Being a Friend to Someone Who Is Dying

[Author note – I received significant feedback on the use of the term ”Dying’ so I wrote a follow up – ‘Living? Dying? Which? Both]

Many of my friends know me to be a control freak, so it won’t surprise them that I have now written a blog about them. “He simply can’t let go.” And they would be right. I am relatively young and my friends are as well, so we don’t have the experience that sadly many others have. If this is not speaking to you, keep that in mind.

I usually write about the patient, the carer, or the disease. Occasionally I write about the family. It occurred to me recently, watching two close friends grieve the loss of their friend, that I have largely neglected an entire constituency: the friends. The wider circle. The people who are not in the foxhole every day, but who matter enormously and who are suffering in their own way, quietly and often without acknowledgment.

This is not a specific call‑out of my friends. It is not directed at individuals but naturally, it is shaped entirely by my own experience and my relationships, and especially by the truly unimaginable support my family and I have had.

I should start with a confession. I am not particularly good at this. I am impatient. I have become self‑absorbed, especially through PSP, focused on my own challenges, my own discomfort, my own timetable, and I don’t always stop to think about what my friends are going through. So when I say this is a blog about friends, I want to be clear: I am not writing from a position of moral superiority. I am writing as someone who needs his friends and does not always deserve them.

The Landscape

Friendships are not all the same.

I have a very small number of best and close friends to whom I genuinely download, regardless of geography. The kind of conversations that would alarm a bystander. They know my fears, my dark moments, and my occasional black humour. They are load‑bearing walls. I am deeply grateful for them and aware that it is a lot to carry.

I have friends who live locally and show up practically. They are rocks. The kind of people who don’t ask if you need anything; they just appear with it. They are angels. And the best of them, when needed, also know how to back off. They read the room without being told, give space when space is what’s required, don’t take it personally, and then come back. That is not a small skill. It is, in fact, the whole skill. I have friends abroad who do the same, albeit from a distance, including a couple in weird time zones which is useful for someone up at 2AM.

I have reconnected with old friends, some of whom I hadn’t spoken to in years, and some of those reconnections have been genuinely special. For friends in this group, the leap is probably the hardest, because reconnecting after a long silence when illness is in the picture takes courage. But I’ve invariably found it worthwhile, and I think the friend has as well.

And I have friends whose connection has slowly dissipated. Not because they mean anything negative but because this is hard work. Because I am hard work. Because watching someone change in the ways PSP changes a person is genuinely difficult, and not everyone has the emotional toolkit for it. That is human. I try not to hold it against them, and I mostly succeed. On the days I don’t, I write blog posts.

There is a whole other community as well: the online PSP social media groups, who are my new group of strange bedfellows, none of whom would have chosen this place to meet.

What I Know For Certain

An unsolicited WhatsApp or message means more than I can adequately express.

Not a long one. Not a carefully worded, formal communication. Just: I am thinking of you. Or: this reminded me of that ridiculous thing you did in 1997. Or: I don’t know what to say, but I wanted you to know I am here. Not, of course, toxic positivity like it could be worse, I know you’ll get better, or try this miracle cure.

These messages arrive at random, often on difficult days, and they are the icing. I use that word deliberately. The family is the cake. My wife and kids are the bakery, helped by full‑time care. But the icing is what makes it special. The extra. The bit that wasn’t strictly necessary and arrived anyway.

So keep sending them. Even if you don’t hear back immediately. Even if the reply is short. Even if you wonder whether it’s too much. It almost certainly isn’t. The research is emphatic: friends of people with terminal illness consistently underestimate how much their contact matters, and terminally ill people consistently report that the worst thing friends do is go quiet. Not the wrong words. Silence.

The Hard Part

Recently I have seen friends who came to visit feel awkward when I have “powered down,” which is my phrase for the state PSP puts me in when my body has simply stopped cooperating for the day. I was not my best self. I was not the version of me they knew from before.

I could see by their reaction how much it cost them. I don’t know if they saw that I noticed. But I noticed. So I know it is hard.

It will get tougher as I progress, and I encourage friends to keep reaching out, even if I am no longer able to communicate. There is a tendency to think a person who is frozen or quiet is out to lunch, but I can categorically say that all evidence to date suggests the opposite. I am listening, and I appreciate you.

