17 weekends in 6 weeks

Kate, Beth and Shibley

Kate, Beth and Shibley

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!

17 thoughts on “17 weekends in 6 weeks

  1. Kate, it is very moving to read of how much you put into this trip, both in terms of travel and in terms of reaching out to people with dementia and those in a position to help. Your talk in London was a whirlwind of helpful and deeply believed material, and it was a real honour to sit and talk with you for a few minutes later that evening. Shibley’s first book is on order here (I’m sure I’ll read his second in due course!) and I will certainly be reading yours when it becomes available. Thank you for all you do x

  2. I admire your energy Kate, that’s a real whirlwind of a trip! Thank you for your kind words – it was my pleasure to compere yours and Shibs book launch, and it was fabulous to catch up with you while you were in the UK. Looking forward to introducing baby to you next time we meet xx

  3. Crikey: If I did a trip like that I would have to lie in a darkened room for the rest of my life! My sister was once described by a Russian colleague as “a little ball of fire” and I think that might fit you as well Kate. (fire being both energy and passion) xx

  4. As always Kate, thanks for your beautiful view, open, honest view of “life on the other side” which could also be called “the right side” or “the best side” or “the it is what it is side” or “doing what’s right with the best side you’ve got.” Or I go on!!!

    What an adventure you had. Be sure to allow recouping and reentry by taking a vacation from the vacation. We always took a week or two to rest up and regain ourselves after a hectic, extended trip. Enough advice from me! Done with love.

    Gregory and I said from the beginning when we received the diagnosis: “We have a choice. Lie down and die or hunker down and keep going.” We hunkered and never regretted the choice.

    To quote the article on “The Australian Journal of Dementia Care” on Prescribed Disengagement: “When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’, as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia.”

    In some ways Gregory and I did both. We Disengaged from everything that was a should or ought or a “have to.” We gave up life “as we knew it” after studying it and getting rid of the parts we just didn’t want to waste our time on! We “triaged:” DUMP these activities in our life, KEEP these, THINK about these and decide later.

    We closed Gregory’s architecture firm realizing we could survive well enough without working and that the time spent at the firm was “for others.” We wanted our time to be spent “for ourselves.”

    We traveled the world, we subscribed to theater seasons, and went to the opera. We entertained, we increased dinner out with friends, we made short trips around the area. We sold our rental property, the architecture studio, our home (which was all part of the same property collective) and bought a more efficient, smaller, lovely condo in the heart of downtown Evanston, a small city just 30 minutes outside of Downtown Chicago by METRA.

    At the same time, we spent time creating a life that would be easier for Gregory to manage. As he needed, I was able to do more and more for us. I got our financial and legal affairs in order, which was no mean trick being a same-sex couple without any protections under the law. I learned how to take care of me so I could better take care of him as the needs increased. I strengthened our support base with family, friends, doctors, therapists, specialists, caregiver companions, etc. I studied the disease and researched our options. My work allowed Gregory to have wonderful days filled with love and things he wanted to do, not things he had to do!

    Basically, with the diagnosis, with the knowledge that it gave us, knowing that time was more important and limited, we reinvented ourselves as we would really like to be: not based on expectations from our earlier selves, or family, or friends, or community, or society.

    By both “giving up life as we knew it” and by “creating the new life we wanted to live,” we lived “Happily Ever After” and are still doing so even with the progression of Gregory’s Dementia/Alzheiemr’s and both of our ages:-) We are good! We carry much JOY even though it may be on the shoulders of SORROW.

    As a bit of “advertisement:” you can read more about us and our journey at:
    http://mhorvichcares.blogspot.com

  5. What a great blog post Kate 🙂

    And a link to your new, upcoming book!! It’s getting exciting ….. unfortunately we’ll have to wait another 5 months, but it’ll be worth the wait, I’m sure!!

    • Thanks Yolanda, and in fact, this blog was inspired by you, as you had asked me to write up where we had been and what we’d been up to, so I started it after that message whilst still away! xox

  6. Phew! What a whirlwind trip! You need to be home to have a break. You visited two of my favourite places: Durham and the Lakes District. Travelling is the best experience – I say be open to everything. Travel is the best experience. It sounds as if you both had a great (sometimes tiring holiday). Welcome home and thanks so much for your blog. Bron xo

  7. What a wonderful trip you have had! It is lovely to hear about the places you visited especially Durham (I live near this beautiful city) and the Lake District, spending time with friends and family.
    Good luck with your book, I will look out for it. Best wishes.

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s