“It’s hurting in my thoughts”

I cried in church this morning. It was not convenient, because I lead the music group with my guitar and singing, and mine was the only working microphone. But the final hymn was one of Carol’s favourites. I can hear her sing it at the top of her voice, not quite getting the words straight but pitch-perfect and with gusto. And there’s something about music that bypasses the brain, which is working hard to keep composure, and sends you straight to the feelings of the heart. I had to turn away from that microphone because my crying was not quite in tune.

At the end of mass, I looked at my phone and found a message from the friend who shared the deaths of both Carol and Michelle. She goes to Carol’s church.

“Peter is in tears at church. He keeps saying in my thoughts and Jesus Christ!

This is significant. Peter (that’s not his real name), Carol and myself go back almost 30 years. He arrived in our newly established home in the L’Arche community at the same time as Carol, not because he had lived in an institution like Carol, but because he had lived at home and his mum had died.

Finding yourself in a new place, having lost not only your mum but also your home and everything that was familiar, would be hard for anyone, but especially so for a man with autism who has difficulty making sense of the world at the best of times.

Understanding and articulating his emotions does not come easily to Peter. He likes to stick to the security of well-worn phrases. I have never seen him cry.

It made me realise how huge his loss is. Carol was the one constant in his home, his buddy, his ally. They were really, really fond of each other. It also made me realise that I needed to be with Peter, not just for his sake but also for mine, because of those early years when we started to live together and went through all those turbulent times. Carol adapting to a home which wasn’t a large hospital; Peter adapting to a home that wasn’t home; and me adapting to a home with so many new people in it, and so many new responsibilities.

I spent four years living with Carol, but Peter spent 28 years.

So I invited myself to lunch at my old home. Peter was sitting alone in the living room, clutching the newspaper that is his security blanket, with the television on as always, because television is another security blanket. I went to sit next to him.

“I was crying in church today,” I said. “Because I was thinking of Carol. I heard you were crying in church too.”

Peter leafed through his newspaper and, peering at the pages, muttered the most articulate thing I’ve ever heard anyone say about what grief feels like.

“It’s hurting in my thoughts.”

Whilst I got my hanky out to do a bit more crying, he carried on, “And it’s hurting in my stomach and when I go to the toilet and when I sit down it’s hurting all the time, and I think I need to see the doctor or someone I’m not sure.”

“Peter,” I said, “it’s hurting in my thoughts too. That’s because Carol has died and it’s hurting us. I don’t think you need to see a doctor. I don’t think the doctor can make the hurting better. I think it’s Carol hurting in your stomach.”

Whilst I was talking, Peter got up and moved towards the television. I thought he was trying to shut out my words, but he was doing the opposite. Uncharacteristically for a man who needs that security blanket, he turned the volume down to zero, and then sat down again and heard me out.

“Peter,” I said, “I think we are going to be hurting in our thoughts and our stomachs for a very long time. Because we loved Carol and we miss her. Then I think it will get a bit better. And much later on, we will think of Carol and smile. But now, we think of Carol and we cry.”

Over lunch, I told the rest of the group some of the stories of those very early days, and Peter sat and listened and repeated some of it. And after lunch, I went into Carol’s room.

I’d seen one of the assistants busy with the hoover and some flowers, making her room look beautiful. There were photographs and her many soft toys everywhere, and her favourite hat was hanging at the end of her bed. There was no better place to sit and remember Carol and talk about her. I sat on the bed with the friend who’d sent me that text message, and we talked and talked.

Carol’s bedroom door is being kept wide open, so that everyone can go in and spend as much time there as they like. That includes the assistants, several of whom burst into tears when I asked them how they were because they loved Carol so much; but also Carol’s other housemates, two women with severe learning disabilities who are unable to understand words and do not speak. One of these friends wheeled herself past Carol’s room, hovering, not quite wanting to come in despite me calling her  – letting her do this in her own time, and leaving Carol’s room like this for many weeks, is probably the best way to explain to her that Carol is no longer here.

Before I went home, I asked Peter whether he, too, would like to go and see Carol’s room. He jumped up immediately and made his way down the corridor, clutching his newspaper under his arm.

I thought he might just peer in and go straight out, but he went into the room and stood stock still for several minutes. He bent down to peer at the photographs, then straightened up and turned his head this way, then that way.

Then he muttered something under his breath, the same sentence, a couple of times. It took me a while to catch it, but when I did, it blew me away. Once again, this man with severe learning disabilities and autism has been my teacher, articulating my need. Peter, who is hurting in his thoughts, just like me, looked at Carol’s photographs and flowers and said:

“I’m sending my thoughts to Jesus Christ.”

 

Telling the stories of Michelle and Carol dying

The boundaries between my personal and professional lives are completely blurred at the moment. My head and my heart are bursting. My days are filled with experiences, thoughts and emotions that touch closely on the things I have spent the past decade researching. This week I’ve learned more about people with learning disabilities dying, and what makes it hard for everyone, than I’ve learned in the past few years of research. The stories in my head need telling, but they are not the stories of anonymous research participants that I can write articles about. These are the stories of my friends. These are my stories.

The best place to tell my stories is this blog. I can’t focus on my work without telling you what is happening at home. So be prepared, everyone, for a series of blog posts about Carol and Michelle dying.

First up is Michelle’s friend Colette.

(That’s not her real name. I didn’t know Colette until two days ago, so let’s give her some privacy.)

When I heard that Michelle had died and I turned up at her care home, I was flabbergasted to find that the staff had not told Michelle’s 20 or so fellow residents about her death. Indeed, they had no intention of doing so until after her body was secreted away. They’d tell them tomorrow, perhaps.

It was 11 o’clock in the morning. Michelle had died around 3am, and since that time she had been locked away in her bedroom, with staff quietly informed as they arrived on shift. The sound I could hear was the overwhelming sound of silence.

