Appearance on Radio Bristol

From 30th March to 2nd April 2017 there will be a festival called Life, Death (and the Rest) at Arnos Vale Cemetery in Bristol, UK.  As part of this I will be hosting a Death Cafe on Saturday, 1st April 2017 at 2pm and I will be around all day on Sunday 2nd April 2017 to talk about the work of death doulas and associated agendas.  In support of the festival I was invited on to Radio Bristol alongside a representative from Arnos Vale.  I was happy to talk about the role of Death Cafes as well as giving some examples of the work I’ve done as a death doula. If you’d like to listen to this you will find it at 24 minutes in until 45 minutes on this podcast.

Doing publicity, newsletters, visits, managing correspondence and, yes, writing a blog are all part of what I do to promote the agenda of talking about death and dying.  Sometimes it feels like a lot of work for a small impact but I’d like to think that this movement striving to remove the taboo around death is slowly building momentum and it is all these small contributions made around the country by all the “death activists” (not really comfortable with that term) that add up to change. I’d like to think that in 10 years time we will all have an Advanced Directive outlining what we want when we are in our final days tucked away in our private papers and our loved ones will know exactly what we want when the time comes. And we wont be able to understand why there was a time when this wasn’t the case.

Tea, Cake and Death

In September 2016 I wrote about Death Cafes and how I’d like to run one.  Since then I have been holding a 2-monthly Death Cafe in Bristol and I thought I’d like to give some feedback for anyone thinking of holding one where you live.  General advice can be found at the Death Cafe website but here are some extra thoughts from me:

1. First and foremost, it is a real challenge to find the right venue that is accessible to everyone, e.g no stairs.  It needs to serve up tea and cake, be on bus routes, have little or no charge, be available at the time you want it and not be linked to an organisation or institution which might give the wrong impression of the meeting.  (This is why I tend to avoid church halls as I don’t want to give the impression that it is a religious event.) Most commercial cafes are reluctant to set aside a section of their premises when you can’t guarantee a) how many will turn up and b) whether they will spend any money. You will need to bear in mind that having really tried to cover every base, at every meeting someone will tell you how you should have found somewhere better. There will always be someone who doesn’t like the time of day, the day of the week or the cost of the sandwiches.

2. You need to work out how you will publicise the event.  In these modern times this generally means social media.  I create a Facebook event and send out an e-newsletter to a mailing list that has been established over the last few years. If you can attach a poster that is helpful and I send out reminders nearer the time. The advantage of the Facebook event is meant to be that you can see how many are expected and prime your venue to be ready for how many will attend. But (and this is a big BUT) this has proven to be totally unreliable for me.  At least half of them will not turn up and others will wander in announcing they hadn’t said they were coming.  So far these two groups have cancelled each other out so I haven’t been embarrassed at the venue when they have brought in extra staff.  In my opinion it is the down side of not charging people – they are much more relaxed about changing their minds at the last minute because they wont be out of pocket but very frustrating from an administrative point of view. And having spent so much time tracking down the right venue, you really want to keep them happy!

Friends girls

3. Having more than one table is a gamble if you want to be a full participant yourself. Recently I could hear another table getting a bit heated and had to try to monitor it whilst listening to someone speaking at my table.  Luckily it settled down. The bigger the number of tables the more likely you are to have to float a bit to check everyone is okay. I try to avoid becoming an informal chair to my table although participants often look to me for affirmation or information. It is meant to be self-managed with each participant taking an equal responsibility for what is discussed and how much each contributes. Having said that, as hosts we have a responsibility for the event to go well and to ensure that everyone enjoys it.

