On Thursday I had the honour of representing the Alzheimer's Research Trust at a lecture entitled Living with Dementia organised by the Wellcome Collection. It was part of a four part series on ageing.
The panel consisted of June Andrews Director (Dementia Services Development Centre, University of Stirling), Clive Ballard (Wolfson Centre for Age-Related Diseases, King's College London), Fiona Phillips (TV broadcaster and journalist) and some unknown bod named Susie Hewer (Champion and carer, Alzheimer’s Research Trust)!!!! It was chaired by Claudia Hammond.
The stage is set. This was the calm before the storm.
When we went into the room I was quite shocked to see the room was full with no spare seats. Mike had managed to come with me even though he couldn't walk for long and it was reassuring to know he was in the audience.
Here we have Liz Winder in the foreground who organised the event and was very helpful in our arrangements and Claudia Hammond to the right.
I'm amazed to see that June (left) and Fiona (right) seem to be listening to what I'm saying as I'm sure I must have been talking jibberish at this stage!
We each had a 10 minute slot to talk about our chosen subject. I was first to speak and naturally I told mum's story. Each time I tell it I add or subtract different things and I am always conscious that sometimes a painful memory will surface and I'll cry. I'd made some notes to try and focus myself so that didn't happen but it was still very draining. People have asked me why I am still campaigning 5 years after her death. Is it perhaps to keep her memory alive? No, it is simply because I was so horrified by the disease and the effect it had on her that I just have to try to raise awareness and raise money for research to put an end to this dreadful disease.
I hope I got the salient points across - I did notice a lot of people nodding in agreement on occasion which is always a good sign.
Next to speak was Clive who spoke very eloquently about dementia research. He wasn't remotely nerdy and was very easy to understand as he spoke in layman's terms.
Then it was Fiona who has had a great deal of experience of Alzheimer's as not only did her mother suffer from it (starting in her mid 50s) but her father is currently gripped by the disease. Last year she made a documentary about her father's condition entitled Mum, Dad, Alzheimer's & Me - My Story which was very well presented and gave an excellent insight into the reality of living with the disease. Last week she updated the story in a further documentary entitled My Family and Alzheimer's in which she was clearly angry at the lack of progress made in support for carers and funding for research. She is vociferous in her campaign to improve the situation and is using her celebrity status to excellent effect to shame the government into action You Go Girl!.
Last but certainly not least was June and what a charismatic speaker she was. She had the whole audience spellbound.
She gave practical suggestions on how to improve the lives of carers and suffers alike. One thing she said that really struck a chord with me was that people in dementia homes rarely have access to the outside world. As exposure to daylight affects our natural body rhythms of sleep and wakefulness, it explains why so many people with dementia do not sleep at night. It was so glaringly obvious when it's pointed out that I wondered how on earth I hadn't thought of it before.
A tireless campaigner, she has been instrumental in producing a marvellous leaflet entitled '10 Helpful Hints for Carers'.
After we had all done our speeches Claudia opened the floor to questions and the staff went around with a roving microphone. Several people said that it had helped to hear from us as it is very isolating being a carer as I know only too well. It was a fantastic audience with a great mix of age groups - the Wellcome Collection in situated right in the heart of University land so attracts many students.
The session ended after 1.5 hours and we adjourned to the bar so that people could chat to us in an informal setting. I was amazed that several people wanted to speak to me specifically. One young lady in particular had been very brave in speaking at the meeting. Her father, who is severely demented, has just gone into respite care for a week and she spoke about feeling guilty about feeling relieved that she had a break from caring for him. She thanked me for raising this (I suffered from terrible bouts of guilt when mum finally went into a nursing home) and I remembered how much I would have liked to hear somebody tell me that it was a natural feeling. I gave her my email address in case she needed to talk to someone who understands.
Another lady thanked me and told me about her mum, again severely demented but really very young. She organises musical sessions involving people with dementia (including her mum) and students from the Royal College of Music and she has said she'll let me know when they are having an event so I can go along and see what they are doing.
An interesting request came from a young lady who is writing a screen play in which there is a character suffering from dementia and she asked if she might write to me to check the details. Although it is not a central character, she wanted to make sure she got the details correct.
I also had a nice surprise when Tim from the Alzheimer's Research Trust came and introduced himself at the end. Although we've spoken on the phone many times, we had never actually met before and it's lovely to put a face to the voice at last!
Although this sort of event is emotionally draining, I also found it very uplifting to think that by speaking out I might have helped someone.
Before the session, Mike and I had a chance to explore some of the current exhibitions, the most striking of which was entitled 'Medicine Man'.
What an amazing collection, all concerning medicine and health - Henry Wellcome's paintings, masks, prints, photographs, metal instruments, artificial limbs, votive offerings, skeletons and much, much more.
It was fascinating and horrifying at the same time. There was a warning outside that the exhibition contained human remains so I was prepared. I found the Chinese torture chair quite shocking and the mummified body with its hands and feet bound really upset me.
I would love to go back and spend time there to learn more about Henry Wellcome who was obviously a very interesting man.