“But, but, but…” I spluttered to the person in charge (let’s call her Mandy), “if people don’t know that she’s died, then they can’t say their goodbyes. Wouldn’t some people like to see Michelle?”

“Oh no, we don’t do that, they couldn’t cope with that,” Mandy said as quickly as she could.

Why not? “Well, some of them would freak out. But quite a lot of them would just hover around the door for the sensation of it.”

Well, I wondered aloud, what’s wrong with that?

I couldn’t let it go. I was still reeling from Carol’s death two days earlier, and had spent time helping everyone in the L’Arche community cope with it. Some 50 people (with and without learning disabilities) had gathered at Carol’s home in the evening. We shared memories. I told everyone exactly what had happened in the hospital, and why Carol had died, and how sudden it was, and how sad I felt, like everyone else. Some people (both assistants and people with learning disabilities) sobbed. Others were subdued. Some could not understand the words but were sitting with us nevertheless.

Not telling people about the death of a housemate?

It wouldn’t occur to me. Because if you don’t tell people, how can you begin to cope with it? I wasn’t just helping other people cope with it: through talking to everyone about Carol, and about what happened, I was also helping myself.

I tried not to show how horrified I was. I told Mandy that as luck would have it, it’s my job to help homes like hers cope with death. Yes, I completely understand how difficult it all is, but in my experience it really would be best to tell everyone straight away, and to give them an opportunity to see Michelle.

Hm. The person Mandy was most worried about was Colette. She and Michelle were close friends, always sitting together, looking out for each other. Perhaps they’d tell her tomorrow, separately. “I really don’t know how she’ll take it,” said Mandy. “I think she’ll fall apart.”

“Well,” I said, “if there’s anything I can do to help… I’m happy to talk to anyone about Michelle dying.”

To their credit, they listened. They told the group of residents at lunchtime. Then one of the staff members came into Michelle’s room (by now, her door had been unlocked, thank goodness, and I was sitting around chatting with the long-term friends I had called in, who were going to help wash and dress her). Could I come? Colette had taken it very badly. Could I please talk to her?

I met Colette in the quiet room she’d been taken into, together with a staff member (let’s call her Gloria). I could see immediately why Michelle liked her. Both were black older women with Down Syndrome; both were very self-possessed. I’d seen Colette before, when I visited Michelle, but I’d never had a conversation with her.

“Hello Colette,” I said, “are you Michelle’s friend?”

“Yes,” she said.

“So am I,” I said, shaking her hand. “How lovely to meet you. Have you heard about Michelle?” She nodded, so I asked, “what have you heard?”

“Michelle’s not very well,” Colette said quietly.

“Michelle has died,” said Gloria, even more quietly.

“She’s died,” Colette repeated.

“Yes,” I said. “She has. That’s what I heard too. I am really shocked. And I am feeling very sad. Because Michelle was my good friend and I’ll miss her.”

Colette looked at me. “I want to pray for Michelle,” she said.

“That is a really lovely thing to do,” I agreed. “You could pray for her now, if you like.”

Colette almost sent me into floods of tears, because she folded her hands and said the most beautiful, articulate and personal prayer. “Dear Lord, look after Michelle…”

When she finished, Gloria said to Colette, “Michelle is happy now. She’s looking down on us.”

Colette repeated a bit uncertainly, “Michelle is happy now…”

“Yes, I think that’s true,” I said. “Michelle is not in pain and I think she is happy. But I am not happy. Because now Michelle is not here anymore and I don’t like it.”

Colette looked at me now, nodding and nodding, so I asked her, “What did you and Michelle do together?”

Then Colette talked and talked some more, about how she and Michelle used to sit together and do their drawing together. I can picture the two of them. I was so very grateful that Michelle had such a friend, and I told Colette this.

“Did you already live here when Michelle first came? Yes? I am soooo glad that you were her good friend. Because I was worried when Michelle had to leave her old friends behind. I was worried that she wouldn’t find any new friends. So I’m glad she found you. Thank you for being such a good friend to her. But now it’s hard for you, isn’t it. Because now Michelle is dead. And now you have to sit and do your drawing by yourself, without Michelle next to you. You will miss Michelle.”

By now, we were just having an ordinary conversation, almost as friends, both remembering Michelle. Colette started to mention other people in her life who had died, and I joined in.

“Yes, my mum died four years ago,” I said. “Now that Michelle has died, I am thinking of my mum. Don’t you find that too?” I asked Gloria, turning to her. “That today you think of other people who died?”

Suddenly she was Gloria, rather than The Support Worker. “Yes…” she said, “my mum died too. I’m thinking of her too.”

It was rather lovely, the three of us having this intimate moment of talking about the people who were close to us. And for Colette, it was enough. She put her hand on my knee and looked me straight in the eyes.

“Thank you,” she said. “I’m alright now.”

I was impressed. “Goodness,” I said. “That’s amazing, that you’re alright now. I’m not yet alright…” And I had a sudden thought: “I think there is something you might like to do for Michelle. You like drawing and she liked drawing. Perhaps you could draw a picture of her? Or a picture for her?”

“Oh yes, oh yes!” Colette said. “I’ll do that. I’m going to do that now.” We gave each other a big hug and off she went, wheeling herself away in her chair. We had spent less than 10 minutes together – that was all she needed.

Gloria was amazed at how straightforward this had been. And agreed completely that it was good to be so open and honest. For me, it is the only way. I cannot imagine not talking about dying. How exhausting and difficult would that be, to worry about what to say, and to avoid it? It seems to me that the easiest, by far, is simply to name the things that have happened; the feelings we have about it all; and the things that are going to happen next.

Now, the next thing was to persuade them to let Colette see Michelle before she was whisked away by the undertakers.

