Looking Beyond …

thoughts and deliberations .. a theme is too restrictive

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Savouring the moment

The setting sun

We passed through ‘volunteers week’ about which I had much to say, and then into ‘carers week’; but I was too busy caring and volunteering and doing the things that fill life, to hold on to my thoughts and put them into presentable format.  I have wanted to post so many times of late, but frustratingly, the opportunity has not been there and the captured thoughts have escaped.  So instead, I am sharing a few words, hastily put together, from the weekend – I hope it is not too obscure!

An extravagantly sized circle of bright burnt orange sits tauntingly on the horizon, as mesmerizing as the big wide open eyes of a young child.

It is just a moment.  A moment enough to fix the image in my mind.  A moment enough to create simultaneous longing and awe and draw out a desire to share.

The setting sun becomes a backdrop to the silhouette of one of nature’s perfectly formed trees.  I glance fleetingly at my camera which sits within reach and yet out of bounds.  For what good is the image unless shared?  And the moment is gone.

The glorious sight disappears behind the urban landscape that is taking over the foreground as I drive along the motorway.  And then, as I already mourn its loss, it reappears in perfect view for another brief taunt, before slipping swiftly under the horizon leaving only its leakage to flood the sky with oranges, yellows and reds.

I arrive.  A cosmic shift.

The dining table offers no invitation and yet presents an eclectic feast for my eyes.

An incongruously  placed football takes centre piece. It’s large red sphere referencing me back to the setting sun.  Files with the latest hospital appointments; evidence of this week’s campaign against the powerful; medications; tools of measurement; tea and an empty milk bottle all surround the ball.  An open laptop awaits my attention.

The leakage in this table display is toast crumbs.  When all else is cleared away, the toast crumbs will remain.

Make of this what you will – there is much in it for me.

Capture those precious moments and savour them, for the special carries us through the mundane.



This is now their life

nursing home wishing well

nursing home wishing well

Three Rubys sit together in the corner of the nursing home. Ruby One is struggling to uphold her position of power. She is the longest serving resident and observes all interactions intently with her fiercely glum stance. Ruby One is a veteran. She has been challenged many times as new arrivals come and disturb the equilibrium with their unsettled behaviour and lack of respect for the resident hierarchy. Ruby One knows exactly how things should be for everything to run smoothly. Key to her power is that she is the keeper of the lounge buzzer. All calls to staff therefore have to be approved and activated by Ruby One.

Ruby Two arrived just a week or so after my mother. She has not yet come to terms with life in the nursing home. Ruby Two is unsettled and lives in discomfort and confusion. Unlike Ruby One, Ruby Two can get up and walk, but nervousness and a vulnerability means that a house rule appears to be in place to prevent this happening, at least not without the assistance of staff. Ruby Two’s great asset is her hearing. She is not always sure which conversations in the room are intended for her ears but she is one of the few who hears what is said from afar, and responds.

Ruby Two is placed directly opposite Ruby One each day. They both have window seats. If looks could kill… Nevertheless, over time, it can be observed that Ruby One has a caring heart beneath her hard shell of an exterior. She means no harm. On those odd occasions when the power battle is not in the process of being played out, a modicum of attention to her plight, together with a little understanding, brings out a softness through which the occasional half-smile has been known to emerge. Ruby One knows from experience that the sooner Ruby Two can settle down, accept where she is and allow the house rules to dominate her existence, the happier everyone will be. She has made it her business to convey this. This can be done quite sufficiently with a minimum of spoken words.

Ruby Three is the latest addition to the Ruby mix. She is the quiet and compliant one. She does not complain and she does as she is asked. She eats whatever is delivered to her table, speaks only when spoken to and causes no trouble. The less careful observers might not notice that Ruby Three is constantly trying to ensure fair and adequate attention for all participants at the daily lounge party. Careful observation is needed, partly because Ruby Three is very softly spoken. It would be easy not to notice that she has spoken. The sort of conversation that brings Ruby Three the greatest satisfaction is an almost whispered exchange in which she is able to include a kind word of encouragement or a thoughtful reflection. When the situation requires, and sometimes when it doesn’t, Ruby Three will use her whispered observations to initiate a mission of rescue on behalf of another resident or visitor in need.

Unable to cope too well with the presence of three Rubys in such an intimate environment, Ruby Three has sacrificed her name. The staff now call her Jenny.

The Rubys are slowly learning to inter-relate. This is now their life. It is not a life that any of them have chosen for themselves.

