Living in the moment – and I mean, the moment!

 

In Brisbane July 2015.JPG

 

 

As Marnus Labuschange reached 50 on the first day of the Boxing Day Test we all acknowledged his achievement.

“Where’s he from?” asked Marshall, sitting beside me in the Ponsford Stand.

“South Africa.”

Not long later, when the cricketing star was bowled on 63, I was asked the same question.

“South Africa,” I replied.

With so much talk of Marnus these days, his name seems to trigger an immediate response in Marshall’s brain. “Where’s he from?” has been a constant this past month or so. My reply has also been a constant, sometimes calm and collectedly, sometimes with a hint of loudness and emphasis.

This time last year I wrote a piece https://www.footyalmanac.com.au/its-far-from-funny-but-sometimes-you-just-have-to-laugh/ highlighting the effects of early dementia. Little did I know then just how quickly this devastating illness can progress. And little did I know then just how it can affect those closest to the person whose brain (or a part of it) is literally disintegrating.

We were “warned” about 18 months ago, when the diagnosis of Vascular Dementia was established, that things would get worse. We shrugged off the standard medical response and set about doing what we hoped would allay the brain’s anticipated deterioration.

Daily online brain memory exercises, crosswords, learning a musical instrument, learning a new language, and trying to physically exercise more to get the blood flowing to the brain were all part of the routine. (He had to be reminded each time, mind you).

We were also “warned” that a major change in his life would be difficult, and if we were considering moving from Sydney to Melbourne, we’d better do it soon, before things got too much worse.

So, off we set. Left Sydney and arrived in Melbourne in time for the 2019 footy season. Despite being unwell myself, we made the most of the year. Bought a new house, arranged renovations, went to the footy, interstate and in Melbourne, and I worked three days a week. We kept busy (or I did).

But, all the while, the dementia got worse. The brain memory exercises ceased, the musical instrument lay untouched, the new language was nowhere to be seen and the physical exercising became too much.

The repeated questions “Where is it?” would be asked every few minutes; “How do I get there?”, when attempting to walk one block, would, despite a note in his hand, end up in a phone call “Where am I, and where am I going?”; at the end of a TV program or film “Is that it?” has become all too common – not remembering what had taken place a minute earlier, meant the ending didn’t make sense; needing reassurance when on a tram with me, “Do you know where you’re going?”, was always accompanied with “What stop number do we get off?”

There have been many more repeated questions but, more alarming perhaps, is that the memory loss is changing from short–term to longer–term.

I was completely thrown recently when talking of our apartment in Surry Hills in Sydney, where we lived for 11 years, and only left nine months ago, was met with “Surry Hills?” Even looking at images on the computer, the response was “Well, not really!”

Oh dear!

As anyone who has lived with a person with dementia knows, memory is not the only problem. Cognitive impairment in the form of concentration, learning and understanding new things, and making any sort of new decision, is also paramount. And, so it seems, is a sense of uninhibitedness.

We were also “warned” that unusual behaviour can take place, especially when having access to computers and online websites and emails.

Well, that was Marshall’s life – computers. He was a computer scientist, lectured at Uni, and wrote Artificial Intelligence programs. And after his retirement, he volunteered to teach and help people in aged care facilities with their computers.

Not now. Instead, the unusual and uninhibited behaviour has thrown a whole new dimension our way. Joining websites (despite a big red note on his computer saying DO NOT JOIN ANY WEBSITES) has become a problem. (Thank god he now has no credit card!) And it’s not just “joining any old website”, they are ones he would never in a million years had ever thought of joining before!

Challenges are being thrown our way on a daily basis.

And as for me, his partner and carer, I have a major role to play. Despite adjustments I’ve had to make, I am constantly telling myself that I must change. I must stop getting so frustrated. I must stop raising my voice just about every time I’m asked the same question five times in five minutes. I must be kind and loving in my responses, and I must try and put the boot on the other foot, and imagine if I were him – how would I like it if he was so intolerant of me?

I am also reminded that on the occasions I have completely lost it, screaming loudly and angrily (once I even told him to ‘fuck off!’ – first time, ever) he had absolutely no recollection of it happening a few hours later when I apologised profusely!

