Hope.

What I have recently noticed is now happening to my brain, reminded me about an extract from a book, ‘The Things We Keep’ by Sally Hepworth. It reads ‘Dr Brain once told me that an Alzheimer’s brain is like snow on a mountain peak- slowly melting. There are days when the sun is bright and chunks break off all over the place, and there are days when the sun stays tucked behind clouds and everything remains largely intact. Then there are days when you stumble across a trail you thought had melted, and for a short while you have something back that you had thought had gone forever.’

I think that I’ve nearly recovered from my travelling back from presenting at ADI Budapest and the holiday afterwards, in Italy. It’s been 6 weeks today since arriving back in Brisbane, and although I’ve been quite busy (media commitments which I’ll post about when I have more details), I’ve noticed that my symptoms have improved from 6 weeks ago.

However, I’ve also noticed changes which I hope isn’t the new me.

My lived experience with dementia now, is that I can be told something one day but have forgotten the next. The extent of this is new for Glenys also, and the first few times that it happened, she didn’t realise it either, so the conversation was more like I imagine that it would be in most households when busy lives mean that communication can be in passing; or not fully heard; or, missed because of being preoccupied. When I became aware of it, I raised it with Glenys and we discussed those few times that I’d noticed it and I asked her if she’d become aware of anything. That’s when I realised that it was more evident to her if the initial conversation had been during the afternoon or evening but she hadn’t mentioned it to me.

This is worrying as it means that my memory is fading. It also means that my ability to process information which is only one symptom, but a major one of my Alzheimer’s Disease, is getting worse.

It has become a source of constant frustration for me and in fact, sometimes I’m starting to doubt myself, which has lead to further confusion and frustration for me.

In spite of the lifestyle considerations I have factored into my life, including such things as good nutrition, mental activities and exercise I feel that my cognitive ability is diminishing ever so slowly but inexorably. But I suppose I could have expected that given I have Dementia!!!

Yet, things that I thought would fade from my memory like recent social events are still uppermost in my memory.
This is an example of the unpredictability of the progression of dementia.

Glenys’ thinking is that because it took at least 10 weeks to fully recover from my Camino trip and the complexities of that travel last September, that perhaps it’s possibly that I need more that these past 6 weeks, after all I have just completed 9 lengthy radio interviews in 8 days and an hour long prerecorded telephone conversation.

Glenys still has hope, but who knows! Is it as Sally Hepworth writes: ‘chunks break off all over the place’ OR that I will ‘stumble across a trail you thought had melted, and for a short while you have something back that you had thought had gone forever.’ I have to hope too I guess.

….for as long as possible

Living with Dementia was not a life-style choice that I made consciously.

For me, a diagnosis of Dementia has closed certain doors, yet opened others.

It closed the door to my ability to continue to work in paid employment, in an area that helped to provide a sense of identity. The forced departure from a career that I loved, and I think that I was well respected in, suddenly occurred two years before my diagnosis. This loss took some time to ‘get over’, if in fact I have fully. As many of you know, I worked in and managed all aspects of the education of primary school students in a large school.  A valuable profession. However, I no longer had the capacity to do many of the things that I once took for granted like problem solving, decision making and planning.

More recently, doors have closed on friendships that I would have thought could have withstood the test of time. But sadly, they didn’t.

Although Dementia has robbed me of my ability to do many things, and others that continue to emerge, it has opened other doors, hitherto, not a part of my previous life. New supportive friendships have been established and I have met many people who’s paths I wouldn’t have crossed, without Dementia.

One of the doors that opened is as a result of my membership of Dementia Alliance International (DAI). Only people living with a diagnosis of dementia (PWD) can be members of DAI. One of the initiatives of DAI is their weekly on-line, support hook-up session, facilitated using a medium called Zoom. We can chat about anything, including the weather; how we’re feeling that day; our concerns and share solutions; what we’ve been doing or planning to do.

It was during a recent zoom meeting, one person said a positive comment about our lives and the conversation went from there, with more positive comments and some laughter. Thinking about the conversation afterwards, I realised how truly lucky that I am that I still have the capacity to talk, to think (if somewhat impaired) and to socialise with others.

This highlighted to me how precious life can be, and that we should never take it for granted. I felt blessed that I am able to still do the things that I can. We should make the most of every moment.

My thoughts then drifted to thinking about other new doors that have been opened to me. For the past two years I have become a strong advocate for living well with YOD (Younger Onset Dementia) which has involved public speaking engagements in local, state, national and recently in international arenas. The purpose of these speaking engagements is to educate the community about the existence of YOD and about the stigmas and stereotyping associated with dementia that abound within the community, which must be addressed and dispelled. I believe that sharing my story, and listening to the stories of others who are doing their best to manage each day, and look for the positives when they can, will help change the pubic’s perception of dementia. It is not only ‘end of life stage’. By doing this, I and other PWD hope to demonstrate that a PWD can still live a productive life long after diagnosis.

To sum it up: Travel takes a lot out of me for weeks and months, and I still haven’t fully recovered from our recent trip to present at ADI Budapest and our holiday. However, I need to get some perspective again about the doors that have opened for me, and how lucky I am. So I’ve decided that despite how I’m feeling today, whist I still have the capacity I will continue my advocacy work as it gives me a new found sense of purpose in life. Glenys shares my passion and I’m sure she will continue to support me moving forward. We are a good team together.

I stand by my comment:

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“Having a diagnosis of Dementia is not a lifestyle choice. However, now that I have Dementia, I can choose my lifestyle. And I choose to Live Well with Dementia.”