Today, as we prepare to take Mum out in the wheel chair for some fresh air, Ruby One is saying to Ruby Two, “don’t look so miserable”. “The problem is,” says Ruby Three quietly as she turns to speak to me, “she never gets out, visitors come, but they don’t take her out”. “Do you ever get out?” I ask. “No”, says Ruby Three. “I haven’t been out since I arrived.” She arrived about six weeks ago.

One of the assets of this particular home is that it is in a village. There is a village shop, a church across the road, a village hall, a duck pond around the corner and a friendly pub serving good food just a few steps away.

Mum now shares her life with the three Rubys. They sit day by day together observing each other and driving each other to occasional interactions. Others come and go, but Mum and the Rubys do not have the freedom of choice to come and go as they please. Their mobility does not allow them this privilege.

As we exercise our freedom to get up and come home, Ruby Three speaks once more, this time on behalf of them all.

“Thank you for brightening up our day” she says.

It doesn’t take much to make a difference.


“Orchestra” – the joys of being a team player

At the weekend, a group of us were out for a meal and each of us was presented with a heart on which just one word had been written.

Mine said “orchestra”.

HelenSaying Orchestra

Perplexed, I started searching my memory and the words on the plaques of those seated around me for some sort of clue. There was indeed further expansion on this one word proclamation contained within an accompanying card, but the word itself got me thinking about the value of being a team player.

Performing in an orchestra or a choir is the perfect example of all things coming together for good. I have done both. As a young aspiring violin player (read here a note of sarcasm: I don’t remember the violin being my idea – the cello, or better still double bass, would have been more my style) I can’t remember making a single noise on that instrument that might even in politeness have been called pleasant. My embarrassment at the abrasive sound I was producing was such that the weekly lesson held at the back of the school hall was something approaching torture by humiliation. The hall also served as the private study space for ‘A’ level pupils who had free lessons.

One of my strongest memories of school was the occasion when on one summer’s day the violin lesson situation got a bit overwhelming.  It wasn’t long before I reached the absolute peak in the creation of excruciating screeching whilst in slow motion I collapsed to the floor in a spectacular faint. I still shudder at the memory of this experience and wonder just how any head teacher thought that space shared between a single 11 year old beginner violinist and scores of sixth form pupils tasked to undertake private study for an hour, was going to suit the purposes of anyone involved.

Contrast this memory with those I have of playing in junior orchestra. Disregarding the most probable quality of the overall sound as the 40 to 50 strong orchestra performed the obligatory twice yearly concert, these occasions rank highly as the most uplifting and life affirming events in my school year. (There is not much competition in that respect, but never the less, let’s not detract from my point).   Putting in my very best efforts, with a real desire to contribute something positive to the music making, I marvelled at the rich harmonies that filled the air and that I, with my small contribution as second violin at the back of the pack, was a part of.

Being part of a choir is equally uplifting. An honest self appraisal at an early age left me in no doubt that my singing solo was not going to be an edifying experience for anyone, although I confess to a single brief and uncharacteristic karaoke lapse whilst on holiday with family in Cyprus. I put this down to a touch of sun stroke affecting my ability to think clearly. Either that, or being spurred on by my son’s  show stopping performance of ‘stairway to heaven’ I reached the belief that his talent had been acquired from me. Whichever, it was a mistake and will not be repeated. Singing with a choir however is an entirely different matter. Somehow a group of rustic voices (rustic: as in simple, artless, unsophisticated) come together as complex, richly layered powerful choral pieces. This never ceases to amaze and delight me.

The thing is, that all the voices and all the instruments are required to play their part which in isolation doesn’t often amount to anything exciting. They have to show up, pay attention to the conductor, purposefully blend with the other players, and even at times rescue or carry the other players. The result – given commitment, team work and a good leader – can be outstanding and most certainly thrilling to be a part of.

This all serves as an excellent reminder to me that it is perfectly possible to enjoy success, without being at the top of our chosen field. Being a valuable team member and using the skills that we have, to contribute to an overall bigger picture is just as exciting and valuable.

As I thought more about what the word orchestra might have to say to me,  I came also to think about how we as individuals can combine each of our own assortment of skills and natural abilities to become like an orchestra with every aspect working together to bring a deliberate tune.   Alternatively we can allow these same skills and abilities to work against each other, with no direction or discipline resulting in unresolved harmonies and just a loud noise.  After all, our biggest strengths can also be our biggest weaknesses. It is not a matter of wishing we were more skilled at one thing or another but a matter of bringing all that we have together to make our very own unique piece of music.

So that is thought for the day over.  I hope to update very shortly on the career progress front.


