When Debbie went into Saint John's Hospice, she was visited by some friends, but we inevitably had to limit the number and frequency of visits. Her energy was limited, and talking and communication took quite a lot of effort. That being the case, I wanted to ensure that if there was anyone Debs specifically wanted to see, we got it arranged asap. So I asked her if there was anyone she wanted me to get in contact with. "No-one", she said, "No unfinished business. Tell them I love them all." It was such a great line that I quoted it in the address I gave at her funeral.
During the days afterwards, I've begun to realise what a blessing she gave us being able to say that. At an earlier stage, I recall her saying to me that she didn't think that there was anything significant she felt we needed to talk about, as we had already spent a lot of time discussing the bigger issues - illness, hopes, fears, changes in expectations, and the prospect of her dying. It mean that if the end came suddenly, we wouldn't feel cut off with so much left unsaid or undone.
Likewise, I know Debs got in touch with a lot of people - sometimes people she hadn't had a lot of contact with for a while. She was doing a lot of email and Facebook messaging in that period. Although I haven't read those conversations, I know she derived a lot of pleasure from being in touch with people, and in some cases renewing relationships. By being so pro-active, she actually reduced the likelihood of any of us having any significant sense of regret.
However, over the years in the ministry, I have seen a lot of bereaved people with regrets. Guilt is a common feeling at a time of loss. When I take funerals, I try and find a way of acknowledging that unfinished business, as regret and guilt are normal and familiar parts of the experience of bereavement. So often people say "if only we'd had a bit more time to..." It's very important to reassure people - after all in many cases the person who has died probably wouldn't have been worried. This is especially so when someone dies suddenly. Not everyone has the opportunity to do what Debbie did, and people can be left with no opportunity to tie up loose ends, clear the air, write the letter or pay the visit.
The way things worked out for us was actually quite remarkable. After her diagnosis, we got through a whole set of significant family milestones in 2015 - a wedding, family birthdays (18th 21st and 80th), a holiday, Fleetwood Mac - a concert we had been looking forward to for months, Christmas etc. We even managed a few extras in 2016, ending with a fantastic living room gig by the lovely Yvonne Lyon. When Debbie was first ill, we weren't sure we'd get very far down that list, so we took it a step at a time, trying to make the most of the undefined amount of time we had.
Obviously if we could have extended that period of reasonable health for Debbie longer, we would have done. It's not difficult to write a list of things we had hoped for together, which we had to let go of - ideas about a nice holiday for our silver wedding and early dreams about retirement had to go. But having had such bad news at the start of 2015, it felt like we had had enough time together to feel some sense of completion. We at least finished a chapter, even if the story ended prematurely.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Wednesday, May 11, 2016
Sunday, May 08, 2016
Bereavement 1: Marking the Journey
As I said a while ago in a previous post, I've had mixed feelings over blogging about being alongside someone with cancer and now the experience of bereavement. Debbie's blog was very much about her story, and I didn't feel I had a lot to add in those weeks. However, since Debbie died I've been wanting to get a few ideas and feelings logged somewhere, so I'm going to post a few reflections. I have dealt with hundreds of bereaved people, but inevitably you are always at a distance. Writing about it first-hand is a very different project.
I'm very conscious that posts like this could become quite self-indulgent, and it's true that it will help me to clarify my own mind and get things out of my system. However, I'm also aware that my familiarity with funerals and other people's bereavements gives me a perspective that could be helpful to others. So, I hope these next posts help some people; if they don't, that's absolutely fine. I'll blog about football or something before too long!
A couple of days ago on the the BBC Today programme, there was a discussion about how many people die in hospital, when this was probably not the outcome that they or their relatives would have wanted. In a new book, Dr Seamus O'Mahony argued that many of those who die in hospital do so over-medicalised and without having made any kind of advance care plan. Obviously there will always be people who die in hospital, due to acute or sudden injury or illness, but many of us don't realise there are choices we can make. The key issue is getting people talking about it, because doing so brings out so many of our fears.
At a very early stage in the diagnosis of Debbie's cancer, we knew, at the very least, that her life was in grave danger and the possibility of curative treatment was, as she put it, a fragile hope. Not only did Debs blog about those issues, but she also did a lot to help us to anticipate what her dying would mean for us, and how we might all best prepare for it. Initially she wrote poems and letters for people, wrote an initial draft of her funeral (more about this in a future post) and talked very openly about letting go of some of her hopes for the future. Paradoxically as she did that, it seemed clear to me that she became more and more content and appreciative of what she had experienced in the past and the life she was enjoying in the present.