I do take my hat off to the staff at that home, because they were clearly frightened of death, and it is not easy to change that around. By the time we had made sure Michelle looked beautiful and peaceful, and we had tidied her room, the staff had come to the conclusion that yes, perhaps Colette should see Michelle. They called in Colette’s mother, who had also become close to Michelle – she’d even visited Michelle when she was in hospital.

When Colette came finally came to Michelle’s bedside, it was gentle and it was important.

“Bye bye Michelle,” she said. I asked her whether she might like to say another prayer, and she did. She was serious and composed. Her mother, in the meantime, frantically stroked Colette’s head: “Don’t cry, don’t be upset…” (She looked more upset that Colette.)

For now, it was mission accomplished. I told Colette and Gloria that there would be a gathering of friends in Michelle’s old home that very evening, to remember her and talk about her – perhaps they would like to come? I could see Gloria was rather taken with this idea, but it was probably a step too far.

“Thank you,” I said to Mandy later that day, “for letting us stay with Michelle, and for letting Colette see her.”

Mandy agreed that it had been good. “We just needed to wait for her mum, because she needed her mum to support her.”

And I couldn’t help saying, “Actually, I think it was the other way round. I think it was Colette helping her mum.”

Michelle in her younger years

Thank you Michelle

My wonderful, wonderful friend Michelle died yesterday.

I am bereft. We all are, hundreds and hundreds of people across the world who have met her, who lived with her, whose lives she touched. A world without Michelle in it is not the same world.

I cannot believe I am writing these sentences. Michelle died just two days after Carol died. These women were part of my life, grounding me. My deep sense of loss is not just for them, but for a part of myself, for the person I could be with them. They knew me, they knew my faults (and I knew theirs), and yet they loved me (and I loved them). What I will miss is the light in their eyes when we met, shining in recognition of who I was. Not what I was, but who I was. They knew.

Michelle’s knowledge of me came from sharing her life with me in the 1980s (her bedroom, even, when I first arrived in England), the mundane everyday life. The joy and the exasperation, the excitement and the boredom of daily life. Michelle also introduced me to the F*** word (I still daren’t used it, but she did, freely).

Like Carol, Michelle was sent to a large residential hospital when she was a toddler, where she lived until she moved to our L’Arche Community in London when she was in her early 20s. Her triumphant survival of such an unpromising upbringing was thanks to her strong sense of self. Or perhaps it was simply a case of survival of the fittest.

She certainly was one of the fittest. Michelle fought to take centre stage. (Some of us suspect that she didn’t want Carol to take the limelight in death – these two women shared a strong but competitive friendship.) Michelle wanted to make sure that she got the things she wanted (that could include your earrings or your iPad), that things were done in the way she wanted it. She wanted to be in charge – ideally, she’d be the home manager, or perhaps the teacher. Tell people what to do. Sparks would fly (along with the F*** word), but her heart was made of gold, her sense of joy and celebration was infectious, and the love she had for her friends was deep.

Michelle became the community matriarch. She was one of our cornerstones.

I have written about Michelle before. There is a blog post about her move to a care home a few years ago. In my inaugural lecture this month, I explained how Michelle looked after me when I was ill, helping me see that I am not the sole Saviour Of The World – she, too, can lay claim to that title.

We are not surprised that Michelle has died. She had been unwell for years and was living on borrowed time. But at the same time we are surprised, because of that tenacious capacity for survival. When I heard the news yesterday morning that she’d died quite suddenly during the night, I went straight to her care home. The home was not used to opening the door on death (quite literally – she had been put in her bedroom with the door locked and nobody was allowed in) so it took some persuasion to let me reclaim her person-hood. I threw my decades-long friendship at it, and then, in desperation, my fancy job title (that’s another story altogether, which I will tell you some other time). But when they finally unlocked that door, I was able to spend such precious five hours with Michelle. I am moved to tears of gratitude for that opportunity.

I rang some of our shared women friends and once they arrived, the four of us did what I was, just two days earlier, able to do for Carol: we washed Michelle. Then we dressed her in the dress she liked, and she looked beautiful. I have never seen anyone look so happy, smiley and peaceful in death (and that’s saying something – I’ve seen hundreds of deaths). It made us smile and it made us weep. We sang Edelweiss, but I couldn’t quite reach the end of it, because it was her absolute favourite song. Before we got to bless Michelle forever (it should be bless My Homeland but we changed it) I was lying across her chest and sobbing. Because, honestly Michelle, how are we to live in a world without you in it?

But we will, and we shall, because among all the grief we, too, felt at peace. Michelle’s smile confirmed what we knew: her work is done. She truly was a teacher. To be in charge of your own life is not easy for a black woman born with Down Syndrome in the 1950s, but she managed it, and in doing so she showed us something precious: how to believe in yourself. Oh, and how to make lifelong friends, notwithstanding the F*** word.

Thank you Michelle.

With Michelle last year

Remembering Carol and Michelle

Thank you Carol

My dear friend Carol died today.

I had been called into hospital a few hours earlier, and dropped everything and went. We could see she was dying. We called her multitude of friends and they started arriving. We sat around her bed and sang some of her favourite songs and prayed, along with the priest who knew her well. Some more friends, including her housemate of 28 years (who has profound and multiple disabilities), had come into the room just as Carol took her final breaths. I was holding her hand when she died.

Such a privilege.

Hospitals are not ideal places to die (and I will write some more about that another time – this is not the time). The nurses and doctors couldn’t have been lovelier, but still. We made it as normal a place as we could manage, perhaps most strongly afterwards, when we – six women of different ages and from different cultures across the world, some familiar with the reality of dying, others experiencing it for the first time; all of whom loved Carol – gathered together around her after she died, washed her gently, combed her hair, closed her eyes, gave her clean sheets.