Two sides of a coin


After my last post, I felt it prudent to make this next entry more upbeat in order not to alienate my readers.  I speculated on which aspect of my forthcoming week of freedom that I would find to focus on and write about.  There were few plans for the week – unusual for me – making it a welcome space to spend time with my sons, enjoy the peace afforded by the now decreased activity of the builders, and take a deep breath before my first internship begins.

So when I was greeted home from an evening of singing early on in the week, with the news that my father had been readmitted to hospital after dialling 999, it quickly became clear that the week would be dominated by experiences similar to, but perhaps more intense, than those I had left behind and written so painfully about last week.  Early the next day, I was back on the road travelling North and reflecting on the possibility of viewing events from a different perspective and taking a more positive stance on what I have to offer in encouraging my parents in their difficult lives.  Focussing on this, over the past couple of days, has helped me to see some things that might otherwise have slipped by unnoticed.  It would have been perfectly possible, and just as honest, to have written up these last couple of days in the same vein as I did last week but I have found, that there are indeed, two sides to every coin and always more than one way of looking at things.

So here it is, the other side of the coin:

Sometimes, things are just meant to be.  As the crisis unfolded through the late hours of the evening, I realised that apart from the dozen people coming round to share a meal the following night, a couple of ‘coffee’ dates, and the fact that my youngest had only just arrived home for a three day visit,  there was nothing standing in my way of rushing up to offer support and make sure that both Mum and Dad could be properly cared for.  If you detect a hint of irony, and some will, then I admit that letting go of those things did matter, but friends and family are easier to make peace with than employers and disappointments don’t last for ever.  There are a myriad of other complex arrangements that I might have had to untangle and do battle with my conscience over and I was truly grateful that I had negotiated an extra week of rest between jobs, making the decision to run to assistance a bit of a no brainer.  Truth Number One – sometimes just being available is the biggest gift we can give, and all that is required.

To say that I leapt out of bed at 4.30 am the next day and sang along with the birds as I made my three hour journey, is stretching the truth to an unrecognisable position.  My natural poor ability to rise early in the morning, and my truncated sleep opportunity at both ends of the night were never going to lead to a bright and breezy disposition at the start of the day.  The fact that I was up and out of the door  just 10 minutes after my planned departure time, that I steered my way through the driving rain for three hours managing to refuel before the car ground to a halt, and that I arrived safely in good time to relieve the night carer from her already extended hours, was achievement enough for me.  That I managed to stop, at precisely 8.00 am and get through to the GP practice was a bonus.   Truth Number Two – it is OK to be pleased with your achievements, even if  they are personal ones that might present someone else no problem at all.

As I arrived back at the home I grew up in, I was met at the front door by Jo.  Jo and I had encountered each other – admittedly in an intimate situation – for the first time only last week, but she greeted me enthusiastically, by name, and as if one of the family.  Clearly she had everything under control, and by the time I  had exchanged hellos and kisses with Mum, there was a welcome cup of tea in my hand.  Together, we chatted, sorted and caught up with medication complications – with a little assistance from the GP who was able to fill us in on the antibiotic treatments that had been started, substituted and then completed during the course of the last week.  The strategically placed yet empty packets, with their confusing instructions, could be ignored.  Together we agreed what plans might be in the best interests of my parents over the coming days.  The ‘boss’ of the care company arrived to pick up her charge and to chat about requirements over the coming days and I was struck by her overriding concern to work with the family in providing what is needed, rather than to protect her business needs and profits.  Truth Number Three – not all the professional agencies work against you all the time.  It often feels like the rest of the world has no understanding, but I was able to take encouragement in knowing that the caring agencies really can care and are often more flexible than they are contractually obliged to be.

Jo had arrived at 11.30 pm the night before and taken over duty from a neighbour who had been called in (or did she just turn up?) when the ambulance had arrived.  Having a neighbour on hand, who without fuss or flinching, will voluntarily clear up unsightly deposits of  blood, decipher the system for using the washing machine and the clothes airer pulley system,  tackle a day’s worth of washing up, clean, administer eye drops and medications according to vague instructions given over the phone, attend to Mum’s personal care, and deal with the inevitable concerned phone calls – for several hours – is quite remarkable.  What a blessing it was to have arrived into this situation where all things domestic had been attended to.  I was moved and heartened by the lengths to which this quietly caring and unassuming neighbour had gone, in order to assist.   Truth Number Four – people can be remarkably generous and willing to help out in an emergency.  It does us good to allow them to.

