Tag Archives: Travels with The Professor

The Professor’s Mind and Body Wander…

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It’s been ages since I wrote, which usually means I need to get how I am feeling about whatever is happening to my dear old Dad out of my system. The Professor had a birthday last month, so is now heading towards his mid-eighties…not that Alzheimer’s Disease will let him remember that.

Or much else, for that matter.

Every now and then I feel weirdly guilty about the time when my brother and I gave Dad one of those birthday cards with a badge attached — the one we picked was one bright orange with navy blue writing, and said “Mentally Confused and Prone to Wandering”. Our then-teenaged selves never once suspected he might actually need such an accoutrement: to us, Dad was so incredibly whip smart and intellectually beyond us that such a thought was ludicrous, particularly as he was then working at the dizzying heights of academia. We made him wear it to the Ivory Tower he worked at, a university which later granted him a PhD after he completed all the course work, oral and written examinations in three languages, his dissertation and his thesis defence in just under two and a half years. All while financially supporting his family.

We thought making Dad wearing the badge to work was absolutely hilarious.

Mentally confused and prone to wandering? Pfft…

And now, several decades later, The Professor is exactly that.

Seven years ago, when he was first diagnosed with dementia, if you did not know The Professor you would have been hard pressed to recognise the signs and symptoms that had alerted us to the fact that all was not well. And now, after years of gradual decline, the past twelve months have produced an accelerating deterioration of his condition.

Even so, The Professor is trying to retain his dignity while his world is so utterly, heartbreakingly diminished.

The man who we would constantly have to ask to slow down when he strode briskly ahead of us now moves unsteadily, and at a glacial pace.

A year ago, crossword puzzles delighted him…but then they became more difficult. He started looking up answers in the back of the book and filling them in. Then those answers became confused, or mis-spelled, or entered into the wrong squares. Now the whole concept is beyond him.

Spoken words, which were once a source of great enjoyment for him — let’s be honest, The Professor was literally a lecturer, both at work and at home — have all but disappeared. He now prefers to use hand gestures and facial expressions to communicate what he wants (or, increasingly, what he doesn’t want). His verbal communication is limited at best, and we have to remind him to use his words.

Use your words.

I thought my days of saying that phrase ended around the time when my children started school.

Turns out I was wrong about that, too.

I haven’t heard him say my name in a long time, and many times when we meet up I can see he has no clear idea who I am. He seems to know, however, that I am someone who loves him, and who is not is going to threaten or harm him in any way.

And so, we take refuge in humour.

If I do end up having a phone conversation with The Professor, which is now almost exclusively one-sided, I try to make him laugh. If we’re on FaceTime, I’ll settle for a smile — or a hint of recognition that he has got whatever joke I’m attempting to make.

My mother, who would definitely win the Nobel Prize for Caregiving if there was such a thing, is still looking after The Professor in their home. I honestly don’t know how sustainable that arrangement will be if he continues to decline, but given it’s something she is currently committed to, I am attempting to support her however I can. We used to try to make light of The Professor letting the (indoor) cat out, but now we’ve been reduced to joking about not letting The Professor out.

The whole situation is unsettling and confusing and seemingly never-ending, but evidently The Professor is not yet ready to leave us.

I suspect I will be more than ready when he does.

That is one thing a diagnosis like The Professor’s gives you: an extended period of time in which to grieve.

And I can honestly say I do not write about this to garner sympathy or attention for myself. Writing enables me to make sense of what I am feeling about a complicated situation, one which I am resigned to and accepting of (even though it absolutely sucks). While these are my words, they are about and for my father, who genuinely deserves all the compassion and consideration in the world.

I choose to write publicly about my experiences to acknowledge and provide a window into The Professor’s ever-shrinking world. To remind my teenaged self that the badge my brother and I gave our Dad was intended, and taken, as a joke — and one we all laughed long and hard at. To give my mother something to refer people to if their questions or kindnesses make it too hard for her to respond. To use my words to tell The Professor’s story now he is unable to tell his own.

