Tag Archives: dying

Reflections on my Mum’s advanced dementia

“Death is coming for us all…the day we will have to face the crossing will come sooner than we think. I hope my day is many many years away, but… I don’t want to make the greatest leap in life in a vague dream. I want to have the chance to look it in the eye, to say: ‘You have had me in your sights all your life, but it’s on my terms that I come.’” Hendri Coetzee – Living the Best Day Ever

 

Sitting across from each other on slightly uncomfortable wooden chairs in the care home I watch my Mum interact with one of the staff. The young girl lays her hand on my mum’s shoulder, raises the volume of her voice slightly and asks if “everything was alright dear” and if my Mum would “like any help?”.

My mum looks up at her and smiles with wide unfocused eyes. The staff member smiles back, hovers awkwardly for a moment trying to decipherer what this blank stare means before finally she walks over to another resident. As she makes her way over to a lady sat hunched in the corner I look back at my Mum and catch just the faintest flicker of a death stare from behind her eyes. It was an unmistakable reflection of something deep within her that these days only occasionally surfaces. Today this was a split second of a “fuck off am I your dear”.

Of course, I could have imagined it, I could have simply wanted to see a bit of her old self and so read too much into a distant stare. But, in that moment I think I saw my Mum: proud, wanting to help others – not wanting to waste people’s time in being helped, and ultimately using anger as a shield to hide away from all the insecurities and uncertainties of her life.

She focuses her eyes back on me, a second of surprise or alarm gives way to a meandering anecdote about the walk she believes she had taken that morning over Dartmoor. I ask if she saw any deer and she responds that she had, but only in the distance. This follows a second of silence and a drop in her eyebrows before she asks if I was OK to count? I promise her that I was more than happy to count to which she scoffs and says she doubts it. I once again miss the nuance of her reality.

Asking questions of dementia patients often only increases distress and confusion and so I try to steer the conversation back onto safe territory and say it was a beautiful crisp winters day outside. Her eyes look at me. One, two, three. Seconds pass with no response. I try a new path. I tell her that I recently spoke with her nephew, my cousin, and that he is happy and doing well. One, two, three. Eyes wide. No response. I try three of four times more and get little in response.

I decide not to push conversation. I sit with her in the weak winter sun surrounded by the stuffy air of the car home. Silence.

In the silence my mind jumps to memories at random. I think back to my mum cutting all the fire wood for the house by hand insisting that she was perfectly happy with her bow saw and no, she didn’t want me to come around with a chainsaw. I think back to her carrying heavy trestle tables out of the local scout hut as all the other mums stood and watched. I think about her slapping down any idea or suggestion that she might in anyway need any help.

With these thoughts in mind I smile at her thinking that I might get going soon. She doesn’t smile back. The staff member approaches and puts her hand on Mum’s shoulder and, just before Mum smiles up at her, she gives her a split second of that recognisable death state. The staff member either doesn’t notice or chooses not to.

The thing I feel saddest about when I leave is that Mum has so little capacity, so little control. Despite both the care home and my family doing all they can, we are no longer able to play by her rules and there is nothing we, or she, can do about it. She is left to be looked after by others. She is clearly being looked after well but they also clearly miss the very essence of her. I don’t think I am sad that she will pass away in the coming, weeks, months, or possibly years. I am just sad that it must be like this, not on her terms.

 

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A future full of potential regrets

These are some thoughts inspired by a conversation I had with my fiance about how, at just 28 years old, most of my regrets still sit in front of me. It explores how regrets are also rather complicatedly mixed up in taking the risks in life that ensure I live the sort of life I, and others, can be proud of. A life lived to the full. 

regrets
Regret rests in the past. That is what we are told.

Regret resides in those residual reminders of actions, or inactions, of days, months, or years gone by. The mantra, so often used by oneself to torment oneself is that ‘if only I had another chance, I would have done it all so differently’.

This perspective is one that comes with age. Age forces regrets into memories of days, months, and years that now rest in our personal rear view mirrors, distorted by the lens of time that we all place over our memories.

And yet, even with the most painful of regrets, the ones that loom largest in our memories, the ones that haunt us without warning in the middle of the night, we know where they are. If we have the courage we can turn to face them, we can take action to rectify them, or at the very least, we can learn to live with them.

At the age of 28 though there is something far more terrifying, in my mind at least, than my existing regrets. This is the concept of all the potential future regrets that rest in front of me, in my future. Sitting on the side of the mantra of ‘I would have done it differently’ that still holds the agency to enact the change that could steer myself and others away from regret is ironically both terrifying and debilitating.

My main regrets sit in my unknown future not the past. This is a challenge unique to the privileged and the young – neither of whom normally realise their predicament.

Like a rabbit caught in headlights I can see paths roll out in front of me leading to actions and inactions that hold all the potential for regret. I can see them all too clearly but choose to keep going, to keep walking.

Why? Why not stop now? To explain, I must tell you a little of myself.

I write these words with thousands of miles resting between me and the friends and family that I grew up with. Each mile serves as a barrier for why I can’t, or worst choose not to, spend the time with the people that mean the most to me.

The future holds a deceptiveness that leads you to think that it is infinite. Just as you fail to appreciate the beauty of the rising of the sun because you think it will always happen, so you can also fail to take the time or appreciate the beauty in being able to pick up the phone and speak to your parents, friends or loved ones.

Despite the warnings, the heart attacks, the high blood pressure, the years passing of my parents, I convince myself that the future will hold the same potential to always be able to pick up the phone, jump on a plane or even send an email to them.

This is of course not true. Life is finite.

Simply, you never appreciate what you have until it is gone.

I am all too aware that it is this that holds the potential for so much regret.

With this foresight, there is a question of why not take action now – look for a job back home sooner, close to friends and family? Why not take action to limit that potential for regret?

To answer this question, an explanation of my parents is needed. From the earliest age they encouraged me grasp opportunities with both hands. To fight for them and to appreciate them to the fullest.

All too clearly I remember both my parents repeating the phrase ‘just give it a go’ throughout my childhood.

Every day I feel the importance of living life, of giving it a go. I push myself to do things, to be bothered, and most of all to appreciate every bit of it – even the supposed failures. I think for that alone my parents are proud.

Life has thrown me around geographically. It dropped me on this earth in the UK but has since taken me all over. I sit now in East Africa thousands of miles away from the parents that made me who I am. I live, I make mistakes, and I regret them. But even these regrets I try my hardest to cherish and to savour because I know that these regrets are signpost to risks taken, choices made and a life lived to the full.

The biggest potential regret of not spending enough time with my parents should they die before me rests in the future alongside other potential regrets. I have no idea how I will react if suddenly the ones I care about are taken from me, but for now at least, that is a question for tomorrow. Today I plan to live every second to it’s full.

My regrets reside in front of me, but so does the rest of my life. I know I can’t have one without the other.

As always, please do contribute comments and thoughts below. 

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