Wendy Mitchell's open, warm-hearted approach to life is hard to resist. She often speaks for others like her who are living with early-onset Alzheimer's disease and the difficulties posed by the disease on a daily basis. Here's a post she wrote this week on her blog whichmeamitoday and kindly gave me permission to republish on this humble blog.
Some people ask me how can I possibly do all the things I do on my own when I have dementia, so today I thought I’d give you the dementia view of the trip to speak at an event in Birmingham.
I received the invite some months ago. On the day an invite is confirmed, I start printing: printing the picture of the hotel, printing the picture of the venue, printing the picture of anywhere that needs to look familiar on the day so I don’t become anxious. If I’ve got a picture, I have something familiar to find.
So, to the morning I leave.
I have to have a taxi, as the buses don’t start running in the village until later, but I’m ready and waiting ages before the arrival time as I worry it will be late. I stand at the window watching out for the familiar car. If the time approaches and there’s no sign, I ring them. They know I’ll ring them and don’t get annoyed as they know I have dementia and I’ve explained why I panic as the time approaches.
The same anxiety lasts until I reach my destination… will the train be delayed and throw me off kilter? I always have to have a plan B worked out, so that I don’t panic if I miss my connection. That’s why I always take pictures – it helps me relax. Seeing the morning sun always helps.
The Train Journey
The third train arrives on the platform and it’s very busy. I have to have my bag near but there’s no room, so I have to risk leaving it in the luggage rack… there’s someone in my pre-booked seat, I need to sit by the window so I can see where I am and feel settled. They’re nice on this occasion and move to the aisle so I can have my seat. They move without a sigh or a tut, so I feel happy.
I set one alarm to remind me where to get off and another to remember my suitcase as I can’t have it next to me, because by the time I get to Birmingham, if I don’t have it next to me, I’ll have forgotten I have one with me. So I arrive in Birmingham, the station I know I hate due to its vastness and many exits leading to many places. I wander around for a while, calming my fears, pushing them into their box; there’s chaos as many trains have been cancelled and journeys disrupted, which can only lead to one thing – impatient people, fraught workers being hassled from all directions. I stand against a wall and watch the chaos around and try to work out what to do. I wait until I see a smiley face and ask which way out is the best way out…
Finding the hotel
Now the next biggy: the busy streets and unfamiliar surroundings – which way to go for the ‘5 minute’ walk to the hotel? I find a nice friendly café – Waterstones or Caffé Nero is always a good bet. I take photos while I’m trying to spot one – taking photos always make me feel calm.
I find a Waterstones and sit with a coffee looking at my App trying to work out the directions to the hotel, but the internet speed is as slow as my brain – something I wasn’t expecting in such a big city as Birmingham. The people I’d asked in the street didn’t know, but there’s a lull in the queue for the three, smiley faced staff at the counter, so I ask if they’ve any idea which way to turn out of the shop for the street I’m looking for. They don’t, but they hazard a guess and really do try and help.
I thought, the internet signal would be brilliant here, so my phone, which I rely on, but it is rubbish even outside and struggling to help. Eventually, after what seems like an age, my walking App says to turn left and head for St Martins church but it doesn’t look right compared to the printed map I have. I see a community policemen with a smiley face. He knows the hotel and says the app is taking me the wrong way.
He says someone else had asked him for the same directions recently and explains perfectly – I’m relaxed. He assures me it’s not that far – a 10-minute walk but in one direction…
I continue to walk, looking all around for the building on the picture when all of a sudden, in the distance, I see the big letters of the hotel lit up on the skyline. I’m happy as I follow the brightly lit sign in the sky.
The smiley faces in reception are comforting. I find my room in the dimly lit corridor and make a cuppa… ahhhhh, that’s better.