So, if you’re reading this, please remember — for as long as your brain allows you to remember — to LIVE!

Live freely, love fiercely, choose wisely and make every single day count.

BJx

Terra Incognita

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map 2It’s been a while since I’ve written about my travels with The Professor — or found the time to write here at all, for that matter. Despite my best intentions, I managed to overcommit myself during the first few weeks of the current school term, which put paid to any attempt to unravel the many complexities of the universe in this, my little patch of cyberspace.

Coronavirus and all its attendant concerns and controversies have made this mad world an even more perplexing place to navigate lately, and they have also served to highlight even more vividly the difficulties our family is facing as dementia slowly and inexorably claims my father’s brain.

Last week we received confirmation the resort we had planned to holiday at with our extended family over Christmas this year will be closed until April 2021. That tropical island getaway had been shining like a beacon of hope at the end of this crazy year, but now that the Trans-Tasman travel bubble has failed to materialise and the thought of any trips further afield has faded away, we are being forced to confront two realisations: one, that our Fijian vacation will, at the very least, have to be postponed; two, that the longer the borders take to reopen, the less likely it will be that the Professor will be in a suitably fit mental state to make the trip.

It still feels like a sucker punch.

So do the times when Dad gets stuck in a loop, and tells the same story over and again, despite every failed effort to deflect or distract or redirect him onto a new neural track.

Or when he has what we call “Alice Days”, and is alone, and sometimes flailing, in his own Wonderland, unable to recall how to answer the phone or what was said only minutes before.

I am grateful that he still delights in words — and wordplay, when he is able to — even if he does recite the same poem or witty ditty he learned as a schoolboy eleventy million times in the course of a single afternoon. I am pleased he still finds pleasure in reading books, despite borrowing the same volumes from the local library time and again because he doesn’t recall enjoying them only the week before.

Sometimes I grow weary of the slow grieving process that inevitably accompanies the Professor’s decline, of watching the ever-closing window and never knowing how much time or lucidity is left before it shuts.

map 3I am utterly humbled by my mother, and am in absolute awe of her patience, compassion and devotion to the previously active and highly cerebral man who once anchored our lives, who now feels like he is floating above us, tethered only by interwoven strings of love and tenacity.

I try, as my mother always does, to meet the Professor where he is.

I hang on to the good days, when the repetitions are rarities, or when he’s not wandering through a mire of memories of times long before my birth.

I find it’s easiest for me to hold his hand on the Alice days, hoping he finds the same comfort in the familiarity of that simple touch as I do.

And most of all, I hope — fervently — that he is not undone by disorientation and distress as dementia erases the lines from the maps he has always known, forcing him into Terra Incognita as the charts fade, into the unknown.

map 4

 

 

A Firstborn’s Thoughts on Being Remembered

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I was born in the Emerald City, a sparkling harbour jewel on the eastern edge of the wide brown land of Oz. It had been an unseasonally wet summer, full of drooping humidity and cicada song, and the day I was due to make my way into this world came and went, sweeping past like a sudden southerly squall. For two full weeks the rain fell, until — finally — a day dawned, full of light and promise, and the clouds disappeared. And so it was, in the golden light of late afternoon on that first fine day for a fortnight, that I was born.

first born

Firstborn problems…

Ah…there’s nothing like a bit of fullblown firstborn child mythologising, is there?

I mean, it’s all true — all that stuff I wrote up top, however much I might have embroidered it.

But it’s also true, as any firstborn will know but will be equally unlikely to admit, there’s nothing quite like knowing that (for better or worse) the moment of your birth changed your parents’ lives forever. It sets you apart. It marks you as different from your siblings, whether you are followed by one or an entire busload of other children.

Being the firstborn makes you special.

There…I said it.

QE2

Seriously, we firstborns barely flinch…

However, as most firstborns will tell you, this ain’t necessarily a good thing. It’s a bit like being the Queen of England (no, seriously…bear with me here, and not just because the Queen has obviously been far more affected by birth order than most).

