I held everything together for my mother. No one held anything together for me. This is what I wish had existed then.
- Fatuma K. — 2023
I held everything together for my mother. No one held anything together for me. This is what I wish had existed then.
- CAREGIVER REFLECTION · INVISIBLE LABOUR · CAREGIVER ISOLATION · WHAT COMES AFTER | Contributed by Fatuma K. · 2023
“I was the person everyone called. Which meant I was also the person nobody thought to call and ask how I was doing.”
My mother got sick the year I turned thirty-eight. Not a slow sick. A fast one. The kind where one scan changes the entire shape of the next two years of your life, and by the time you have adjusted to that shape, the scan has changed again.
I became her primary caregiver within weeks of the diagnosis. It was not a decision I made so much as a direction things moved in. I lived closest. I had the most flexible job. I was the one who had always been the organiser. These things meant the role fell to me in the way that certain roles fall to certain people, quietly and without anyone naming what is happening until it is already fully in place.
Nobody appointed me. Nobody asked if I was willing or capable or whether this was something I could absorb into an already full life. It just became true.
“What people saw was someone who was coping. What was actually happening was something more complicated than coping.”
I learned her medication schedule. I learned which consultants she responded to and which ones made her anxious and how to manage the appointments around that. I learned the layout of three different hospitals. I learned how to ask the right questions and how to translate the answers into language she could hold onto without being frightened.
I did all of this while continuing to work. While maintaining a household. While showing up to the other parts of my life in whatever capacity remained after the caregiving had taken its portion. And for a long time, I thought this was simply what was required. That the flattening I felt was a side effect of a hard situation, not a cost I was paying with something real.
There was a Wednesday evening about eight months in. My mother had had a difficult appointment. I had managed the appointment, managed her fear afterward, driven her home, stayed for two hours, driven myself home, made something to eat that I cannot now remember, and then sat at my kitchen table and realised I could not think of a single person I felt I could call.
Not because people did not care. They did. But explaining what my days actually looked like felt like more than I had capacity for. The calls I received were mostly checking on her. Which was right and good. But it also meant that somewhere in those months, I had become invisible in a way I had not noticed happening until that Wednesday evening when I noticed it all at once.
“She is gone now. I am still rebuilding. Those are not the same timeline and nobody warned me about that either.”
My mother died fourteen months after the diagnosis. It was, in the way of these things, both the worst thing and also a kind of stillness after a long time of motion.
What I was not prepared for was what came after. The caregiving ends. The grief does not. But alongside the grief is something else, something I have found harder to name and harder to find language for in the places where grief is usually discussed. A kind of reckoning with who I had been before this and who I am now and how much distance is between those two people.
I had held everything together for two years. I had been excellent at it. And in doing so I had quietly set down parts of myself that I am now, slowly, picking back up. Some of them are still where I left them. Some have changed shape while I was not looking.
I am writing this because when I was in the middle of it, I looked for stories from people who had been in that middle and I did not find many. I found stories about what caregiving gives you, the depth of relationship, the perspective, the love. All of that is true. I do not want to minimize it.
But I also want someone who is currently sitting at their kitchen table on a Wednesday evening, unable to think of who to call, to know that this is part of it. The invisible part. The part that does not make it into the version of the story that other people see.
You are not invisible to me. And you are allowed to need someone to hold something for you.