It was a simple request; a favourite place. It was spring and plans were being made for the summer. It was a time of juggling diaries, confirming dates and trying to find somewhere suitable for Dad; wheelchair access, ground floor, ensuite with walk in shower, countryside but close enough to shops, nice view, self-catering.

He would ask over and over again when we’d be going on holiday and I realised that whenever it would be it wouldn’t be soon enough. It seemed like forever since my brother had died yet it was mere months. Dad needed a break away from the endless cycle of waking, washing, eating, medication, losing things and finding them again; thinking; drinking tea or irn bru or that nice flavoured water that Linda brings; the hustle and bustle of nurses and carers and where’s the red button when it’s needed; the stress and distress of watching and listening to other residents’ stress and distress and reminding another that she’s in the wrong room a hundred times a day and that those DVDs aren’t hers; the decision making required for menu choices and activities participation; finding peace to concentrate on the newspaper, listen to the pre-programmed news at 6 o’clock or the soothing sound of Aker Bilk’s greatest hits; watching John and Maureen in a favourite film, laughing at Compo’s antics in Last of the Summer Wine; chuckling at the ongoing decline in Midsomer’s population; and trying to follow Horatio cracking another overcomplicated CSI case in between it all. A break was definitely needed.

The simplicity of the initial request was soon overcome by complications. If you’re a carer you will understand how even the slightest change in circumstance can alter plans at a moments notice. Nothing is seldom ever straightforward. Repeated infections, deterioration in mobility, restrictions on dates and availability all meant that the seven hour drive to Skye was perhaps too ambitious. I ignored the tug at my heart and the thoughts that surrounded that disappointment, pushing them aside. Even then, Dad understood why we had to be closer to home. June and July passed. Still Dad waited, patiently accepting his reliance on others.

It was nearing the end of August and Dad, Stewart and I headed north to the lovely town of Aberfeldy where we’d spend a week. I’d found a house that ticked all the boxes; a peaceful place to stop that was just outside the town centre with its lovely tearooms and shops. I even spotted a place that would be perfect for my own, very special, teashop. But that’s another story. The weather was kind to us and in the morning we were treated to the sight of Highland cows (a particular favourite of mine), deer, lots of squirrels and rabbits and birds that swooped in the hills behind us. Dad and I looked forward to seeing them each day.

It was only natural that Aker Bilk accompanied us and played in the background as we tackled a jigsaw. Dad always loved jigsaws and introduced them to my son. I was reminded of a time when he and David would work conscientiously together, after school, and the sense of satisfaction and achievement on completion. I watched him closely, conscious again of deterioration, and was aware of unspoken frustration; sometimes his sadness. But he never gave up. That’s not who he is.

We introduced him to ‘Band of Brothers’ in the evening which he enjoyed and we talked about his life growing up and those people who were important to him. We talked about young men going to war. He remembered his own son and a grandson in the RAF. He is quiet and becomes sleepy. Dad explains that he’s tired a lot these days, could sleep at the drop of a hat he says.

Fresh air, a pub lunch, browsing round the shops before sitting in the square tucking into raspberry ripple cones, it was still sunny but getting cooler now. It was time to make a move, time to get back. We sat outside the house for a while having coffee and admiring the view. There was no need for conversation and we appreciated the space for silence. There are moments when I can almost read his thoughts and other times the shutters are closed, tight. This is private.

It might not have been Skye but Dad enjoyed the trip and told staff in the nursing home he’d ‘had the best of care’. He’s never been one for compliments but I’m staking claim to that, owning it, and will treasure the memory of our week.

I’d forgotten how tiring and emotional it can be to look after a parent whose independence is compromised. I wondered how I’d managed. For those of you who do it 24 hours a day 365 days a year, you have my admiration and respect. It’s easy, in the middle of it all, to get lost. Sometimes you don’t even feature on the ‘to do’ list because there are other more important things that need to get done. Immediately. Now. This minute. But don’t lose sight of yourself. You’re precious too.

Autumn has arrived and Dad is content back in his normal routine.

Thinking ahead.

