Wow! The Relentless Workload of Being Cared For

It has been one week since we began with a full-time carer. He is great. So far, so good.

I had thought I understood what this would mean. I had imagined the help, the support, the practical difference it would make. But there are some things that cannot be understood in advance; they have to be lived. After a week, what has become clear is not one dramatic change, but the accumulation of hundreds of small ones, small, almost invisible moments that, together, reshape the entire day.

A typical day, when you look closely, is made up of countless moments of dependence. Because of my condition, I may go to the bathroom twenty times. Eating and drinking, because of choking risks, because of routine, and because I simply enjoy it, happens perhaps fifteen times a day, each one requiring preparation, attention, and care.

Fifteen, you say, but then think about it. The cups of coffee, tea, water. The meals. The snacks. Even vanilla ice cream. It adds up quickly.

Then there are the small requests that punctuate the day. “Please pass me…” The computer. The mouse. The iPad. The phone. A book. (Lots of other things, too many to list.) And then, just as often, it isn’t about passing something at all, but the constant adjustments that make the day livable. “Could you…?” Turn the lights on. Off. Air conditioning on. Off. Heating on. Off. A blanket on. Off. Feet up. Feet down. None of these requests are large, but their constancy gives them weight.

Movement, too, is no longer incidental. It is deliberate. From A to B, to C, to D, around the house, into a chair, out again, what used to happen without thought now requires effort, coordination, and help. Alongside this are the things I am gradually transitioning away from doing myself: washing, hygiene, shaving, and other private routines that quietly redefine dignity and trust.

Layered on top of all of this is the need for constant awareness, that I don’t fall, that a sudden jerk doesn’t lead to something worse, that when the sirens go, three or four times a day at the moment, we can get safely to the shelter. There are the medical appointments, the walk in the afternoon for air and sanity, and the medication multiple times a day. None of these things, individually, feels extraordinary. But together, they are.

Obviously, when there is a full-time carer, this can be managed within a structured rhythm of the day. But when this same work is carried by multiple members of a family, alongside everything else they are already doing, it is virtually impossible to sustain. It becomes an extraordinary and often unseen burden.

And it is often the smallest moments that bring this into focus.

I can’t tell you how frustrating it is to arrive somewhere, finally settled, finally comfortable, only to realise that something essential has been left behind: the reading glasses on the table in the other room. To most people, this doesn’t sound like much. You simply get up, take two steps, and retrieve them. It is a moment, barely noticed. It was like that for me too, until a few months ago.

Now, it isn’t. Now it is a pause, a calculation, and often a quiet reluctance to ask, because this is not the first request of the day. It may be the twelfth or the fifteenth. And yet, without those glasses, everything narrows. Reading becomes impossible, watching something becomes difficult, and even simple independence slips away. What appears small on the surface reveals itself, in reality, as anything but.

And then there is a deeper layer to all of this.

Imagine if I were not able to articulate what I wanted. How frustrating that would be.

This is also where the question of “Are you OK?” begins to feel more complicated than it sounds. Sometimes the easiest answer is simply to say yes, not because it is true, but because you don’t want to bother anyone. Because the person asking wants to hear that you are OK, that you are comfortable and settled, so that they don’t need to do more, or worry more, or carry more. And so you say it. “I’m OK.”

But are you really?

I am fortunate, at the moment, that I am conscious, cognizant, and communicative. I can say what I need. I can express discomfort or frustration, or a small but important request. But I don’t know how it will be when that is no longer the case, and I find myself wondering what that frustration will feel like when it has nowhere to go.

I don’t feel any ill will, certainly not to my family. There is so much going on in life, so many competing demands, so many things that genuinely matter. But being silent, even unintentionally, can leave you in the corner, and from there it is easy to be left out, not through neglect, but through the simple reality of how full life is.

It makes me wonder how often carers and those they care for speak openly about this, how often they sit together and ask not just “what needs to be done?” but “how can we make this easier for each other?” Because there is wisdom on both sides, and it is only through sharing it that the experience becomes more human for both.

And that leads me to two reflections.

The first is the sheer weight carried by a carer, or by a family member. What I had not understood was the volume of “please”: “please get me,” “please pass me,” “please take me.” It is constant. It is relentless in its quiet way. And beyond that, there is everything else, medication, laundry, organising clothes, cleaning, anticipating needs before they are spoken. It is an extraordinary load, often carried without recognition, not out of neglect, but because unless you are inside it, you simply cannot see it. I didn’t. Now I do. THANK YOU!

The second reflection is about the patient. I am, in many ways, fortunate that I can articulate what I need and ask for it. But I find myself thinking about those who cannot, those who sit without the ability to communicate clearly, who cannot say “please pass me,” or “I’m uncomfortable,” or “I need something.” Not because the care or love isn’t there, but because reality has limits. Time has limits. Attention has limits. And so, inevitably, they may become second, third, or fourth in the unspoken order of urgency, not through fault, but through circumstance.

That thought stays with me.

It seems to me that the relentless workload of being cared for is not only practical. It is human. It lives in the accumulation of small needs, small hesitations, small acts of giving and receiving. And within that, there is something important for both sides: for the carer, a deep and active empathy, not only for what is medically required, but for what is humanly needed; and for the patient, a recognition of the weight being carried on their behalf, and a quiet, ongoing gratitude for the time, the effort, and the presence being given.

After one week, nothing and everything has changed, not in a single moment, but in the slow revealing of what was always there, just unseen.