Well here it is mid-February already!!!!

I can’t believe that it has been 2 months since I last wrote, and we are, already, well into the second month of the year.

Christmas came and went in the normal flurry of preparation, boosted by the excitement of my three young grandsons. I say it every year, but such a build-up for one day that comes and goes, and which is, generally, filled with so much emotion that the laughter so often turns to tears. The children, of course, received multitudes of gifts, some of which will be worn and played with in the months ahead, but some already, eaten, broken or discarded. How do we get out of this loop of overloading with “things”, starting at such a young age?????? Sorry if I sound like Scrooge – I’m as big a culprit as everyone else, but….!!!

New Year is always an interesting time – one of reflection of the year that was, accompanied by feelings of optimism displayed in our New Year resolutions to eat less, exercise more, take up “this” and give up “that”. For most of us, given that it is now February, we don’t have to think of all that too much now, haha. I am proud to say that I have shown a much stronger commitment to exercising more and seem to have got myself into a fairly decent routine. They say it takes 3 weeks to develop a habit, so hopefully…..! (I’ll let you know in 6 months). So much research is showing that regular exercise is such an important part of maintaining cognition and retaining functioning for a person with dementia, that I’d have to be really stupid to continue to ignore it.  Hopefully I can continue to include it in my personalised program that I have developed to hold onto my functioning for as  long as possible.

My advocacy activities have been pretty quiet during January, as not only was it school holidays, but here in Australia, it is our Summer holidays, so all businesses (other than those linked to tourism) have a quiet month.  This apparently includes the business of dementia. Most of my Committee work and guest speaking opportunities came to a grinding halt, which worked well for me, as I had the boys visiting for the greater part of the holidays. Since they went back to school at the end of January, it feels like everyone is on catch-up,with meetings and invitations flying everywhere.  I’m not complaining though, as a “work” routine is settling and more comfortable than you would expect.  It’s always lovely to have the boys around, with all the physical and emotional challenges that come with entertaining three young boys on the autism spectrum, but it’s also great to get back into the mentally stimulating atmosphere of the work-place, and kick-start the sleeping cells, whilst trying to get them to remember how it all works!!!!!

With my advocacy work and my new exercise program, plus, I’m delighted to say lots of social activities to slot in, my calendar is looking remarkably full.

I wish you all a VERY belated Happy New Year, because looking at what is coming up, for me anyway, I think 2019 is going to be a year worth remembering.  As remembering is not always an option for me, I intend to make the most of every moment, of every day and make sure that I enjoy myself, whether I am able to remember it later or not.

Expect the best

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Another Big Week

Have had a very productive week, this week.  Monday and Tuesday was a great opportunity to catch up with my friends who sit on the National Dementia Australia Advisory Committee (DAAC), some of us meeting, face to face for the first time.  We meet monthly via Zoom, but this is the first face to face meeting we have held since I joined the Committee 15 months ago.

It was great to have an extended time to sit and discuss all the things that we never seem to have time to get around to.  Lots of business covered, time to speak to both Dementia Australia’s Chief Executive and a representative of  the Board. Still no sign of a person living with dementia on the Board, but at least there is recognition that better communication is required, so a start, and we are certainly not going to let it go at that!!

Wednesday was equally exciting with the initial meeting of the Lived Experience Dementia Advisory Group (LE DAGs), who will be advising the Central Coast Dementia Alliance (CCDA). The CCDA have been doing some great work in the relatively short time that they have been going, and have just completed a series of information sessions for carers (both family and paid carers).  I joined the Alliance in July and we have been seeking expressions of interest from people living with dementia and or their carers living on the Central Coast of NSW, here in Australia.  We now have 6 people on the Advisory Group, who all met each other for the first time on Wednesday.  Over a cup of tea, we were able to get to know each other a little better and work out how we want the group to work – our role; how we wish to communicate to make it as dementia friendly as possible for all concerned; and frequency, location, suitable days / times and duration of meetings. Doesn’t sound like to much, but I came away feeling comfortable that we were well prepared to move forward in the New Year.  All very exciting.

