balance

It’s all about balance you know.  Life I mean.  Apparently.  And there seems to be an endless supply of people providing gentle reminders of this on a daily basis lest I forget.  The message is clear: a balanced approach will restore equilibrium to all areas of my life, minimise my stress levels and keep me sane.  It’s the good news that people who practice it passionately feel the need to share and why shouldn’t they?  Show offs.  Maybe I’m just jealous.  Maybe they’re just pretending.  Maybe their lives are as unbalanced as mine is.

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.

space for silence

After another short hospital admission things seemed to be back on track but unpredictability had other ideas.

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

old age doesn’t come itself

Even for Dad there is much to learn and absorb and remember.

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.

routines … old and new

I was in the newsagents at the weekend and found myself discussing the advantages of online betting with a friend.  We laughed and I realised and accepted Dad’s new influence and the need I have to assist him.

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.

porridge and stuff

Since Dad came home from hospital it’s become part of my morning routine to visit him before I go to work.  This is apart from my evening visit which I’ve come to enjoy very much.  I’m not really sure if the morning ritual is to make me feel better or to make sure he’s getting a good start to the day.  I guess it doesn’t matter much.  I drop in at the newsagents to buy a newspaper and fresh rolls.  A daily paper has been a priority for Dad as long as I can remember and the rolls mean he has something to eat in the afternoon when his stomach tells him dinner time is too far away.  If I don’t bump into the carer I check he’s had his medication and breakfast and that he’s got everything he needs and that the place is tidy.  If I do bump into the carer and it’s the one that makes thick and lumpy porridge (she can only make it in the microwave apparently and he doesn’t have a microwave because he almost blew the last one up!) I’ll make it instead.  I’ve become much better in the porridge making department and realise that the phrase ‘novice to expert’ doesn’t only belong to the nursing profession.

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.

but for the price of a bus fair …

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.

the book

Dad had found a Gideon Bible in the locker at the hospital and was reading it one afternoon when I arrived for visiting.   It was a pity the print was just too small for him.  He told me how important it was that he had a Bible he could read at home and said he wanted to buy a large print version.  So that was at the top of our priority list for when he got home.

Of my parents, it would be true to say that Mum was  the ‘churchy one’, the church member who was comfortable talking about spiritual matters.  More than anyone I have known, she believed in the power of prayer and trusted in God when her life, in real terms, depended on it.  The parent who said prayers with me at bedtime and introduced me to what she believed to be the fundamental truth of the gospels.  Her Christian faith was evident in the way she lived her life and this made it real and engaging, attractive to others.

I never knew Dad to demonstrate his beliefs through church attendance although he speaks often of Sunday School when he was a child.  He would never engage in the types of conversations we have in the wee small hours about the meaning of life.  That’s not him although he does have a liking for Mario Lanza singing Ave Maria and The Lord’s Prayer if those count!  I’ve never known him to deny God but am aware of his struggles over the years and even understand some of them.

On one of the sunny afternoons last week we set out to buy the new Bible.  This proved to be a pleasant experience as the girl who assisted us was kind and very patient.  She provided a chair and laid out a number of Bibles for Dad to browse at his leisure.  He knew what he was looking for and smiled when he found it.

He settled on a beautiful burgundy leather bound NIV and as he paid for it I knew that it would become a family treasure.  I liked that idea and found is hugely comforting.  Maybe I should get him to write something inside it.

We shared a slice of apple pie and a pancake over a cup of tea while we chatted (well I did most of the talking) but I could see he was becoming tired.

Back home and settled in his favourite chair, quite out of the blue, he began to recite something I’d never heard before:

There’s a book that my Mother gave me
That I read when the long day is through
And the stories of old
In leaves edged with gold
Guide me whatever I do

For I know in its worn old pages
I shall find peace of mind when I look
And the wisdom of all the ages
Will be there in my Mother’s book

It was incredibly moving just listening to him and I had to ask what it was.  It turns out these are lyrics from a 1950s song called ‘The Book’, sung by tenor David Whitfield.  Ah!  He hadn’t heard it for years but the afternoon’s purchase triggered a nice memory.  I managed to find it on iTunes and now he can listen to it at his leisure.

While Dad is going through the process of losing his short-term memory he is re-discovering and re-connecting to the past and to his story.  The things that make him who he is.

It’s not difficult to make our encounters with older people worthwhile.  We only need to scratch beneath the surface to be opened up to a world that existed before we did but, more importantly, still exists because they do.  Amazing.

realisation

Over the years Dad has (mostly) been a quiet man.  I guess it’s no coincidence that, as a big John Wayne fan, his favourite film is of course The Quiet Man but that’s incidental.  At times I catch him deep in thought with a far away look and understand only too well the need to make sense of what’s happening and grapple with the implications.  Not only the dementia but recent revelations about physical health.  There are times when the days don’t seem real to either of us.  It feels like we’re moving, observing, on automatic pilot.  Weird.

It was Thursday evening and I’d had a bit of a day.  I needed to relax.  A thoughtful friend had given me lavender oil and a burner for Christmas and it seemed like the ideal time to sample it.  I had the house to myself, the bath was ready and lavender filled the air.  Actually I’d failed to heed her warning and perhaps been too heavy handed with the aforementioned lavendar so it was a bit on the strong side.  But this wasn’t going to phase me.

I was enjoying the peaceful and soothing setting, distracting my thoughts from the day’s events and determined not to let the now overwhelming aroma to get the better of me.  I concentrated on happy times and places.