“Wonder what they do in here for Christmas?” asks Dad.

Dad’s been in respite in a lovely nursing home since 14 January. I failed to mention that in a previous post for no other reason than I chose not to. Don’t know why really.

A deterioration in Dad’s health after Christmas meant that he needed more care and even though I was trying hard to fill in the gaps it became unrealistic and exhausting. Respite was the answer to a prayer. It came as a relief to both Dad and I knowing that he would have round the clock care and I’d be able to sleep at night without worrying about him. The respite period was initially for two weeks … then three … four … now he’s decided to stay. Permanently. It seemed so straightforward in the end.

How is it going? Well apart from a few minor issues such as his top teeth going missing and the new ones that he’s waited 7 weeks for not fitting him as well as they should so they’re going back, then there’s getting acquainted with his new neighbours and all the different personalities (need I say more?) plus some of his clothes getting lost for weeks on end (now sorted) … all in all he’s pretty content and he likes the staff and surroundings very much. In fact, I’d say that even though he misses the familiarity of his flat and routine, he’s the most calm and relaxed he’s been for months. He mentioned today that as he’s got older he’s had to learn to be more patient. There’s no point in being anything other than that. Everything just takes longer these days but it usually comes right in the end. Being patient and hopeful has had a remarkable effect on him and, despite everything he’s been through this last year in particular, he’s now looking much better.

An important point in the day is watching the news (and CSI of course). Never missing the news means he’s bang up to date with all that’s happening around the world and can tell me all about it, well as much as can remember. Dad’s never had a problem expressing himself when it comes to politics so the government cuts are high on the agenda for conversation and, even though information being passed between us takes longer to process, it’s always good to talk.

Reassuringly Dad still likes pink shirts as well as the bright checked ones evidenced by recent purchases. Over the last few years he has steered clear of dark shades because they depress him (he says). New glasses means that he’s able to pick his horses on a Saturday and read his Bible again. Two things that don’t necessarily go together. We laugh.

Dad fancies a wee jaunt to the Isle of Skye when the weather picks up and I guess no-one can argue with that.

He will often be heard saying, “I know I’m alive when I hear the birds singing in the morning”.

And like that … the gloomy presence is gone.

Indeed.

I wish the rhythm of my life was such that it moved with ease, gently shifting focus from one moment to the next; like the regularity of a heart beating without fluster or breathing that never gives rise to affliction or turbulence. Hushed. Calm. It would be nice, for a time.

The rhythm of life, constant, but not without interruption.

Interruptions that generate happiness and joy are welcomed into our lives. They require little more than a minor adjustment to our day; laughing eyes and smiling faces, hopeful and optimistic, exciting, tingling, reducing stress levels and smoothing away our anxieties. Good news!

Then there’s the temporary blip type of interruption that causes minor upset. A disturbance that annoys us and makes us frown but really no more than that and it has no lasting effect. We can deal with it and normal service resumes quickly enough. Lessons learned and bridges built. Moving on.

Interruptions in 2010 soon blended into a normal pattern, becoming one with the natural rhythm. The now regular journeys to A&E followed by admission and being moved to a ward(s) for a few weeks before returning home again developed into a vicious circle; at first difficult to circumnavigate but soon part of life’s experience. Not without difficulty Dad and I accepted the circumstances, him waiting for something else to happen and me waiting for a phone call; vigilant and over protective as ever.

Looking back there was a certain momentum to this vicious circle and something was always going to stop it from spiralling out of control, something that would help us reassess. We just didn’t know what nor could we have predicted.

It was the fourteenth of December and the death of my brother was sudden. Dad was in hospital at the time.

In that moment the rhythmical beat became powerful, unpredictable and more chaotic. I’d been called to the hospital and had to drive unsure of the route. I had to breathe. Breathing was important. Instinctively I knew I’d be too late. The doctor was waiting and, before he spoke, I couldn’t help but wonder how often he’d done this. He seemed so young. I became silent like in a dream. Cope. Focus. All the time I was thinking about telling Dad … the time, the place, the words, the reaction, the tea and biscuits … playing out in my mind. Weird. I can’t tell him. I don’t have a choice. I need to write a list. What about his children. Breathe.