And we cried, and we remembered.

Here is a woman who has taught us so much. I, too, became Carol’s housemate 28 years ago (although I only shared her home for four years). I had visited her in the large hospital where she had grown up and lived since early childhood. She was one of the last people to leave the hospital, which was closing. She latched onto us immediately and with some excitement, because she knew that if strangers came to see you, it was your lucky day. You could leave and go to live at their place.

But it was our lucky day too. Carol was an extraordinary person, a survivor, a feisty woman who knew what she wanted and would tell you so in no uncertain terms. What she wanted most of all was friendship. We welcomed her, but she then welcomed us. She welcomed generations of new care assistants, neighbours, visitors, people in her church. She would reach out to shake the hand of anyone she met and ask them, What’s your name? She would remember you, and not just you, but also the relatives and pets you told her about. How’s your mum? she would ask, weeks after you told her your mum was ill.

Carol was a community builder.

We need community builders. We will miss her. I will miss her unfailing and deeply loyal friendship. Thank you Carol.

Does my mum know she’s died?

I am looking at the results of our Talking About Dying SurveyWe asked support staff to tell us whether, and how, they talk to people with intellectual disabilities about death and dying.

One comment jumps out at me. It’s from a staff member supporting a man with intellectual disabilities whose mother has died in the past year.

“He asks: Does my mum know she’s died? Where has she gone? Does she know she’s buried?”

There are several ways of looking at this. One is to think, well, clearly, this man needs help in understanding what death is. He doesn’t know that dead means dead.

The other is to realise that we’re looking at the emperor’s new clothes. Nobody can see them. It’s just that some people are better at owning up by asking the simplest of questions. Why isn’t he wearing any clothes? What is death?

(This happens a lot. “Do you want Brexit, everyone?” “What is Brexit?” “Brexit means Brexit!” Nobody is any the wiser.)

I am struck by the question about after-death awareness, because it seems to be the theme of my week. On Thursday, several people from our GRASSroots group went to visit Poppy’s funeral director at the cemetery round the corner. Here we are, having a jolly afternoon of tea and coffins.

We are shown around the mortuary at Poppy’s Funerals

The questions tumble out. Here is one that takes me by utter surprise, because it comes from someone who, I thought, has an excellent understanding of life and death.

Do bodies feel pain when they burn in the oven?

Would your answer be (a) yes (b) no or (c) don’t know? My immediate response is to answer “No! Because the body is dead,” whilst thinking rather smugly, “Here’s an opportunity to help a person with intellectual disabilities to understand that dead means dead.”

Other group members are keen to expand. “The body is just an empty shell, because the spirit has left it behind. It’s nothing. It doesn’t feel anything.”

“Oh, OK,” says the person who posed the question, looking only partly convinced. So I ask, “Do YOU think that bodies can feel pain after they die?”

“I don’t know, I’m confused…”, comes the answer. “Because physical pain and mental pain, aren’t they…”, meshing fingers, struggling to explain. We finally all come to the conclusion that yes, physical and mental pain are intertwined and often go together. But if suffering comes in many forms, one type of pain leading to another, than how can it make sense that the physical pain stops but awareness, spirit, mental energy somehow goes on?

The funeral woman owns up. “Actually, personally I don’t like the idea of being buried,” she says. “Because I’m claustrophobic. I know it’s nonsense to worry about that, because I’ll be dead, but still.” We all nod in sympathy. Like the man in our survey, we have difficulty imagining that we won’t know we’re buried.

And I suddenly realise that the question whether bodies feel pain during cremation is not a stupid question, or a simple question, but a profound one. It is a question about what happens after death. Some of us have our own answer to this, and if we’re lucky, the person who asks shares our perspective. But in truth, nobody knows for sure.

In our survey, we asked if the person with intellectual disabilities understood death, but perhaps we should have asked: do YOU, who supports him, understand death?

It occurs to me that after decades of working with people who are dying and bereaved, I am no closer to such understanding. But I am riveted by the way people with intellectual disabilities can shine a light on my confusion.

Perhaps we should send the GRASSroot members to Downing Street, to point out what the crucial questions are about Brexit.

Members of the GRASSroots group at the local cemetery this week

 

 

How long does a body burn, and where does the spirit go?

There’s quite a drive these days to make sure that people do a bit of funeral planning. Including people with learning disabilities. Do you want to be buried or cremated? Do you want flowers? Music? A church service?

There are easy-read documents that can be used as templates for funeral planning, such as When I Die or What If… Celebrating My Life

I’m a great fan of funeral planning.

The trouble is, when it comes to my own, I keep changing my mind. Even the burial/cremation preference has a tendency to change with each wonderful or less-than-wonderful funeral I go to.

But I do have the advantage of having been to very many funerals. Plus, in my hospice nursing days, I was sent on a course that involved visiting funeral parlours, nosing around the local crematorium and generally having all questions answered and myths busted.

But even knowing what all the options are, it’s not straightforward to plan your own funeral. For starters, what might be the wishes of those left behind? What if I specify tea & cake afterwards, but they would have liked to raise a glass of bubbly? What if I opt for cremation but they would love to visit a grave? This is why I haven’t written anything down. I’m not ready for an easy-read funeral plan, because they require straightforward answers, and I don’t have them. I’d rather think about funerals with my family when it comes up in conversation (and yes, it does, regularly enough), and I trust that when the time comes, my family will do whatever is good for them and, by implication, for me.

GRASSroots

Two and a half years ago, we set up the GRASSroots group, a local group of people with learning disabilities. We spend a Thursday afternoon drinking tea and eating biscuits/grapes/bananas whilst talking about death and dying. Every month. We have shared the stories of the people we have loved and who have died, again and again and again.

