Being a caregiver for someone with a chronic illness sucks. There, I said it. Watching someone you know and love live in constant pain, or watching them slip away from themselves and who they’ve always been is a battle in and of itself. Nothing can prepare you for watching your parent, friend, or life partner go through that.
That being said, it’s something that almost everyone will have to face sooner or later. Someone you care about will quite possibly come down with something that won’t get better. You, or someone you know, will probably be on one end or the other of this equation. There are myriad possibilities, Ehlers-Danlos, Crohn’s, Arthritis, Degenerative Disc Disease, Fibromyalgia, Multiple Sclerosis, or any one of a seemingly ever-expanding list of horrible afflictions. None of them get any better with time. Chronic illnesses suck for both the person with the illness and those that care about them.
Just because the illness doesn’t get better doesn’t mean that life can’t be lived. I firmly believe that there’s a humongous difference between living and merely surviving. As a caregiver, I feel that it’s my responsibility to help with the living.
Start with being there. Having your you fail to be what it once was, or what you feel it should be, is a horrible experience. It’s only made worse when those you thought you could depend upon prove you wrong. Ghosting someone who’s going through this is not doing anyone any favors. Yeah, it means that they don’t see how much what they’re going through hurts you, but it doesn’t hurt you any more than it hurts them, trust me on that. Your absence will only hurt them worse.
You can’t do it all, but you should always do what you can. Sometimes this will be the physical stuff like taking out the trash and doing the dishes. Sometimes, it will be more ephemeral things, like simply listening, talking about how your day went, or a book you both love, sometimes it’s just being there. Whoever you’re caring for won’t always ask for the help they need. They won’t always know what kind of help they need. Don’t shame or blame them for what their minds or bodies are doing to them. It’s not their fault, they didn’t ask for this. Sometimes the emotional support you can offer means more than the physical. You can always show whoever it is that they’re still important and loved. Don’t underestimate how much that means.
Be honest with yourself. There’s a thing that my shrink and I have talked about called “caregiver burnout.” It’s as bad as you think it is. There comes a point where you don’t feel like you can do enough, or haven’t done enough, or can’t do any more. Self-care is just as important for a caregiver as it is for whoever is suffering. You can’t be any good to them if you’re not any good for yourself. If you get to rock bottom, acknowledge it. Ask for help. Do what it takes to keep yourself in one piece. Read a book, play a game, watch a movie, go out with friends, maybe meditate or something. Recharge your batteries however you do that, because you need to. Taking care of yourself isn’t something you should feel guilty for. In fact, it’s necessary if you want to actually be useful or helpful to whoever you care for. Your life shouldn’t end just because you’re taking care of someone else, that’s a dark road that ends badly for everyone.
Here’s the worst part: sometimes, there’s nothing you can do. Sometimes the illness is too much. It could be pain, anxiety, depression, or any of a number of other things. But sometimes the person that you’re caring for will be beaten down too far. There’s no magic for those times, but don’t give up. Sometimes the being there, expressing love and concern, is the only thing you can do. Sometimes it’s the only thing that can be done. Those times will probably leave you wanting to scream your rage and frustration at a cold, cruel world that can do such horrible things to those you love. It’s a natural reaction, not something that you should be ashamed of. But, if you’re like me, you’ll hold it in, just like they do. You’ll grin and bear it, because you know that none of the yelling and screaming in the world will help right now. Later on, in your car, on the way home, or to the grocery store, or wherever you need to go, you can let it out. Scream, cry, shout, take a few moments of silence, do all of the above, do what it takes to release that pressure inside. Do what it takes so you can be who they need you to be when you get back.
Remember, you’re not alone. Just like they’re not. There are others of us who understand, who live with having to feel like we’re just… hanging on. Every day feels like a losing fight. A holding action that never ends. Fighting a chronic illness is like one of those heroic defeats that the British treasure far longer than their victories. We know that there isn’t a way to win, but there is an honor in fighting the good fight. Just make sure that nobody fights alone.