“To do is to be” – Nietzsche
“To be is to do” – Kant
“Do be do be do” – Sinatra
A number of people have asked me to say a bit more about why you would want a doula, what one might do and how to get one. What I write will be based on the UK but could equally apply in other countries.
“Why would I want one?”
It is a fact of life that any one of us at any time could receive the sad news that we have a life-limiting condition. In current medical terms this means that your life expectancy is usually under 12 months. This condition has no regard for age or circumstances but hopefully you will be aged 90 with a large close knit family all living locally who can rally round and support you emotionally and practically during your last days and weeks. However many people will not be in this position. As social mobility has meant that many families are scattered geographically it is also possible that smaller families mean less people to share the load. Parents are having children later in life (the average age of first time mothers is now above thirty) and many of those children are staying at home longer due to the economic climate so there is less room for an elderly relative or spare capacity to support them in their own homes. For example my own son was born when my mom was 72!
The state and the hospice movement provide excellent care for people who are in medical need and/or unable to cope at home. The gap in provision appears to be where an individual still has some independence and can cope alone or with the help of family and friends. This is particularly true where a person is not receiving any medical treatment. Generally the state will leave you to it. A number of charities offer services such as the Marie Curie Helper Service or McMillan Buddy Service. These are dependent on volunteers and generally provide 1 -3 hours per week but they are not available in all areas. Services provided will usually be limited to companionship and carer respite. A doula can supplement and complement other services as well as providing the only support.
“What would you do?”
A doula can do anything (within reason) that a person needs. Initially a meeting might discuss how a client is feeling about their diagnosis and how they are going to manage in the final stage of their life. The doula might signpost services that can help and make useful suggestions. The doula may spend the whole of this meeting just listening if that’s what the client needs. The plan for the coming months may involve the doula directly with regular visits and support or the initial meeting may be enough to help a client feel empowered to manage what is to come. A doula may also assist in preparing an Advance Care Plan advising everyone how a client may want to plan for their last days. Other activities could be inside the home or outside as many clients enjoy the opportunity to get out on visits or even to do some shopping. Most of my work has been a combination of both. Not all clients want to talk about illness and death all the time but I’ve had some amazing conversations just walking to a cafe or driving to the shops.
“How do I get one?”
“Let me google that for you”. Yes, a search engine is always a good way to go. But there are some excellent resources on the internet including Living Well Dying Well. I would always suggest people try the charitable and statutory sectors first but if this isn’t available, or you want more than is offered, a private end of life doula may be just what you need. Afterall, you wouldn’t hesitate to pay someone to clean your house or to tidy your garden: so just think of it as a gift of care to yourself or your loved one.
“How much is it likely to cost?”
The cost of this service can vary tremendously according to different doulas. I would charge between £15 and £30 per hour according to the services provided and the circumstances of the client. Occasionally I will charge additional expenses to cover costs such as mileage and parking but these would always be agreed in advance.
How lovely to read that Ed Sheeran donated 13 bags of “old” clothes to his local hospice shop St Elizabeth’s in Framlingham. Lots of his gear for sale in the shop and on eBay if you’re interested in a pair of Ed’s Gucci trainers. What a brilliant way of having a sort out and lending his public support for the charity.
I’m one of those people who tries to recycle everything from an empty yogurt pot to a dead computer. But I’m also the product of post-war thriftiness where my mother never threw away so much as a rubber band as it was sure to come in handy one day. This means that I will keep those floral flared trousers that don’t fit me any more because they may come back into fashion (yeah right – and I may lose that two stone which causes them not to fit) and, if not, I could use them for that patchwork quilt I’m always going to start (but never actually do). So I have a three stage approach to my clothing sort-outs:
- Leave them cluttering up my drawers and wardrobes – never wearing them but letting me struggle to squeeze in the clothes I do wear
- Move them to my “clothes on probation” bag. This is a bin liner in the bottom of the wardrobe that stores clothes I’m not ready to part with but I have admitted I haven’t worn for anything up to 7 years. But I still really like them! And I am going to start that diet tomorrow… If they are still there unworn after a year, they have to go.
- Bag them up and get them to the charity shop before I change my mind. (Seriously, if I leave the bag there for more than two days I will start pulling things back out)
Needless to say not everything that goes into one of these bags is as desireable as an Ed Sheeran onsie. So a couple of years ago I checked with my local St Peter’s hospice shop about how good the quality needs to be now. I was surprised to find that they want it all! As the shop assistant said “if its no good for the shop, the rag man will have it”. What a brilliant idea.
In Bristol we have a national centre for textile recycling that collects unsold textiles from charity shops around the country. They ship lots abroad and hold regular Preloved and Vintage sales where you can buy clothes for £6 a kilo. And yes, ok, I do sometimes go and begin the whole cycle all over again! You never know, I might find a tour jacket from Ed Sheeran there.
If you ask anyone who works with those at the end of their lives whether people can choose when to die you may get some interesting answers. There will always be a tale of how someone made a herculean effort to hold on for a family member, willing themselves to hold before quietly passing away after they arrive. But you will also be told of the family who conducted a continuous vigil around an elderly person’s bed only to find that the only time there was a gap because someone popped to the toilet or to grab a cup of coffee, the patient died. Both types of stories seem to say that we do have some control. Or could it be all coincidental?
