The Closest Thing To Being Cared For

This Christmas sees the end of my work with Daniel, the young man with Early Onset Dementia and a very aggressive form of MS, about whom I have written in earlier posts.

I have worked closely with Daniel for four years and eleven months. His double-whammy of conditions has reduced him to a point where my input is no longer relevant, and it is time for a change for me as well.

I will become a family friend and will remain in touch for as long as he is alive.

Working with Daniel has taught me more than I can fully process. Just speaking from my own personal perspective, it has also given me the fulfilment of working one-to-one with a real person and a real family, without any of the corporate bureaucracy and obstacles to human connection that characterise so much of our welfare systems. It has helped me to end my ‘professional life’ in a way that has rooted me back within the reasons why I chose to work in social care in the first place.

Hopefully Daniel has had a better quality of life than he would otherwise have had.

When he was still able to form semi-coherent thoughts and was still able to speak, Daniel sometimes used to say “I luv yer, Ted!” I love him in return.

I have tried to convey some of the feelings and thought processes from my experience of the last five years into the two poems below. My thanks to comrades in the Borders Writing Group, and to other individual writers who have all helped to hone these poems.

I don’t like sentimental poetry and these are, I hope, truth-telling poems where the meaning is clear despite the depth. They are not the full Daniel story, but they are an important part of it.

This Caring Life is in my own voice.

This Cared For Life is in the voice of Daniel, as if he still had one.

 

This Caring Life

Sticky soft thud.

I didn’t get him there in time.

The first turd has hit the bathroom floor end on,

compacting its ripe stench on impact.

His juddering weight tumbles onto the pedestal

barely in time for all else his body needs to eliminate.

I hold his twitching feet against their descent

onto that yielding brown cylinder on the floor.

I wad the faecal chunk and clean all smears

whilst this man gazes in wonder at what is going on.

I tear my eyes from the shrivelled redundancy of his penis:

once upon a time he urinated with this;

gave himself pleasure with this flesh;

made love to a fiancée with this forsaken thing.

Now gravity leeches the piss from his bladder

through plastic tube to transparent pouch.

His dignity is seen-through, emptied, disinfected

day by day, night by night.

He is still young, but time is without pity –

each merciless day two questions toll:

“if he knew, would this drained, defecated life

weigh more than others sluicing beneath his foreskin,

hosing and swabbing his shit?”

And:

“into just how many shapes does love shift?”

 

 

This Cared For Life

 The world is no longer behind me,

the world is no longer what is yet to come –

I am now –

I am the true maintenantman,

my loved impostor is rubber-gloving my catheter,

trying to take his mind from cloudy smell

by pondering on nothingness,

that mirror of my absent thoughts.

I am here as well as now:

somehow I have reversed into life in the moment,

a Buddhist touching enlightenment’s very nerve,

a dog glued to the opening door,

each essence of the nano-mindful.

But what is ‘now’ to me?

Slight sound in the corner that makes me crane my spasmic neck;

gloss-smooth instant of the morning suppository in my anus;

glimpse of scarlet lipstick on the tv advert;

incontinent jerk of my head at each spoonful of forkmash food;

fleeting scent of diesel from where I once laboured.

I tell you, only those who truly live in the moment

can know that vacuum, that unmeasurable void.

And there he is, loving me in return

but craving my former phases of this inexorable entropy

whilst he strives to imagine the empty encryption of my mind,

grapples these words onto a page that can be touched and read.

I hear him intone: “each merciless day two questions toll:

‘if he knew, would this drained, defecated life

weigh more than others sluicing beneath his foreskin,

hosing and swabbing his shit?’

And:

‘into just how many shapes does love shift?’”

The answer to the first one is: ‘I don’t know’,

And the answer to the second one is:

‘I don’t know’.

I don’t

know –

those three little words

are my fragile span –

my final frailing mindholds.

~          ~          ~          ~          ~          ~          ~          ~          ~          ~          ~          ~

Mercifully, the Early Onset Dementia (it started when he was in his early 30’s) rapidly deleted Daniel’s awareness of how bad his illnesses are. This allowed him to be incredibly postive and even cheerful, and we did have many good laughs along the way.

The poems address the honest reality of what caring means in the later stages of a life.

The title of this post comes from The Square Root of Wonderful by Carson McCullers, a play she wrote some time after her novel The Heart Is a Lonely Hunter.

“The closest thing to being cared for is to care for someone else.”

Ted x

 

 

 

 

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12 comments

  1. Hiya,
    Two great poems, and very honest and insightful. Good that you got feedback from the group, it must be really hard to write about something that is so close to and part of your personal and ‘professional’ life, and like you said, come full circle.
    It sounds like you were both meant to meet, and learnt a lot about each other in terms of the human condition.
    I am glad I was introduced to Daniel. And have lots of good and not so good memories of your time together.
    It is definitely something that would make a great film, maybe Michael Haneke hey.
    Very sad endings in both poems, maybe literally and metaphorically for both of your chapters in different ways. Different outcomes. Really honest, and that is a good thing.
    It would be great to talk more with you on this when we see each other.
    I love you. xxx
    Best,
    Jack

    http://www.jackeames.com

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  2. Sobering and at the same time strangely intoxicating. Although both graphic and brutal in its dispassionate account of how we end up (pun intended), the exhilaration of loving is there. The line from Carson McCullers sums it up. We are so careless, of our own lives and those around us, and yet all that will remain of us will be love. Thank you, Ted, There could be no more eloquent statement of the human spirit this Christmas.

    David

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  3. Excellent work Ted. Powerful and moving, I found these poems to be an accurate portrayal of the frustration and powerlessness of life with a progressive illness. I love the way you have given Daniel a voice as only a true friend could.

    The world needs more people like you, even if you do support Oxford United 🙂

    Respect comrade.

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  4. Hi Ted,

    Really powerful. Great work well put together. Really raw emotions and such a good description of decline and illness.

    For those of us who have had to care for people at the end of their lives, it really resonates.

    Of course, you have had to be involved for a much longer time which must have been very hard, but you have made his life a better thing with your considered and capable care.

    Both sides too. Well done with the words indeed!

    Love,

    Kathyxx

    ________________________________

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  5. Gosh,Ted! I’m in awe of your loving courage and commitment. Your dealings with Daniel must have given a very different perspective to the rest of your life. And I had no idea! Are you likely to be in the vicinity? Whether or not, a very happy Christmas and all the best for 2017.Agxxx

    Like

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