Over the last two month I’ve been box-setting (yes, I know its not really a verb) The Walking Dead even though I’ve never been the biggest fan of stories about the undead. I’ve seen my fair share of zombie and vampire movies but i have to admit that ghost stories really spook me. And it set me to wondering why we love stories and movies about the restless dead so much?
Throughout history and in many cultures around the world there are tales and religions built on the notion that we don’t really disappear completely when we appear to have breathed our last. Last year I was on a trip to Namibia where I visited a tribe who considered themselves to be Christians but where the eternal flame within the sacred circle was kept alight to worship their ancestors because they felt they still walked amongst them. They saw no conflict in maintaining both beliefs.
I wonder if it is a response to the difficulty in letting go of the person that has died. But then why are they so horrible? In The Walking Dead everyone who becomes a zombie is instantly a killing machine with the sole focus of eating the face off everyone else. I can’t see that this is a consoling image! And ghosts are always mean. If I’m going to hang around and haunt anyone I know it will be because I love them so much that I can’t bear to go rather than that I want to frighten the bejesus out of them.
The image of the vampire in stories like the Twilight series is much more my cup of tea. Enigmatic, moody and sexy. What’s not to like?
We can only wonder at what was going through Bram Stoker’s mind when he wrote Dracula or Mary Shelley’s mind when she wrote Frankenstein. Its not like they had access to Netflix or Sky in the 1800s to stimulate their imaginations.
I think the most interesting aspect of this fascination is focusing on the point at which we move from being alive to being dead and what that means. Is it even a simple dichotomy? If a zombie has the body but not the mind of a human being does it still count as human? Clearly not in The Walking Dead as they consider it unethical to kill someone living but they’re blasting away at the zombies like it’s a video game. And ghosts have the mind of a person but only a wispy, usually white, transparent shadow of a body left. Maybe we need both mind and body to be considered alive but what about the soul? At a Death Cafe recently we had a very lively discussion about what is the essence of self: does anything we do or create or buy or say make a difference to what is at the heart of who we are? Or is all this fixed at birth and nothing we can do changes this? Opinions were diverse and strong on this!
I have talked to others about observing the death of a person and we all agreed that there is something instantly different about a body in the minutes after someone has died. I could only describe it as one minute they were there and the next minute they, well, just weren’t. Maybe this is what we subconsciously feel is the point at which the soul has left the body. And without witnessing it myself I’m not sure I would have believed it. However I would hasten to add for anyone who is worried about this that it wasn’t supernatural or spooky but rather reassuring and comforting. I now just had a body to deal with: the person I loved had gone. Well at least so far they haven’t reappeared as a zombie and I’d be delighted to get a visit from them if they decide to float by as a ghost!
This week hundreds of people and their dogs joined an elderly whippet called Walnut on his last “walk”. Like many pet-owners, recognising that Walnut was at the end of his life and making the decision to have him euthanized was a really difficult time for his owner, Mark Woods. Mark felt that it was time to let Walnut go, peacefully and without pain.
Mark had come to the decision to have Walnut put to sleep at the age of 18 years as he could see that his deteriorating health would affect his quality of life: essentially he felt that it was the kindest thing to do. This did not mean that he wouldn’t have wanted Walnut to live longer or that he was bored with looking after him. But he clearly didn’t see the point in mindlessly keeping Walnut going as long as possible regardless of how much he might suffer.
In his final days his owners made sure that he had lots of treat such as his favourite custard cream biscuits and a sneaky burger. However they also realised that he would like one last visit to his favourite beach in Newquay in Cornwall. Even though Walnut was too frail to run around they knew that just being out in the smells and sounds of the seaside would be a tonic for him. To ensure that lots of his doggie friends turned up Mark posted up on social media a call-out to come and join Walnut on his last walk. What he couldn’t have anticipated was the hundreds of people and dogs who turned up to take that last walk with Walnut.
Only a matter of hours later, Walnut died in the arms of his owner surrounded by his family. For me this represented a “good death” – in fact, probably the best possible death. To have the chance to say goodbye, to have your final treats and even for your final celebration to be when you are still alive, surrounded by your nearest and dearest must surely be a fitting end to a life well lived. It is a sad comment on our attitude to death and dying when you find yourself envious of an elderly whippet called Walnut.
On the 15th October 2016 I wrote a post about one of Leonard Cohen’s last interviews when he stated that he was “ready to die” and that he hoped “it’s not too uncomfortable”. Although he had not admitted to an illness at that time his death this week makes me wonder if he knew he was reaching the end of his life. If so, I hope that he managed to have the death he wanted and that it was comfortable and on his own terms. And I hope that talking about death in the way that he did helped him to realise this. It’s a great example of what we should all be doing.
I have a strange bucket list because I sort of wrote it before I was born! In my 30s my life had undergone some hard and challenging events and I needed to find a way of feeling positive about my achievements whilst also giving me some goals and aspirations to work towards. So I imagined myself floating around in the womb and began to write a list of what my bucket list would be from when I was born until, well, I kicked the bucket.
