Category Archives: Blogging

A long journey…

Jackie and Emblem

My mum, Jackie, with her favourite cow, Emblem.

 

Yesterday was my mum’s funeral, the end of a long journey that started many years ago. Its initial stages were played out behind the scenes, out of sight, deep inside my mum’s mind. Unknown to any of us, friends or family, the 100 billion or so neurons in my mum’s brain started a countdown. These neurons in her brain threw out neurological branches that connected to more than 100 trillion points, allowing for thoughts and memories to be formed and recalled. Slowly, and completely silently, this number started to drop. With no fanfare, an incredibly awful and utterly incurable process began that would only begin to show itself years later.

When it did show itself, it did so relatively innocuously. It was the odd repeated question, the occasional double take, the subtlest of shifts away from engaging in conversation.

The science behind Alzheimer’s tells us that the areas of the brain most commonly affected early on are those that are used for learning and planning. I remember patiently sitting with my mum trying to explain to her how to use her new mobile phone. The simplest instructions seemingly lost in the seconds following the conversation. In retrospect I can see the folly of trying to explain, and reexplain, something new to my mum. That I failed to mitigate my own behaviour, let alone expectations, to allow for the early onset dementia is both something I regret, and something that makes me feel embarrassed.

How unequipped I was to support my mum in those initial stages leaves a deeper sadness in me now than the ending of her story. She was preparing for one of the hardest journeys of her life, and I turned up with no shoes to walk in, maps to direct me or rations to sustain us. I was woefully ill-equipped.

In retrospect, there was still so much left to celebrate at this stage and instead I was too focused on the immediate problems and challenges in front of me. The fixation on the next steps trying to ‘fix’ these problems blinkered me from spotting the wider landscape of where we were, how we got there and how much further we still had to go.

I remember asking questions about gardening and composting and getting encyclopaedic answers disguised under a subtle humble demeanour of a women with a life time of experiences not used to being asked to share them. The lack of notebook and pen in hand resonates strongly now to illustrate my own failings at the time to appreciate the delicacy of these thoughts that could dissipate at any moment.

By the time I spotted the severity of the journey ahead, my mum had been walking solo for years. Everyday a confusing challenge, walking a journey no one would chose to take. Each day trying to guide herself with sheer willpower through an ever-changing landscape.

To try to support her I took my first significant step in equipping myself for this journey. This was to read Oliver James’ book ‘Contended Dementia’. Although far from the miraculous saviour text some of its proponents make it out to be, it did set me off in the right direction. It was from this that I accepted that parts of my mum’s memory, and what makes her who she is was slipping away. I set about ‘relearning’ my relationship with my mum. This was beyond tiring and involved unlearning a lifetime of habits. My questions soon ceased to be part of our conversations. They were instead replaced with an ever-changing melody of chitter chatter which at times danced as freely as the topics that passed through her mind, while at others were strictly kept to subjects I knew to garner a positive reaction.  I learnt the joy of hearing about parts of my mum’s life that were previously never mentioned and my curiosity about the patchwork of her earlier life grew. Even then though I struggled to prevent my focus returning to the ever-growing list of things we couldn’t do or talk about.

In retrospect, if I could change one thing from this whole journey, it would be to spend more time at each stage celebrating all that was left of my mum – the good, the bad and the utter complexity in between.

My mum had a fiercely proud personality, often contradictory in its nature, and a stubbornness that any mule would be proud of and in retrospect she plodded on this journey as any mule would – proudly, quietly and without complaint. She would never ask for help and would scorn the suggestion if anyone ever offered it.

And yet, in my mum’s mid-stage of dementia, I feel like I learnt new ways of interacting that allowed me to better help her. By just being with her and holding a conversation that was not threatening and didn’t highlight the missing memories I felt like, for a short period, I could carry some of the extra weight for her on this journey.

