All’s well that ends well… My inaugural lecture

“The time towards death is incredibly important.

Because it isn’t really about death: it’s about life and about your relationships. So, dying in a way that is as good as possible, whatever that means for you, is hugely important.

It really is a case of all’s well that ends well…

My mission over the past 20 years has been to include everybody, including people with learning disabilities, in all’s well that ends well.

Because if we are not paying attention to how people end their lives, their final months, the final time; and to their deaths and their bereavements – if that doesn’t matter, then what you’re really saying that people’s lives don’t matter.”

That’s what I said in my inaugural lecture last month.

I’ve finally managed to put the film of the lecture on YouTube. Here it is.

I am quite used to giving talks.

It goes with the job. My diary in the next few months includes a masterclass for palliative care professionals in Portugal, a keynote lecture at a conference for cancer nurses in Sweden, a workshop for care staff in learning disability homes in Milton Keynes, and a lecture for MPs, Lords and assorted healthcare professionals at the Houses of Parliament here in London.

But I rarely talk publicly about what I’ve learned in the L’Arche community, where I lived for eight years when I first came to England. It is sometimes hard to explain the bonds of friendship formed in those years of shared living, and how they have shaped my life and my work, even my work as an academic.

Sometimes it’s easy to forget about those bonds.

But at a time like this, when (ex-)L’Arche community members all over the world are coming together to mourn the deaths of Carol and Michelle, when people who haven’t seen each other for years are sharing memories, laughter, tears – I understand afresh why Michelle and Carol are so important in my life.

So it seems quite extraordinary that in my inaugural lecture last month, I did talk about L’Arche, and about friendships, and about bonds. I even had a slide and a story about Michelle. (It starts at 15 mins in the film of the lecture).

I’m glad I did, because now, when friends and colleagues ask me how I am, all I have to say is, Remember Michelle? The woman I shared a room with, who looked after me when I was ill?

She died.

And I don’t have to explain why that matters so much, because it is obvious.

Michelle’s and Carol’s deaths matter because their lives mattered.

The story of Carol’s death

My body is exhausted but my mind won’t let me sleep. The films of last week’s events are on a repeat-loop in my head, so let me share some of it with you. Let’s watch the blockbuster of Carol’s death in hospital, exactly a week ago today. It’s just over two hours long, from my arrival in hospital to the moment she died.

I’m happy and grateful that I could be an actor in that film, but as befits a grieving person, I’m also troubled by what-if’s and if-only’s. What if the script could have been changed a bit here, a bit there? If only.

Carol

Carol was 68 years old.

She was a force of nature, fighting off infections and other episodes of unwell-ness over the past years. The assistants (as we call the “support staff” who spend her days with her, some of whom live in her home) were attentive to her medical needs, so when she complained about her legs and she seemed to have lost strength in them, they were alarmed and took her to hospital.

She spent the night in A&E. Hazel telephoned me the following morning, still in A&E. She had been with Carol since midnight. All that time, Carol had been desperate and unable to get comfortable, grabbing onto Hazel, moaning, trying to shift position. The doctors had diagnosed a very large clot in the main blood vessel in her abdomen, supplying the lower part of her body. Her right leg was already stone cold.

She finally fell asleep in Hazel’s arms around 7.30, probably from sheer exhaustion. Two hours later, five doctors came past and said,

“We can’t operate. It’s palliative care only from now on.”

And left.

At least I think that is the story I heard from Hazel. She phoned me and burst into tears. Phone reception in A&E (and, as we would later discover, on the ward) is poor, so she kept cutting out and I couldn’t quite work out what was happening. Blood clot? Palliative care? What does that mean? Some people receive palliative care for months, years even. Is Carol dying? Or is she simply needing quality-of-life-care that could last a long time?

I had no idea, and as far as I could make out from the dodgy phone line, neither could Hazel, who anyway needed to be with Carol in her state of in-and-out-sleep. Who to ask? Doctors and nurses were running around the busy A&E department, saving lives and limbs of other patients. But Hazel’s distress was concern enough. She is one of the most experienced assistants in the L’Arche community, she’s been around for decades, she is a mature woman who has seen a lot of life and of death. Help was clearly needed.

“I’m coming,” I said to Hazel, who cried some more at that. “I’ll be there in an hour.”

I changed from my jeans and jumper into my power jacket. Sometimes it’s easier to get answers from doctors and nurses if you look like someone in authority, and I’ve got a fancy new title of Professor Of Palliative Care And Learning Disability, so that might help (it shouldn’t, but I find that it does). Better look the part, so they’ll believe me.