I wanted to live by the sea. I wanted to work abroad. I wanted to see the Pyramids, the Great Wall of China and Rome. I wanted to go whale watching, own dogs, run a road race (I finished last!), buy a house, have a professional manicure (I was 59 when this happened) and drive a Porsche. I’ve added to it over the years (yes, it is actually written down) – I wanted to play in the World Series of Poker in Las Vegas and it might surprise you to know that this one is ticked!
But interestingly my list wasn’t all about adventures and things. One of my first entries was “to have a best friend”. I knew that to achieve this would be one of the most important factors to my happiness and joy. I wanted to get married – this was partly an accepted aspiration for most of my generation but one that would also let me know that I would love and be loved enough for us to tell the world in a public ceremony. I wanted to have a job that made a real difference to other people’s lives. And I wanted to be a mom. I really, really wanted to be a mom. And now I’ve added that I want to be a Grandma.
When I look at my list of all the things that I feel would show I’d lived a good life I realised I had the balance right. People and relationships are the sign of a life well lived. Adventures and material things are the supporting act.
Five Wishes is a way of listing some of the things you might want at the end of your life. It is coordinated by Aging with Dignity, an American nonprofit organisation and has become known as the “living will with heart and soul”. It is reported to have helped literally millions of people plan for the quality of care at the end of life and was inspired by the work that Mother Teresa did with the dying. In the UK we would refer to this as an Advance Directive and Statement of Wishes.
Five Wishes encompasses personal, emotional and spiritual needs as well as medical ones and is legally accepted in many parts of the United States. The organisers hold workshops to start this process although anyone can do it. In the workshops they will advocate that you work in pencil to emphasise that these plans can be changed at any time before they are signed. Not forgetting that you can rewrite, change or revoke part or all of them after that if you’d like to.
Wish One identifies the person you want to make health care decisions for you if you can’t. You may have already done this through a Lasting Power of Attorney (LPA) but it helps to have all these things in one place. If you don’t have someone nominated then these decisions will be made by the medical staff who are required to act in your best interests. They may talk to your next of kin but the final decision rests with the doctors.
Wish Two is to state what kinds of medical treatment you want or don’t want. In the UK you cannot demand treatment but you can suggest what you prefer. But you can absolutely say what you don’t want. However be very careful not to have conflicting statements as by default doctors will choose the more aggressive option. So if you say you don’t want any interventions, it will be confusing if you then say you want to be tube fed.
Wish Three is about how comfortable you want to be. This can include things like warmth, light, music, hair brushing etc.
Wish Four is how you want people to treat you: Would I like my hand held? Would i like to be alone sometimes? Do I want spiritual support? Would I like to be read to? This could include who would treat you – would you be in a hospice or at home.
Wish Five is what you would want your loved ones to know. This can be as profound as “I am not scared of dying” or as basic as “forgive me for lying about crashing your car”. It might also specify whether you want to be cremated or buried. It might also be an opportunity to tell them that they are loved.
If you choose to complete this process formally you will need to ensure it is signed and witnessed and that people know where it is. Even if you don’t want to write all this down there is a lot of food for thought. After all, if we can’t have our own way when we’re dying, when can we?
When life hits you hard how do you respond? When life hits someone else hard, how do you respond? I’m one of those people whose first response in the face of adversity is to vent – I talk to my friends and family and I may seem to be “in touch” with my emotions and willing to share my thoughts. But this is just my first phase. Quite quickly I become aware that I may be boring the *rse off everyone and I also start becoming reflective and withdrawn. I need to quickly move into presenting my “coping face”. My father brought me up to be independent and self-reliant – his view was always to do a favour, not receive one. God forbid you might appear needy. Because of this, when I do ask for help, I probably do it in a slightly surly way, qualifying it with “its not a problem if you can’t” and “no, don’t worry I’ll manage” before the person I’m asking has a chance to answer. I think that the truth is I think its weak to ask for help. How stupid is this?
Society is built on the ties that bind us together. Whether through friendship, family or work our lives are built on relationships. And what feeds those relationships is cooperation, mutual support and obligation. Without these society is going to start to fall apart. If we don’t ask for, and receive support what will happen to our relationships? We’ve all had one of those friends who seems to always be in crisis and needing (yet another) favour. But doesn’t it also make us feel good (and maybe a little superior) when we can do that favour? And for every friend like that don’t we also know someone who is always “fine” no matter what life throws at them? Even though we know they’re not fine?
“From each according to his ability, to each according to his needs” – Karl Marx
People are different and different people need different types of support. And some people can give more than others. For some a neighbour popping in every day is too much. For others anything short of a family member moving into the spare room is not enough. I remember when my partner was ill, I came home from a long stint at the hospital to find a friend had used her key to go in and clean up my kitchen, leaving some soup on the stove and some flowers on the table. If she’d asked me I’d have said “Oh no, that’s too much, I’ll be fine” but faced with a fait accompli I accepted gracefully (and somewhat tearfully, truth be told). It showed how well she knew me that this is how she chose to support me.
It sometimes saddened me that having been in a challenging situation for many years people didn’t ask me to help out. They knew I already had so much on my plate. Now I’m more available they don’t seem to be able to overcome the habit of not asking. Maybe that’s why I’m drawn to my work as a death doula. If I can’t offer that help and support to those I know maybe I can do it for others at the ends of their lives. And maybe I’ve got some making up to do.
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.