Caregiving: wholly, holy, holey

Caregiver.

Support Person.

Spouse.

Partner.

Teammate.

All hats that I have worn for Jon in the past decade that we've been together. All titles which can be preceded by the word cancer now.

All terms that I feel like I should write about, in order to help me process. But in many ways, it's all so raw and real and in process now, that I don't know that I have the perspective for this to be particularly cohesive. But I process when I write, so here goes nothing.

Being a cancer caregiver - or really a caregiver for anyone who is diagnosed with a life-altering/life-threatening condition - is hard. How's that for a "no duh" opening statement?

It's hard because, while your body and being remain the same, suddenly your world is taken over by your (plural) diagnosis. While the diagnosis is not yours (singular) personally, as the primary caregiver, you bear its weight daily as well. It defines and takes over your (singular) world as well.

All of a sudden my blood cancer vocabulary and knowledge has dramatically expanded. My knowledge of chemotherapy drugs and cutting edge research and potential side effects went from 0 to 60 in just a few weeks. And I now know (kind of) how to explain a tumor, cancer, and chemotherapy, to a 3 year old. I have alarms in my phone to remember drug dosages, I am constantly texting someone to arrange coverage for something, I care far more about his digestion and bodily processes than is decent to discuss, and when he has a bad day, I bear that weight too.

We've both grieved, and still grieve, the loss of our "normal" - we've processed, and are still processing, the "what if's" both good and unthinkable - and we're both actively trying to figure out how to live life fully in the unknown period, keeping things as normal as possible for our three children, while not ignoring the trauma that we're all going through.

Cancer is never easy, but being young adults, young parents, facing cancer has its own unique challenges. If you want to learn more about some of them, this is a helpful resource.

Add into the weight of the diagnosis, the weight of all our "normal" roles - kids, housework, finances, etc. - previously divided between the two of us, now falls almost exclusively on me - in addition to the new caregiver roles. Plus handling our kids anger and meltdowns from the disruption to their normal. Plus coordinating things for kids or Jon or family coming into town when all are not in the same place and I cannot be in both places simultaneously. I fully intend to add "logistics coordination" to my resume, because it is a skill that I have had to master these days.

I am eternally grateful for the masses of friends and family who have delivered meals for us multiple times each week, run errands, picked up groceries, or watched our kids. They might seem like little things, but they are sanity savers (and such a gift to a caregiver!) when you're stretched to capacity.

My husband bears the disease in his body, but the weight of it is on us both.

The hard part of writing this post is trying to explain that weight, without sounding like I'm complaining or trying to get attention - I'm not. I do it gladly, and would not exchange it. I meant "in sickness and in health" literally when I made that vow, and I am glad that I get to be the one who walks with him through this journey - most days, it is a joyful privilege because it means that I get another day with my love. I take none of them for granted these days. But it is weighty and life-altering (and exhausting) for both the patient and the caregiver, nonetheless.

And sometimes it's really hard to explain to someone who hasn't walked this walk - of caregiver - just how difficult, and yet rich; how hard, and yet beautiful; and how overwhelming, and yet simple, this position is.

There is an intimacy that comes from sleeping in the uncomfortable hospital chair next to your spouse, and waking with every nurse that comes in. There is a nakedness and vulnerability from coming face to face with your spouse's mortality (and your own), where you stop pretending and stop protecting, because you know that your days are not guaranteed. There is a holy weightiness of being an advocate and defender and knowing the meds, routines, and side effects that come with hospitalization and treatment. And there is a simplicity that comes from a life-altering diagnosis, where everything accessory falls away because you simply cannot manage more than you have to, you know what matters and you let go of what doesn't, and you have to accept help. You say no to obligations a lot more, and yes to help more. And you become far more aware of the little things that make this hard place easier, funnier, and more beautiful - if you let it, gratitude blossoms in a way that it cannot often otherwise.

Even a mouse in the waiting room is a humorous gift, all of a sudden.

It is a holy weight. And yet it is a weight, nonetheless.

Take time for yourself and make sure to practice good self-care, they say (among other wise advice).

And that's true and wise and wonderful and needs to happen - but how and when? And how do you fight the guilt that comes from taking time for yourself when your kids need you when you're not with your husband and your husband needs you when you're not with your kids? Even though you *know* that you need it and can care better for everyone when you're, you know, sane and have a little sleep.

I was driving home from the hospital the other night, to be with the kids for a few hours before returning to the hospital for the night, and knowing that I needed some sanity time, decided to make the 30 minutes in the car "my time."

I made it about 5 minutes before I remembered something about my husband's digestive process that I was supposed to remind him to tell the nurse, and knowing that he'd push back on asking for meds to assist with it, I stressed and worried about it and spent most of the drive trying to figure out what, where, and when I needed to act.

Self-care #fail.

I called a friend on the way back to the hospital and she let me vent, and reminded me again that I need to take space to care for myself. She made me laugh and reminded me that I was not crazy. We found little wins in the day, and I went back into the hospital much more sane.

Self-care #win.

I don't have a point. I'm not far enough on this journey to be able to give any sage advice. Suffice to say, cancer (insert your own life-altering/life-threatening circumstance here) weighs on and changes more than just the person who bears it in their own body. We caregivers, we carry it in ours as well.

It is complex and hard and heavy and beautiful all wrapped up into one. Don't tell us what it feels like, or what we need - ask us.

And when you pray for or seek to care for people who have cancer (insert any other malady here) - see if there are ways you can pray for and care for their caregivers as well. Most of us are pretty tired. Most of us need people to vent to. People to support us and feed us and tell us to go the bleep to sleep. People to release us from the guilt that we feel for taking care of ourselves. People to help us laugh, see gratitude, and retain some semblance of the normal we so desperately crave.

We cannot do it alone (and I'm so thankful that I'm not).