How NOT to introduce the topic of end of life planning!

Transcript

Deborah:

But in terms of really understanding the importance of talking about dying, talking about death, and normalizing it in a very pragmatic way, I would say you're the person who really introduced me to that. And through that, through talking with you, I was aware that you were doing these living and dying conversations, and I thought that was great. I was aware of death cafes starting to be talked about, and then you introduced me to these cards. I can't remember the cards now, how you came across them, but they were these cards that you could pick-

Susan:

It was a game.

Deborah:

- like a game, that were all sorts of ways of opening up the conversation around death and dying. I thought, brilliant. I know my mom's really interested in this conversation around living and dying. I'm going to give these cards to her as a Hanukkah present, so that's what I did. I gave them to her as a Hanukkah present, and they were the least well-received Hanukkah present I've ever given. That's the polite way.

Susan:

That's putting it mildly.

Deborah:

There were a few different reasons as to why that was, some of which was the timing of it felt inappropriate, the subject matter didn't feel appropriate for a Hanukkah present. That's my understanding of it. It felt shocking to be given something of a subject that was actually quite confrontational as a surprise. That actually precipitated quite a painful time in our relationship.

Jane:

Is that how it was for you then Susan, quite painful yeah?

Susan:

It was a huge shock. I was opening the present thinking oh, what's this? It looks like a game. Then I picked out a card and it says something like, how many times have you visited the crematorium in the last year or something? I got a shock. I got a huge, huge shock when I realized what this game was about. I just couldn't cope with it, and I was angry with Deborah for giving it to me and not warning me. Yeah, and it went straight back to Deborah.

Jane:

Okay.

Deborah:

It stayed on the table for a while until I realized it was actually almost considered offensive, and that I just needed to remove it. And in the end I think I gave them to Cornelia, or she bought them off me and they just disappeared, and the conversation disappeared with it, it was like, okay that didn't work. Probably my feeling around that was that it went underground.  And then you had your back surgery in the summer of 2017.

Susan:

Mm-hmm (affirmative).

Deborah:

The whole thing just went on pause really. Then you released Gifted by Grief.

Susan:

You gave me the book, or you mentioned the book.

Deborah:

I mentioned the book.

Susan:

I said, "Oh, I'd like to read it." I think you sent me a copy, and I read it, and it really kind of moved me emotionally, of course, and moved me further forward on this kind of journey to think about the planning, think about coming back to planning.

Deborah:

Even with the list, I know that it's only a small part of Gifted by Grief, and then there was Before I Go, and I'd learned by then, I asked if you'd like a copy. And she said yes. So then I bought a copy and I gave it to her.

Susan:

That was last autumn, and I think I'll just go back in time a bit, just following on something from what you said, that I saw my father shortly after he died when I was in my 30s, and I went to my parents' home two or three hours after he died, and I remember knowing that I must go into the room and see him, that I'd never seen a dead body before, that I was absolutely terrified, and that I stood outside that bedroom door, kind of trying to open the door, and it was as if somebody was pushing it from the other side, because I could barely open it. I was so terrified. In the end I went in and he was lying on the bed with a bedspread right over him. I very gingerly pulled the bedspread back, and suddenly there was my dad. I mean this is my father, what am I so frightened of? I just sat there and held his hand and talked to him. I think that that kind of took me into being with somebody who has died as not just a possibility, but something that had actually happened.

Jane:

Yeah.

Susan:

Then with my aunt when she died, as she drew her last breath I put my head down on her pillow in the hospital and just talked to her. And when I looked up the nurse was sobbing, and I just had this feeling that that was an unusual thing to do, because somebody had just died. And I was with my mother for her last moment, so I had that experience.

Jane:

Okay lovely.

Susan:

When Deborah said to me last autumn, "Jane's written another book called Before I Go, would you like a copy?" I said, "Yes I would." I got my copy. I has fairly major back surgery, well not back surgery, a hysterectomy last November, and Deborah came for a week to look after me, and we talked about the book. Debra said, "I might be able to come through London at the end of January. I'm not quite sure." And I said, "If you agree to come through London at the end of January, I agree to read Jane's book by the time you come." We kind of shook hands on the deal, and that's what happened. I read your book, which was very fascinated with it, and I decided to prepare for Deborah and I discussing it, I made a note on every page where I wanted to refer to it, and then I typed up a list with the items from your book and the page number on one side, and any comments that I had, anything I could do in the right hand column.

Jane:

Wow.

Susan:

Then when you came at the end of January, we looked through it and we started kind of looking up files and discussing it. I felt very into it. I started talking to a lot of friends and asking them what they'd done, and had they done anything, and having all these conversations, and was really kind of entering it with a lot of energy. Then my husband Nachom went into hospital in the middle of February and he died there in April of COVID. Since then I just left it.

Jane:

Yeah, understandable.

Susan:

In the last few weeks something shifted in me and I felt ready to pick us up again.

Jane:

Wow. That's wonderful.

Deborah:

I have a moment I want to go back to, which was that moment in November where Julia had been with you for a week, and then I was with you for a week after you'd had your surgery. I remember it was my last day, I was leaving the next morning, you were in bed and I walked up the stairs and I felt exhausted, really, really tired. I remember saying to you, "I need to go into my bedroom and meditate.”

