Monthly Archives: November 2018

The Traveller

I see myself as a traveller. I have always loved to travel, taking my first overseas holiday at the age of 4, which was pretty big back in the early 50s, when people didn’t jet around like nowadays.

Although I have  fond memories of some wonderful trips made with great friends, much of my travelling has been done alone. I have always been fiercely independant and confidant traveller, so a short 3 day trip to Queensland, over the weekend was not something to work up a sweat over.

When flying, I try always to book an aisle seat – it makes it easy to get in and out to stretch my legs and get to the bathroom easily, without having to disturb people, who are often, either, asleep or engrossed in movies and it doesn’t bother me to move for those sitting in the inner seats, seeing it as a reminder to keep moving. It also makes it easy for me to stand up and access my bag, if I have inadvertently left something in it, that I need during the flight (a regular occurrance, nowadays). So imagine my surprise to finding a lady sitting in “my seat” next to her husband. I politely pointed this out and added that her seat must be next to the window, as “D” was the aisle seat, but she wasn’t having any of it and her husband was agreeing with her. Frantically I began looking round for a steward, or someone else to confirm that I was right and she had to move. The line of people needing to get to their seats was building and I could feel myself starting to panic, as I tried to put my bag up into the overhead locker. The young woman behind me, assisted me with my bag and asked if I was Ok, and to my horror, I could feel my eyes filling with tears saying, “I have dementia, I always sit there, she’s in my seat – I can’t sit over there” – me, who never makes a big fuss, who rolls with the punches, who goes with the flow…and all those other peaceful images!!!!

The offending women, sitting in “my” seat, just shook her head, as she and her husband stood up, took my elbow and moved me through to the window seat. I sat trembling and fighting the tears, feeling angry, frustrated and humiliated for a good part of the 90 minute trip. It was the worst flight of my life!!!!

Yes, the woman was a pain in the proverbial, and yes, she was wrong, BUT my response to a niggly little situation was what hurt me most. Is this how it is now? I know change in personality is part of the dementia, but I never expected to be able to see it so clearly in myself. I’ve always told myself the real me will always be “in there” – but this wasn’t me…not the me that I have ever been. Will it be this change that stops me, rather than the failing cognitions that I expected? I write this with tears streaming down my face and for the first time since I adjusted to my diagnosis, I feel truly afraid.

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Do we really know as much as we think we know about our friends?

Sadly a friend from Rotary passed away. I attended his funeral on Tuesday, and it was the biggest funeral I have ever attended, hard to say but would think there were around 300 people who came along to farewell Alan. It started me thinking about how little we know about some of our friends. I knew that he was a good Rotarian and active in his community, but just how active was a surprise to me. I knew he was involved in scouting  but how heavily involved, I had no idea. I didn’t even know that he had received an OAM for his work in scouting, a few years back. At 71 (not old in today’s world), Alan was a quiet achiever – well quiet probably is not a good word for Alan, with his booming voice that used to startle me with its loudness. (Must have been from trying to make himself heard over the scouts 😀).

As well as Rotary and scouting, Alan was also involved in his local church council and on the local Council. He had even completed a law degree, later in life to support his work. A truly amazing man.

Are we all as complex as Alan. Is it always a surprise to our friends, after our passing, at the many facets of our lives? I can only hope that my friends will be as surprised and delighted as I was this week, when my time comes.

Being unexpected

Time to stop beating myself up

I was about to apologise for not writing sooner, but then stopped myself.  It’s time to stop apologising – let’s see how that goes?????

The last few weeks have been exciting and challenging.  A few days in New Zealand, at the Alzheimer’s New Zealand Conference totally inspired me.  Such wonderful speakers, most showing a real depth of understanding of what is needed to make living with dementia easier for all of us – from those of us living with dementia, to family and paid carers; representatives of varied service organisations, policy makers to politicians.

It was a proud moment for me to be able to co-present with Associate Professor Lee-Fay Low from Sydney University, who unlike so many medicos is “prescribing engagement”. I am part of her team in a research program looking at the benefits of early psychological support following diagnosis – a great program with benefits for all.  The benefits for the three of us acting as peer supporters is as tangible as the benefits to those whom we are supporting….even the original Research Team (minus those of us with dementia) themselves talk about how much they are gaining from the program, personally – loving the program and the Team.

I attended my first dementia cafe, on Friday, as a guest speaker.  I had been able to have some input into it’s establishment and congratulations to the Upper North Shore Dementia Friends’ Committee who got the whole project up and running in just 6 weeks. It was an interesting experience for me and there are certainly a few small bumps to iron out, but great to see so many volunteers, many from Rotary, who want to make a difference.

Monday I attended a social support group for people living with a younger onset dementia diagnosis – I don’t actually meet the criteria as I was too old when diagnosed (you have to be under 65 on diagnosis), but they told me the young at heart were welcome.  They were a great bunch of people and I will certainly go along from time to time – even if it is just to beat Steve at pool.  It was great to be able to find another volunteer to sit of the Dementia Advisory Group that I am trying to establish to advise our newly formed Central Coast Dementia Alliance.  There are now 5 of us with the lived experience – three with dementia and 2 carers, I think we are about ready to start meeting and getting our act together.  I think we might provide some challenges for the Alliance, but what the heck, isn’t that our role in life, nowadays.

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