Monthly Archives: September 2015

“Listen to me….”

By Su Chard
MSc student and Independent celebrant.

Two events over the summer have given me much food for thought. They were the death of a friend and being part of a funding application for a project helping people to tell their stories so that they weren’t defined, at their funerals, by their dementia.

Both experiences re-enforced for me that empowering people means we have to listen. Of course that is a given but we have to listen out for what is not being said, too and to ask why.

My friend was 94. She had been planning her death for about 20 years. Those that were close to her were drilled in the final plan regularly. She had made being bossy an art form.

My role was to be vigilant. If her curtains weren’t open by 11 each morning I had to let myself in and make sure she wasn’t dead. I was regularly put through my paces so she was sure I knew what I had to do the day the curtains remained closed.

Her desire was to die “conveniently (meaning very soon), cleanly and in her bed.”

In June she was told she had about a month to live. The three of us on the

“Death task force” were set to work following her instructions that now, after all our rehearsals, changed constantly.

The list was:

Get her discharged from hospital….check.

Get her a room with a view….check.

Tell everyone she wanted to die alone and didn’t want visitors…ah!

We did as we were instructed, people told us they understood completely but still continued to visit because obviously we didn’t mean them.

We tried to be subtle, we tried Quaker plain speaking, I was bloody rude once and still they came, as did the cards and the flowers. I even took flowers, I had to, she had had my first bunch of sweet peas for the past 10 years why would I stop now… Surely she didn’t mean me?

Although a widow and without children she had a large network of people in our Quaker community who loved her. She said she never felt lonely.  But what became very clear to the three of us in her last two weeks was that she wanted this last challenge all to herself.  She even struggled with the intrusion of palliative care visits but put up with them as she saw their only role as hastening her death.

Eventually she dug deep for one last “bossy” moment.  She sent her first and last email,

Friends – thank you all for all the love and affection, comradeship and patience and understanding and so much else you have given me over the last 30 years or so. I hope there may be at least a week or two left which will give me time to get in touch with many of you, but I will need time to myself as well.”

But still they came not seeing the code in the message that she would do the contacting and so we had to send another email

W has asked me to convey that she knows that she is loved.  Two weeks on from her message, she has reached a place where our phone calls, cards, photographs and visits are having the effect of preventing her from feeling able to let go. She asks us now to hear her need for stillness.

The visits just kept proving she was loved and she wanted to stop having to reciprocate that love.

She died alone in a white, card and flower free room looking at a very English landscape eventually, getting her own way.  She asked for this in so many ways and we heard but took a long time to listen.

As this story was unfolding I was also working on a funding bid. The funders wanted everything in the project to be about the true voice of people with dementia, not their family or carers voices but “the voices of the dementing”, their words not mine.  They wanted it to be “ real” and  authentic”. They wanted to give a voice to the unheard “dementia community.”  I found myself confused and angered by their needs for this project.

As a celebrant with every funeral I write and deliver I hear of people who have lived their lives with no opportunity to be heard or have their say let alone to be listened to. They have not passed stories on to their children or even partners, sometimes.  The historical context of being born in the 20s means that most of society was not asked for their opinions very often. We, on the other hand, expect to be heard, to have our say, to tweet and blog and vote and wear our hearts on our sleeves and we are the ones with the expectations for choices about our deaths.

So as we all look at how we offer these choices and I believe, of course, that we should, I hope we can remember that my friend was a strong, very bossy, intelligent woman who had found paths to opportunity. She had the skills to find a way to be heard but my working life offers me contact with many people who don’t plan because no one listened before and are confused as to why we should start doing so now. They weren’t offered the skills needed for getting your own way. They truly mean it when they say; they want to go as they have lived their lives, without a fuss.  We want more for them.  But finding out what the more is comes from quality listening and considering their silences too.

A 98 year old widow said to me recently,

“They were lovely at the hospice but they kept asking us questions we didn’t know the answers to. He was there to die we had expected them to know what that meant and how it should happen.”

“It takes community…”

By Dr Max Mackay-James 

I rarely make really important decisions on my own and without talking with somebody. I also know from experience that if I don’t discuss an important decision with anybody, it can often end up being a bad one, and there will be unforeseen consequences on myself and other people which I never thought of at the time. Like most people I like to talk over an important decision with people I care about and trust. I value listening to other people’s opinions and advice, and sometimes I discuss the options in detail so I can see what they look like. I especially like giving myself time to consider before I decide: after all most important decisions take time to ripen before they are ready!

“It takes community…”.

I heard this phrase in a Diealog peer support group as I was in not so long ago. Diealog programmes are run by the charity* I look after which works to grow community-centred caring networks, and the peer support groups involve local people who meet regularly to talk about all aspects of ageing and dying, and to support each other. The local people in a Diealog group can include family, friends, neighbours, and sometimes people who share a ‘special interest’ – for instance, perhaps some people in a patient group. The groups will nearly always include at least one person with a serious illness. The talk is open and honest, and we give each other permission to raise any topic we want to within ground-rules of confidentiality which have been agreed in advance, and some other guidelines for reflective practice and co-facilitation.

We quite often talk about our fears of losing control and our independence as we age and decline, and during the process of dying with a terminal illness. This will nearly take us into our concerns about not being in control or being involved in decision-making about our care and the place we want to be in and everything else we think we will want at the end of our lives. We worry about the frailty of age which we know is commonplace as we grow older, and especially about dementia and other forms of cognitive impairment which may very well make us unable to make decisions or perhaps even talk to people about the things that matter to us.

“It takes community…”. The speaker was a younger member of our group.  I have seen the age range reported in the literature for similar to Diealog peer support groups as being between 7 and 95: the speaker in our group was not as young as 7 but she was under 50! There was quite a long silence in the group after she spoke. We had been talking about decision-making again, and this time we had run out of steam talking about how we thought would practically keep control and maintain the independence we said we wanted for our end of life decisions and living. We didn’t know the answer. Then she spoke.

In the silence I remember beginning to sense the quality of sadness I was feeling about the future loss of my powers transforming into a feeling of joy. The joy was simply arising in the awareness that this younger person had heard me along with all the others in the group, and she might be there one day in the future as part of my community to tell those caring for me what she had heard in this conversation. This transformation did not replace my not knowing the answer to how to be in control of decision-making, but it brought back a flow to the turbulence and added the possibility of creative effectiveness.

Yes, I thought, it takes community… my ageing and my dying, and decision-making is not something separate from other people. It belongs here too.

*Conscious Ageing Trust (Reg’d charity 1120811)