By the time I got to the hospital, Carol had finally been found a bed on the ward, in a side room. She looked at me, recognised me, grabbed hold of me, grabbed hold of the bedside, trying to shift position. “She’s been like this all night,” Hazel despaired. “In fact it’s much better now, it was far worse.”

Hazel knows about people dying. I looked at Carol and I looked at Hazel.

“This doesn’t look good,” we agreed. “She may be in her final days.”

Someone who needs “palliative care” can live for a long time – that’s not the same as dying. What I mean by “dying” is the point of no return, when the body starts shutting down, and there is nothing anyone can do to stop it or even to slow it. No need (indeed no point) to try and feed the person, or give them a drip, because it won’t make them live any longer. Dying is a natural process that can last a few minutes (as it did for Michelle) or, at a push, a few weeks (as it did for my mother, who found dying difficult and was hanging on and on), but usually it’s somewhere between a couple of hours and a couple of days.

Doctors and nurses (especially hospice nurses like myself) learn to recognise this phase. Breathing changes. People may slip into unconsciousness, then wake up again, then slip away again for a bit longer. Sometimes they become restless – in my hospice days, we called it “terminal restlessness”.

I thought Carol’s occasional drifting-off-to-a-brief-sleep was in fact not sleep but a few moments of unconsciousness, and her agitation could well indicate that she was, in fact, dying. If I’d been her nurse, this is when I would call her family and tell them to come. Plus, I’d give her a bit of morphine and perhaps some midazolam (a sedative) as she was clearly in distress.

But I was not her nurse and I don’t know anything about your prognosis if you have a blood clot. Perhaps this was something people recover from, even if just for a while? I needed to find out.

I found Carol’s very lovely nurse and we looked at her drug chart together. She’d had morphine twice during the night. Please give her some more, I said. She needs it, and she needs it now. The nurse agreed but couldn’t, because morphine was only written up as an intravenous injection, which she wasn’t allowed to give. She needed to wait for a doctor to authorise it in a different format.

“She’s been referred to the palliative care team,” said the nurse. “The doctor is coming soon.”

Now, that’s wonderful, but how soon is soon? If you only have two hours to live (which is what it turned out to be), then an hour’s wait is half a lifetime.

Next, the surgeon came onto the ward, thank goodness. He was the doctor who saw Carol in A&E last night. He called me out of the side room and explained about the blood clot and his inability to operate. He was touched by Carol’s personality, by her story (I gave him the headlines), and said, “She’s not going to survive this.”

She’s not going to survive this? Translation, please? What exactly does this mean?

I needed him to be absolutely clear, so I asked him.

“Does this mean that she is going to die in this room, and that it is going to happen soon? Is she dying now? Are we talking about a few days, at most?”

Yes, he said. Yes. That’s what it means.

“Thank you,” I said. Because we needed to know this. Hazel hadn’t known it, because nobody had spelled it out.

“Can she stay here?” I asked both him and the lovely nurse. She could.

“In that case,” I said, “I hope it’s OK if we take over that room. Carol has a lot of friends, and they will want to come and see her. Be prepared for an invasion.”

Here is the if-only.

If only the doctors had told us immediately that “we can’t operate” means “she is dying”. Presumably, they knew this last night. There is no way Carol’s carers could have known, or would even have known to ask. But if doctors know that Carol had already reached the point of no return, then why didn’t she have the right end-of-life drugs immediately, to make sure her dying was more comfortable? And why, come to think of it, wasn’t there an immediate discussion of where this dying was going to happen? We might have brought her home.

But at least now we knew. Two more assistants had already arrived at the same time as myself, and between us we wandered around the corridors trying to find the best phone signal, and put word out. It spread like wildfire. Carol does, indeed, have very many friends, and they did start to arrive.

First to make a brief visit was Carol’s housemate Serena with two more assistants. I was impressed they managed to bring Serena in so quickly – it was important, because Serena doesn’t understand words, so there was no other way to explain what was happening with Carol.

We also called the priests from Carol’s church, and one of them came quickly, calm and reassuring.

The other person who turned up was the palliative care consultant. I could have kissed her. (In fact I did, because I knew her from my hospice days and hadn’t seen her for years, and she’s brilliant.) She wrote up the morphine and midazolam Carol needed. I asked her to spell things out again. She is dying, yes? We’re talking hours to days?