Dr Toby Campbell is reported to have said that “patients tend not to have a lot of control at the very end of their lives. But that doesn’t mean they don’t have any”. Some will want to have that special someone there whilst others may want to spare their loved ones the pain of seeing them breath their last.
When I thought about this I thought that at this moment in time, with death not lurking in the shadows, I’d be like that mythical elephant who wonders away from the herd to die alone. I feel like I’d want to be at peace and able to go when I’m ready. Much as I’d love my last sight to be that of my beloved family I feel that I’d be distressed at the pain of leaving them and saddened at their stricken faces. Better to say goodbye and embark on my last big adventure alone.
“Dying is a wild night and a new road.”
To help build my knowledge and understanding I’ve been following a number of blogs including one by the wonderful Jules who is caring for her dying partner. I am constantly amazed by the insight that bloggers give us into their lives, their experiences and their hearts. I’d like to think that the appreciation is mutual. In exchange for their openness and sharing we can offer support, understanding and information in return.
Each client I have worked with has offered a unique set of circumstances that are so different from each other. A life-limiting illness doesn’t mean everyone is the same. I can’t meet everyone so reading is a great way of gaining more understanding. Blogs offer many different themes. Some want to educate, some want to blurt out their deepest fears and some are just musing to avoid dealing with more immediate and frightening thoughts. Personally, I blog because I want to connect with other people caring for those at the end of their lives and if I can offer some helpful information along the way then that’s great too.
As a doula I have worked with a number of people who have been been aware that they have only 3 – 6 months left to live. I have also worked with people who don’t want to know how long they have left, often saying that they’d like to take each day as it comes. Many doctors are wary of giving a prognosis as they know there is so much uncertainty in how an illness progresses but they may also feel the need to forewarn patients that they may need to get their affairs in order. If pushed they will try to give the patient and his/her family some indication of whether it is days, weeks or months. But this week I met a young woman who is aware that her slow-growing inoperable tumour will probably give her 3 – 5 years of life. And it made me wonder how you make sense of this. Is it too soon to start planning the end?
I’m not sure any of us really feel we are guaranteed our three score years and ten. Sometimes it is so hard to imagine a future in which we are old whilst it is also impossible to imagine a world that doesn’t have us in it. So what would knowing you “only” have three years left mean? It may seem premature to tell friends and family. You may not feel comfortable blowing all your savings on that bucket list as you still have to budget for those years to come. Maybe the hope of a miracle cure being discovered is enhanced by the fact that three years is a long time in medical science.
But maybe it is also a mistake to think that you will have those years. Most of us know that whether we have a serious illness or not, we should live for today – carpe diem and all that! And just because you are dying of an incurable illness doesn’t mean that you wont be hit by a bus – life (and indeed death) can be cruel like that. The harsh drug regimes of many treatments are a risk in themselves: my brother nearly died of an embolism when his cancer treatment made him bed bound and a clot travelled to his lung. I’m glad to say he survived and is still with us 15 years later.
My client is struggling to come to terms with her prognosis but we are working on some of the easier, practical stuff like making a will and talking about her fears of how the illness will progress. We are working towards her accepting that death is on the horizon but it doesn’t need to dominate her every thought. Maybe this should be true for all of us.
A death cafe is a social meeting organised to enable people to talk about death and dying. I’ve wanted to go to one for over a year now but they are still relatively few and far between. They have been around for over ten years and over a 1000 have been held throughout the world. The mission of a death cafe is to remove the taboo that exists around death and to reduce fear through openness and reflection. Hence the rather stark title – euphemisms are definitely not what this movement is about!
So off I headed to my first death cafe in a small county town in the Midlands. I was surprised that there was not one nearer to me as I live in a city but I felt that it would be worth the long drive. The meeting format is prescribed by Deathcafe.com, a social franchise which post events to their website. Enter your postcode and you will find your nearest one.
The meeting was held next to the cafe in a local community centre. So tea and cake was on offer as promised. The other participants all knew each other because they meet almost weekly and have long-standing members as well as drop-ins whereas many Death Cafes are stand-alone events. They were very welcoming and the facilitator did a good job of keeping us on topic and letting everyone speak. I was impressed by the openness and honesty of those present, talking about their own experiences as well as opinions they held about death. Death cafes are not support groups for the bereaved or grieving but members still got to speak about loss they’d experienced and how it made them feel about their own deaths. It wasn’t maudlin or despairing. It just felt as natural as talking about birth and life.
I came away from the meeting feeling privileged to have spent those two hours with such open and thoughtful individuals. And I feel motivated to organise one in my own city. Just got to find a venue that isn’t phased by serving tea and cake at a Death Cafe.
I was so excited to be reading about the start of the 2016 Paralympics and was saddened to read an article about Belgian paralympian Marieke Vervoort’s decision to end her life in 2017. In Belgium assisted suicide has been legal since 2002 and even children can request this. The key words “unbearable physical suffering” sum up the underlying principles supporting this legislation and in some ways epitomise the need for it.
Marieke’s degenerative disease means that she is in constant pain and that after the 2016 Paralympics she feels that she will have completed everything on her bucket list. It does seem that she has given it every consideration and the prospect of living in constant pain and suffering is not something she wants to continue with. One can only feel compassion for her situation and admiration for her bravery in making this decision.
You can read more here: http://www.sportskeeda.com/athletics/world-champion-marieke-vervoort-considering-euthanasia