17th April 2015


Dying Matters ( A speech written for the Dying Matters Awareness conference in Evesham May 9, 2013)

My name is Louise and I am a patient at St Richard’s. I have lived with my very unusual smooth muscle wasting diseases for many years and they have resulted in me having bladder and bowel failure. I do not know when my status changed but it is generally agreed that I am now terminal.

Whilst my bladder causes me little distress, my bowel makes me ill and is a lot more difficult to manage. Things came to a head 18 months ago when my pain became intolerable and I felt overwhelmed and frightened. Fortunately I was referred to St Richard’s and everything changed for the better. As an in-patient my pain was controlled, I received excellent care and my family and I received lots of support.

I cannot speak for everyone obviously but for me, the worst part of being ill or dying is the worry I cause the people I love. I have always felt very guilty that I make them sad and I find the thought of their grief almost intolerable. I find talking about my death very difficult and I could never have event tried to do this without the wonderful support that I have had from the hospice.

When I was discharged I was allocated the best social worker in the world and with her support I have been able to write letters and prepare my funeral. Initially I did these to try and help my family but interestingly as time has gone on I have found a lot of solace in this and now I write to someone virtually every day. It may be thanking a friend for a lovely lunch or my husband for bringing me some flowers and the only difference between these and other letters is that these are stored under my bed for after my death. Everyone will think: ‘Goodness, she never shut up when she was alive, and she’s still going on now!”

I hope that they will help, I think that they will.

My mum died last September, which was obviously dreadful and I felt for myself real grief. This has obviously made things feel much worse and unsurprisingly, my family are now doing everything to try to stop me from dying. This maybe brilliant but at the risk of sounding ungrateful it can feel almost suffocating as they always seem to be telling me off. I apparently do too much, I don’t have enough care that my husband should give up the job he enjoys. They want me to move house and never be on my own but, aside from the impossibility of these ideas, I would hate this because I value my independence too much.

If there is one thing I know it is that people like me want to live my life as fully as possible. I cannot stop doing the things I value, such as days like today, and I really believe that this is my prerogative. In fact, I believe very strongly that this is my fundamental right as a human being.

I don’t want to upset anyone and so I try and walk a tightrope of compromise. This includes turning my house into an old peoples’ home, and pushing the most hideous shopper trolley in Worcestershire. The sad thing is once you get your head around using them, they are actually fantastic and they enable me to do things that would otherwise be an impossibility.

I feel the same about the practical help I receive such as that provided by bath nurses, district nurses and my GP. But it does take a lot of work for me to accept this because, despite everyone’s best efforts, I sometimes feel very degraded. I am after all a grown woman and I don’t know how to feel great about someone giving me a shower. I am very grateful for all my care but obviously I’d much rather be like everyone else and be able to do this for myself.

Unfortunately I’ve recently become more unwell and I’m working with the best palliative care doctor ever to come up with some answers. Together we are working to come up with new management plans such as increasing my medicines and my going to day hospice. This will benefit everyone as, not only does it help me, but it also takes away some of the stress for my family. I still cannot alas, stop them from worrying about my symptoms and unfortunately, the fact I’m always falling over doesn’t help. So I’m going to wear an alarm. I’ll hate this and sometimes being sick feels very expensive, but the payoff of being loved is worth more than a little personal distress.

Dr Simon is great because he not only understands all the difficult elements of my life; he also understands that I sometimes feel as though I have no control. I would never want any control over my family but I do wish that I had some control over my body. Despite everyone’s best efforts it continues to fail me and I cannot stop my illnesses’ progression.

I was recently sorting out some photographs and when the district nurse came to do my dressings I showed them to her. Her reaction devastated me. I am sure she would be mortified about this if she knew, but she said:

“Good God Louise, this was only taken 4 years ago! I wouldn’t have recognised you”

I subsequently felt not only embarrassed, but also ashamed and I thought to myself, ‘Goodness what do people think when they see me now?’

Rationally I know that I shouldn’t care about what other people think, but so much emphasis is placed on having a perfect body or, if you are a woman, on being beautiful that I just can’t help it. Just a glance at the media, with all its images and it becomes apparent that this is exactly what we are supposed to aspire to. I don’t want to be beautiful but I would like to look ‘normal’. I am still in her somewhere, here in a body that now feels alien to me. I’ve never been a beautiful woman but at least I looked like everyone else and I’d be untruthful if I said I didn’t care about it.
I don’t just feel as though I’ve lost control over my body, I feel that to a degree, I’ve lost control over my life too. Decisions are sometimes taken out of my hands and I can feel stupid, as I don’t always understand what’s going on around me. Things happen which I know are well meant but they make me feel as though I am no longer a proper person.

This is where my hospice is so great because they give this back to me. At the hospice I feel – I know- that what I think matters. I can be myself and I don’t have to worry about what people think and I know that on-one will judge me or be unkind. They don’t see me as a sick person they see me, Louise and I cannot express what a relief that is.

Although I am a practicing Catholic, I have always thought that the Buddhist idea of life being an educative journey to be a really interesting concept. My life’s journey has taught me that, whether I live for 5 days, 5 weeks or 5 years, whatever time I have it is very important.

If I were to say that I’m not afraid of dying I would be lying but the knowledge that all plans going well, I will die comfortably in the hospice is hugely comforting. I know that my family will be well supported and that I will be allowed to die. For many people active treatment, such as resuscitation, is absolutely right, but it is not right for me. I hope that I will die with the dignity that I know the hospice will give me.

I hope that these thoughts have given you an insight into my life and that this is helpful in someway.

Today’s seminar is called Dying Matters and I believe that it really does. I hope that little insignificant things, such as my talk, illustrate this and that together we really can challenge society’s last taboo. Dying may not be an easy supper-time conversation, it is much easier to discuss treatment and cures, yet it is death that unites humanity, as it is the one certainty that is common to us all.

I believe that God answers prayers and my prayer is that my life and death really willmatter and that someone, somewhere, will benefit because of it. This will not only give it meaning but will also help to make sense of something that can sometimes feel incomprehensible.

Thank you for your patience and time.