How to Live with the End in Mind: Wendy Mitchell’s Choice -- by Julia Jones

 

When John’s Campaign went to the House of Commons in March 2022 to explain why legislation is needed to ensure the right to a care supporter, we were asked who we would like to speak on our behalf. Without hesitation Nicci Gerrard and I invited Wendy Mitchell. We feel passionately that there should be ‘nothing about us without us’ but as a dementia campaign it is not always easy to find people living with the condition who feel able to describe their experience in public. Wendy was diagnosed with early onset dementia in 2014 when she was 58. At first, she sank into a deep depression but then decided that there was hope.  She would live as well as she could for as long as she could – and encourage others to do the same. Since then, thousands -- perhaps millions -- of people have been inspired by Wendy though her blog ‘Which Me Am I today?’ her books, her public appearances and her extraordinary feats such as sky diving and wing-riding, undertaken when she discovered that battling dementia had taken away her fear.

(I've removed a photo here. It was taken by a press photographer and although I believe we joint charities had permission to reproduce it, I'm not going to take the risk until I discover for sure.) 

For as long as my memory serves, I will remember watching her sitting in the front row of that committee room, tapping busily on her trusty iPad, determined to record all that was happening around her and to feel confident giving her own experience and opinion when she was asked. Which she did, of course. Wendy, living with an incurable, progressive brain disease was one of the clearest thinking people I have ever met. This is not entirely unusual in people living with dementia who are being forced to come to terms with the working (or non-working) of their own brains in ways many of us find hard to imagine. 

For as long as I am able, I won't forget sitting in a taxi with the dementia campaigner Theresa Clarke who also lived with dementia but had travelled alone from Northern Ireland to speak at the John's Campaign conference in London 2016. She told me about the days when her brain felt like soft mud and there was nothing she could do.  But when she could speak out, she did. If you have time, listen to her here. 

Wendy, like Theresa, lived alone and was fiercely independent. She too hated the days when her mind felt suffocated by thick impenetrable fog. Yet even on these worst days, Wendy did not wish to be cared for. It was slightly incongruous that we were asking her to speak in support of the Care Supporter Bill, our attempt to ensure that whenever someone  who would find it hard to advocate for themselves is in hospital or a care home – or who is frightened or confused by their situation --  they should have the legal right to a special friend or family member to reassure them or speak on their behalf. Wendy was completely certain that she never wanted to become a hospital in-patient or live in a care home. As a former NHS administrator, she spent years organising her paper work to ensure her wishes were clear, both to paramedics, doctors and her much-loved daughters, Sarah and Gemma, should the time come when she could not articulate them herself. Her refusal was definite.

Sarah & Wendy

Wendy told MPs why she supported our campaign. Firstly because if she were attending an outpatient appointment, her daughter (a nurse) would remember advice she was given, previous medications or allergies, better than she did – and also because the support of her daughter would help show that she mattered. She told MPs a recent experience. She had fallen and dislocated her wrist badly. It had been treated in A&E and then she was summoned to see a consultant.

His first words were ‘on paper you don’t need an operation as it says you have dementia, what do you need a left hand for?’ I was stunned into silence unable to find the right words, so shocked was I at was he was saying. But luckily Sarah was with me under John’s Campaign once more, and told him, then I found my words and said I needed a left hand just as much as he did.

https://johnscampaign.org.uk/post/first-hand-experience

There was a collective gasp from people in the room, MPs included but I don’t really know why they should have been surprised. This was March 2022 we had been enduring two years of pandemic restrictions, particularly harmful to people living with disabilities such as dementia and it should have been clear to the smuggest legislator that the lives and deaths and individual CHOICES of people with dementia or other disability were of very little importance when it came to policy-making. 

I’m currently participating in Module 2b, the Welsh section of the Inquiry and find myself routinely amazed by the absence of active consideration of the needs of people with dementia or other disability. People known to be at the greatest risk, people who were loved, people whose well-being should have been at the heart of policy discussion are simply not there when the evidence is scrutinised. 68% of all deaths in Wales from Covid-19 in the first months of the pandemic were deaths of people with disabilities, including dementia. Dementia remained the biggest killer of women throughout the pandemic as it is today. Many of those early deaths were not even properly recorded as care homes struggled to cope. GPs and other health professionals would not visit. Hospital admissions for people living in care homes were not facilitated. Husbands and wives, children and parents, dearest friends and loving partners were separated as if at the gate of the harshest Victorian workhouse. Sometimes the dying were offered only paracetamol. They didn't matter.

 

Many (probably most) people who live with dementia to the end, finally live and die in care homes. My mother did and I’ve written elsewhere that I believe her death was as good as it could be. Currently John’s Campaign are supporting the magazine Care Talk in its inaugural palliative care awards, an attempt to celebrate excellence in the last months of life be it at home, care home, hospice or hospital. A good death is something that must concern us all.

Wendy was not going into a care home, neither was she going to be dependent on the daughters she loved, nor would she allow her enemy, dementia, to claim ultimate victory by killing her. Her final book One Last Thing (written with Anna Wharton) sets out her arguments for death to be at the time of her own choice, for assisted dying to be legal in this country. Her argument was that the availability of help to die would allow people with incurable illness, like dementia, to live longer and better, knowing that when they had finally had enough of life, they could be helped to leave.

In February this year, Wendy Mitchell starved herself to death. It's called Voluntary Stopping Eating and Drinking (VSED) and is legal. Now I'll hand over to her to explain what she did and why.

https://whichmeamitoday.wordpress.com/2024/02/22/my-final-hug-in-a-mug/