The people in the group are perfectly capable of understanding that they, too, will die one day.

But it’s only now, after 24 meetings, that they felt ready to invite a funeral director. I suggested it a year ago, but it didn’t make the top five of Good Ideas (at that time, visiting a hospice came top – which we duly did). This autumn, however, the idea of finding out more about funerals struck a chord with the group. We found Isabelle and Elizabeth from Poppy’s Funerals, based at the cemetery down the road (look them up, they are absolutely lovely), who were delighted to answer our questions.

Talking about funerals made me think of my mother’s funeral in 2014

Before they turned up, we spent an hour talking together about the funerals we remember, how we feel about funerals, what is good and what is difficult. Listening to each other, we learned how different funerals can be. Mothers, grandmothers, partners, somebody’s beloved dog. Burials, cremations. That strange moment when the curtains close and you have to walk away. Could you go and see what happens behind that curtain? What happens with the coffin?

These are not just questions from the people with learning disabilities.

We all had lots of questions. Here are some of them. Would you know the answers? And what would you like to know?

1. What is embalming?
2. What makes funerals expensive?
3. What is inside the oven – is it flames?
4. Can you put everything in the oven, including jewellery and photos?
5. How long does a body burn?
6. What is left after the body has burnt? Are there bones?
7. Can you be buried in your garden?
8. Where does the spirit go?

At this stage, I must own up to a hidden agenda.

Part of the reason I started this group is that I need more people with learning disabilities to help and advise me on my research projects. In order to advise on our “Talking About Dying Survey”, people must be able to, well, talk about dying. That evokes memories of the deaths in our lives, so we must talk about those first (as I said: again, and  again, and again).

Some of the group members have become excellent research advisors. Others prefer just to come and talk, or even just to listen – some members do not say very much, but faithfully turn up every month. One such quiet member says the meetings are “very interesting”, although death and funerals are “not the cheeriest of subjects”.

I am hoping to do more research into the processes of shared end-of-life decision making with people with learning disabilities. Evaluating the available materials (including easy-read funeral plans) will be part of that, so it would be quite good if I had a group of local people who were able to do that.

Surely, having spent two and a half years talking about dying, and now a whole afternoon asking questions about funerals, people might want to begin to think about their own? How about looking at some of these easy-read documents?

But no: this suggestion was met with a reluctant silence. Instead, people jumped at Isabelle’s invitation to come and visit Poppy’s Funeral parlour. Have a look around, ask more questions, have a look at the cemetery. So that’s what we’ll do next month.

I’m sure we all agree that people have a right to be involved in planning their own funeral, but how to do it?

And is it actually what they want to do? I am left wondering whether it’s not so much “writing down your funeral wishes” that matters, but the ability to talk together about funerals and to ask questions. And the opportunity to be involved in planning the funerals of those we love. I don’t think this happens enough.

In our Talking About Dying Survey, staff reported that out of 184 people with learning disabilities who had been recently bereaved, 119 had attended the funeral – but only 27 had been involved in planning or preparing the funeral in any way. For roughly half of the bereaved people, it was a parent who had died, so this finding is interesting. When my mother died, it was obvious that I needed to be involved in planning her funeral, despite living in a different country and being rather ill at the time. So were my teenage children, who did readings, made music and helped carry Oma (Grandma) in her coffin, which contained a thank-you note from the three of them. Being involved in funeral planning is not only an important part of grieving, but also helps to learn what the funeral choices are.

What was wonderful about the GRASSroots meeting was discovering, once again, that the emotions around deaths and funerals affect all of us, whether we have learning disabilities or not. (One person cried when she talked about a personal experience. It was the funeral director.)

And whilst we had many of our questions answered, being a funeral director (or indeed a professor) was no help when it came to life’s biggest questions.

Where does the spirit go?

Isabelle from Poppy’s Funerals (far left) with members of the GRASSroots group

Just in case you are wondering: here are the answers.

1. What is embalming? Draining the dead body of blood, and replacing it with chemicals. Like a preservative that stops the body from “going off”. (Although it is perfectly possible to keep a body in good condition, even at home, without embalming. The funeral director mentioned ice packs.)
2. What makes funerals expensive? Limousines, hearse, fancy coffins. None if this is necessary (you could indeed take the coffin to the funeral in your own car, if it fits.)
3. What is inside the oven – is it flames? No, it’s simply an extremely hot place. Hot enough to make the coffin burst into flames.
4. Can you put everything in the oven, including jewellery and photos? Yes, although usually there won’t be anything left of the jewellery. Glass is best avoided, so photos should just be plain or in a simple wooden frame. Flowers are usually taken off the coffin, because they create too much smoke.
5. How long does a body burn? Two to three hours.
6. What is left after the body has burnt? Are there bones? The only thing left are some pieces of the largest bones in the body. Sometimes there are some bits of metal left (for example, a hip replacement). Everything is scraped out of the oven and cooled down. The metal bits are taken out. The bones are put through a grinder, to make “ashes”.
7. Can you be buried in your garden? Yes, if you own the garden, and it’s not too close to water (but you need to get the right permission)
8. Where does the spirit go? …?????

Professing

I’ve just been made a professor.

My son’s friend, who happened to be around last night when we raised a glass of bubbly to toast this new status, asked “What does it mean, to be a professor?”

Good question. I suppose a professor is someone who professes. I looked it up.

profess v.
1 to affirm or announce (something, such as faith); acknowledge
2 to claim, often insincerely or falsely

To be a professor, it seems, is to sit on the Chair you’ve been given and announce your faith. Hopefully not too insincerely or falsely. I am supposed to know stuff; to spread the word; to make sure others know it too; to make sure others care about it too.

When I gained my doctorate, just over a decade ago, it felt like an achievement.

