I’m willing to bet there’s not a single caregiver out there who hasn’t been overwhelmed by GUILT at some point during the journey.
Whether you’re caring for an elderly parent, a loved one going through cancer or other life-changing diagnosis, a child with special needs . . . hell, you could be taking care of a goldfish and I’m pretty sure you’ll have felt guilty at least once or twice.
What a lot of people don’t realize, and what I particularly want new caregivers to be prepared for, is that guilt doesn’t come in one form. It’s insidious, sneaking in any crack in your armor that it can find. It will wrap itself around you, quietly and slowly squeezing until you lose the truth of who you really are.
Not Enough Guilt
The most obvious form is the Not Enough Guilt, centered around the patient and others depending on you at a given moment. Standard for all caregivers, this guilt sets in immediately and is ever-present.
I should be with Antonio in the hospital tonight instead of going home to rest.
I should be with my kids right now instead of leaving them with a babysitter.
I should be feeding everyone healthier meals instead of this last minute scrabbled together fast food.
I should be getting work done instead of sitting in this waiting room doing nothing for hours.
I should be more patient instead of losing my temper at the drop of a hat.
When you’re caring for one (read: your patient, another dependent, yourself), you’re not there for another (read: your patient, another dependent, yourself) and no choice feels like the right one.
It’s relentless. And it doesn’t stop with just the present moment. The “I should be’s” are close cousins to the “If only I’d’s . . . “
If only I’d encouraged him to see a doctor earlier.
If only I’d been with him when they gave him the diagnosis.
If only we’d let the kids talk about it instead of holding it inside.
If only I’d been more understanding and not pushed recovery so hard.
If only I’d encouraged more, supported more, helped more . . .
Both versions of the Not Enough Guilt trap you in an endless cycle of shame and regret that’s impossible to escape. When this crawls inside and entwines itself in your thoughts, you’ll always be able to think of something you could be doing or have done differently or better, and you’ll always find a way to regret the choice you didn’t make.
The spiral continues: You focus on the negative instead of acknowledging everything you have done, all the times you were there, the steadfast comfort you have provided. Even more dangerous is when “I’m not DOING enough” turns into “I’M not enough,” where you move from situational guilt to taking it on as an embodiment of who and what you are.
I Need Help Guilt
Caregivers beware, and buckle up, because it doesn’t stop there. While you’re feeling like you’re not enough, amazing and kind people will offer to help you, and guess what? You’ll find a way to feel guilty about that too.
I feel bad asking for help.
The last thing that family needs right now is to add providing another family’s meals to their plate.
My friends are doing so much for me and I have no way to repay them.
My being out of work puts more stress on my colleagues and they’re already overworked as it is.
I Need Help Guilt lies in wait, ready to strike the moment you finally admit you give up. When you’re on your knees begging for some—any—relief, this guilt whispers: “You can’t ask for, you can’t expect, you can’t receive the help you so desperately need.”
Comparison Guilt
Yet another form of guilt wends its way in via the people you most trust and connect with—your patient and caregiving communities. This is Comparison Guilt.
It’s guaranteed that when you bring together any group of people going through a life-changing diagnosis, there will always, always be someone in that group that’s having a tougher time than you. Someone’s cancer will be more advanced. Someone’s parent will be more immobile. Someone’s child will have more complex needs.
What makes it more difficult is that you’re often deeply connected to the people in these communities. You’re sharing the same journey—the same fears and struggles, heartaches and heartbreaks—and sometimes the same inevitable outcomes. Their pain is your pain.
The guilt you feel caring for someone who doesn’t have this or that complication is oh so subtly connected to the very real fear the comes with one tiny little phrase: not yet. Thank god we’re not at that point . . . yet.
Resentment Guilt
There’s another form of comparative guilt, however, and Resentment Guilt offers you yet another opportunity to beat yourself up. Glennon Doyle describes this as “bitter yearning” in her book, Untamed–a feeling rooted in anger. Confession time: I’ve given in to some truly monstrous thoughts as a caregiver.
Must be nice to lie on the couch all day and recover while I’m working full time and taking care of the kids and managing everything else in this house.
Must be nice to be in remission.
Must be nice to have a community of others going through the same thing instead of a ‘never seen that before’ case.
What the hell kind of person am I to resent a cancer patient recovering from his 5th surgery? Or a cancer patient period? How utterly horrible am I to be envious of parents caring for babies with cancer?
See what’s happening here? The very human emotion of resentment gets followed by the WHAM! of guilt for daring to even think such a thing much less feel it. You question yourself and what kind of person you are and the answer is never good, never forgiving.
Guilty for Feeling This Way Guilt
Especially fucked up is when you take all of this guilt you’ve felt—around your patient, your parent or child; around your community of friends or fellow journeymen—and you blame yourself for it. You feel guilty for feeling guilty. What’s more, you feel guilty for not “being strong enough” to make it through this journey unscathed.
As I’ve said, I’m at the point in my caregiving journey where I’ve lost myself and I’m trying to get back. When I finally had the capacity to recognize and start to address it, I remember telling my husband, “I’m a shell of a person,” and then breaking down, wondering how I could have done this to myself, how I could have allowed myself to get to this point.
Think about that for a minute: I’d been a caregiver for years, feeling all of the guilt that comes with that, and I added guilt for not being superhuman on top of it.
How to Deal with Caregiver Guilt
Not Doing Enough. Needing Help. Comparing. Allowing the Loss of Myself. I have felt all of these forms. Guilt is a constant traveling companion on the caregiver’s journey, whether you want it or not. So I’m not here to tell you how to stop feeling guilty because I honestly believe it’s impossible.
What I am here to tell you is what I’ve come to realize: It’s normal. It’s human. And it’s all complete bullshit.
Guilt is a normal, human emotion that accompanies caregiving. By recognizing this, you remove its power. Acknowledge it for what it is and set it aside.
It’s normal that I’d feel guilty over my choices. I’ve done the best I know how to for myself and those counting on me.
It’s normal to feel guilty for needing relief. I’m asking for it anyway because it will help me.
It’s normal to compare my situation with others’. I’m not a bad person for doing so and I have compassion for my situation and theirs.
There is only the best you can do at any given moment, and simply the act of caregiving means you are doing exactly that.
There is no wrong choice on this journey. There is only the best you can do at any given moment, and simply the act of caregiving means you are doing exactly that.
Let me repeat: You are already doing the best you know how to do at any given time. That is enough. You are enough.
Which means that all of this guilt is not true, it’s created. It’s the critical perspective we apply to our normal and human actions, our normal and human thoughts, our normal and human feelings. And it’s therefore BULLSHIT.
Which means you can acknowledge it, accept it for what it is, and let it go.