Such interruptions are hard hitting with a painful and longer lasting impact. We all experience them. They more than disturb our natural rhythm, they shatter it and we struggle to harness the turmoil and its perceived permanency can drown us. In the blink of an eye, our composure is threatened and our understanding of the world around us no longer makes sense. We’re stopped in our tracks. We look inside ourselves, reviewing, remembering conversations and obsessively putting motivations and previous judgements under a microscope. We search for answers to questions that have no answers.

But the rhythm of life is a powerful beat.

I underestimated the resilience of my Dad. Yesterday he was 82 and celebrated with candles and cake, surprises and smiles, new friends and blessings. A welcomed interruption and another story to tell.

And The Rhythm Of Life is a powerful beat
Puts a tingle in your fingers and a tingle in your feet
Rhythm in your bedroom
Rhythm in the street
Yes, The Rhythm Of Life is a powerful beat

Sums up my brother perfectly I think!

I came back feeling refreshed. Quiet and reflective, I felt more relaxed and in tune with the things around me. The presence of peace and contentment plus evidence of a light tan told me I’d undergone some restoration and, even though I didn’t realise it at the time, I could see when I looked in the mirror that the strain was gone from my face. Shock, horror, I was relaxed!

I’d rallied the troops to provide cover for Dad while I was gone and he’d survived my absence and lack of intervention and fussing and was genuinely interested in listening to my stories and seeing my photos. He was good.

But life isn’t long in kicking in again and it got me thinking about how full on and jam packed it all is: the juggling of multiple activities; the hyper vigilance and waiting for the phone to ring; the continued honing of observation skills that help to seek out the smallest of changes; the efficiency that ensures everything that needs to be done is done or can be done, if not by me then by someone else then finding out who the someone else is. It’s no mean feat. The fear and frustration may be hidden but they’re there nevertheless. Tangible. Overwhelming at times. I’m aware of the tiredness creeping in when the happy and sad tears are triggered by the silliest of things in the most inconvenient places.

It would be easy for that long awaited restoration to be overshadowed by helplessness and anxiety. But I won’t allow it.

My hope exists in the precious life we share in this place at this time with all of its unexpected and its familiar that must be honoured. For me, this is a time of connectedness. A time of contentment.

The acute awareness of the need to get the balance right is present in my mind and my world most of the time.  But at times it means nothing.  It’s just a word.  No more or less important than any other.

joy

sadness

struggle

memories

frustration

laughter

loneliness

empathy

tiredness

hope

fear

resilience

… are my words of the week.

Surreal is another.

When Dad woke up in his flat on Saturday his surroundings seemed unfamiliar.  He was scared in an alien place and banged on the door to attract attention.  He pressed the alert, it buzzed and soon a familiar face arrived to reassure him.  When he saw his bed he remembered where he was and, slowly, his life began to fall into place once more.  He asked someone to phone me.

Disorientation had given way to clarity by the time I arrived.  He looked tired, the distress still evident.  Unsurprisingly, he wanted to sleep for a while.  A little later, hunger prevailed and I helped Dad get up. We sat side by side on the edge of the bed and he reflected on what had happened.  Same as before you know, a while ago now.

Silence arrived with impeccable timing, its stillness welcome.  A moment that was both comfortable and comforting as we tried to grapple with the latest episode.  The futility of words realised.

The desire to fill silence is often too great for us.  It is unfathomable and we fear it will consume us.  Our inability to handle it makes us restless and weak and all too soon we give in, speaking when we ought to be hushed and listening; afraid instead of embracing and making space for the precious power within it to do its job; empathetic, gracious, healing, encompassing, majestic, dignified.

I came across this on Sunday.  Perfect.