At this stage I began to spot the crucial role that emotions played. If I had a positive interaction with my mum, then I could tangibly see how these positive emotions lived on much longer than the memory of the actual interaction. Equally, if something distressed her it was clear that the anger, or hurt, or confusion would long outlast the initial problem. This moved me onto what I think of as the relentless optimism stage. Regardless of the reality I found a positive moment – the new flower that had just sprung in the garden, the fact that my wife was pregnant, that the sun was shining. The smallest of things resonated.

Again, I wish I had turned some of this optimism and positivity to all that she still had to offer at this stage instead of just distracting from all she couldn’t do. Whether or not this would have been possible I don’t know. I do know that I wish I had tried harder.

Later I would read that this importance of positivity wasn’t just my experience but one backed up by studies. One lead author of a study concluded by saying that “our findings should empower caregivers by showing them that their actions toward patients really do matter and can significantly influence a patient’s quality of life and subjective well-being”. It did for me. For some months, a year maybe, I could visit my parent’s house and let my reality melt away and interact with my mum wherever she was at that time. In her mind, if she was milking cows I would comment how good the fried breakfast was waiting for us. If she was worried about where her Dad was I quipped that I was sure he would have a good story to tell over dinner. If I didn’t know where she was in her mind I would look out of the window and say how special it was to be here at this time of year.

This is not to say it wasn’t incredibly hard work. Each visit I was constantly second guessing what was happening and trying to steer conversation away from any cracks in my mum’s memory road. I suspect though that this was just nothing compared to either her experience of living with the disease or that of my Dad’s experience living with her and for many years being her primary carer.

In the final year or so, it became harder and harder to muster these positive emotions. Verbal conversation became a less useful tool and suddenly I felt like I had slipped back to square one – back to being an unwitting bystander to my mum’s journey. At times I found ways around this. After the birth of my son, her grandson, we would sit together with her doting affection and my son performing back a series of giggles and smiles.  It is hard, even after years of suffering from Alzheimer’s to not be cheered by the rapturous laugh of a baby. In the final months though we would more often than not sit in silence.

As these final months ticked by, I watched the seasons slip from one to another outside her care home window. This alone was enough to fill me with sadness to think how she once lived her whole life outdoors surrounded by animals. She was now sat in a thermostat-controlled room – I wasn’t sure of much at this stage, but I knew this was not right, and not what she would have wanted.

With the passing of the seasons so the number of neurons and connections continued to quietly drop. Basic functions disappeared but still, at times, there was the unmistakable facial expression or look that was uniquely my mum. In these last few months I spent more and more time feeling awkward and unable to help her. My weekly visits had slipped to every other week and sometimes longer and as a result the progression of her symptom became more pronounced between visits. By the end I would helplessly sit with her unsure if she knew if anyone was with her not.

Coming one time into the uncomfortably warm care home I found her slumped sideways on the chair. A member of care staff who was spoon feeding her explained to me that she had lost control of body positioning. Her eyes were glazed and focused on nothing in the distance. She weighed just over 40 kilograms. The length and severity of the journey she had been on had taken its toll.

Two days later she passed away.

When people now ask me how I am, I say I’m OK; that I feel both relieved and sad. A mix of emotions. But the more I think about it, the more I think this is the wrong question. There are much more pertinent questions to ask. How have I been for the last 8 years? How have I been throughout this long journey? At what point did I feel that the essence of my mum left leaving her body to keep on the journey? When did grief start? What have I learnt over the last 8 years? Do I feel guilty for not having done more? Do I feel proud for doing what I did? How did all those who loved mum struggle in their own ways to interact with this journey?

And then, and only then, a little for the here and now: how does it feel to be setting off on this next stage of life, on my own journey, without a mum that had, up until now, been a constant in my life?

At this stage, I’m not really sure.

 

Advertisements

10 Comments

Filed under Blogging, Health, Social comment

Not just a whole new human life

OLYMPUS DIGITAL CAMERA

In the pre-dawn light, I sit with my new-born, my first-born child. He is curled like a wrinkled cashew nut on my belly with his hands tucked up under his chin. He gurgles, a bit of milky vomit drips out of the corner of his mouth, and he smiles as he lets out a little fart. He is, in his father’s eyes in these grey hours of the night, the image of perfection.

