Life on Hold
There is something nobody tells you about long-term caregiving. Not the clinical part. Not the logistics. Something quieter and harder to name.
Your life goes on hold. And everyone else’s keeps moving.
I watched friends take vacations. I watched them complain about the chaos of family holidays and the exhaustion of travelling with kids. I watched them become grandparents, see their children grow into adults, gain a kind of freedom that comes naturally when your children get older and more independent.
I grieved that life. I grieved it while I was still living mine.

People sometimes say, well you were a mother, your life was never entirely your own either. And that is true. But it is not the same thing. A child grows. A child becomes more independent with every passing year. A child can come with you, adapt, fit into new situations. You can pack up and go somewhere and bring your child along and it is still, in some way, your life.
A parent with Alzheimer’s disease is not portable.

You cannot pack up the disease and put it on pause while you try to relax on a beach somewhere. You cannot press pause on incontinence, on wandering, on medication schedules, on the particular terror of a 2am phone call. The disease has a mind of its own, and it does not care about your plans.
So even when I did get away, I was never really away. There was always the logistics. Always the mental checklist running in the background. Always the knowledge that everything holding things together at home was temporary and fragile and dependent on me being reachable.

That is the paradox of it. I was present everywhere and fully nowhere.

I watched the world move forward while I stayed suspended. Frozen in place not by choice but by circumstance. Things most people take for granted, moving homes, being spontaneous, being truly unreachable for even a weekend, were not available to me. The care was arranged. The routines were set. The whole structure depended on me staying exactly where I was.

I am not writing this for sympathy. I am writing it because I know there are caregivers reading this right now who are in that stasis and wondering if they are the only ones who feel it. You are not.
And I am writing it because I am still angry. Not at my mother. Never at her. But at the way caregiving is sanitised in the public conversation. People talk about it in soft, noble language. The real heroes. The selfless ones. And yes, thank you, but that is not what it feels like from the inside.

From the inside it feels like being expected to fill every gap the healthcare system cannot be bothered to fill. It feels like being handed a medication like hydromorphone and expected to administer it to your own parent and process that experience alone. It feels like 24 hours in a day when your paid help covers eight of them. It feels like a doctor who has a policy against operating on family members because of conflict of interest, while you are expected to do things that trained professionals find difficult, with no policy, no protection, and no debriefing afterward.
And then it ends. And people expect you to be relieved.

But the disease keeps robbing you. Even after the journey is over. Even years later. You are left with PTSD you have to name and treat, an identity that got swallowed somewhere along the way, and the enormous task of learning how to look after yourself after two decades of looking after someone else.
I kept going through all of it. The MBA. The doctorate. The leaves of absence my own doctor signed off on because even she could see this was too much. A breakdown. And then more work. Because I had to make sense of it. Because twenty years cannot be for nothing. The thought of that is cruel.
That is why I built what I am building. That is why this book exists. That is why I show up.
Not for the accolades. For the caregivers who are still in it, suspended, watching everyone else move forward, wondering when it will be their turn.
Your turn is coming. And when it does, you will have more to offer the world than you can currently imagine.

Hold on.