The phone rang.

Dad had fallen and was on his way to A&E.

After a bit of a palaver and trying to contact my elusive brother I made my way to the hospital to find Dad confused and bleeding.  Suddenly he looked much older than before and frail.  The doctor told me he needed stitches and an overnight stay.  Oh that didn’t go down well.

As it happened, the overnight stay turned into a fortnight during which time he was assessed, monitored, introduced to new roommates and new medication.  On admission he was distressed and confused and I wanted the best for him.  During his first couple of days, his mixed up thoughts and disorientation meant that he found himself on a number of occasions wandering down the corridor to where the ladies were looking for his room.  Well that’s what he told me.  The nurses didn’t appear very amused by this and when he finally got his bearings, Dad and I saw the funny side of it.  For him, the days were long and, other than someone helping him get dressed in the morning, mealtimes and the ‘boy’ who brought the tea, he was left pretty much to his own devices.  For him between visits seemed like an eternity.  For me there was never enough time to get everything done.

He’s now home, stitches removed and although beginning to look much better the new meds are making him tired and he’s definitely less steady on his feet now.  Dad’s beginning to realise that he needs more help with the small things.  Rather reluctantly he admits that he’s not that good with buttons anymore and I can see frustration and anger creeping in when he can’t work out which way things go.  It’s difficult to stand by but he’s a proud man and intervening too early wouldn’t help.  Putting clothing on back to front is a particular favourite but the comedy that was once  attached to this wears on and off now depending on his mood.  He doesn’t want someone to do it for him but that a ‘someone’ will simply help him get it right.  Until the someone is appointed from care services I’ll be that someone.  But, according to Dad, I’m someone who fusses too much.  When I think about it he’s probably right.

Dad likes pink shirts.  He tells me he suits pink.  I see that he does and that he looks younger.  I tell him so and he just sits on the side of the bed and laughs.  Briefly we talk about mum then the subject is changed.  Now isn’t the time.

He’s all set and looking forward to lunch and a trip to the garden centre with his son.

Normal service is resumed meantime.

home in time for dinner

A week after the dementia diagnosis, Dad and I found ourselves attending another appointment at another hospital.  This time for a bone scan.  He’d been referred by the urologist.   I’m thinking that he was up early and must be tired and that this is all a bit too much for him.  I look and see how smart he is in his suit remembering how he likes to wear a shirt and tie (a generation thing) and recognise beneath the tiredness, a stubbornness and desire to just get the bloody thing over and done with.  The actress Bette Davis once said that ‘old age ain’t no place for sissies’.  You bet it isn’t.

Signage could have been better but, with the application of Crystal Maze like problem solving techniques, we found our way to ‘uclear medicin’ and Dad announced his arrival at reception.  After fifteen minutes he was called by the nurse who would administer the radioactive injection required prior to the scan.  It never ceases to amaze me how trusting people are when they’re placed into the hands of someone in a uniform in a hospital or when someone has a stethoscope around their neck.  The nurse with no name explained the procedure in a very slow and deliberate manner then asked Dad if he understood what she’d said.  He looked at her in his inimitable style (I think I might have inherited that look) and told her it wasn’t that difficult.  He might be old and it might take him a wee bit longer to process information these days but he always likes to remind us that he isn’t stupid!

We were shown to another waiting area where we found more patients waiting for scans.  They seemed a chatty bunch and it wasn’t long before I was hearing all about their ailments while they tried to outdo one another.  At times it was quite comical and we had a bit of a laugh.  The nursing assistant talked a lot about darts in Las Vegas.  During this time Dad pretended to sleep.  Wish I’d thought of that!

Over a few hours we watched daytime tv (dire) and ate our way through the food I’d prepared earlier (yummy and much better than hospital sandwiches).  Dad drank lots as required.  The group dwindled and his name was called.  It would be another hour before the nurse with no name walked along the corridor with him ready for home.  He looked worn out.

As I helped him on with his jacket I wondered how he felt?

He wondered if he’d be back in time for dinner!

if it’s not one thing it’s another

It’s dementia, of a vascular kind.

It was the morning of Monday 15 March 2010 when Dad was given a reason for the forgetfulness and confusion that have plagued and frustrated him over the last few years.  It’s been a slow process now compounded by a steadying decline in physical health.

It had taken a great deal of persuasion and the promise of not being hospitalised (by me) to get him to the appointment and the news was not a surprise to either of us.  The psychiatrist was gentle and respectful, considerate in the way she spoke to make sure he understood.    He did.  She took her time and was positive in presenting a message that was clear.  He had a dementia, mild and stable.  She encouraged him to continue with the things he enjoys, the things that make him happy.  I’m guessing that probably entails the occasional trip to his local with my brother and searching for films starring John Wayne and Maureen O’Hara to add to his extensive collection.   As his daughter it’s what I hoped for.  As a mental health nurse it’s what I expected.

He’d identified the Highland accent and joked with the consultant, thanking her as we left.  I couldn’t help but smile.  A relationship was born.

We went for an obligatory and much needed cup of tea afterwards.  Dad checked out the racing section of his newspaper while I waited in the queue.  Sitting in the supermarket cafe eating bacon rolls and drinking the tea everything seemed so normal.  He tells me that suddenly he’s beginning to feel old.  He’d even noticed a few more grey hairs that morning.  We laughed.  He’s 81.

This is our journey.