I hadn’t really wanted to do a PhD. It seemed rather a lot of work, and with three very young children at home, was that really a sensible way to use my energy? And anyway, I wasn’t really interested in highbrow academic stuff unless it was relevant to the real world. I had only recently left the bedside and my heart was still very much (and remains today) with the experiences of patients and families.

But my inspirational supervisors, Professor Leopold Curfs and Professor (now Baroness) Sheila Hollins, talked me into it. “You’ll be able to achieve more once you can call yourself Doctor”, they claimed. “Get research funding, publish papers…”

So I worked into the evening hours, writing papers after my toddlers had gone to bed. There was a rather lovely ceremony at Maastricht University when I was handed my oversized PhD certificate – gaining your doctorate is properly celebrated in the Netherlands.

And my supervisors were right. I didn’t say anything new, but once I got my title, people started to take notice. It happened almost overnight.

With my PhD supervisors, Prof Baroness Sheila Hollins and Prof Dr Leopold Curfs (2007)

Gaining a professorship feels not so much an achievement, but a responsibility.

Professors, I imagine, will be taken even more notice of than Doctors. There are a lot of people who have lifted me up to my chair. People who have things to say that are just as important, but who may be believed less, because they don’t have the status and the power.

People who experience the issues that I have been talking and writing about: illness, death, dying, bereavement. People with intellectual disabilities. Families. Care staff. Service managers. Nurses.

I have been inspired and propelled forward by my colleagues in London, across the UK, across the world – not just the senior ones (like the wonderful professors who have been my role models) but also the more junior ones, the research assistants, our research advisors: the people asking the questions and the people helping to answer them.

Now that I have been given a Chair, it looks like it’s my job to announce the things we have found to be true, collectively, as a research community. That is indeed a responsibility and a privilege.

I intend to not just sit on it, but stand on it.

Some members of my research community. Academics, people with intellectual disabilities, care staff, nurses, families, service managers… I need them all!

Death and dying? “We like to talk to people we know and can trust”

Here is what happened when I asked a team of actors with intellectual disabilities to come up with a short play on the jolly topic of death, dying and bereavement.

“You see,” I explained to Louise who helps the actors develop their performances, “we have a big conference coming up. We are celebrating 20 years of the Palliative Care for People with Learning Disabilities Network, and we really want people with intellectual disabilities to have their voices heard. It shouldn’t just be the professionals talking. Please come and join us. Any kind of performance would do. Could we commission a twenty minute play?”

Louise said yes. Great idea. What a wonderful topic to explore with the Baked Bean Theatre Company, who excel in taking performances into healthcare settings and have not been afraid to tackle difficult topics. With the conference a good six months away, she was confident that they would be able to come up with something.

Programmes were publicised. The promised Baked Bean performance would certainly get bums on seats.

But with the conference date fast approaching and all seats sold, Louise dropped her bombshell.

“Sorry,” she said. “The guys don’t want to come.”

This was putting it mildly.

But all was not lost. Instead, the group agreed to produce a video explaining why it was so difficult for them to talk about death and dying.

So on the day of the conference (13th June 2018, London) there was Louise, presenting Baked Bean’s A short film about death and dying to a large and captive audience of doctors, nurses, social workers, home managers, support workers and lots of others involved in supporting people with intellectual disabilities at the end of life. Plus a handful of people with intellectual disabilities who did come.

The Baked Bean actors on “A short film about death and dying”

When asked what they think about the topic of death, Mandy is most unambiguous in explaining their absence.

“NO!! I don’t like it!” she shouts, flourishing this statement with a few expressions that a dignified academic like me probably shouldn’t repeat in her blog.

The thing is, watching this film, it is difficult to escape the conclusion that a lot of people with intellectual disabilities do need to talk about dying. Louise explained that it certainly showed up an unmet need. The actors speak movingly about their own bereavements and the effect death has on people with intellectual disabilities.

We all understood that this group of actors felt too vulnerable to address the issue of death and dying on stage. It would be useful, though, to know what they think would help to cope with death and loss, so I’m glad they were able to talk about this on camera.

John suggests that a counselling group might help.

“Because there may be other people there who are in the same boat as them.”

Ramatu says, “People can be in your face. It makes you a little bit frustrated when there’s people hanging around you, and you just want to be alone.” She explains that it’s better to speak to someone that you really know, and not just to anybody. Someone who will listen to her and make her feel better about heryself.

“Then you are around people that love you and care for you.”

“Some people are referred to psychiatry,” says Gary. “But at the end of the day they are just paid to dig deep and find out more about your life. And if they are a total stranger, you don’t want to open up to another total stranger.”

In fact, Gary has quite a lot to say. He was my co-researcher for many years, so perhaps he is better prepared than his peers to articulate his thoughts on the topic of death and loss.

“A lot of people with disabilities don’t see their family regularly. So they have to rely on people coming in to see them. Which is kind of hard,” he adds thoughtfully, “if they’re changing all the time. Because you get to know one lot of carers, or support staff as some people call them. And times move on in that person’s life, or something’s happened, and they’ve had to leave and are replaced by someone new. Which upsets the apple cart a bit. So the person with a disability is unsure, they’ve got to go back to basics and start all over again…If I had more regular staff, I’d find it easier to sit that person down and talk to them.”

John sums it all up.

“In conclusion: We like to talk to people we know and can trust.”

Delegates at the PCPLD Network Conference applaud the film (London, 13th June 2018)

The audience was gripped.

The feedback was unequivocal, with a 10 out of 10 from almost everyone. Fantastic! Brilliant! Powerful! Insightful!

“Loved that they were heard saying ‘it’s too hard’, how this was shown with humour, but could see their pain and diverse thoughts,” one delegate wrote on the feedback form.

Another commented: “I learnt of the vulnerability of people with learning disabilities and how hard it might be to find someone to help with dying or bereavement.”