Voice: Still and Small by Roddy Hamilton

to hold and handle silence
is to hold and handle all of god:

the mystery that shapes us
with no word of explanation
the grace that frees us
with no line of limit
the love that names us
with no name yet understood

the shame that convicts us
that uses no word of blame
the pain that slows us
that speaks no word of shame
the question asked by us
that has not yet been formed

only in still small utter silence
is truth heard

to hold and handle silence
is to hold and handle all of god

The new ailments and new medication that can’t rebuild but can make things a bit better.  The new carers and new caring times organised by the new social worker.  The new coalition and new prime minister means trying not to be influenced by the past and make premature judgements.  The wonderful new fangled television that has with it an anxiety provoking new remote.   The appointment card arriving in the post brings the letter saying something about results.  There are review letters for COPD, asthma, hypotension all meaning appointments.  The visit from the new optician and the inevitable new specs means hiding the old ones to minimise mix-up.  The feet in need of a podiatry home visit.  The forthcoming day trip and knowing that assistance is required and wondering if anyone can take time out of their busy day. There’s always the short break in July if others can get holidays.

There’s too much to think about.  Lie down needed.

Not for the first time I reminisce.

Dad has always liked a flutter on the horses and I remember it being a source of conflict as I was growing up.  It was no secret that Mum disapproved.  But those days are long gone and nowadays his interest not only gives him something to look forward to but helps keep the old grey matter functioning.  Dad’s that is, not mine.

A newly established Saturday morning routine involves scouring The Racing Post with his grandson or son or both for potential winners.  He’s quietly enthusiastic and takes his time.  They know he won’t disclose his choices until they’ve made theirs.  It’s funny and seeing him like this lifts my mood.  There’s a sense of normality about it all.  I’m usually doing something else, like putting the kettle on or tidying or writing lists.  I’m good at that.  But through necessity my role is changing.  It has evolved beyond domesticity as I have now undertaken sufficient training in the art of online betting.  This allows me to place a bet when the boys aren’t around.  It’s quite a responsibility you know and I’ve become quite efficient.

Even though the newspaper is in front him, opened at the correct page and the television is all set, sometimes Dad forgets the racing is on, switches channels and misses it.  Sometimes he remembers the racing is on and in a bid to find the right channel finds ‘Open All Hours’ and ends up laughing out loud at the antics of Ronnie Barker instead.   So the racing is forgotten.  Temporarily.

He’s unlikely to forget to ask how his horses got on.  And he’s quicker still to calculate his winnings.  It’s reassuring to know that, for a time, some things remain the same.

I think about choices and notice that Dad’s independence is giving way to paternalism that’s been lurking in the shadows waiting for permission to come out.  But I know what it’s up to and I’m about to reel it in.

I’ve been asking myself if person-centred care is completely achievable or is it simply aspiration.  What does working in partnership really mean and what about being open to rethinking ‘recovery’ and the possibilities that brings?

I put myself in Dad’s position …

If I wanted a long lie tomorrow morning I couldn’t because the lumpy porridge making carer comes in at 8.20am to shoe-horn me out of my bed (so she can make it) and talk me into having toast (that’s too dry and catches my throat since my stroke) or cornflakes while I take my tablets that I can’t be trusted to take by myself any more.   I should tell her I like grapefruit segments.  My daughter also arrives around this time to make sure it’s all happening.  Oh, believe me, it is.  She bustles about (fusses too much … I wish she’d just sit down and have a cup of tea with me) and makes sure there’s boiling water and Steredent for my teeth and, if I’m not still in my pyjamas, she checks I’m buttoned up, zipped up and tidied up.  While I’m adjusting to waking up, busyness has moved in in the form of two women and taken over my flat and my life!  I’ll be glad when the carer’s done her bit and recorded it in the book she records things in and the daughter’s away to make a difference in the world of mental health because all I want to do is watch the news and channel hop hoping to avoid another episode of Tricia. Sigh.

There is a tendency to group older adults together into one homogenous blob.  I’ve seen it.  We do it with young people too.  My own fear is that one day, when I’m 81 (or, perish the thought, sooner) I’ll end up with a short curly perm that makes me look exactly the same as every other 81 year old because the hairdresser comes on a Tuesday and thinks that’s the best option to last till next Tuesday and I wouldn’t have the confidence to say no (even if asked) and nobody else notices or cares enough.  Frown.

