This week is National Hospice Week and there will be lots of events around the country highlighting the work of hospices and raising funds. I’m a bit disappointed in the Bristol area to find nothing on this on the internet so maybe next year I will get involved and help to make something happen. I know that its easy to sit around and criticise others for not doing stuff without actually doing something yourself! And, in fairness, St Peter’s Hospice maintains a year round high profile.
So what does the word hospice mean to you? For some it can mean accepting that you are at the end of your life. Or even that you are dying. But I was pleasantly surprised to read the words of 35 year old Lisa Emery who says the opposite. For her the word hospice means “living”. She says:
“I’ve been living since I got here”
Every day she gets up and brushes her teeth and washes her face. In other words living a normal life as much as she can and not pre-empting death by giving up and not bothering with the small stuff. After all the small stuff is what forms most of our lives. As Dame Cicely Saunders, the founder of the modern hospice movement says:
“to live until you die”.
So what would your perfect hospice look like? Mine would have an open fire, lots of dogs, my own big screen tv with unlimited boxsets, piles of Cadburys chocolate (none of that posh stuff) and a soft bed with lots of cushions. I’d be able to eat what I want, when I want. And there’d be a light atmosphere with humour and laughter. These things would help to tether me in the here and now rather than focus entirely on the future and whats lurking there, waiting for me. In fact a lot like this Dublin hospice:
“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.