Having had some involvement at our local hospice as a minister, Debbie knew a little about it. It always struck us as a place which was peaceful, caring, and concerned with the whole person and their family. So we asked questions about what resources the hospice could offer, and how people came to be referred there. If, as seemed likely, her illness was terminal, then we both wanted to avoid the latter part of Debbie's life to be dominated by an endless round of interventions, and Debs was also clear she had no desire to die at home, especially if that meant our home would be a constant flow of nurses and visitors and our bedroom would look like a hospital ward. If possible, we agreed the hospice would be the best place for that final care of both her and us - and so it proved to be. Further down the line, Debbie completed a document where she explained her choices.
The critical issue is to get the conversation started. This coming week is the 2016 Awareness Week for the Dying Matters coalition, titled The Big Conversation. It's to encourage us all to start talking, whether there is a pressing reason to or not.
Having had some involvement at our local hospice as a minister, Debbie knew a little about it. It always struck us as a place which was peaceful, caring, and concerned with the whole person and their family. So we asked questions about what resources the hospice could offer, and how people came to be referred there. If, as seemed likely, her illness was terminal, then we both wanted to avoid the latter part of Debbie's life to be dominated by an endless round of interventions, and Debs was also clear she had no desire to die at home, especially if that meant our home would be a constant flow of nurses and visitors and our bedroom would look like a hospital ward. If possible, we agreed the hospice would be the best place for that final care of both her and us - and so it proved to be. Further down the line, Debbie completed a document where she explained her choices.
The critical issue is to get the conversation started. This coming week is the 2016 Awareness Week for the Dying Matters coalition, titled The Big Conversation. It's to encourage us all to start talking, whether there is a pressing reason to or not.
There are also other resources to get the conversation going, such as the Church of England resource Gravetalk, and a local initiative called My Last Orders.
Of course, you don't need any of those to talk about death and dying, but they can help to break the ice and get the conversation started. Whatever route you take, I can vouch for the fact that talking things through in advance is hugely worthwhile. Some people die suddenly, leaving relatives wondering what their loved one wanted; others reach a point in their illness where they can no longer communicate their wishes to those they will leave behind. Our experience was that talking it all through at an early stage meant there were no major questions left unresolved for us. We knew what Debbie wanted and felt, so we could work with her to achieve that, insofar as it was possible. What's more, we could get on with getting the most out of the time we had left. In the event, everything worked out according to her wishes, and that makes a big difference to how we are all feeling now.
So start the conversation. As the poster says, talking about dying won't make it happen.
Sunday, October 18, 2015
A Matter of Life and Death
A lot of friends and acquaintances will know that Debbie has been blogging since her diagnosis with cancer back in February. If you've read one of her most recent posts you'll know that we are now in a phase where containing the progress of her illness is probably the most we can hope for.
During this time, I was asked whether I was going to blog about it from the point of view of someone close to a person with cancer. I'm not quite sure what has held me back from doing so until now - perhaps not feeling it's 'my' story, not wanting to appear to wallow in things, or simply not knowing what to say. However, as our family has gone on this unexpected and unwelcome journey with cancer, I have been aware of a few recurring themes, so I thought I'd have a try at putting some of them into words in a few posts. This first try isn't a carefully thought out article - it's just what's bubbling in my mind at the moment.
We are in a strange phase now, not having any real idea of how long we may have, but a sense that this indeterminate period of time has an end point. Debbie has been physically constrained by her illness, but is very much here and with us - in and around the house, sharing meals, conversation, laughter, watching TV, writing and blogging and in many ways being her usual self. So we have a kind of double track going on - valuing the present, and also making sensible preparations for what is to come. Debs and I were only talking yesterday about how disconcerting, but necessary, it is for me to think myself into a future without her, even when she's in front of me and talking to me. Yet even as I write that down, it's quite hard to believe it's me typing it.
Since Debbie's current condition was confirmed, I have realised how weird it is to be a clergyperson. For 25 years I've been spending time with people who have been seriously and terminally ill, I've been with them close to and at the time of death, I've been with next of kin when they've heard of diagnoses and bereavements, I've prepared and taken hundreds of funerals and helped people find bereavement support. Does that make any difference? I guess it's a classic 'yes and no' response. Bereavement won't be any easier for me emotionally, than it would be for anyone else, but it will, at least, be familiar territory.
