Valerie Bevan, 69, was diagnosed with multiple sclerosis 26 years ago and now only has movement in her head and neck. She is a day patient at Sue Ryder Manorlands Hospice where her daughter Harriet works as a Community Fundraiser. This is her story, which she has agreed to share in support of our A Better Death campaign.
I was always a very active woman: keen runner, dog walker, strong swimmer – we even had a mini gym in our house.
The trouble started in 1993. I was involved in a very traumatic car crash that, luckily, left me with no more than a stiff neck; however, in the few weeks that followed, I began to experience some very unusual sensations. The doctor booked me an MRI scan which revealed that I was in the early stages of multiple sclerosis (MS).
I was left dumbfounded. You never think you’ll be given such a life-altering diagnosis and at the time I had no idea how much it would affect me; how quickly or painfully. I was scared. The first thing I thought about was my children: how would I tell them? And that’s when I made the decision to tell nobody – just my husband.
My illness's progression
I lived relatively problem free for the next ten years. The problems started to really show in 2004 when I could no longer walk without a cane and had to have a stair lift installed in the house. By 2007, my husband and I had divorced, and I simply couldn’t cope anymore on my own, so decided to tell both my children, Harriet and James, what was wrong.
Harriet made the decision to stay at home to help look after me. I had to extend the ground floor to build a bedroom and accessible wet room. By 2012, I could no longer drive or walk and was confined to a wheelchair for 12 hours a day, but I had just enough mobility left to allow me to go on what I knew would be my last holiday abroad – confined to a wheelchair but a holiday none the less.
Now, my manual wheelchair has been replaced with an electric one, which I can no longer control myself, and all my meals have to be spoon fed, but – worst of all – I can’t hug or hold hands with anyone; not even Isobel, my two-year-old granddaughter.
Despite my circumstance, I don’t let it beat me. I try my best to stay as positive as I can. I’ve managed to stay at home and, although the illness may have stripped me of all my freedom and movement, the choices I make are still mine. I decide how I want to live and be cared for, and that’s what counts.
Getting the right support and help has been "a lifeline"
The nature of this type of MS means that my symptoms and mobility get gradually worse over time. I can no longer move any part of my body except for my head and neck. My speech is going and my sight isn’t what it used to be.
I have been looked after by the team at Sue Ryder Manorlands for years now and the neurological nurse Tina has been nothing short of a godsend.
The moment I lost movement in my hands was a huge blow; the one hobby I had left was to play Scrabble on my iPad – now I literally have nothing. Manorlands put me in contact with a communications company nearby who installed a device that I control with a button I tap with my head. This enabled me to work the TV and make phone calls; to me, it’s a lifeline.
"I thought I was a lost cause but Sue Ryder have altered my outlook"
It’s been great for me to know that Harriet has people to talk to if she’s worried or concerned about me. Equally, I know that, if I ask for help, someone will either call or visit me as soon as they can – usually the same day!
I attend mindfulness sessions once a week with my carers, and also see the complementary therapy team for a head and neck massage to relieve the building tension and pain I get from spending so many hours in my wheelchair.
Manorlands has provided me with breathing apparatus, and speech and language therapy as I start to lose my voice. We are also looking at different ways to communicate that I can get used to before I lose my voice completely.
I owe so much to Manorlands. I thought I was a bit of a lost cause; I knew what was happening was irreversible – a steady decline, gradually losing my freedom and independence – but Sue Ryder have altered my outlook. My life may not be perfect, but I’m living it the best way I can with the right support and help.
My final wishes
We all know we will die at some point, but I know my time will probably be sooner than it would have been otherwise, and we only get once chance to get it right.
My original wish was to die in my own home surrounded by the people I love and of course my lovely dog Boo. But, having seen how well my mum was looked after at Manorlands and remembering the peace of mind it gave me knowing she was in the best place possible receiving the highest levels of care, I would like to think that I could have as good a death as she did there at the hospice.
I can bring my personal things, have visitors whenever I want and, of course, my dog can be with me too.
I’m not scared to die; of course I’ll be sad to leave my loved ones behind, but it’s all part of the process of life.
Why I want to end my life in a hospice
There is no comparison between a hospital and a hospice. I appreciate our hospitals do a wonderful job but, in my mind, they aren’t a place to die.
When it comes to those final days and even minutes of life, a hospice or your own home will always be the preferred choice. A hospice can give you the option to make your own decisions about the care you receive so your wishes can be met. It gives you the time and peace of mind you need to make everything less frightening and as personal as possible.
The nurses get to know you and your family, and you are able to die in a pain free, peaceful and dignified way surrounded by those that love you. You simply can’t get that in a hospital on a busy ward with a curtain separating you from the rest of the world.
I hope that, when my time comes in that final minute, I have all those wishes met to allow me to have a good death that my family can be at peace with, so they can grieve and go on with their lives, knowing it went as well as it possibly could.
"Talking to your loved ones about your final wishes is one of the most important conversations you can have"
I’d say that talking to your loved ones about what you want when you die is one of the most important conversations you could have, but not many people actually have it!
It’s not just for my benefit; I want to be able to give the ones I’m leaving behind the reassurance and peace of mind to know that everything I wanted or wished for was put in place, so there’s no last minute panic or worry.
I know that, when the time comes, I’ll be happy and, although my family and friends will be sad, they will always know that this is what I wanted and can be at peace with that themselves.
Not all of us will have the opportunity to plan our death and I feel that, if you can, you should.
Our useful Sue Ryder 'A Better Death' guide can help you discuss dying and plan for the end of life that you want.
Day hospice patient
Valerie, who has multiple sclerosis, attends day services at our Sue Ryder Manorlands Hospice in West Yorkshire, where her daughter Harriet also works as a Community Fundraiser.