I have been caring for my husband through cancer for 14 years, and it’s killing me.
I am burned out. Exhausted, depleted, angry, sad and empty.
I am also a wife, a mother of two young children, a daughter of two aging parents and a working professional, and outside of those – I don’t know anymore. I have lost myself to the most basic degree and am incapable of defining myself beyond the things I care about or manage. I no longer know who I am.
I am lost.
Let me be clear: I do not blame my husband for this. I do not blame his cancer. I don’t even blame myself, although that’s a relatively recent discovery. Looking back, it was almost inevitable that I would end up here, and the sad part is I know I’m not alone.
When you start a caregiving journey—or any journey where there is a significant…no, a seismic, even cataclysmic, shift in your daily reality—there is no preparation. Just like parenthood, there is no handbook for how to care for someone through cancer, ALS, MS, PTSD, dementia, Alzheimer’s or any other life-changing diagnosis.
There are, however, a lot of ‘resources’ out there.
No One Talks About How Hard This Is
For me, caregiving resources are helpful for certain tangible tasks and beyond that they inspire nothing but pure rage. It’s less about what they offer—info on how to juggle certain logistics, questions to ask physicians, checklists for managing all the things—these are all important aids for overseeing someone’s care. My rage is rooted in how they offer support.
I do not want to sift information through a gauzy layer of angelic patience—caregivers are just so self-sacrificing, so ever-present, so damn good—because I feel everything, absolutely everything, but ‘good’ right now.
I do not want flimsy, simpery, saccharine materials telling me to take time for self-care with little to no acknowledgment or guidance on how the hell I can do that when I’m also parenting and working full time.
“Accept help.” OK but people keep telling me to let them know how they can help and I’m so exhausted I don’t have the mental capacity to form a complete sentence much less figure out what I need and when and communicate that to others.
“Take time for yourself—get a massage!” Lovely. Please explain to me how the fuck I can a) take even more time away from my kids who are desperate for a steadfast, present rock and who have already been sacrificed to babysitters while I’m in the hospital, at appointments, in work meetings, etc., and b) attempt to relax while infinite “what if” scenarios run through my head?
“You will have feelings and that’s ok.” Good to know. Tell me again how I should handle not drowning in a flood of emotions, when I resent my husband for resting while recovering, then feel guilty and ridiculous for resenting a cancer patient while I simultaneously marvel at his mental strength, sit dumbstruck in the face of the deepest gratitude I’ve ever known and despair because there is no coffee left and it will take everything I have to get out of this chair much less make another pot and I simply do not have it in me right now.
“You got this!” Yeah, NOPE.
I find that what most caregiving resources don’t do is give you any hard truths about how to handle everything you’re going to feel. They don’t talk about the all-encompassing guilt, raging resentment, overwhelming stress, absolute fear, miraculous wonder, sheer gratitude…the absolute mindfuck that is caring for someone you love—or perhaps someone you don’t—through this process.
And they don’t answer one of the first questions that comes to mind when you assume the mantle of caregiver for someone else: Who is going to take care of me?
Support Groups Are Amazing…And Hard to Get To
This is where in-person support groups come in. Oh, these groups are magic. It is the most wonderful thing to be surrounded by people who truly and deeply empathize and connect with each other. Support groups are the most pure form of human nature and connection laid bare. Your hearts are cracked open and passed around, and every person in that room knows how precious it is to hold your truth in their hands.
In these sacred spaces, you open your soul. You admit to the feelings you’re not supposed to admit to feeling. You cry for yourself and for others. You pray and grieve and laugh through tears because let me tell you this shit is HARD and only those who are on the same path truly understand. IYKYK.
These groups are also hard to find and even harder to make work. I’ve been caregiving for years and I shit you not it was LAST WEEK before I even thought of attending a support group just for caregivers. Not a group for patients with their caregivers, not one for families and parenting (often one parent being the patient and one the caregiver) through illness, but a group just for those of us carrying the load. Years before I even realized this was something I needed and could logistically make work.
Needless to say, while support groups are wonderful, finding the physical and mental capacity to show up for something purely for you and no one else is a gift that’s difficult to give yourself.
That’s where this blog comes in.
If Caregiving is Killing You, You’re Not Alone
I have been caregiving for 14 years and I’ve learned a shit ton about what it means to do so. I’m angry that no one talks about caregiving in a way that cuts through the BS and in a place where others going through the same can find and access it.
I have been caregiving for 14 years and I’m also a middle-aged woman, a mother and a working professional. And I have lost myself. Frankly any one of those factors is enough to erase one’s identity, the core of what makes you you, much less all of them combined.
So here I am, with pen in hand.
I have been caring for someone through cancer and maybe by sharing my experience I can help someone out there who is struggling with the same things I did and not finding solace.
I’m dealing with an erasure of identity that comes with caregiving but also with motherhood, womanhood, career-hood, and I’m realizing that without action I will continue to feel like a shell of a person.
This is my action and maybe also my healing.
I’m writing because it’s something I enjoy just for me, just for me, and if I take time to do things just for me then maybe I will find myself again.
I’m writing about caregiving because it’s been a hard road and along the way I’ve realized I have some serious thoughts. Maybe in the process of capturing them I can unburden myself of the load I’ve been carrying for so, so long.
This blog is my attempt to share what I’ve learned and in doing so, claw my way out of the hole I find myself in. Join me, please.
