The People Who Carry Us
When you are the one being cared for, you start to notice things other people don’t. The small sigh of exhaustion and the slight change in tone. They are easy to miss if you’re just passing by but they feel loud.
I can tell when my husband is tired without him saying anything. There is a kind of quiet understanding that develops over time. Almost like telepathy. He knows when I’m uncomfortable before I even say it and I think a lot of caregivers develop that ability. They just know.
Caregiving doesn’t exist in isolation. It creates an ecosystem of people.
Friends who message just to say hi. A neighbour’s 15-year-old kid who walks our doggos so my husband doesn’t have to. Or the gym staff who quietly give him extra time because they know he has spent the whole day caring for me.
These are small things but they are not small to us. They are the kind of kindness that keeps things going.
My husband left a job where he was respected. He moved away from his friends and built his life around making sure I am okay. I carry guilt for that. There are days where I wonder what his life would have looked like if ALS never entered ours. He always says, “What right do I have to complain when you are the one with the illness?”. But I don’t see it that way. Sometimes I think it is harder to witness the pain than to be the one going through it.
Caregivers are not just helping. They are also grieving. Grieving the life they had, the life they imagined, and sometimes the life they thought the two of you would grow old into together. Caregiving is not just physical. It is the mental load that never really switches off. Medications. Toileting. Positioning. Equipment. Appointments. Troubleshooting. The list never really ends.
Our home slowly became medicalised. My husband troubleshoots my wheelchair, my eye gaze computer, even my PEG tube when something goes wrong. I once told him he always finds a solution to every problem. He still brings that up.
But even problem-solvers get tired. There is decision fatigue after a full day of caring. Even something as simple as deciding what to eat becomes another task. Because of that, there are things I choose to not say like I sit with discomfort longer than I should so he doesn’t have to get up. Sometimes I stay quiet about changes in my body so he won’t worry.
In the middle of all of this, there are things caregivers do that quietly mean everything. They preserve a sense of normal.
Before MND, I loved doing my hair and makeup. Now my husband (a big, bald, bearded man) learned how to do both overnight so I could still feel like myself. We laugh about it now but those small acts carry weight.
Caregiving requires a kind of strength that is hard to describe. I think one of the biggest misconceptions is that caregivers are seen as saints. As if they are naturally selfless, endlessly patient and that idea leaves no room for them to be human. They get tired and they get frustrated. They have moments where it is all too much. That does not make them bad, it makes them real.
If there is one thing caregivers need more of, it is to be seen. Not just as “the caregiver”, but as a person. Someone to ask, “How are you?” and actually mean it.
Honestly, “thank you” has never felt like enough because it is not just about what they do. It is about what it has cost them. The life they adjusted, the things they gave up, and the quiet sacrifices that no one really talks about.
Caregiving is not just an act of love. It is a life that runs alongside someone else’s illness. This is what I want people to understand that behind every person being cared for, there is someone carrying more than what the world sees.
They deserve to be seen too.
Your kindness means more than you know.
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