The clinical literature talks about something called anticipatory grief, which I have spoken about before: grieving someone before they are gone. It is, by all accounts, exactly as exhausting and disorienting as the grief that comes after, with the added complication that the person you are grieving is still there, still talking, still occasionally impatient, and still expecting you to show up.

You are allowed to find this hard. You are also allowed to find it meaningful.

Tips

Since I am a management consultant by background and apparently incapable of writing anything without some kind of structure, here is what I would say, in plain terms.

Don’t smother. Keep the patient first and the carer first. Occasionally they need space. Saying no is hard, so silence and deflection are information. Read the room. If you are unsure how long to visit or what kind of day it is, ask the family before you arrive rather than leaving the patient to manage the exit. And please, if you have decided you know what is best for the patient and you are planning something on their behalf that they haven’t endorsed, stop. There are no superheroes in PSP. There is no project that fixes it. There is only relationship, presence, and grace. The patient doesn’t need a project. They need a friend.

Try not to run away. Watching a person change is frightening. It presses on your own mortality. Being busy is easier. Clinical studies show that abandonment by friends in the context of terminal illness is one of the most reported sources of pain for patients. Not the disease. The quiet disappearances. The gradually lengthening gaps.

You don’t have to say the right thing. You can say you don’t know what to say. You don’t even have to say anything at all. Sitting quietly with someone is an underrated form of showing up, and sometimes exactly what is needed. What I ask you not to do is nothing.

Remember who I am. This is probably the hardest part, and the thing that scares me most. I have less energy, find it harder to turn and make eye contact, occasionally struggle with words, and sometimes feel apathy. As time goes on it will be harder to decipher the real me, but hang in there. I am not PSP. Somewhere behind walls of silence there will still be a me.

But I still want to be your friend. Not your charity case. Not your project. Your friend. Which means a two‑way relationship, for as long as that is possible.

I want to hear about your family, your problems, your challenges, the things keeping you up at night. First, because it takes my mind off my own situation, which is a gift you may not realise you are giving me. And second, because I am still your friend and your life still matters to me. Pretending otherwise because you feel awkward burdening someone with PSP with ordinary problems is, if I’m honest, a little insulting. I have PSP. You have your own challenges, which in many ways may be harder than mine. The comparison is irrelevant. I want to hear about you.

You are not burdening me. You are including me. There is a difference, and it matters enormously, with the caveat that you don’t smother. Know when it is time to leave or pull back. Your intuition should tell you.

Don’t let guilt stop you. We may have been close once, and then life happened. The gap stretched, and now there is a diagnosis in the picture and you feel, unfairly and unjustifiably, guilty. Don’t. Please don’t let that guilt be the reason you stay silent, unless there was a serious falling‑out that makes contact genuinely unhelpful. For everyone else: the drift is normal. It is not a moral failure. I don’t keep a ledger.

Some of the most meaningful conversations I’ve had since my diagnosis began with two awkward sentences after years of silence. If you are introverted, find your own way. For me, a WhatsApp works. Two sentences is enough. The point is that you reached forward, and that counts for more than you think.

The little things are the big things. A funny memory sent on an ordinary Tuesday. Bringing something over without being asked. Messaging because you were thinking of me at an inconvenient hour in a distant time zone. These are not small gestures in the context of what I am living. They are significant. On some days, they are everything.

Look after my family. If you find me difficult to reach, don’t know what to say, or struggle with what PSP looks like face‑to‑face, redirect that energy towards my wife and family. They need it more than I do. I am the one with the disease, but they are the ones living with me, which is its own profound challenge.

They take the brunt every day, without the option to step back or switch off. They need support, practically and emotionally, in ways that are sometimes easier to give than a visit to me. The same principles apply: don’t smother, read the room, ask what kind of day it is. A message to my wife, an offer of something specific, a conversation that isn’t about me for once will mean more to me than most things you could do directly. When the people I love most are looked after, so am I.

One Last Thing

This is just one person’s opinion, and many will disagree. One of the pleasures of writing your own blog is that you get to say it anyway.

If you are a friend of a friend who has PSP, or something similar, and you found this post while searching for how to help: I see you. The fact that you were searching is already most of the answer.

You don’t need a guide. You need courage. And you probably have more of it than you think.

It is going to get harder, and I understand if it becomes too much. But showing up still matters, and it matters deeply.