My dementia story
Wendy Mitchell’s speech to MPs at our event in Parliament on 9 March 2022, ‘Guaranteeing the right to maintain contact’
My name is Wendy Mitchell and I’m living with dementia. Over Christmas, I broke and dislocated my wrist badly. It once again showed me the importance of John’s Campaign when having to access the NHS.
After the initial treatment in A&E, the Consultant rang my daughter to ask for us to come in and discuss the operation. 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.
From what the next doctor said, if they hadn’t operated, arthritis would have set into that wrist very quickly and made it all but useless and although I won’t regain the movement I had, it is a lot better than if they’d done nothing as the first suggested. It would have made me reliant on social care far quicker than necessary.
Also its so important for John’s Campaign to be followed in every healthcare setting and for someone to be allowed to be with the person with dementia. GPs, care homes, any setting where a person with dementia has to go.
Wendy speaking at our event in Parliament in March 2022 © PA Wire, Stefan Rousseau
Something so simple. Yes, I know Covid has put extreme pressure on the NHS but not allowing someone else to be there would lead to even more pressure – as we don’t feel comfortable, we then turn into ‘challenging patients’ and we give the wrong answers to some important questions just to shut people up.
My daughter mentioned loads of things to me that I have no recollection of, like making sure I keep my shoulder and elbow moving as well as my fingers otherwise they’ll seize up. If I’d have been alone, how much would have gone by and the words left floating in the hospital room instead of in my head?
For some unknown reason, I’d forget, each time when asked, that I had an allergy to something – I can’t remember now but Sarah was there to correct me. They asked me and if alone, I would simply have said no and they’d continue with their questions, instead of Sarah correcting me each time and then them giving me a red wrist band to highlight they had to be careful – that could be so dangerous.
I’m lucky, I’ve developed ways to remember some of what’s being said, but even I missed so much. Someone left alone, like my friend, whose wife was refused entry. His wife was rung and called in at 2am because he was, in their words, ‘becoming violent’ – of course he was, his wife wasn’t there to speak for him, to give him a voice he no longer had.
But so many now are refusing admission to supporters even at the entrance, as was the case with my friend. Even mine said ‘only patients allowed’ but as soon as we mentioned John’s Campaign, Sarah was allowed to be with me. But how many others would not have known to challenge, not had the knowledge, the confidence to challenge someone they see as ‘being in authority’. I was much happier, much calmer and much more content in the knowledge that Sarah was there.
I’ve said it so many times, I’m very lucky to be in the position I am; to be resourceful, to challenge, to have confidence and to have the comforting thought that my daughters will always do the same. But how many others have been refused the company of a loved one. I could recite many true stories to you of those who have suffered the consequence. So many hospitals report themselves as being dementia friendly, but that’s not enough, we have to have your help for John’s Campaign to become law.
Wendy Mitchell