We have been travelling, as most of you know, for a few weeks in the UK and with a quick trip to Paris, Milan and Lake Como thrown in! Th longest we stayed in one hotel was four nights, and for two of those days, we travelled some distance for me to attend events in Oxford, so it felt like that was another ‘weekend’ anyway! Some of our time has been pure holiday, some meeting new and old friends, and some attending or speaking at events about dementia. The pen ultimate experience was my joint event with Shibley Rahman, for the pre release of our impending books on dementia.
This blog is long and rather rambling and a little all over the place, as I have been attempting to write it as we were travelling, then have spent more time on over the last two weeks, so I’m not sure it even makes sense. Anyway, you will get the gist of our hectic six weeks, and realise that my BUB’s idea of seeing it as 17 weekends over a period of 6 weeks, is the easiest way to view it!
The picture above is of Shibley and I at the event about our books, with the esteemed Beth Britton, who generously agreed to introduce us and run the proceedings on the day. She is a wonderful friend and colleague whom I love and respect greatly, and this picture, whilst I love it, makes it look as if Shibley and I are more expectant than Beth, who really is expecting her first baby!
The six weeks away were an incredible whirlwind, lots of highs and a few rock bottom lows, but as the Founder and Publisher of NUVO magazine, Pasquale Cusanho’s Italian mamma said to him when he was a child, “Life is like a wheel. One day you are at the top and one day you are at the bottom. When you are at the top, never forget how it felt at the bottom.”
Living with dementia means there are plenty times it feels like you are at the bottom of that wheel of life, and certainly when we were in Milan it was as close to the lowest part of the wheel of our trip. But to has it has not been awesome for much of the time would be wrong, and we have had so many highlights they have made up for the lows.
On the trip home, I attempted to recount our many experiences throughout these few weeks, and although I won’t write about everything, I do feel quite privileged we have been able to afford to go way again. Yes, we have worked hard all of our lives and are both quite frugal and good at saving, but still, there are many not lucky enough to have a job. I was taught to spend a penny, and at the same time save two, and this has stood me well over the years. I think we need to be self sufficient, to pay our bills on time, to live up to what we have promised to do, and to treat people with respect.
On that note, I do not support that we should treat others as we would want to be treated, as we are all different, and what is respectful or works for me, won’t work for all others. This old saying very much flies in the face of Person Centred Care.
Although not I was not taught this at home, I believe in fair, and even in an argument, or a sales or business pitch, it should be a win-win for all parties.
We had a lot of laughs, and were ultimately able to make light of some of the tougher emotional stuff related to dementia. It is not my fault Larry is in our life, and not always easy to cope with ‘him’, but we do find laughing helps a lot. Sometimes this happens, after tears and anger, but for now, we are still managing to find our way back to humour and acceptance.
The best advice I feel a person with dementia newly diagnosed would be helped the most with is this;
Don’t die upon the diagnosis of dementia
And also, do reject the Prescribed Disengagement still being dished out by almost everyone to us upon diagnosis.
We all need to live every day as if it is our last, just in case it is; after all, we all live until we die, and being born is also a death sentence! Being able to stay more positive is helped by LIVING, not necessarily living well or even living better than someone else with dementia. It is after all, our own unique experience, and some people will experience more anguish than others, some are more naturally negative as opposed to positive in the way they see things.
Back to the last six weeks, the places where we were almost exclusively on holidays were Paris, Lake Como, Milan, the Lakes District, and Northampton, including the Grand Prix at Silverstone.
In chronological order (because one of my readers has asked me to write about it) we stopped over for two days and nights in Dubai, and amazing place although it was 50 degrees Celsius, so rather hot! London was the next pit stop, then Shaftesbury and Gillingham, Bristol, back to London, Euro star train to Paris, night train to Lake Como, back to Milan, then a flight to London where we picked up a car and drove to Durham. From there we went to Edinburgh, Glasgow and Stirling, then down to the Lakes District before heading to Northampton. This was the longest stay, as we had the Grand Prix, a number dinners and coffees with Pete’s family still living there.
I also caught the train to Birmingham from there, and on two days where we drove to Oxford for dementia events before going back to London. After the pre release book launch, we made a quick trip down to Uckbridge, to visit friends of mine who moved there from Australia and have lived at Herstmonceux for almost 25 years, and more online friends at Robertsbridge, where I also had a coffee meeting with an academic who lives near by about s project I am considering. Having a very detailed itinerary, and taking lots of notes has been the only way for me to keep up, although this trip, I have not been able to blog daily due to changes but as no-one died over this, it is not really a problem.
Even during these parts of the holiday, we were often meeting people who work in the dementia sector, or people living with dementia and their supporters, or I was hosting a DAI Board meeting or other online event. I had the chance to meet up with a lot of people I have known online, some for as long as I have been blogging, a part of the trip I really loved. Online friends are just the same as having Pen Pals (find link from blog).
Meeting Nicholas, Peter and Sian, Christine and Alison, Karen, as well as meeting some members of the Scottish Dementia Working Group in Scotland was brilliant, and I love the feistiness of the Scotts! During our first in London, I met Shibleys Mum, which was a real honour and pleasure; #MotherKnowsBest most definitely in their household!! I also met Susana Garcia and Peter Mittler (@PeterMittler1) in London, both whom I had known online for a while, particularly Susana Garcia (@TyTCoaching) who started a blog Moving Your Soul some time ago that I have contributed to. Then we met long time family friends in Gillingham south of London, and had dinner with Hilary Doxford and her wonderful husband (and BUB) Peter and their dog Tilly. And meeting Ken Casper and his delightful wife Janice in Durham was definitely worth the six hour diversion that day just to meet them. I have know Ken online for ages, and they also made the trip to the Lakes District to see us again there, and we were spoilt with perfect English summer weather and a half day out on the lake.
We spent two afternoons with members and staff of YoundDementiaUK in Oxford, and one day I talked to them about my book and life with dementia. It was wonderful to meet everyone and spend time together sharing our lives, and learning more about dementia.
On another day, as a late invitation, I attended a conference on Dementia friendly communities in Birmingham titled Rights, Inclusion and Diversity: at the heart of Dementia Friendly Communities, a Journal of Dementia Care conference in association with the Alzheimer’s Society UK and the Joseph Rowntree Foundation, and to have been invited to join two key note panel sessions, one specifically on dementia friendly communities, and one on how we measure the outcomes of these initiatives.
One concurrent session closed with the Charter of Rights for people with dementia and their carers in Scotland, which were developed to ensure the rights of all people affected by dementia are fully met. Do read them in full, as they appear to be where dementia friendly work was started, although it was not referred to in that way then. The charter is guided by a human rights-based approach (known as the “PANEL” approach, endorsed by the United Nations). It emphasises the rights of everyone to:
Participate in decisions which affect their human rights
Accountability of those responsible for the respect, protection and fulfilment of human rights
Non-discrimination and equality
Empowerment to know their rights and how to claim them
Legality in all decisions through an explicit link with human rights legal standards in all
Perhaps the most exciting time was on Saturday afternoon where Shibley Rahman and I held an event to celebrate the pre release of his latest book, and my first book on dementia, What the hell happened to my brain? We were limited to fifty guests due to space and venue size, partly as we were self funding this event and costs of venues in London is expensive, then we followed up with about twenty of us going out for a cheap and cheerful dinner at the local Pizza Express in Camden! This event enabled me to meet many people I knew via my blog or on twitter, and it was sensational to put faces to so many twitter handles!
I miss my friends in the UK and Europe, but am also very glad to be home with Boris and my beautiful friends back here!