Then I think of the morning – how do I do this journey in reverse back to the station? So I decide to walk back into the city to make sure I know my way back in the morning to the station as I have to catch another train, the short 10-minute ride to the university. I make notes in my phone as I’m finding landmarks. Sirens startle me – I find my earplugs…
I find the ramp that the policemen had sent me down again – I then feel happy and take a walk up one side and down the other of the Christmas market, making sure I don’t detour down a side street, otherwise I’ll be lost again...
I love the lights and jollyness of all the traders and take more photos… But it’ll be dark soon, so I have to stop and make my way back. I can’t ‘see’ in the distance in the dark – everything closes in and becomes unfamiliar. I buy my sandwich and snacks for the evening as I don’t like leaving my room once it gets dark, so the hotel restaurant is out of bounds and I’m more relaxed if I stay in my room.
I’ve got a lovely view of the road below, so I can watch the chaos of the traffic from the calmness of my room. It’s 4pm, I have my supply of tea and milk in my suitcase, (there’s never enough in the room). I settle down with the telly – just the bedside light on as I can’t work out how to make the lights work. I leave one curtain open, otherwise when I wake up the many times in the night as I do, I won’t be able to see where I am or which direction to walk in this unfamiliar room… so all Is well in the world until the morning when it all starts again.
After the usual wake–sleep–wake–sleep night, I finally get up at 5am to give me enough time for my brain to engage to get ready for breakfast at 7. It is only then that I realise why I couldn’t work out the lights the night before – a shadow fell on the white light switches on a white wall… And now to work out how the shower…!
The Big Question
Why do I put myself through all this? Well, what’s the alternative? Not to go anywhere and sit at home deteriorating quickly? No, I don’t think so…
Many thanks to Wendy Mitchell was diagnosed with early onset Alzheimer’s on the 31st July 2014. She is 58, has two daughters and lives happily alone in Yorkshire. She started the www.whichmeamitoday.wordpress.com blog to "allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.”
I have a good friend, 92 last birthday. To my dismay, the week before last, I got a call to tell me she had been in hospital for a couple of days, her oxygen levels were exceptionally low and she was undoubtedly very ill. I was really anxious for her and also sad that I hadn't known.
I visited her in the hospital that evening. It was a very pastel scene. She was in a six bay ward, sharing the space with five white-haired ladies, very of-their-time, in pale pink nighties and bed jackets. Two patients had dementia, one of whom was being attended to by a family member.
The other, very confused, asked me repeatedly if the bed she was coming and going from, was hers? Was it somewhere she should be? "How do I know it's mine?" she asked bleakly. Despite my reassurances, it was clear that she was marooned in an environment with few landmarks and no means of navigating her experience. At the far end of the bay, a lady in a chair next to her bed stared out dolefully and bored.
Then I spotted my friend, sitting on her bed, her hands and nose adorned with the inevitable cannulas and drips, but absolutely resplendent in a pair of leopard skin, satin pyjamas. Yes, leopard skin. And satin.
Now that's style – AND for a nonagenarian, who might not even make it through. I admired them enthusiastically, complimenting her on such an audacious and somehow defiant choice of hospital bed wear. All the more amazing, given that she would have had to pack her bag when she was alone and trying to cope with the endless and paralysing nosebleed that had precipitated her hospital stay.
She laughed, saying "Oh yes! a young doctor was saying something similar earlier and I said to him, 'this is NOTHING darling, – usually I wear a bit of bling as well!'"
PS She made it through and went home yesterday, full of praise for the hospital staff and her whole experience.
Five years of art school training as a textile designer seems like a very long time ago now.
Research for the 1960s Many Happy Returns cards continues apace. This gripping Pathé film from 1968 about Sandersons in Uxbridge took me into a rich reminiscence – not just about designing fabrics but the smell of the print room at Hornsey in a disused primary school in Tottenham, getting to the cinema in time to see the short before the 'main feature' and supplementing a meagre grant by making curtains for my landlady!
A bit abitrary on a site about older people perhaps you might say, but I hope you may find the old designs – and technology, as intriguing as I did (not to mention the music).