With Dad in hospital for an unknown period, and Mum needing 24 hour care, sorting things to enable me to come home was likely to prove challenging.  But remarkably, for the second time in less than a week, the local cottage hospital which also provides respite care, confirmed that they were able to offer a bed for an indefinite period of time.  They know Mum well.  Very well. It is the perfect place for her to go to and no one in the family worries about how well her needs will be met during her stays there. There have been several times in the past couple of years, when Mum has been waiting days or weeks for a bed to become available there, in order to provide a place where she can rehabilitate following extended hospital stays.  I was therefore grateful that arrangements for respite really were as simple as getting Mum into the car later that day, and delivering her into the hands of the trusted staff there.  Truth Number Five – having tried and tested respite care arrangements makes all the difference in a crisis. 

After dropping off Mum, I would then be free to move on to the county hospital and see how Dad was getting on.  Reports were that he had fainted in the hospital earlier that morning and was undergoing tests.  Remarkably, the hospital was happy to share whatever information I needed – none of the usual difficulties of patient confidentiality.  Perhaps a couple of questions on a more practical level might not have gone amiss. This I realised, when packing a bag for Dad proved a little more problematic than it had been for Mum.  To begin with,  I had no idea what he had with him at the hospital (this turned out to be slippers and pyjamas only) and then, I found that I was not acquainted with where he keeps or puts aside his most essential of belongings (indeed, half the time it transpires that neither has he).

Whilst packing, I noticed a potential spanner in the works.  I spotted reference to a hairdresser appointment on the calendar.  If this was for real, it would seem sensible to delay the afternoon’s proceedings and enable Mum to have her hair done. Who knows when the chance may next arise?  I therefore referred to the list of phone numbers that had been carefully written out by hand on a sheet of card.  The list had been made readily accessible and legible for Mum in times when she was more able and willing to use the phone to make calls.  During the course of the day I used this Godsend not only to find numbers for the hairdresser, but also to contact the GP, both hospitals, the care agency, the milk man and neighbours.   A couple of sneaky shots taken with the mobile phone, and I now have all the information available to me from home on future occasions.  Truth Number Six – information is key.  Yes, most things can be found on the internet, but a handy written-out list of useful telephone numbers can save a lot of stress.

Pleased at having stuck out the wait for the hairdresser, and unpacked Mum and her belongings at hospital A, I was on my way to visit Dad at hospital B by 4.30 pm.  What an enlightened ward he was in.  Visiting hours 11 am until 7.30 pm.  The flexibility afforded by this had made the day manageable.  The usual restricted one or two hour windows at both hospitals would have caused impossible schedules but as it was, I could visit Dad,  and then take the ten mile journey on to Mum to put her mind at rest.  They have no means of communicating with each other due to Mum’s hearing problems and Dad’s lack of conversion to the benefits of the mobile phone.  I learned that Dad was stable, with no more bleeding, but set to stay at least another night.  He greeted me with heavy snoring followed by appreciation and my mind was at rest that he was on the mend.

When I finally arrived back at base, I was able to use up the ready meal that was about to pass its use by date, taking pleasure in the knowledge that this would most definitely earn me Dad’s favour – he is always keen to avoid waste and would be sure to be checking up on the situation before long.  Whilst pausing to eat, I wearily realised that with both parents out of the house, I had an unprecedented opportunity to clean floors, bathrooms and carpets without risk of the advice and pitfalls that usually cause such tasks to be abandoned before they are anything more than a helpless thought.  The opportunity was taken the next morning, as the task that needed to be done was to find the missing items that I had mistakenly assumed to be with Dad at the hospital, along with the missing spare key that was no longer in its appointed hiding place.  I thoroughly enjoyed the treasure hunt that followed, not only did I find  Dad’s keys, house spare key, wallet, missing paracetamol, two mobile phones and their respective charging units but best of all, in the process, I unearthed the key safe that I had long since purchased to go on the outside of the house, and then spent the next two years looking for.  As I reported to my Facebook followers that evening, I went to bed tired but mildly content.  Truth Number Seven – nothing compares to the satisfaction of finding something after days, months, or even years of searching.  Perseverance can pay off! 