And another:

“Surprisingly, incredibly important. I thought I knew!”

So did I. When you have my kind of job, it’s easy to forget that not everyone talks about death and funerals over dinner, as we do in my house. I often talk with people with intellectual disabilities about dying, so it’s good to be reminded how very difficult this can be.

A lot of people said they would love to use the film for teaching. So I asked Baked Bean Theatre Company whether they could put it on YouTube. They did. Here is the link.

Enjoy, share, and most of all, take note.

Learning from the Learning Disability Mortality Review

One evening in 2007, I was watching the BBC evening news when Martin’s story broke.

Martin was 46 and had suffered a stroke. He had spent 26 days in hospital without food, which left him so weak that he died. Martin also had Down syndrome and severe intellectual disabilities. He was one of six people with intellectual disabilities who had died in hospital and who featured in Mencap’s Death by Indifference report. It claimed that people with intellectual disabilities are at risk of early death because of institutional discrimination in hospitals.

The recommendations? Make sure that hospital staff:

  • Understand about intellectual disabilities.
  • Involve families.
  • Understand the law around capacity and consent to treatment.

It was hardly rocket science.

Fast-forward eleven years.

Last week I was watching the BBC evening news when the story broke of several people with intellectual disabilities who had died too early because of healthcare failings. Their stories had been unearthed by the Learning Disability Mortality Review (LeDeR) Programme, who have just published their annual report.

The recommendations? Make sure that hospital staff:

  • Understand about intellectual disabilities.
  • Work together with other agencies (including families).
  • Understand the law around capacity and consent to treatment.

Spot the difference.

I can’t, and neither could the authors of the report.

“Most of the learning from mortality reviews presented in this annual report,” they write, “echoes that of previous reports of deaths of people with learning disabilities, with the same issues repeatedly identified as problematic over the past decade or so.”

There was the Independent Inquiry in 2008, led by Sir Jonathan Michael, who was shocked to discover that the experiences of Martin’s family were “by no means isolated, despite a clear framework of legislation against discrimination”. His report, Healthcare for All, made a string of recommendations.

You guessed it:

  • Make sure staff have mandatory training in intellectual disabilities.
  • Provide reasonable adjustments.
  • Work with families.

The Michael report also recommended a Confidential Inquiry into Premature Deaths of People with Learning Disabilities. This duly happened. It lasted 3 years, investigated 247 deaths of people with intellectual disabilities, and published the final report in 2013.

Lo and behold! People with intellectual disabilities were at risk of early death because of healthcare failings.

The recommendations?

  • Identify people with intellectual disabilities within the healthcare system.
  • Provide reasonable adjustments.
  • Ensure staff understand the law around capacity and consent.

The Learning Disability Mortality Review Programme is important for wide-ranging reasons, from the humanitarian to the economic.

It collates and shares anonymised information about the deaths of people with intellectual disabilities in England, so that common themes can be identified, and learning points can be turned into policy and practice improvements. This has been done effectively in a number of states in the USA, where themes picked up at mortality reviews for people with intellectual disabilities have led to further questions and investigations, and crucially, to action.

For example…

Compared with the general population, why were people with intellectual disabilities 30 times more likely to die from aspiration pneumonia?

(The answers are interesting. They found, for example, that 1 in 5 people who died from pneumonia had received dental work or were sedated in the few weeks before the death; or they aspirated during seizures; or they ate quickly or stole food. If you know this, you can make sure the staff knows it too, so they can raise alarm bells if someone who recently had their tooth extracted under sedation suddenly develops a high temperature).

Another one. Why did so many people with intellectual disabilities die following an accident, and in particular following a fall?

And: Why did relatively few people with intellectual disabilities access hospice services?

(I learnt all this from an interesting presentation recommended in the LeDeR report, which you can watch here on YouTube.)

I would hope that these are the kind of issues a mortality review picks up. And indeed it does. The CIPOLD report noted the low rates of access to specialist palliative care services. The latest LeDeR annual report notes the very high rates of deaths from pneumonia.

In 2018, I want to read what the plans are to address these things. Preferably with time scales and funding plans.

What I do NOT want to read in 2018 is that healthcare staff were unaware of the fact that they needed to make “reasonable adjustments” to the care of a person with intellectual disabilities. Or that there were no capacity assessments. Or that services failed to work together, and failed to listen to families.

What I want to know is this…

Given the recommendations in 2007, 2008, 2013, etc etc, that services should work together, how can it happen in this day and age that someone with intellectual disabilities dies following possible urinary sepsis, having been readmitted to hospital after being sent home with a catheter, where his care staff knew nothing about catheter care?

Perhaps these questions are much harder than rocket science, after all.

Euthanasia, intellectual disabilities and autism

Here are two stories that have kept me awake at night.

A woman with mild intellectual disabilities couldn’t live with her symptoms of tinnitus.
A man with autism couldn’t live with his symptoms of – well, autism.
They lived in the Netherlands. They asked for euthanasia. Their request was granted. They died.

Tinnitus

The woman with tinnitus was in her sixties and had (so her doctors said) “limited coping abilities”. She had been plagued by all sorts of different and terrible noises for over a decade. She had gone through many treatments – including a number of wrong ones – but she was not keen on them and often wanted to abandon them, and the people who treated her had not encouraged her to try and persevere.

She talked about euthanasia with her GP, but he didn’t want to meet her request, so she registered with the End-of-Life Clinic (set up in 2012 to help people whose own doctors, for whatever reason, were unable to go down the euthanasia road with them). A doctor and nurse from the clinic went to see her at home. They could see immediately that the woman was indeed suffering terribly from the slightest noise. Even water being boiled in a kettle was too much.