Finally, found out from friends that I had been featured in a whole range of regional newspapers –Media - Dec18 big surprise, as the information all came from a media release that went out from Sydney University at the beginning of the year.  Not sure why they decided to run it this week, but there you go!!!!!

 

 

 

The rest of the week has been taken up with Christmas parties and selling Christmas trees for Rotary – so plenty of friendship and fun all round.

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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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A month has passed

I’ve been really slack and let a whole month pass, without posting. I can blame it on busyness, but is that real….don’t they say you can always find the time to do the things you really want to do? I can blame tiredness..the busyness makes me tired, and allows me to say, I’ll write tomorrow when I’m not so tired ….but then I am busy again.

I look back into my diary to see what has been keeping me busy….of course we have had 2 weeks of school holidays, so much of that time has been spent with my three grandsons. I have them individually during the school holidays, to give each of them some one to one Nanna time, so I have seen three movies; Christopher Robin; Paw Patrol; and the Rowan Atkinson movie (can’t remember its name). All entertaining though. Now I can’t drive up to my daughter’s, to pick the boys up anymore, it is a bit of a hike on public transport….a train and two buses, to cover the 78kms getting there, only to turn round and do it again in reverse order. My son-in-law came and picked one of them up, and we have also worked out that whenever possible he will meet me at the station to cut out the bus trips, which cuts the journey down by half….wish my daughter had learnt to drive!!!!!

I’ve also done three Community presentations, on dementia, two at Rotary Clubs, and one at Umina Mens Shed. At each one I have had someone come up to me afterwards and say, “I’m pretty sure I have denentia, but haven’t told anyone else yet”. The fear and the stigma is still so strong – hopefully each of them will take my advice and speak to their families and go to see their GPs.

I’ve had the normal run of meetings, both Rotary and Dementia related; and at the moment am in Auckland following a 3 day Conference, that ended today, put on by Alzheimers New Zealand, which was amazing but exhausting – physically and emotionally. Perhaps I had better make that a separate post, as my eyes are blurring and maybe yours are too!!!

Hope my waffling isn’t too boring. I at least feel less guilty looking back over the month and realising that the busyness is real not imagined and that there is a definite excuse for my tardiness. ❤

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A day and a half!!!!

Another big day, with my interview with the ABC Radio Central Coast going on air at 7-15am this morning. It was actually my first radio interview, so I was a bit nervous, as I hate the sound of my voice on replayed recordings, especially now that I sometimes struggle to get my sentences out. On hearing the play back, I was quite relieved to hear that with good editing (thanks to pre-recording, rather than going live), I sounded quite coherent….phew!!!!!

The interview was to promote dementia awareness, and was basically around my personal story of diagnosis and current state, but I tried to focus on the positive results of keeping actively involved, to emphasise the point that there is life after a dementia diagnosis.

Today also saw me at a round table meeting with the Federal Minister for Senior Australians and Aged Care, the Hon Ken Wyatt AM  MP., to discuss the Terms of Reference for the upcoming Royal Commission that has been called to look at issues within our Aged Care Services.

It was somewhat shocking to realise that around 30 of us, from various backgrounds were expected to present our ideas in 1 hour!!!!! One would suspect that rubber stamping is at play here, and how much of what was said would be taken on board. In spite of this, I was pleasantly surprised at the constructive nature of the presentations. I was also pleased that although I was only able to present a small part of what I had hoped to put forward, all of my points were presented from around the table, during the meeting.  I focussed on the need for the Commission to work from a Human Rights perspective, and the need for better basic education and training for staff, in order to move away from the BPSD framework, to the recognition of “behaviours” being an expression of unmet needs. I also was able to identify the particular challenges for people with a dementia diagnosis who live alone, without a live in carer, and the need for a review of home care services to avoid our early entry into residential facilities. I think I got my 2 minutes worth!!!!