Nevertheless, I am the only one who can change my own reactions. I must change, for both our sakes.

All in all, my beloved is not the person I once knew. Forty–seven years of being able to share has now become a distant memory. Sharing has taken on a new meaning.

And, as for living in the moment, that is just what Marshall seems to be doing. He smiles most of the time, shows no anger, and doesn’t seem to worry about his dementia.

Maybe living in the moment is not such a bad thing after all!

 

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About Jan Courtin

A Bloods tragic since first game at Lake Oval in 1948. Moved interstate to Sydney to be closer to beloved Swans in 1998. My book "My Lifelong Love Affair with the Swans" was launched by the Swans at their headquarters at the SCG in August 2016. www.myswansloveaffair.com

Comments

  1. Jan, thank you for sharing this brutally honest picture of how your day-to-day life unfolds as Marshall battles with dementia. Courageous writing and baring of the soul! I know that all Almanackers are with you in spirit. I wish you both strength, courage, patience and endurance.

  2. Jan enormous courage and respect to write this article my mum has become the angry dementia resident in the nursing home and had no idea who I or my son were when we last visited ( it upset my son,Daniel big time ) also the great man,Fred Chocka Bloch is struggling I am trying to give,Maida support
    I also worked in aged care in the dementia section for,13 years all we can do is wish you and Marshall all the best xxxx

  3. Daryl Schramm says

    Thank you for posting Jan. A timely reminder for me to be more patient with my mum (and others). I love your work!
    Best wishes.

  4. Jan, a very tough time for you now. Best wishes and I hope you find time to keep up with your Swannies. Don’t forget to look after yourself too!

  5. Jan, dementia is a horrible thing to have. A good friend of mine on facebook, Kerri has a father, a former champion baseballer, suffering from this. Seeing her with him can be distressing but her love for him shines through. All the best to you and Marshall and Next season, I hope your Swannies do you proud.

  6. Yes, no fun Jan. In my mother’s final years she endured Alzheimers, spending her last 2, 1/2 years in a nursing home. The only positive i could take from it is that in the latter stages her ability to understand where she was, or who she was, with had gone. Thus when i’d bade goodbye at the end of the visit i stopped feeling guilty she may regret me leaving, or not staying longer, as by the time i’d left the room her memory of me being there would have gone.

    Dementia is a reality we are going to have to deal with more and more regularly now. In 2018 , for the first time ever, there were more Australians aged over 45, than under 45. In 2020 globally, there are apparently more people aged over 60 than under 5. As we increase our knowledge of areas like medicine, science, some of the feared killers of the past get conquered. However there are the new challenges like the increased prevalence of dementia,

    As a health professional working with older people in the community this awareness, this need, becomes more glaring. Don’t start me on waiting times for packages !

    Take care Jan, all the best for/with Marshall.

    Glen!

  7. Many thanks to you all. Your comments are very much appreciated.

    Interestingly, I too have spent many years doing voluntary work with people in aged care – both in institutions and in their private homes – several with dementia of some form. But it’s not until it affects you on a personal level that it really hits home.

    From a positive perspective though, it certainly helps in being able to see others’ problems in a more sympathetic way, which, to me, is so important – in all levels of life.

  8. Thinking of you Jan. I want to say well done but that doesn’t seem right. Your words are so real and honest, but your situation is clearly challenging.
    So, well done for writing it down and best wishes and thoughts for you and Marshall.

  9. Many thanks, Kate

  10. Luke Reynolds says

    Jan, thanks for sharing, beautifully and respectfully written.

    Every time I’ve run into Marshall and yourself, Marshall has always had a smile on his face. Long may that continue.

    I can’t imagine you using the “F” word, unless you’re offering advice to an umpire or opposition player at the SCG!

  11. Kate you have proved just why this website is such a great vehicle for wisdom and understanding of the triumph of true humanity.Oh how we as readers can empathize with the raw emotion in your writing. My extended family too has been touched by this insidious condition that is so hard to comprehend let alone live with. Thank you for your honesty even though I am a Tiger fan, I have a soft spot for the Swans as my grandmother was a life long “bloods” fan

  12. Many thanks Luke and Richard. Kind words indeed.

    (Luke: it was my favourite word in the 70’s and 80’s!!)

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