I officially became a caregiver of one person on August 10th, 2019. I became a caregiver of two people by December of 2021. One of the people I am caring for is supposed to be my partner in life, the person who makes decisions with me and we care for each other, jointly handling the stress and joys that accompany being a family unit. The other person I am caring for is the one person who has loved me the most throughout my entire life. She gave birth to me, and has always been my greatest champion. Both of the people I am caring for I love dearly, and both need me equally. They are also two hours apart, so I split my weeks in half in order to give each of them the time they need, which is actually never enough for either of them and always too much for me.
In my work as a Clinical Mental Health Counselor, several of my clients are also caregivers, and I have been doing a lot of reading and research about caregiving over the past few years to keep up with both their needs and mine. I have seen what it does to other people. I know what it does to me. There is evidence that caregiving changes people both physically and mentally, and not always for the better. This is very frightening to me, having this knowledge, but not knowing how to stop it. I’ve known of at least three situations off the top of my head in which, once the caregiver lost the person they were caring for, they developed severe physical problems/illnesses that eventually led to death. And I know how often caregivers feel left out of life, as if everyone else gets to go on living and somehow they never quite catch up. I have known caregivers who have sadly taken their own lives, and have read about that happening with disturbing regularity. It is a kind of dark desperation to end what has no predictable end, and I know the deep well that those feelings are drawn from. That’s why I’m writing this post: to bring awareness to those who often feel out of step with the rest of the world and may need help, but don’t know how to ask for it.
Many of the caregivers I’ve worked with have been so dysregulated that they can’t tell others what they need. I’m that way myself sometimes. If you ask me what I need from you, it’s likely that I don’t know anything past the very moment that I am in, and my needs change frequently. When I ask another caregiver what they need, I often follow what I call “SWAP”: do you need Suggestions (advice about something), Witness (just listening and being a witness to feelings), A combination of witness and suggestions, or Physical affirmation (a hug, a touch, a hand-hold, etc.) That covers most things and gives the caregiver a path to follow, instead of having to think hard to come up with something when their minds and bodies are too tired to do so.
The standard self-care measures often don’t work with caregivers. Well-meaning folks often say that I need to take care of myself, and I know that, but what does self-care look like for me? I can’t take lengthy vacations, and even when I am away I am tethered to those I am caregiving for by phone and text, and also mentally (I wonder how she is doing? Could she have fallen? I wonder if he made it to work? Did he feed the dog and let him out? etc) Even when I have gone out to eat with friends I have had this nagging urge to get back home to check on my person. As much as I want to relax, it just doesn’t happen easily.
I have stopped doing the things that bring me joy because I don’t feel the joy in the same way anymore. I miss my yoga, but don’t have the energy to do it even when I have a bit of free time. I miss writing, though often no thoughts come to mind when I sit down to write. I miss long walks or going to parks to enjoy the outdoors. I miss playing my guitar or watching movies, or even making time to see friends. When I get home from work, it’s all I can do to fix dinner and get ready for the next day. I simply don’t have the mental or physical energy that self-care requires, and that is often something I hear from other caregivers: there’s just no energy or mental space for things other than sleep. And often, sleep is elusive.
But one thing I do have, and have in abundance, is friendship and a supportive family. I am so lucky in that respect, as some caregivers are almost completely on their own, and I can’t even imagine what that is like for them to feel so alienated. One thing my friends constantly do to keep connected to me is to send me funny memes or ones of friendship. That simple act lets me know I am in their thoughts, and that is powerful. I so often think of my friends, yet don’t reach out. It doesn’t mean that I don’t care about them or want to see them. It just means that I can’t find the energy to reach out.
I’m not forgetting about them. I’m forgetting about me.
The sad reality about most caregiving is that, in order for there to be relief, someone has to die. Living with that is a horrible, conflicting feeling. To want relief at all costs feels so callous. Yet there are days when I want the stress to end, knowing full well what that means. That is a tough pill to swallow, and one that I am continually digesting.
If there is a caregiver in your life, make sure you reach out every now and again. Not with any agenda or purpose necessarily, just to touch base. Even small gestures can mean so much. And if you are a caregiver and need support, please feel free to reach out to me. I love connecting with other caregivers.
I missed National Caregivers Day. It was apparently Feb. 21st. So this is my belated shout out to all the caregivers I know: I see you. I empathize with you. You are not forgotten.