With 2 hours travelling each way, to and from the meeting, on top of everything else today, I’m now home in my pyjamas, more than ready for my bed. So goodnight my friends…..tomorrow is another day.

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Dementia – a part-timejob?

Having a quiet day today, following a pretty full day of dementia related activities yesterday.

The day started with an online meeting of the steering committee, for a research program being completed by Palliative Care Australia (PCA), which is aimed at developing an end of life care planning for people with dementia document. An inspiring group of people from PCA, working in conjunction with aged care service providers. As with all research projects the early stages are slow, but we are getting close to piloting the study, so the excitement is building.

Following the  meeting it was time to prepare myself for the drive to Wyong Hospital, to catch up with Lauren from Central Coast Health and Dr. Tomiko Bennett, a senior geriatrician heading up the Aged Care / Dementia Care Team on the Upper Central Coast, to complete a photo-shoot to accompany our interviews for a media release in support of Dementia Awareness month.  Wyong Hospital is about an hour’s drive from home, which is more than I generally take on nowadays, as I am finding driving very tiring, although am dreading the day when it has to stop!!!! Arriving at the hospital in plenty of time, I then spent the next 20 minutes trying to park my car, finding one after driving around the main carpark and all the little (special) car parks numerous times. The photo-shoot, however, went well and will share some of the responses to the media shoot (if anything happens, lol).

My final dementia related task of the day was to speak at a combined Rotary Club meeting, attended by over 60 people to add their awareness to Dementia Awareness week.  It was good to be able to summarize the progress that the Central Coast Dementia Alliance have made in a relatively short  and to receive such positive feedback.

I can’t tell you how pleased I was to get home and head for bed. Exhausted as I was, I was able to remind myself that as well as increasing awareness, I was also completing a major part of my own treatment program which is to stay socially engaged and involved in meaningful activities.

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Back into regular routine

The jet-lag has gone and life continues in it’s normal busy routine. Grandchildren; meetings (and more meetings); presentations to be written….and luckily still time to have a fun weekend away with my Rotary Club.  Not bad is less than 2 weeks.

It was wonderful to catch up with my three grandsons, who, it seems were as happy to see me as I was to see them. I like to believe it wasn’t just the presents from the trip!!! Had a fun time with the youngest, Jonah, aged 7, who spent the weekend with me and re-discovered all the games and toys that he stores at my place. Like me (and his two brothers) he faces neurological challenges at times, as he is on the autistic spectrum. They face different issues to my dementia, but on the same basis of having a brain that does not work like everyone else’s. A late starter in the language stakes, but understanding so much more than people realise. He is constantly smiling and gains so much pleasure from life, it is impossible not to smile with him. The lesson in life that I learn from Jonah, is that people don’t always understand us, but never to let that get in the way of getting on and doing what makes us happy.

Am very pleased to see the progress that we are making with the Central Coast Dementia Alliance.  We’re new and still finding our feet, but are working with one of the largest shopping Centres on the Central Coast, Westfield Tuggerah, to make it more accessible for everyone; with a particular focus on being dementia friendly. We are also organising a number of workshops, giving family and paid carers the opportunities to gain a better understanding of what it is like to live with dementia using Edie, technology lent to us by Dementia Australia.

Now it’s time to focus on my presentations for the New Zealand Alzheimer Association’s Conference, which takes place in Auckland next month.facebook_1536557195881

 

This time the confusion is jet-lag

My day to day life can often feel as if I am experiencing jet-lag….disturbed sleep, the extreme tiredness, the fog and confusion are my daily experience. This week, though, I have flown back from England to Australia after a wonderful visit with friends and family – I got back on Wednesday and two days later am at my confused best!!!!!! The real jet-lag on top of the equally real dementia is mind-blowing!!! Hopefully I will resume functioning at my “regular” level soon.

Strong but tired