When illness turns your loved one into someone else

Part two of my conversation with Sarah Tarlow, on 'anticipatory' grief and the brutal impact of a long, drawn out death...

I can remember the mutterings. My mum’s voice as she whispered, ferociously, things I could not hear, things I did not want to hear. The sound of my dad’s jaw clicking in stress, even today, can cause my body to jerk, involuntary, with a memory that I do not want to source, do not want to flesh out. 

Because of that, I don’t want to go into much, if any detail, of how - during mum’s illness and death to a brain tumour - she changed. I thought of going back to my diaries and seeing what I wrote at the time, as I am almost certain there will be lines detailing what it was like to stare at my mum in a hospice bed and see only a stranger. But I’m trying to learn to protect myself. When I first started this newsletter I went too far back, too quickly, and it damaged me. I don’t always have to mine my own memories in order to discuss the things we need to discuss.

And I do think we need to talk about, so much more, the toll illness can take on the body. On the mind. How it results in the griever watching pieces of the person they loved being removed one by one. How unprepared we are to deal with the mess that creates, how angry we can be at the person we’re losing, how guilty that can make us feel. They call it ‘anticipatory’ grief when we know someone is going to die and we are left to deal with that in a slow, drawn out way. I’ve spoken before on how I’m not sure all these categories of grief are helpful, but mostly I don’t think they capture how that feels, what it’s like to witness and live through. What lingers, what’s erased. 

When we learn that others have gone through a similar thing to us, that they felt the same whispered emotions we did, the things we were ashamed of, it can help us to find peace. The word ‘peace’ is overused these days, but as I sit here at my kitchen table, typing this all out, while going up every now and then to stir some caramelising onions, it is what I feel. I may not be ready to go into the details of what happened, and I may never be able to do that, but I can acknowledge that the tangle of conflicting emotions I felt at the time were OK. They were natural. I can’t change that time: it was what it was and I am who I am. 

It’s finding this forgiveness within our grief that I spoke about with Sarah Tarlow, author of The Archaeology of Loss. This is part two of our conversation, to read more part one can be find here, and her brilliant memoir is here. 

We use photographs as a way to remember people, yet like objects and our own memories, they’re so unreliable. How did they play into your grief, and writing the memoir? 

I didn’t have a lot of photos of Mark. We took photos, but all the photos he took were slides for work that he could use in lectures. I’m the same. We have a few and after he died I had some printed out, and the children asked for some to be printed out. In some ways it’s kind of nice as we can go back [to moments the boys might not remember] Greg is the youngest, he had just turned 11 when Mark died, and he was six when Mark first fell ill. He was just a little boy. 

I don’t look at photos a great deal and then I come across them and they’re heart wrenching, it gives you a moment of shock. Particularly when you see those faces and they don’t know what’s about to happen.

I’ve been writing a lot about capturing a legacy, how new technology is allowing us to record memories, even create AI versions of ourselves to converse with… The book is almost a time capsule of your marriage to Mark, it’s leaving behind who he was and capturing it. How important do you think leaving behind a legacy is? 

I can see it could go both ways. I have a friend who lost her husband to motor neurone disease, they used technology and photos to capture him as he was. It helped. For me, it might be a bit depressing. You need to have some clear space to create a new life. We might have decades and decades ahead of us and I’m not going to spend all of that time making a shrine of that person who has died. You need to create a balance, with the space in your life that you devote to memory and then the space in your life to create more memories, and have a happy life.

You say that you think people who say they don’t have regrets might be psychopaths, which I liked and made me laugh. But, throughout the process of the book, you’ve had to dig into a lot of your own regrets. Did it help you deal with them in any way? 

I think it has helped me find an accommodation in myself, and be forgiving. As I was disappointed in myself and I look back and think ‘why didn’t I do this, why was I not a better person, why was I not more assertive about this thing.’ Writing about it has helped me see it really was a difficult situation and there wasn’t the right thing to do. I can look back and think I could have done this thing and it might have been better, but it also might not have been. I have learned to be more forgiving of myself and think I was doing, if not the best I could, then a reasonable job. 

[CATRIONA NOTE: I wrote a little bit about how writing my own story has helped me forgive myself in many ways, you can find that here.] 