The following day, leaving the house remarkably proudly, I ventured this time to Dad’s hospital first.  His nurse had clearly got the measure of him by now and I was proud to find that he had been causing staff some amusement with his insistence on knowing when he might be able to climb a ladder once more.  Using this veiled threat as evidence to suggest that another night in hospital might be a good thing for all concerned, it was agreed (in the safety of the nurses station)  that this would be in the best interests of everyone.  Leaping up to find me a visitor’s chair (after all he was my host) it became clear that Dad was back to his old self and had his own ideas thank you very much.   It was with some difficulty that I successfully extracted myself from the hospital leaving Dad to argue it out with the nurses for himself.  I did however manage to get the hospital to agree to arrange him transport home as my parting gesture and thankfully it was unnecessary for him to carry out his threat of self discharge to a taxi in slippers and pyjamas.  Apologies to the man in the next bed whose condition meant that laughter was uncomfortable in the extreme.  Truth Number Eight – some of the most difficult personality streaks in your family can turn out to be pure entertainment and amusement to those around them bringing pleasure and lightness to their day.

On to visit Mum before tackling the long journey home.  She was up, awake and alert.  Which is more than could be said for me by now.  I was seriously wondering how I might survive the drive home without stopping every ten minutes or so.  I had already been on the wrong ward looking for Dad, and returned to the wrong car park after picking up bread at the Co-op and now I was dropping to sleep whilst Mum and I grasped each others’ hands with my head resting on hers.  For a precious moment, I had my Mum back.  She was looking after and caring for me as I was metaphorically collapsing into her arms.  Truth Number Nine – whatever the circumstances, there can be precious moments that are priceless and make everything worthwhile.

As I filed my report to Dad by phone, I became perplexed that I couldn’t get the key to open my car door and rather perturbed that I seemed to have parked it so badly.  A whole minute later, I decided that it might be better to try the right car.  My journey home was extended due to accidents on the road, but I didn’t find it necessary to stop once.  I was fully alert for the full duration of the drive….constantly yawning but at the fist sign of sleepiness I was able to say to myself  “I can do all things….”

Just maybe, engaging in a positive outlook and being grateful for the things that do work out well enables us to believe that all things are possible.  It has certainly helped me to feel satisfied that I played a useful role and have been of value over the past few days.  Perhaps I can even have more confidence in adding the descriptor of caring back on my CV.








Caring beyond the cuddles….


Just about everyone who has ever met my mother says she is a ‘sweetie’.  She is delightful and no trouble at all.   I beg to differ.  My mother is not all sweetness and light.  She is 92, unable to walk and only able to stand for just a few seconds with support, her arthritic hands have taken away her ability to grip or pick things up, her hearing enables her to pick out only the fewest of words spoken by those fortunate enough to have a voice that resonates at the right frequency, and her sight is poor, very poor.  Now all this in itself does not exclude her from being delightful or a ‘sweetie’ but no trouble at all is about the last phrase I would use when describing  my dear mother.  The deterioration of her health excludes her from all of the activities that keep a person occupied and all she has left is her thoughts and thankfully, her ability to speak and communicate.

I mention this, because I like to see myself as a caring person.  It is one of the attributes that I feel able to ascribe to myself and use without difficulty on job applications and forms.  A recent exercise in seeking out ideas for my intended change of occupation, puts a number of caring activities firmly on the list.  It has been suggested that I might enjoy working with people who have physical and mental difficulties to overcome in order to live their daily lives.  Well this last week has provided a reality check on that one.  I have been reminded once again of the truth about caring.  Caring, like love, is costly.  It is relentless, hard work, selfless, all-consuming, challenging and yet mind numbingly tedious.  It is not just about the odd cuddle here and there.

Yet millions of people all over the world are doing it day in, day out, for their loved ones – often until they are literally on their knees with exhaustion and despair.  Many more are caring as a profession, with low pay, long hours and very difficult circumstances to endure.  Almost without exception, each one of the professionals I have met over the years who have had a hand in caring for my mother (and there are many) have displayed impressive amounts of caring, patience, tolerance and respect in their duties.

A few years ago, when I started thinking about my future in the job I was in, I considered taking a career break in order to spend some time helping to care for my mother.  At the time, it seemed like the best solution to a difficult situation with my father heading for prolonged cancer treatment and Mum’s needs increasing.  I knew it would be a challenge, but I honestly thought that with the help and support of my siblings, I would be able to do it.  The plan never came to fruition, and sadly now I know otherwise.  I know that it is one thing to feel that you care about something or someone, but it is quite another to show this in your actions, minute by minute, hour by hour, day by day and night by night.