My experience is that for most people, conversation about death or dying is completely alien. I meet adults who have rarely, if ever, gone to a funeral or seen someone who has died. Many were prevented from attending funerals as children, and carry 'baggage' from that with them into their adult experience. It's fairly unusual to meet someone who has a clear and full idea of everything that's involved around the death of someone. And, of course, most people want to stay in denial that someone might die, until the issue is forced upon them by necessity. I have witnessed, and have felt, the great temptation for people to cling on to any hint of an upturn in someone's condition as the sign of a major recovery. Under those circumstances, any discussion of the subject of dying tends to be suppressed, as if talking about it will make it more likely.
If I was going to offer any advice out of my experience, it would be to encourage people to start talking about death and dying - what you hope for and what you fear, how you'd like to be remembered, and even some first thoughts on what sort of ceremony you would hope for. Do this before it's too late, and preferably when you have some time to think, read, research and discuss. I'm glad we have had some time to do this - it means we can go forward into whatever the coming time may hold, with some key decisions made, knowing it will be easier for those of us who are left. Crucially we'll know that one of the most important events in our life with each other was not a taboo that held us in fear, but a daunting challenge that we prepared for together.
In case any of that has helped, here's a couple of useful resources and links that might help to get you started:
Church of England Funerals Site Lots of information about ceremonies and practicalities.
November is Will Aid month, so it's a good time to get one written/updated and support some great charities in the process.
During this time, I was asked whether I was going to blog about it from the point of view of someone close to a person with cancer. I'm not quite sure what has held me back from doing so until now - perhaps not feeling it's 'my' story, not wanting to appear to wallow in things, or simply not knowing what to say. However, as our family has gone on this unexpected and unwelcome journey with cancer, I have been aware of a few recurring themes, so I thought I'd have a try at putting some of them into words in a few posts. This first try isn't a carefully thought out article - it's just what's bubbling in my mind at the moment.
We are in a strange phase now, not having any real idea of how long we may have, but a sense that this indeterminate period of time has an end point. Debbie has been physically constrained by her illness, but is very much here and with us - in and around the house, sharing meals, conversation, laughter, watching TV, writing and blogging and in many ways being her usual self. So we have a kind of double track going on - valuing the present, and also making sensible preparations for what is to come. Debs and I were only talking yesterday about how disconcerting, but necessary, it is for me to think myself into a future without her, even when she's in front of me and talking to me. Yet even as I write that down, it's quite hard to believe it's me typing it.
Since Debbie's current condition was confirmed, I have realised how weird it is to be a clergyperson. For 25 years I've been spending time with people who have been seriously and terminally ill, I've been with them close to and at the time of death, I've been with next of kin when they've heard of diagnoses and bereavements, I've prepared and taken hundreds of funerals and helped people find bereavement support. Does that make any difference? I guess it's a classic 'yes and no' response. Bereavement won't be any easier for me emotionally, than it would be for anyone else, but it will, at least, be familiar territory.
My experience is that for most people, conversation about death or dying is completely alien. I meet adults who have rarely, if ever, gone to a funeral or seen someone who has died. Many were prevented from attending funerals as children, and carry 'baggage' from that with them into their adult experience. It's fairly unusual to meet someone who has a clear and full idea of everything that's involved around the death of someone. And, of course, most people want to stay in denial that someone might die, until the issue is forced upon them by necessity. I have witnessed, and have felt, the great temptation for people to cling on to any hint of an upturn in someone's condition as the sign of a major recovery. Under those circumstances, any discussion of the subject of dying tends to be suppressed, as if talking about it will make it more likely.
If I was going to offer any advice out of my experience, it would be to encourage people to start talking about death and dying - what you hope for and what you fear, how you'd like to be remembered, and even some first thoughts on what sort of ceremony you would hope for. Do this before it's too late, and preferably when you have some time to think, read, research and discuss. I'm glad we have had some time to do this - it means we can go forward into whatever the coming time may hold, with some key decisions made, knowing it will be easier for those of us who are left. Crucially we'll know that one of the most important events in our life with each other was not a taboo that held us in fear, but a daunting challenge that we prepared for together.
In case any of that has helped, here's a couple of useful resources and links that might help to get you started:
Church of England Funerals Site Lots of information about ceremonies and practicalities.
November is Will Aid month, so it's a good time to get one written/updated and support some great charities in the process.
Friday, March 20, 2015
Debbie
I know a lot of friends and contacts will already know about what has been going on with Debbie's health. It's been quite a journey so far, and there's a lot to come. I'm not going to use this blog for updates about her, as you can follow news and also Debbie's reflections on her illness and treatment on her own new blog. Just click here if you'd like to view that and keep in touch with what's going on.
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