There’s a section where you discuss the medieval books on death and I was struck, in particular, on how they didn’t detail exactly how a person died. Which is the total opposite to how we behave today, from my work in the media I am aware of how much, after a celebrity dies, the searches wanting to know the details of what killed them spike. It’s almost an obsession… I wondered what you think needs to change when it comes to our current cultural way of dealing with death? 

I think we need to be honest about what we experience when we confront our own mortality, and confront profound loss. Actually, it doesn’t even have to be a profound loss, as when celebrities die we can be quite impacted by that loss too. We need to lose those angelic narratives, where everyone was just great and the only way we [the griever] can be is just sad. We need to talk about the full range of emotions. 

We want to find out the cause of death as we are so scared of death and want to avoid that. If we can’t see ourselves in their death then we can think ‘I’m OK.’ 

Societally we see death as a failure, a failure of medicine, of us as individuals: we didn’t go to the doctor in time, we allowed our bad thoughts to take over… We kind of decide to avoid thinking about death altogether and instead we get wrapped up in living healthily. But we can’t avoid it, we might be able to postpone it. What we don’t think about is how do I want my death to be, what is a good way to die? Is it being calm? is it taking control? For me, it’s absolutely vital that we can take control of our own lives. I want to do some campaigning in this area. 

[CATRIONA NOTE: currently in the UK although suicide itself is not illegal, it remains a criminal offence for a third party to assist or encourage another to die by suicide. This is why Mark had to die alone and secretly, as Sarah and her children could not be involved in his death. The debate as to how much control we should have over our own deaths, and how much government policy should even play into it, has been going on for years, with those seeking a change in the law stating that “dignity in death is as important as dignity in life and people should have the right to determine the timing and circumstances of their own death.”] 

I’m encouraged as to how many people want to see a change in the law, change in society. Politicians are very nervous about introducing legislative change which is what we need, but if they knew how much people cared about this and we were having these conversations publicly and loudly, they’d be a lot less spineless and be more willing to take it forward.

It’s why it’s so important to hear stories like yours, as it humanises the impact the law has on everyday lives… 

Mark’s illness was so drawn out, you’re losing them so gradually so the moment of death is of a different nature than of [losing] someone suddenly. You’ve done the ‘anticipatory grief’ or whatever they call it. After Mark died I didn’t feel the same sense of loss as to when my dad died, which was a much more straight forward type of death, but the one thing I couldn’t think or talk about without crying is that he died on his own. 

Something that if we’d lived in a different society that couldn’t have happened. 

I’m really grateful for you for getting the message out and get the message going that grief and death are really complicated and we need to talk about the reality of death and grief so much more. 

The whole purpose of the newsletter is trying to adapt the way we talk about grief. I couldn’t find myself in a lot of the discussions surrounding it, it was either a very clinical way of discussing grief or so overtly emotional, like waking up and missing someone every minute type thing. I wanted to explore the different sides of my own grief and others, and I’m still exploring that. 

A woman got in touch with me after reading about the book in the Guardian. She had lost her husband and I thought her grief and relationship with him was the classic one we all read and see about. She said the part of my book where I said Mark’s illness “stripped everything away from him and left this brutal core” had resonated with her. I was so surprised as I thought her bereavement story was different from mine. We all have different stories and we all have different circumstances and we all respond differently but it’s I find it encouraging and less lonely that people can say, yes I found that too. Particularly when it comes to illness and when people say ‘I found that before the person died they’d transformed into something not unrecognisable but less attractive.’

Without us having these conversations it’s so easy to transfer ideas onto other people but these are simply ideals that we’ve been taught, rather than reality…

I’ve met a lot of other youngish widows, and right after Mark died I met a woman my age, who had lost her husband really suddenly. We’ve become really good friends. I had known her a long time before she said to me “we were going through a bad period, we were really grumpy and there as a lot of stress, that must have been the reason he had the heart attack.” I’d thought they had this ideal marriage and straight forward devotion. We [tend to] feel a bit ashamed, of not having ideal relationships, your parent, your partner, your sibling… how we aren’t perfect. But that’s OK.