“Yes. I’m thinking days,” said the consultant. I looked at Carol, who, even before those long-awaited injections of morphine and midazolam, had relaxed into what seemed like sleep but what was really unconsciousness. I looked at Hazel. Hm, I thought. I’m thinking hours. But the consultant thought we might have enough time to consider getting Carol home, if that’s what we wanted.

We talked about this and we agreed that yes, that would be good. I explained to everyone (by now, there were around eight of us sitting around the bed) about the unconsciousness. We thought that for Carol it would be fine to die here, comfortable now, with her friends around her.

But for everyone else, it would be so much better if Carol died at home.

Then everyone could take time to sit with her, both before and after she died.

So that was the plan. Bring Carol home. Tomorrow morning perhaps, the consultant had suggested.

My power jacket lay discarded in a corner. In the face of death, we are powerless, and we all have power. We lowered the bed and took down the bedsides, which were like barriers. We sat with her – priest on one side, me holding Carol’s hand on the other side. The priest prayed, putting her face close to Carol’s, and we think Carol knew, even though she was very deaf and wouldn’t be able to hear us talking. We sang The Lord is my shepherd. And I could see Carol’s breathing change. She was taking the slow, intermittent, deep breaths of someone very close to death. There was a profound intensity in the room, and a strong sense of togetherness.

It seemed entirely appropriate that just at that moment, Manuela (who also shares Carol’s home) came into the room with two young assistants. Like Serena, she needs explanation-through-experience because she doesn’t understand words. Carol loved Manuela, and she liked new people – she’d always welcome newcomers before anyone else did, with open arms (and a sloppy kiss). Helloooo! What’s your name?

The priest had reached the end of her prayer.

“Carol is taking her last breaths,” I said quietly to the new arrivals, who looked somewhat alarmed at the gasps and the gaps between the gasps. “It’s OK. This is normal, she is comfortable. She will just take another breath in a moment, and perhaps another one… It is OK.”

The priest ended the prayer.

And in the silence that followed, Carol died.

It was OK.

Carol’s dying had become a community event.

She was surrounded by the people from her community, old friends like myself and Manuela, new friends like the young assistants. We sat and sat. We were moved. We felt privileged. When someone dies, the world goes quiet. Even Manuela, who likes to make a lot of noise – especially when there are people around, especially in new environments – was quiet.

And we stayed for hours. We asked the nurse if that was OK, and it was. More people came. We washed Carol gently. Even in death, she brought people together – there we were, these young new friends who were in tears, and her old friends who were also in tears. A community of women who will carry this experience with them and pass it on, and be less afraid of death now.

Because Carol showed us that in the end, there is no need to be afraid.

 

Remembering and honouring

I am so moved by the beautiful and inspired ways in which my two friends are remembered and honoured.

Thrilled to have come across this photo of Michelle and Carol together

There is a Facebook group of people who have been part of the L’Arche community in London, who have known Michelle and Carol, whose lives they have touched. It currently has 140 members and counting. People all over the world are missing them, crying about them, and sharing photos and memories with each other. There is delight in the regular pings on my phone, with ever more pictures popping up. Work? Never mind about work. I’m sitting at my desk looking at work emails, but really, I’m looking at you two, ladies.

Carol was an active member of her church, where she would punctuate mass with her very loud AMEN. She used to bring up the collection during the offertory (that’s walking – or in her case wheeling – forward along the church aisle, halfway through mass, carrying the money that has been collected). Yesterday, the collection was brought forward on her empty wheelchair. What a powerful and moving way for a congregation to be reminded of their loss and to remember her. There is something about physical and visual reminders of the person – we may think it is useful for people with learning disabilities, but in fact it’s helping all of us.

There were impromptu gatherings at the homes of Carol and Michelle on the evenings that they died. Another gathering of shared grieving at what is called the “communi-tea” on Friday afternoon. This Monday afternoon, many people from the community gathered again, to talk about it all again. In the background, there was a slideshow of pictures showing the Carol and Michelle we knew; a few songs; a chance for people to say how they were feeling; and a chance for me to explain again exactly what had happened last week. How Carol and Michelle died, and why. People need to hear this, and I need to hear myself saying it, again and again.

I was so impressed with Peter, Carol’s housemate of 28 years, who came forward and, with a little bit of help, shared a few of his memories. Giving words to some of the thoughts that are hurting so much.

This is a time of stories, sharing and being together. It is important that we make time for it, informally, but also formally at events like this. It’s a terribly difficult time for all of us, but we’re coping as best we can.

 

“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!