4. As there will always be someone new in the group I have a bit of preamble that I say at the beginning of each meeting.  It covers the history of Death Cafes (briefly, honest) and lays out a few rules concerning listening respectfully, giving everyone space to contribute and confidentiality (I usually use this point to ask if there are any journalists present). My view of confidentiality is that whilst you hope people will respect what others share, it cannot be guaranteed. I remind participants of this and ask that if they talk about the session outside of the venue they do not say anything that would identify an individual. After all we want people to take these discussion back to their friends and families as part of the movement to make talking about death and dying less of a taboo. I remind people that this is not a bereavement support group although members may talk about grief and loss – if anyone needs information about where to get support I have that information to hand.

5. I try to discourage people from “popping in”. Because of the nature of discussions, it can be hard for everyone if someone arrives late and/or leaves in the middle. There will be occasions when it is unavoidable but if I’m asked in advance I suggest they try to come when they can stay for the whole meeting.

6. I make sure that there are note pads and pencils on each table so people can make notes if they want.  I think it helps them to allow a discussion to flow, knowing they can come back to an earlier point if they want to.

notepad

7. Having done the introductory comments I explain that we will have a minute’s silence to help us come “into the room”; to leave outside some of our other issues such as work, parking, babysitters.  I have a small bell that I ring when this is finished and they will have been asked that on hearing this they can start their discussion with introducing themselves and saying what brought them to Death Cafe. At the end I have a short plenary in case anyone has any thoughts they’d like to share with the other tables before another minute’s silence to prepare to go back to their often busy lives. I think this nicely bookends the meeting.

8. From time to time I get requests to attend from people who have another agenda, e.g. students doing research, journalists, GP training. As the group is open to everyone and we do want to get the word out as much as possible my response tends to be that they can come but they have to do so as participants: it is not appropriate to just sit back and “study” the group. So far, they have either chosen not to come or have come, taken part and loved it.

There are so many different themes and characters at each meeting that I love running Death Cafe. I would urge anyone to have a go if they fancy it. What’s the worst that could happen? No-one turns up and you have to eat all the cake yourself!

The Importance of Trust

Recently I read about the death of 89 year-old dementia sufferer Gordon Penfold who died whilst in the care of Charnwood Oaks Care Home.  In the enquiry following his death the coroner criticised the home for failing to respond to his falling weight, making no real attempts to arrange for support from his GP or a dietitian.  His family felt terribly let down as they had trusted the home to care for their father who couldn’t communicate himself. Although they had visited regularly, given that he was bed-ridden, I imagine his weight loss had become severe before they registered it.  At that point they had insisted on a visit from a medical practitioner, but by then Gordon was too poorly to recover.

This was followed two days later by a programme on BBC Radio 4 about the impact on the Hyde surgery and its patients of GP Harold Shipman’s terrible series of murders.  The current GP spoke with feeling about the loss of trust in the practice and the lengths he had gone to rebuild this trust.  These two articles coming together made me ponder on the huge importance of the trust we place in those who care for us and for our loved ones.

Unless someone is still living at home with their carers it is likely that s/he will be left alone for quite lengthy periods. Medical staff  may monitor them and family and friends will visit but we are very dependent on professional carers to maintain a proper standard of care. When I think of my fears about dying I find it can centre on how safe I will feel in the care of a nursing home who may have tens, if not hundreds of other residents many of whom may be in the same state as me.  What if I’m not able to communicate with the staff or tell my visitors to speak up for me?  I remember a friend’s mother visiting her husband every day at his care home because she knew that they would often just put his food in front of him or fail to realise he needed the commode. Suffering from severe dementia he often couldn’t feed himself and she couldn’t bear the thought of not being with him at mealtimes long after he no longer recognised her. In essence, she did not trust the nursing home to care for him.

dementiacouple2

It makes me sad to think of all the people who have no one to look out for them, to check they are not being neglected or even abused.  The level of trust we need to place in those who look after the dying is pivotal to a good death but I wonder if we have enough checks and balances in place to ensure it is to the standard we want?  Maybe the worry that this trust might be misplaced is what keeps elderly couples living in extreme difficulty caring for each other rather than “going into a home”.  After all, if we can’t trust a GP who makes a home visit to an elderly person who can we trust?