I present to you (with the full intention of maintaining respect for both my parents whom I love dearly) a flavour of the challenges of caring:

On Monday afternoon, I head three hours north for a two-night stay with my parents in order to facilitate my father’s day trip to the hospital for surgery on Tuesday. Before leaving I phone home to enquire whether it will be necessary to buy food for a meal upon arrival.  I speak to Mum who shows all signs of having followed and understood the conversation.  Dad had taken a half hour break from Mum to run down to the allotment and plant a row of leeks.  Having fought the continuing insistence of my body to shut down and sleep, despite the unplanned stop for caffeine, I arrive. I am exhausted, hungry and grumpy.   The evening meal has been eaten and there is little food in the house.  Truth number one – caring is not about being in control but requires an unflinching ability to ‘go with the flow’.  Instead, I am unsettled by the sight of the sink. Undeterred, the washing up is tackled in due accordance with the rules of the household regarding draining and disposal of tea leaves, minimal use of washing up liquid, correct procedures for rinsing and recycling and returning each item to its specifically designated place in the kitchen.  And all the time, despite it being probably over a decade since Mum had any influence in the kitchen, my subconscious is telling me – “I want my Mummy back”.

Dad rectifies the food situation by finding fish and chips in the freezer, I feel bad that he has gone to this trouble whilst he in turn feels embarrassed at the situation.  I realise that both my parents still have a psychological need to be caring for me even when circumstances suggest that the reverse should take over.  I am still their childTruth number two – role reversal is uncomfortable, awkward and does not happen naturally.  This truth is to be illustrated repeatedly over the next couple of days.

Next up, I have a nice chat with my mother.  This inevitably involves shouting which sometimes accelerates to fever pitch in frustration.  At best, there is relentless repetition of critical words in a procedure that resembles a rather agitated, high volume game of Chinese whispers.  So we switch topics.  Mum does the talking…”does my husband have a job?” she asks. Perplexed by this question, I impatiently inform my mother, who has recently scored full marks in the tests for dementia, that indeed he does, but inside my heart has given up on the conversation.   Truth number three – dementia or not, the decreasing lack of knowledge and ability in the cared for, to engage in what is happening in the carer’s life can cause isolation.  Again, there are to be constant reminders of this over the next two days.

Mum requests a visit to the bathroom.  As I hold her steady in the transfer from chair to wheelchair, her bones are literally squeaking, crunching and creaking.  I can feel and hear hundreds of tiny movements and her vulnerability is frightening.  I remember with longing, the distant days when she would at great cost in energy and effort, walk with me to school.  Instead, I am required to help her undress sufficiently to use the toilet and when called back later, we enter into our regular argument about whether she has washed her hands.  I know that she hasn’t.  She angrily protests that she has.  My gentle, caring, loving response fails to emerge as I battle with the knowledge that it is now Mum that is hiding the truth from me and not me hiding the truth from Mum.  I am concerned that poor hygiene will result in yet another UTI.  Truth number four – constant physical and mental attention is required in the battle for safety and hygiene.

I turn my attention to arrangements for the next day.  Dad is too mentally exhausted to have addressed the transport arrangements for getting him to hospital for 8 am.  We both acknowledge and confront the obvious fact that Mum cannot be left for the hour it will take me to transport him and return.   We establish that Mum’s overnight carer is unable to stay later until I return.  It is too early for buses, the assistance of neighbours or the Plus Bus scheme with which both my parents are registered and there is a resistance to booking a taxi that today’s generation would fail to understand.  So it is decided that we will leave early so that I can return before the paid night carer departs.  We have no energy to address what might happen at the other end of the day.  Truth number five making straightforward arrangements for an isolated event are never simple or straightforward.  They often sap the life energy out of the carer.    Leaving Mum even for half an hour is probably high risk and unwise.  Prior to her latest hospitalisation, she had a panic alarm strung around her neck, but we have realised that she does not have the ability to raise the alarm if needed, and so that potentially life saving service is no longer an option.

Mum is trying to undress in readiness for bed.  The carer arrives at 11.30 pm but sometimes Mum likes to be ready for bed before then.  She is struggling to undo a button on her blouse and after about 5 mins asks for help.  I realise that the button she is struggling with, is in fact a sticky sweet stuck between the layers of her blouse.  Sweets are now habitually squirreled away at every opportunity – preferably unwrapped, as Mum can no longer unwrap them for herself.  So at the hint of a chance, she will coerce anyone who is willing, into unwrapping a sweet.  These go into pockets, her handbag, down side of chair, under pillow, up sleeves and inside tissues.  We discover that Werther’s caramels have a particular propensity to soil garments unpleasantly.  I am asked to unwrap a bar of chocolate so that it can be stored in Mum’s handbag in case of need.   Truth number six – losing independence is accentuated in the small things of life which become just as distressing to deal with as the major issues – for both the carer and the person being cared for.

