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

 

 

2 Years on

Well, here I go again. I have had this blog for 4 years and this is only my 3rd post. At least I have been consistent, with my two year postings, haha.

I am in a very different space to previous post, my last being two years ago. I am hoping to be able to do this on a more regular basis and to feel confidant enough to do it in a public space, but we’ll see how that goes.

In my last post, I spoke of the shock of my diagnosis, but 2 years down the track, I am now at peace. Having a diagnosis of dementia is not something that I could have seen myself living with confortably, but now it is different.

I am very lucky that I am still functioning pretty well.  Of course there are variations on a day to day basis, but on the whole I can still do most of the things that I want to do, just slower and more clumsily.

I became a dementia advocate, around 18 months ago, and now speak confidently about living with dementia in open forums. I am heavily involved in a number of research programs, and sit on numerous committees. I have many friends, living with dementia, as well as my longer term friends, who on the whole are understanding and supportive of me. My friends who either have a diagnosis of dementia or support someone who does, are like a family. We get each other, which give us the opportunity to speak and act freely without fear of judgement or reprisal.

I am aiming to keep these blogs short and to the point, so won’t drone on too much today. If I am able to folow through on my plan, I wil be writing short contributions every couple of days, or when I have something interesting to say, so hopefully will build up a fuller picture of my life, as it now stands. I fear that my posts will not be as professional or interesting as many of my cohort, but I will do my best to give a good representation of how it is to live with dementia. Be patient with me.

An unexpected change

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Well, more than 2 years has past since my last blog…no-one could accuse me of being a regular blogger. I  originally started this blog to reflect on living life in my retirement

In October 2015 I was diagnosed with frontal- temporal dementia. Of all the things that I could have been attacked by, it had to be this. My brain…one of the only parts of my body that I really valued is going to take off and leave me behind. I want to cry when I think about it, but how many tears can you shed?

After the initial grief response, which lasted around 6 months, I have been able to take some steps to prepare for the future. I talk about it (with anyone who will listen). I say I am not looking for sympathy….I hope this is the truth.  I need understanding and some support…not so much right now, but I know the time will come!!!!The knowing….a blessing and a curse. A blessing because I can prepare myself; put some strategies in place; plan my future etc.  A curse, because I know what is coming…just not when!!!!I recognise the skills that I am losing, I know what I can’t do today althôugh I could do it yesterday.

The plan is to live in the moment…enjoy each second and celebrate the positives.  How hard is this? How hard not to reflect on how things were.  Almost impossible to not think about what is ahead. I sound very self assured when I speak to others…so self assured….so much bullshit. The fact is I try to fill every second, not just so that I don’t waste it, butto keep my mind busy.

I’m so tired. Mostly it would be so easy just to close my eyes and lie down somewhere.  Right now, too tired to even blog, so Goodnight

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