Making hard work out of retirement

If you are lucky and live a fairly healthy life you should enjoy a period of retirement between finishing work outside the home and dying.  Governments are constantly reminding us to make proper provision so that we can enjoy this period of rest and relaxation but there is not much written about how to prepare mentally or emotionally. Personally I spent the last few years of my working life dreaming of the time when I could do nothing because my life was so full-on but I was also aware of anecdotes about people who couldn’t cope with idleness or boredom.  A survey in 2015 reported that 48% of retirees were happier than they thought they’d be but it didn’t report whether this meant it was just not as dreadful as they’d anticipated! People don’t always respond the way they think that they will.  My father was a true workaholic who was dreading retiring and hung on until he was 67 before giving up work.  We all thought he’d fade away but he took to it like a duck to water – in fact he remarked that he could now understand why the unemployed found it difficult to go back to work.

I recently went on holiday with three friends who, like me, are in their sixties and retired.   During the holiday we fell into a discussion about our respective retirements and whether we were managing it well.  We are all single women and I’m the only one who has had a child who is now grown up and flown the nest.  What is really interesting is I think that we are quite typical of single retired professional women.

Rose is retired from the Civil Service and relatively wealthy.  Having spent the first two years of her retirement as a consultant, she now does high level voluntary work, owns a second home in France, plays bridge and travels extensively.  She is a busy person and is happy in her retirement. With her parents having died some years ago she has no real family demands on her time.

Liz is also a wealthy pensioner having retired five years ago.  She has both elderly parents living across the other side of the country and she pays regular visits whilst resisting any further liability for them: she will not go to live with them or have either of them to live with her. In our discussions she declared “I think I’m making a poor job of retirement.” She still does minimum wage sessional work of the most menial type (shop work, sorting the mail) despite not needing the money – she admits that she misses the routine and structure of employment.  She will not consider voluntary work, has no real hobbies other than travelling and regularly complains how bored she is.

Gardening

Laurie retired three years ago and recently moved into a smaller house where her main project is to “sort out the garden”.  She spends Thursday to Sunday with her elderly mother who lives 60 miles away.  She does not volunteer and describes her daily routine at home as taking the two mile walk into her nearest town to buy groceries and a newspaper as she feels she needs the exercise.  Whilst there she often stops for coffee with friends.

Although I’m the youngest I retired first eight years ago at the age of just fifty-three.  For personal reasons I left my job as the CEO of a charity and decided to take a break for a year – at the time I didn’t know that this would effectively be the end of my professional career.  I did a little consultancy work and then decided to do some supply work as and when I felt like it. I have never been strongly motivated by money and realised that I preferred to tighten my belt rather than return to full-time work. Two years ago I gave up working entirely – my life was too busy to fit it in! I have two dogs; I design and make stained glass panels; I belong to a book club; I am a death doula as well as running a Death Cafe; I have several friends who have reduced their hours or retired and consequently I have many social engagements that fill my days. I have also been able to become more involved in politics and the local community. When people ask me if I get bored, I reply “Less often than I got bored at work”.

older-volunteer

Talking together with my friends we realised that 50% of us were making a good job out of our retirement, 25% had yet to start as caring for elderly relatives had taken the place of work and 25% was definitely not getting the hang of it.  I suspect that this reflects the wider population. We fill our time with volunteering, gardening, diy, hobbies, travelling and hanging out with other retirees – again fairly typical I would think.  Two of us had a gradual reduction in working in terms of levels of responsibilities as well number of hours worked and I wonder if this is why we’re better adjusted? We had time to plan ahead whilst weaning ourselves off the advantages of work: status, identity, structure, social contact and salary.  When you look at this list of advantages it’s clear that only one of the advantages of working is financial and it is the other four that you have to plan for if you want to be happy in your retirement. Don’t let this period of your life feels like you’re sitting in God’s waiting room – given that the average person will live another 18-20 years at the age of sixty-five, you could be there a lot longer than you think.