvert. I relish the moments I get to be alone. But there’s a big difference between choosing to be alone and feeling lonely.
Caregiving can feel very, very lonely.
I felt useless.
A few weeks ago, we received some potentially troubling news. “Potentially troubling” is code for “possibly catastrophic.” Everything turned out OK. But in the hours after the news was first dropped on us, Steve asked me to meet him.
We sat in a coffee shop for a couple hours. We talked about what little we knew, what little we understood and what might happen next. Then we stopped talking because there was nothing left to say. I made a few feeble attempts to offer assistance: can I go pick up dinner for you? Can I drive you somewhere? Can I go take care of the animals at the farm? No. No. No.
And then I stopped talking. Steve and I stared at one another, at the wall, at his computer, then back at each other. I realized my role was simply to be there. So we sat there and just allowed ourselves to feel it all. It hurt. It hurt like someone had taken a sledge hammer to my heart, and Steve’s face and body language suggested that he felt even worse.
Of course it would have felt better for me to do something. I wanted to help. I wanted to make things better. I wanted to take away the pain. I wanted to make life easier for two people who don’t deserve to go through this. I wanted to buy dinner. Do laundry. Feed the dogs. Pay a bill. ANYTHING.
It took me a while to realize something, and it sounds kind of stupid when I write it out, but here it is: Caregiving isn’t about me.
It would have felt better TO ME to do something. If I’m running errands or doing farm chores or making cookies, my mind is occupied. I am helping. I have control.
I want to be doing. Doing means I don’t feel useless.
But sometimes caregiving means total silence. Sometimes it means listening without offering solutions or advice. Sometimes it means acknowledging the pain and uncertainty, or embracing the fear and grief. Sometimes it means accepting that we have no control.
This journey taught me that there are some people who can’t be that kind of caregiver. They need to do. They fill silences with words, freezers with dinners, and vases with flowers. Those are very useful caregivers, believe me. We had a lot of people who helped in significant and unbelievable ways.
But for me, there was value in learning how to be a caregiver who can be okay just being there, sitting in silence, reaching for a hand, or embracing in a hug that lasts whole minutes.
Being able to do that — fighting the urge to do or say anything — was incredibly difficult for me. In those moments, my brain would yell: “Do something! Do anything! Take away some of the pain for these two people you love!”
There were a handful of times when I was alone with Steve or Elizabeth, and I was a caregiver who did nothing. I felt useless. And I’m learning that perhaps that means I was actually somewhat useful.
I felt annoyed. Sometimes angry.
Many people don’t know what to say when they hear about a loved one’s cancer for the first time. Here are the things I heard the most:
- God has a plan.
- The universe/God only gives you what you can handle.
- Everything will be OK.
- My dad had colon cancer and died.
- My great aunt had colon cancer and lived.
- My friend had <another disease that’s not even cancer> and she’s doing great now.
- I bet she got cancer because <whatever environmental concern the person has at the moment>.
I know people are trying. I know the intent is to help. Unfortunately, none of those comments are actually helpful.
Books have been written about this subject, so I’m not going to try to repeat everything here. I will just tell you about the hardest part for me.
Most times, I could shrug off the comments. But some of them really, really ate at me. These included “you’re doing too much” or “your brother should be doing that” or “you shouldn’t be expected to do that.”
People have a lot of opinions, and they aren’t afraid to share them. But no one else is me. No one else has the relationship I do with my family. No one else has to live with the consequences of my decisions.
On my best days, I ignored the “advice” and the thinly veiled judgements. But more often, I got defensive or I was snappy in my response back. I’m not particularly proud of that. But as I look ahead and consider what I’ll say or how I act in the future when someone I know is going through a tough time — I want to try to remember not to be so quick to critique someone else’s personal choices.
I’ll be me; you be you, ok?
I felt supported.
Good friends reminded me to take care of myself when they saw I was cracking. Best friends planned a night at the movies or an tournament at the bowling alley, and then informed me that I was going.
I’ve talked before about the amazing support network that reached out to Steve and Elizabeth in their time of need. My support network stepped up as well, and I don’t take any of that for granted. I feel really blessed to have had people reach out to me and make sure I felt loved and remembered. Sometimes that came in the form of an email or a text or a greeting card. Other times it was an evening out on the town.
I can’t thank you all enough for making my life a little brighter, for cheering me up when I needed it most, and for listening. Sometimes you didn’t even know you were helping me — because sometimes it was just the knowledge that you were there that helped me through a rough patch. (See: “doing nothing is sometimes doing everything” above.)
I feel changed.
I hate confrontation, and I hate difficult conversations. Most of us do.
The funny thing about going through something like this is that it gives you a lot of perspective about what matters. This is always going to be a work in progress for me, but I have noticed that I’ve gotten a lot more direct with people, and especially in articulating my own needs or desires. I’ve had conversations with people that I never would have had a year ago — and some of the most difficult ones ended without hurt feelings or tears or giant blow-ups. In general, I’ve found that polite, honest, frank conversations lead to better outcomes for everyone.
You always hear about how hard times show you who is a friend and who is not. In looking forward, I am making a conscientious decision to foster relationships that are two-way streets, and let go of those that feel soul-sucking.
I felt humbled.
I made mistakes in my caregiving. I don’t want to tell those stories because, in general, they have involved conflicts and the point of this post is to be honest about my own feelings, not to make other people feel bad.
We all make mistakes. That is easy to say. The trick is being honest enough with yourself to admit the mistakes and then to make changes. I learned a lot about myself since July, and after some of my mistakes, I took the experience to heart and hopefully made better choices.
Another way I felt humbled? If you count up all the caregivers, the nurses, the doctors, the gofundme donors, the friends and family, the colleagues, the acquaintances, and the strangers (!) who helped our family navigate these past 7 months in some way, shape or form — it’s mind-numbing. Maybe you said a prayer for us, maybe you made us dinner one weekend — I’m fairly sure the population of people who came together for Elizabeth and Steve (and those of us who are closest to them) numbers in the thousands.
And quick third way I have felt humbled: Elizabeth and Steve have been so “real” through this whole process. While I obviously wish none of this had happened to them, a silver lining is that we are closer than ever before (I’ll add Scott and my parents to this sentiment as well). I feel honored to have been a part of the inner circle, and to be trusted to share in some of their most vulnerable moments. I’m certainly blessed that I have a family that is close enough to be able to be there for one another, physically and emotionally, when these kinds of things happen.
I felt loved.
I’m not going to gush here. You know who you are if you fit in this category. Thank you for showing me love, compassion, and understanding. Thank you for letting me vent or cry, and for dancing and high-fiving when I shared good news.
The good news to share today is that Elizabeth is nearly at the conclusion of this phase of the journey. While my caregiving days are ending — or at least changing — the things I have experienced and the lessons I have learned will no doubt influence many other aspects of my life.
And for that, I feel grateful.