For the last three weeks, I have been on paternity leave. This time has been invaluable. It is time when I spend hours cuddling my boy on the sofa feeling like I can never be close enough to him for long enough. I know this time will never be repeated and so I breath in every moment we spend together. It absorbs my every being as I consciously and subconsciously devote myself to him. At this stage, it seems to take my all just to respond to his basic needs but I daydream as I hold him. I daydream about supporting him through his life ahead, helping him shape his own future, live his own dreams, fulfil the potential of this whole new human life that sits in my arms.

The moments not taken up by cuddling, nappy changes and feeds are spent with a never-ending rotation of domestic chores. The clothes washing cycle never stops, the house is seemingly never tidy and the babygrows at hand are always too big or too small and need sorting by size. These domestic rituals though add to a profound sense of connection as everything I do somehow feels connected to his wellbeing.

I constantly search for the balance between being caring and just common sense. In one moment, I find myself crouching down on the cold tiles of our kitchen floor. Seconds later in a tired daze I find myself still staring at the new array of washing powders in my cupboard wondering if you really need different washing powder for babygrows?

I still have no idea. There is a lot I still have no idea about.

The last three weeks have been an unprecedented learning curve for me but one that I feel somewhere deep inside me that I have spent 30 years preparing for. It feels natural to be so out of my depth – a billion first time parents all lost at sea.

I imagine first time parenthood as something that equals us all as we all wallow in this strange mixture of cluelessness and powerful natural guiding urges. We stumble through the late nights following snippets of information we garner from friends, family, and increasingly the internet as we continue to learn from our mistakes.

I realise that before anyone has children (time I now refer to as B.C) nobody tells you that a ‘Newborn’ babygrow by one brand might be bigger than an ‘Up to 3 months’ babygrow from another. Why would they? Thus, I now find myself fumbling around for a clean babygrow in the middle of night after he has invariably spilt a bodily liquid or two on his last outfit. I curse the ridiculous, baffling array of poppers that fail in their very specific raison d’être of making it supposedly easier to take a babygrow on and off.

Nobody tells you how are you expected to work all this out without caffeine?

But my wife and I muddle through. As most parents eventually do. And after the nappy has been changed and as the scrunched up ball of tears in my arms goes from a rolling boil of cries to a gentle simmer it feels like he finally starts to forgive my mistakes. He soothes his way into silence as he scrunches up his miniature fists and turns his body into mine. His weight sits lightly as he head nestles into the crease on the inside of my elbow and he gurgles softly and dribbles down my chest.

In these moments when he is fed, clean, and happy he moves into my body like the missing piece of jigsaw that I never knew I was missing. In those early hours when no one exists in the world except for us, I see how he completes me in a way I didn’t know I needed.

I realise as I sit in the early hours of the morning holding my baby boy, that he isn’t just a whole new human life but something that makes me twice the man I was before.

3 Comments

Filed under Blogging

The simple satisfaction of cycling into work along the River Frome into Bristol

My daily commute follows the River Frome into the centre of Bristol. Or I should say, as close as the modern infrastructure built around the river allows. Every day I pass the same weir, the same log spanning from one bank to another, the same bridge where the river finally disappears below the concrete centre forever from sight.

There is a simple satisfaction in observing how the river responds to the weather and countryside that feeds it. After heavy rains the weir can almost disappear under surging dirty brown water washed from ploughed farmers’ fields. A few days of no rain later, and you will be left with a clear trickle struggling to make it down its shallow path.

On days like today, when the temperature drops below freezing, this slow flowing river begins to freeze over altogether leaving sheets of ice floating in the river’s eddies.

Wrapped in thick coats, scarves and hats, the red flushed faces look out as the dog walkers crunch over the frozen muddy puddles. On one section of path, just south of Broom Hill the puddles perpetually sit never normally fully draining. Today though, they are iced over leaving a crisp brown path slicing through the centre of a frost filled field. The small wooden picnic bench which normally sits opposite a small outcrop of limestone perfect for some climbing in warmer months is today frozen white.