The paid carer arrives for the night.  I wonder if she finds it odd that I am here and not volunteering to take on the overnight care.  This makes me feel inadequate.  How can it be that a mother’s own daughter is not prepared to get up through the night to assist with getting on and off the commode?  I tell myself that it is to do with preserving dignity but I know this not to be the primary reason.  I just don’t have the stomach for it.  Thankfully, I have not yet been audibly challenged on that account.  The night passes to day without event, and the hospital drop off is completed in time to release the paid carer to a day of rest.  The 7.00 am rise is, however, a daily event in this household, despite the fact that my father’s natural pattern in retirement would be to get up late morning. He needs more sleep.  Schedules are dictated by times of carer visits and astronomical costs mean that late to bed and early to rise have become essential.  Truth number seven – schedules and daily routines are taken over and dictated by external authorities.  Choices rarely feature.

We settle in for a day together – just Mum and I.  Foremost in my mind is the accurate administration of drugs:  seventeen tablets – with adherence to the specification as to whether they require chewing, swallowing, taken with liquid, on an empty stomach, with food, or half an hour before food. There are some optional medications to be taken as needed.  Additionally, three eye drops of two different kinds must be administered at appropriate times and to the correct eye.  At this day’s first request for pain killers, a single tablet plummets into the recesses of clothing, chair, or surrounding boxes of mail catalogues and is never to be seen again.  This is clearly registered to Mum’s subconscious mind….but not her conscious one, for now.  It is some hours later she is to be found frantically searching for the dropped medication which has now surfaced as an urgent problem to be solved.

I need to get to the shops otherwise there will be nothing for tea – it would be good to have a lovingly prepared meal to welcome Dad home.   Having assessed Mum’s strength and enthusiasm for the day, I realise that my planned adventure by wheelchair to the shops is not realistic.  She would have delighted in that a year or so ago.   I can just about manage a round trip to the local Co-op in 20 mins, which if timed carefully around toilet visits, will not constitute too much of a safety risk.  Today, I need to wait for the district nurse to arrive and administer Mum’s life saving monthly B12 injection.  She has a morning visit booked. It is beyond mid day by the time this visit has occurred and all I have done all morning is waited and watched.  Mum has been sleeping although she will deny it.  I realise that I have developed hospital brain.  This is a phenomenon that I am familiar with from long hospital stays with my son over the years.  Somehow, when in a caring role over which your control of the situation is minimal, the brain goes into standby and all normal activity is suspended.  Truth number eight – whilst caring is not full-time in that if you added all the spare minutes together there would be a sizeable chunk of time in which you could turn your attention to something else, in practice, this does not happen.  Caring is all-consuming.

Mum and I battle over the position of the wheelchair required in order for her to transfer with minimum effort.  She is insistent that it needs to be closer.  The wheels are already jamming into the side of the chair and any closer will result in her legs being squashed.  This argument is repeated every time she makes a visit to the bathroom.  These are the only visits she does nowadays – apart from hospital visits and the occasional trip to the dentist.  Despite her fragility, once she has decided that she is on the move, the move happens quickly.  She no longer waits or allows time for the brakes on the chair to be applied.  I need to be alert to ensure that the chair does not fly back as Mum thumps down in relief.  I need to listen out for her cry that all is finished to ensure that safety procedures are followed at the other end of the trip.  Once safely back in her chair, she spots an object that she doesn’t recognise on the bookcase at her side.  Can you pass me that dear, she says, I will put it in my pocket for later.   I have no idea what the object is but pass it to her as requested so that she can see for herself that it is not the bar of chocolate or sweets that she obviously has in mind.  But she doesn’t recognise this and I have to hastily retrieve the object when she reveals that it is, in fact, a sharp cutting knife whose safety catch she has amazingly managed to disengage whilst investigating the object in question.  Truth number nine – there is a constant battle for independence going on which has to be weighed up against clear thinking and safety.  This battle is emotional, physical and mental for everyone involved.

