When caregiving feels like drowning, reaching for a lifeline is crucial

They say drowning is quieter than people expect. It rarely looks like the thrashing and shouting we picture from movies. More often it is silent, and the people standing right there don’t realize it’s happening until it’s too late. Lately, I’ve come to understand that caregiving can feel the same way.

Life has felt heavier than usual these past few weeks. One moment, my husband, Rhead, is irrationally upset with me over something small, and the next he is warm and funny, telling me how much he loves me. It’s as though my best friend suddenly reappears in the room. I never know which version of him I’ll get, and that constant bracing wears on a person in ways that are hard to explain to anyone who hasn’t lived it.

Multiple sclerosis (MS) is not only a disease of the body. Because MS can damage the brain and the nervous system, it can reach into a person’s mood, patience, and personality. Multiple Sclerosis News Today explains how MS affects mental health, and former columnist Debi Wilson has written honestly about the personality and emotional swings the disease can bring. Understanding that helps me extend grace. I can see what’s wrong. I can see the illness taking the wheel, and so I give him a pass, again and again, the way you do for someone you love who is genuinely suffering.

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But here is the part I’m only now letting myself say out loud: While I hand out endless grace to everyone else, I quietly abandon myself. I stay patient. I stay loving. I keep giving and giving, and somewhere in all that giving, I slip under the surface without making a sound. That, I think, is what so many caregivers do. We are so focused on keeping the other person afloat that we don’t notice the water has risen to our own chin. No one hears us go under, because we’ve gotten very good at not making noise.

I’ve written before about the emotional roller coaster of this life, and about the way caregiver burnout broke me before I knew its name. Both of those began with the same quiet slipping under. So if you’re reading this with a lump in your throat because it sounds like your life, too, I want to say the thing I most need to hear myself: You are allowed to come up for air.

Drowning people can be saved, especially when someone notices in time. The same is true for us. Noticing is the first breath. If you’ve stopped sleeping well, stopped seeing friends, stopped doing the small things that used to feel like you, those aren’t signs of weakness or failure. They are the water rising, and they deserve your attention as much as your loved one’s symptoms do.

You don’t have to climb out all at once. You can reach for one handhold at a time. Tell one honest friend how heavy it’s been. Lean on support and resources and the people who understand this road. Give yourself the same grace you so freely give the person you care for, because your well-being is not a luxury you’ll get to later. It is the thing that keeps you here, present and able to love them well.

You are not selfish for wanting to breathe. The most loving thing you can do, for them and for yourself, is to refuse to drown quietly. Lift your head. Take the breath. You are worth saving, too.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.