I understand the need to create a world where older adults feel valued and respected.  A place where the words hope and recovery and dignity can be used freely and without fear because people realise the potential in these words.

I’m learning that recovery for my Dad isn’t about returning to how he used to be.  How can it possibly be?  It can’t.  Instilling hope means me stepping back as he leads the way.  My job is to help find ways to help him live as meaningful a life as possible despite the mental and physical health problems that have been verified by diagnosis.  We all long to be recognised as the unique individuals that we are.  This doesn’t stop or change when we get old.  We need care that is personalised and co-operative.

Person-centred care isn’t easy.  It takes patience to be an observant listener with a willingness to exceed expectations.  It’s not a dream.  It’s what we should be striving for.  If we fail we rob people of their uniqueness and make less of their lives than they truly deserve.

Dad and I did a crossword the other night.  It was a joint effort with me doing the reading and writing and him deciphering the clues and telling me the answers.  This amused him.  I found it reassuring.  Amongst the things I remember most about my Dad from my childhood (horse racing, politics, books, sport, special fish suppers, cheese sandwiches, westerns and being exasperated with me doing maths homework) was his love of crosswords.  He was bright, annoyingly evidenced by the completion of The Times crossword on many an occasion.  Or maybe he was just practised.  Well there’s a knack to crosswords, isn’t there?

Awarded the ‘John Coats Memorial Prize for Scholarship’, the Dux prize, in June 1941, I’m proud to say my dad was the clever boy in the class who would become a bricklayer; a skilled builder and perfectionist but without doubt a man frustrated by the constraints that hemmed him in.

Lack of educational fulfilment has been a consistent theme throughout the years and we’ve discussed it often.  For him, the memories are unsurprisingly tinged with a little sadness and disappointment.  Neither bitter nor melancholy but accepting and pragmatic he reflects on an education that might have been.  Being offered a place at a secondary school which formed the top-most layer of a four-layer education system at that time, said much about his ability and potential.  But as the son of a miner and cook there was never any real possibility of attending the selective and elitist institution, the ‘Academy’, even though it was what he wanted.  Apart from the uniform, he needed the bus fair and neither was affordable.  He tells me that the miners were on strike a lot, fighting for better living conditions and pay and then makes a joke about having ideas above his station.  I can’t help but laugh and feel sad at the same time and wonder what might have been for him.

He remembers leaving school at fourteen and looking for work he went to see his grandfather, the union rep at the pit.  He chuckles as he tells the story of how my great-grandfather (obviously a wise man) gave him a ‘kick up the erse’ saying ‘this place [the pit] isnae for you … get yersel up tae Aitkenheeds and you’ll get started in the buildin trade’. The rest is history.

He didn’t know then that, years later, he’d take great joy in playing with Lego and teaching his grandson the benefits of bonding bricks while nurturing his creativity and encouraging his curiosity and intelligence in finding out how things work.  Delving into the big plastic red box (or was it blue?), from scratch, they’d design and build impressive houses … red roofs (or were they yellow?) and chimney pots, inside upstairs and downstairs, rooms and windows and patio doors.  How many times would they dismantle then start all over again in between stopping for lunch or a snack or watching Countdown.  Something neither of them will forget.  I hope.

The years slipped by and the opportunity that could have opened other doors became a distant memory as life took hold and new journeys began.  Imagining the pride and aspirations of that excited twelve year old boy in the man that is my dad isn’t too difficult, if I try hard enough.  But the short-lived excitement of a prizegiving celebration and the outside prospect of another future remain in the past, confined within the pages of his prizegiving book, Treasure Island by Robert Louis Stevenson, with a label that evidences his achievement.  The book sits proudly on his 22 year old grandson’s bookshelf.

Some people talk about the good old days. To Dad they weren’t always such ‘good’ old days.  While he remembers with some hilarity the comedy that existed in a supporting community and being able to leave the front door open without being burgled, these things were never enough when overshadowed by hardship and repression.

Self-determination, minimum wage, further education, equality, value, respect and social mobility.  Words of the future.

He smiles.

We should think ourselves lucky.