About 2 kilometres north of the city centre the River Frome emerges from the steep valley in which it has been travelling and my commute cuts up through the open expanse of Eastville Park. In these winter months, the sun rises directly to my left, beaming gently through the historic horse chestnut trees that cast long shadows over the frozen ground.

As the river fights its way through the monstrosity of modern out of town shopping my route slips alongside the equally awful piece of urban engineering – the M32, the first real reminder that you’re heading into a major city centre. From here the river dips below concrete in places and the off-road cycle route weaves between skate parks, railway bridges and underpasses.

The embedded heat in the concrete on this stage of the commute means that despite the air temperature being close to minus 4, nothing is frozen. The concrete is grey, the grass green and the sky blue.

Nothing of the surroundings for the last bit of this commute gives any hint of the weather or countryside that surrounds the city. It is then that I feel a huge sense of privilege to have such a commute. Also though, I feel a sadness that for most people, even those whose daily commute is outside of their cars, most people in Bristol would not have seen the frozen field that I cycled through this morning.

As I arrive in the office buoyed by the beauty of the seasons, I can’t help but to wonder what impact it is having on us as a society for most of us to never fully experience or appreciate the changing of the weather, seasons and nature that will always sit beyond our control.

Leave a comment

Filed under Blogging, Bristol, Outdoors, Photography, Social comment

The end

It had to come at some point. It just did.

I feel sadder than you can imagine writing this. But this is, for now at least, the end of Hynd’s Blog.

A couple of months ago I wrote about how I hoped to fit blogging into my new job and life back in the UK. It was an ambitious plan that I really wanted to make work because I have, in an odd sort of way, grown to really love this blog.

Sadly though, despite the optimism (something that I like to think optimises the last 5 years on this blog), despite the support from so many friends, family and complete strangers, despite the very best of intentions, I just have not been able to implement this plan.

A number of factors have forced me into this situation. There are two that spring to mind.

Firstly, not having enough time to research topics that are close to my heart has pushed my writing closer and closer to either the descriptive or the repetitive of others opinions. Descriptive and repetitive are two adjectives that act as nails to an analytical blog’s coffin.

Secondly, the metaphorical biting of my virtual tongue that I referred to in my previous post has, sadly, pushed the content on Hynd’s Blog closer and closer to the mundane. Again, not the best adjective to be associated with a blog.

A little about the second point:

I am no longer just having to worry about my own reputation – something that it is easy to be flippant about – but also one of an elected Mayor. Most civilised readers of this blog would find it hard to comprehend the level of sinister attacks some are willing to make against the Mayor. I have little doubt that some of those attacking him would happily do this through personally attacking his staff. It is the opposite of the old adage playing the ball not the player.

It has already got to a stage where not saying something online leads to quite unpleasant personal attacks.

In an effort to not fuel these trolls I realise that I have moved beyond the cautious and into the utterly mundane. With the odd exception, I have not written anything of any particular interest in the last few months.

For someone who is surrounded by inspiration, innovation and interest and who is driven by intrigue into it all, this realisation profoundly saddens me.

I cannot see this situation changing and so part of my decision to end Hynd’s Blog is based on a desire not to see it limp on for the coming months.

Looking back though, Hynd’s Blog is something that I remain profoundly proud of. It has dipped in an out of the top 100 influential UK political blogs, it been visited by hundreds of thousands of people and most of all, it has, on the rarest of occasions, succeeded in convincing people to change their minds on a given subject.

I am proud beyond words of what Hynd’s Blog has grown to be and I hope that at some point, it will have a future.

With all this in mind all is left to say is a huge thank you to you for coming along for the ride – it has been a blast!

Steve

PS – I plan to cross-post anything I publish elsewhere so stay signed up if you want to be notified of when I post these occasional articles!

10 Comments

Filed under Blogging, end of Hynd's Blog, Hynd's Blog