I call the hospital and realise that despite not knowing when Dad will be able to come home, arrangements will have to be made somehow.  I learn that he will be coming home with a catheter.  The information had been buried somewhere in the paperwork that the hospital had sent but unsurprisingly dismissed as too complex and unpleasant a possibility to consider.  I try not to let the events that followed on from the last post surgery catheter enter my head.  I know that they will certainly be in his head.  Several phone calls are made including one in which I call the wrong Ann. This results in a bizarre conversation in which I have to backtrack rapidly.  The explanation for my mistake is only going to sound ridiculous and cannot be made without digging a big hole for my father to climb out of once I have gone.  So I refrain from the explanation.  Answerphone messages, husbands and volunteers all come into the mix and I am now awaiting calls back from several people, as well as the hospital.  As Mum can no longer take a reliable message on the phone, I can’t go out.  Prospects for that home cooked welcome back meal are not good.   A befriender in a local volunteer scheme agrees to come to the rescue and free me, at some unknown time, to pick Dad up.   The hospital tells me that Dad will need to revisit on Thursday morning.  I have not planned to be with my parents on Thursday morning.  I have to decide (or so it seems) which is more important….looking after my parents’ needs, or continuing with my own life.  Truth number ten – caring comes with a constant guilt trip.  However much we engage, the questions will keep coming – could I be doing more? Am I being selfish?   I talk myself out of staying, on the grounds that two people would be needed – one to escort Dad back and forth, and another to look after Mum for an unknown length of time.  As I am finding that she is needing help with personal care, the volunteers are only good for an hour or so – they are not allowed to help in this respect.  And so, I begin the process of looking into respite care for Mum.

The call from the hospital comes at rush hour.  There is stress as we sit in a queue of traffic causing a half hour delay to the half hour journey home.  We are indebted to the volunteer and don’t want to take advantage of her or put her in a difficult situation.  Dad has had a general anaesthetic and an uncomfortable procedure and yet everything continues to focus around the needs of Mum.  I am immensely saddened by this.  As soon as we are home, I am off to the Co-op to pick up microwave meals for our dinner.  It should have been different. Later on in the evening, Dad complains that he has no energy.  He says he has done nothing all day, and can’t understand why he is tired.  Compared to what he is having to focus on day in, day out, at home, I reflect that he probably feels like he has had a day off!

We spend the evening discussing options for dealing with Thursday.  We spend the following morning putting the plans into place.  Mum gets it into her head that she is having to stay in the local cottage hospital for three weeks, rather than the three nights that we have booked.  She worries about the cost.  She worries about the packing.  She worries about having sweets to take.  We explain again, that it is actually cheaper than the overnight care which she is now paying for.

Thankfully, Mum appears to have no recollection of the events of the night.  I wish the same could be said for myself.  Disturbed at 4.00 am by a polite knock on my bedroom door and a request for assistance from the carer, the next hour turns out to be as in a nightmare.  I am amazed at the level-headed, calm and respectful manner in which Jo is dealing with the situation unfolding.  She inspires me to be the same.  As I hold all of Mum’s weight on me for a good 15 minutes she panics.  She wants to, but must not, sit down.  I tell her I have her weight and will not let her fall but she is in a blind panic.  She has been here before.  She knows the consequences of a fall – broken neck, broken hip, broken femur are all on her list, along with many long hours spent on the bedroom floor waiting for ambulance services to arrive.  I have not been here before,  I am strong and grateful for those hours spent at the gym but amazed at the strength required to protect a panicking frail old lady.   After the event, the real carer and I sit together for a cup of tea to recover.  I now have memories of my mother that I have been trying to avoid for several years.  Dad may have feigned sleep through the incident, but it will have had its impact on him too.  I know that this event will linger and remain in the air always.  It has been a defining hour in understanding the cost of true caring.   I fail to sleep and at 7.00 am the new day starts.

There is a letter from a friend of my parents in the kitchen.  I am in the habit, with permission, of reading such letters for news of old and dear family friends.  This one is poignant.  It reads “I hate getting old as I am sure you do, but as I don’t know if I’m going to heaven or hell – I’ll keep going”.  This family friend is a saint.  She is not perfect and is sure to have made mistakes in her life.  But to me, she is a saint.  After all, she cares for a husband with advancing Alzheimer’s.   Her whole life must resemble the two days I have just described.  She, like my Dad, is a true carer.  That place in heaven is waiting for them if they did but know it.

At 10.00 am Dad emerges after a rare chance to catch up on some sleep.  He apologises for me having to deal with Mum overnight.  It is less than 24 hrs since his general anaesthetic, yet his own health problems are brushed aside as he starts to pick up on his duties – this is just life as normal for him.

And so it is that I have learned the truth about caring.  There is no such thing as passive caring.  Caring is defined by action and  longevity.    It is no more about a quick cuddle than it is about a tenner on a friend’s sponsorship page.  If you think you care about a person, or a situation, then put that care into practice.  Take some action and then find out how much you really care.  It will be a truly humbling experience.

For me,  I recognise that where family members are concerned, a whole set of additional challenges come into play but I think I might just use that word ‘caring’, with a little more care in the future.



Photo credit to Paul Talbot