I sat down to meditate and very, very quickly I had all these tears start to flow, and I realized that I was feeling really anxious about the fact that I knew I was leaving the next day and that there were so many things I didn't... All these conversations that hadn't happened, things I didn't know around what you wanted, what was important for you around your power of attorney, to do with finances, to do with health, all these things that I still feel like I'm taking baby steps to understand about, but I know that you really care about the details. That that's important to you about how things are done. I think I was also scared of like, at some point I'm going to find myself in this position of responsibility of carrying out your wishes, or of needing to make all these decisions, and my sister lives in America. I felt this responsibility of, I know how important it is to do this well, and I really want to get it right, and I have no idea what right is, and I need more information. In order to do this well, I need more.

Deborah:

It felt like after this intense time of giving I was recognizing I have a need here, and I went into your room and I sat down on your bed. I think you said, "How was it? How was meditating?" I said, "Well, I actually had a very unexpected experience. Are you up for hearing it?" You said, "Yes." That's when I began talking about what happened and that I have this need, it was my need to have these conversations, to be more informed. I felt that you really heard me, something happened in that moment, and then you said, "Okay, I have a deal to offer or something," because you knew that I was going away. Because we'd already talked about when was the next time we were going to see each other? You said, "Is there any chance you can come through London on your way, or on your way home from France?" And if you can, as you've just said, I commit to reading the book, and in that moment I was like, I will make sure, probably on the way through. So that's what happened.

Deborah:

Then I come, and I see my mother in action because she's not just read the book, she's got this phenomenal list, phenomenal list with four different columns, and it's got different colors of the comments, and the columns and the page numbers. I'm like, "Oh my God you have to show this to Jane. She'll find this so exciting." Because I know the kind of thing that you get excited by. It was like, wow. Then in that was how much there is to do and how long it takes.

Jane:

Yeah.

Deborah:

Because there's so many details once you start engaging it, and each detail seems to open up another thread, or when you're pulling a thread, each one seems to open up this whole other conversation. I remember us going downstairs and having dinner with [Nakum 00:00:18:06], and having a bit of a conversation with him about what we'd been doing. You might remember more, just somehow in all of that, him saying, "Well, I've thought about lots of this, and I've got this whole plan in my mind around that, I've been gradually introducing you to the passwords of my bank accounts so that you'll be able to deal with all of that." That he shared that he was thinking about these things, and in his mind was already taking action. I remember you saying, "If you died I'd have absolutely no idea, I'd know how to do it if I was in the room with you, but I don't have enough information if I'm not in the room with you." It was a beautiful moment, and it was a classic moment in a way that he was thinking something but he hadn't talked to you about it.

Susan:

I'd forgotten that conversation.

Deborah:

That in itself highlighted, okay we need to do some more joining up here.

Jane:

Yeah, yeah. What I'm hearing is a family who in their individual ways, each of you was really courageous in being willing to talk about this sort of things. So [Nakum 00:19:32] was able to respond when you did introduce it, even though he hadn't said anything beforehand, and both of you, mother and daughter, were able to respond after a slightly sticky start maybe, but you were able to respond, and that has opened up an ongoing conversation really about this. Is that how you see it?

Susan:

Absolutely, absolutely. I said to Nachom something like, when I've got further with my stuff, we'll start on yours and we'll do more work. Then seven weeks later... So that didn't happen. I had learnt how to manage his online banking by the time he died. Yeah, there's been a lot to do.

Jane:

It sounds as though this is still, for both of you, an ongoing thing. There's probably some more things that need to be taken care of, and some more conversations to be had, and things to be written down. Is that the case?

Susan:

Well for me that's absolutely the case. I've been doing some work with you to move things forward, which has been very, very helpful. I know that there's a very long way to go for me to get this done. I think that [Nakum's 00:22:06] death, and the fact that living in this pandemic and being the age I am, those two things have propelled me forward again, because I could get this virus next week and be dead the week after. Somehow rather it brings into a much sharper focus, this COVID, well actually, it's not something down there, down the line, it killed him and it could kill me. I have to get on with that.

Jane:

Yeah, yeah. It's very salutary that, isn't it. Thank you for saying it so clearly. Yeah. Deborah anything?

Deborah:

There's all the practical stuff, and then there's all the psychological piece of it, in terms of listening to you talk about trying to open that door handle, and the anticipated horror of having these kinds of conversations, and that sense of that, that I felt those years ago when I gave you that game, and like oh my God, I've really messed it up, and I don't know when we're ever going to be able to have a conversation like this again.

 

Deborah:

Then in the car today, we were having a conversation around your financial power of attorney and all sorts of things around that, and I was just aware that it's this very bizarre thing, because on the one hand, we're having this conversation as I'm driving along, in quite a matter-of-fact way, and what we're talking about is when you've died, and this and that and the other, and three years ago, for sure it wouldn't have felt possible to, in a casual conversation, to be naming when you've died, and we need to think about this and what's going to happen with my sister. It's like I don't feel like I'm being cold and callous in that moment. I'm not in touch with the deep well of emotions that are going to be alive and activated when that moment happens, but there's something so relieving about being able to talk about it in a fairly matter-of-fact way that doesn't feel dishonourable. It's a curious thing to have those two things happen at the same time. I find it really relieving.

 

End.