Firstborns are expected to be responsible. To show leadership. To set a good example — or, failing that, to have every misdemeanour bookmarked forever after as a reference point of what not to do. And all of this happens, like Her Majesty, just because you were born.

Like the Queen, some of us appear to shoulder the burden lightly. In fact, you’d hardly know we were eldest children unless you asked. We barely flinch when reminded of certain (glaringly obvious) historical inconsistencies between curfew times, basic standards of acceptable dress, and the general application of rules. We don’t bat an eye when our younger siblings get away with doing things we would have been instantly grounded for and saying stuff we always wish we could have. We remain unfazed by the age old and as yet unresolved conflict regarding whether it is the person on the dealer’s left or the youngest player who goes first.

birthday

Firstborn means you’re always older…meh…

And yet, there can come a day — which, for me, came only yesterday — when you wonder whether the simple fact of being firstborn is sufficient. When you question whether being the child whose birth, years before, changed your parents’ lives will prompt them to remember you on your birthday.

What? I usually prefer to let this ridiculous birthday stuff slide straight under the radar…I’m a firstborn, and that means that the oldest child is always, well…older…

Being the responsible, rule following, respectful firstborn that I am, I spent part of my birthday yesterday beside my mother’s hospital bed, where she was recovering from back surgery.

No, I don’t need a medal. Really — I’m a firstborn; we do this stuff all the time.

hippo birdy

Hippo Birdie Two Ewe, in full.

What I did need, was for my Dad, The Professor, who has dementia, to remember that it was the anniversary of the day his firstborn child came into the world.

And you know what? He did. Not that actually wished me, “Happy Birthday,” mind. Rather more amusingly, and in keeping with long-standing family tradition, he quoted Sandra Boynton and said, “Hippo Birdie Two Ewes”.

And so it was that on another hot, humid day in the Emerald City, which remains the most glittering of jewels on the edge of the wide brown land of Oz, this firstborn was remembered.

And it really was special.

 

 

 

À la Recherche de Temps Précieux

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ironicI have been in search of precious time recently — not temps perdu, like Proust obsessing over his madeleines.  I have no need of seven volumes of rememebrances of things past right now — though the irony of that will soon become clear.

Rather, I am in fervent, life-affirming need of the present.

I’m not entirely sure how many times I’ve begun composing this post or some version of it in my head over the past few weeks, but I’ve finally figured out that I simply need to put fingers to keys and write — honestly, and hopefully positively — about something significant that is affecting my life.

So here it is: my Dad has been diagnosed with dementia.

I have mentioned my father was experiencing significant health issues in a post once before, and vaguely alluded to it as well, but lately I have discovered that not writing about it openly has been stopping me from writing here at all. It’s not like I’ve had any kind of writer’s block (mostly because I arrogantly refuse to entertain the possibilty that such a thing will ever beset me), or that I have lacked material I thought worthy of sharing. I’ve happily written articles and press releases for clients, and finished off pieces of fiction I started years ago — and even had the temerity to share some of them with an audience.

But my reluctance to write about Dad’s dementia has resulted in the longest hiatus I’ve ever had from this small patch of cyberspace I call my own, and it’s time I changed that in the best way I know how.

I don’t want this to turn into one long whinge about how much it sucks that my Dad — my incredibly intelligent, erudite, articulate and energetic father — has an incurable condition, so I’ve decided that this will be the first in a series of posts I want to categorise under Travels with The Professor.

lionMy hope is that these posts, whenever I feel the need to write them, will celebrate the man who helped raise me, of all that he was and all that he still is.  I imagine I might want to share things that he’s taught me and encouraged me to appreciate, and to make sense of what I’m learning about him and myself as we journey down this one way street, not knowing how long we have together, or how long he will know we are on the path with him.  I don’t want to eulogise him, though I am fully aware that I will probably end up mytholigising at times — because that’s what Dads are for: they are the mightiest of lions, the leaders of the pride, the ones we look up to.

So I invite you to join me, if you’re willing, and we’ll both see where these rambling Travels with The Professor take us.