The doctor tried to explain to the woman that there are many people with tinnitus, and that most of them can manage to cope with it. But the patient, “with her primitive thinking abilities” (not my words – I’m quoting the report of the Euthanasia Review Committee), was focused solely on eliminating the tinnitus completely. Once she realised “I will never get rid of it”, her suffering became unbearable and hopeless to her, and she was then only focused on euthanasia.

According to the rules, the doctor asked an independent consultant for his opinion, who wasn’t sure whether the situation was without hope. A second independent consultant was found, who visited two weeks later. The second consultant agreed with the doctor that they had run out of options. The woman would not cooperate with any further treatments. The doctors worried that she might kill herself.

A week after the second consultant’s visit, the woman was given a lethal injection.

Autism

The man with the autistic spectrum disorder was in his thirties. He did not have intellectual disabilities but Asperger’s Syndrome. His is a sad story. He had endured neglect and abuse in childhood and suffered severe mental health problem.

What was the nature of the unbearable suffering that led the doctors to agree to his euthanasia request? According to the Dutch rules, the suffering must be caused by a medical condition. This has been interpreted widely, and has included psychiatric conditions (from which this man clearly suffered). But does it include life-long disability? Does it include autism?

I would like to think that the answer is an emphatic NO, but this is how the man’s ‘unbearable suffering’ is summarised in the report:

“The patient suffered from the fact that he had a great need for closeness with others whilst he couldn’t maintain long-lasting social contacts. This was because he misjudged interactions and was inclined to behaviour that crossed boundaries. He could react to things in a spontaneous and intense, sometimes extreme, manner. This often led to problems. However, the patient could not learn from these experiences. He was frustrated by his ‘forbidden’ feelings, such as longing for sexual intimacy. He suffered from his continuous yearning for meaningful relationships and his repeated frustrations in this area, because of his inability to deal adequately with closeness and social contacts.”

The psychiatrist thought that the patient’s suffering was unbearable and with no prospect of improvement, caused by an autism spectrum disorder, and concluded that his euthanasia wish should be processed.

Rather puzzlingly, the report added that cure for his condition was “no longer possible”, and that “treatment was purely palliative in nature”.

(I am trying, and failing, to see what palliative care for an autism spectrum disorder looks like.)

Euthanasia in the Netherlands

The Dutch are admirably straightforward about euthanasia. No euphemisms for them, no nice words like a Dignity in Dying Law. Their law does what it says on the tin: Termination of Life on Request and Assisted Suicide Act.

They are also admirably transparent about the practice of euthanasia. These two case reports were taken from the website of the Euthanasia Review Committee to which doctors must report every single case of euthanasia or assisted suicide (after the event). Each case report is reviewed; an annual report is written; and a selection of cases is put onto that website. In Dutch only, I’m afraid, so most of you won’t be able to read them – but I could.

I discovered a search box on their page of case reports. There were 416 of them, starting in 2012. I typed in variations on the words for “intellectual disabilities” and “autism”. Nine cases popped up. Nine people who had intellectual disabilities, or autism, or both; who had asked for euthanasia; and whose request had been granted. The reports describe why their suffering was unbearable, why it was “without prospect of improvement”, when and how they had asked for euthanasia, and how their request had been assessed by doctors. Was it a voluntary request? Was it well-considered? All these are criteria that must be met.

I translated these nine case reports into English and gathered three colleagues from the Netherlands and the UK. We read and discussed the case reports. We looked carefully at how Dutch doctors applied the criteria for euthanasia to people with intellectual disabilities and people with autism spectrum disorders.

Then we wrote a paper about what we found, which has just been published in the journal BMC Medical Ethics.

Having spent the past two years scrutinising the Dutch euthanasia system, and translating the reports of the Euthanasia Review Committees for the benefit of my UK colleagues, there is a lot I can say about euthanasia. Indeed I have – no-one in my circle of family, friends and colleagues has escaped the euthanasia debate. At my book group, I couldn’t help myself saying the E-word; the novel we were discussing was left behind as emotions ran high.

It’s a riskier conversation topic even than Brexit. At least with Brexit, most of the people I know are on the same side of the fence. Not so with euthanasia. People tend to have a strong opinion, which they hold on to with passion. Before you know it, you’re caught up in a campaign rather than a clear-headed discussion about the issues. I can understand both sides of the campaign. Branding pro-euthanasia campaigners as evil murderers and anti-euthanasia campaigners as evil torturers doesn’t help anyone. No-one involved in these complex situation is in the business of either torturing or murdering.

There is absolutely no doubt in my mind that the woman with tinnitus and the man with autism suffered terribly. Unbearably, even. There is also no doubt in my mind that the doctors who gave them euthanasia did so out of true compassion and a desire to do the best for their patients. We all want what is best. Individual stories of people who are seeking help to die are almost always unbearably sad and difficult. Who’d be in their shoes?

But I cannot help feeling deeply uneasy about these cases.

Because in order to agree to someone’s euthanasia request, you have to agree that the person’s suffering is terrible enough, and that it can never improve. You have to agree that for that person, being dead is better than being alive.

Of course there is only one person who can truly judge this, and that is the person him- or herself. But if someone says she wants to die, she may have a right to ask for help, but do we have a duty to give it? As a society, we agree that self-determination and autonomy is not limitless, and that there must be adequate protection for those who are vulnerable. That’s why we do not stock euthanasia drugs on the supermarket shelves. That’s why there are laws, and attempts within those laws to protect vulnerable people.

Having scrutinised the nine Dutch cases, I am not convinced that vulnerable people are adequately protected.

I hope you will read our paper, so you can draw your own conclusions and join the debate.

Links

Our paper on euthanasia, intellectual disability and autism spectrum disorder
Woman with tinnitus (2015)
Man with autism (2014)
English version of the Euthanasia Review Committee website