HOW IT BEGAN
ON the shortest day of the year in 2011, my godfather’s widow fell off a step-ladder, trying to reach bird food on a shelf in her garage. She was ninety years of age at the time, and still living, with increasing difficulty, at home alone. This is how my crash-course into the world of elder care in this country began, in what was to become the longest year of my life.
The inevitable fractured hip, hospitalisation and alien environment precipitated an acceleration of the dementia that she was battling so hard to conceal, not helped by the sudden transfer after the requisite time out of her ‘bed-blocking bed’ on a private ward, to the inferior public facility that was affectionately known as ‘the holding area’ for those awaiting nursing home placement.
Even the by then ninety-one-year old recognised the downgrading of her circumstances. But the die was cast: she had been recommended for long-term care and the quest for that elusive nursing home began. She would remain on the ward for the bewildered until they – or I – found her a home to go to. I sprang her in May of 2012, to a place I found and for which she paid privately. Nine months and two nursing facilities later – she was kicked out of the first home because they couldn’t manage her disruptive behaviour – silent and uncommunicative and having just given up on life, she passed away.
I open this Elder Lemon section with my aunt’s back-story, because it is relevant as to how I arrived at my current role in looking after my parents. Being the nominated next-of-kin to this non-blood relative, opened my eyes as to how to protect my own parents from her fate, for as long as I could.
If I thought that first year was long, well there have been seven other long years since. In a country with populous families, an only child with no children of their own, is an oddity. I have felt at times during meetings with hospital social workers that they didn’t believe me. That they suspected I had secreted or silenced several other siblings, partners and offspring somewhere and was just getting off on the power of being in control!
But elder care is not a job that you sign up for: it happens by stealth. Because of my apprenticeship with the aunt, I installed the hand-rails on the stairs. I changed the height of the toilet and put grab rails and a chair into the shower. I adapted the kitchen to a more modern, home-carer-friendly version. You do this in advance of the problem, because by the time the elderly person has had that tumble and you look for help in retro-fitting, they will either have passed away or be on the ward for the bewildered when the funding comes through.
Nor is caring for the elderly sexy. It doesn’t have the cuteness or the cachet of staying home to care for small children. Your investing of your time in nurturing future generations is seen as a valuable contribution to society and the world of work has finally come to recognise this, with parental leave and career breaks.
But taking over the lives of elderly people in all their aspects, is relentless, time-consuming, unrecognised and unpaid work, and involves a range of more cerebral activities, than the martyred notion of the – usually – female care-giver – wiping bums and spooning mush. It is one of the reasons I will not use the term ‘carer’ in describing that part of my life’s work.
Thankfully, this section will not be all gloom and polemics. It will visit Feisty Dad, still living at home and although Mother has succumbed to the uncertain world of dementia, she is in a terrific nursing home.
Life goes on.
Human behaviour continues to fascinate me – whether it’s the social dynamic of groups in a nursing home, or the complete absence of care in the community, unless you subscribe to what is available through the public health system and ‘avail of the services.’
Perish the thought that a neighbour or a friend, might just knock on the door, to see if you need anything – and not get paid for it.
HOW IT EVOLVED
Despite the proactive measures I took to shore up my parents’ physical home and the increase in practical domestic help provided by me and paid carers, the insidious introduction of dementia into the picture – altered the scenario. In my mother’s case, her journey was slow and typical of frontotemporal dementia insofar as its presence was recognised most acutely by behavioural changes. Always a woman fond of her dinner - she had upturned the structure of my father’s life – by insisting that the main meal of the day be switched to lunchtime. (I seem to recall not one, but several politicians and the odd television presenter being lampooned for coining the phrase ‘the plain people of Ireland’ – those who ate their dinner in the middle of the day!) Whether it was my father’s aversion to being ‘ a plain person’ or just his stomach that objected to eating a heavy meal so early when neither of them were up at cock-crow, he refused to comply, insisting on maintaining his usual habit of cooking and enjoying an evening dinner – while he or whatever carer was in – made Mother’s dinner for 1.30.
But despite all the eating, I began to observe that she was losing weight - quite dramatically. When on a review with a gerontologist, the first thing that consultant remarked upon was the dramatic weight loss. This was the most serious implication of the altered behaviour. For despite insisting upon it, she wasn’t eating those lunchtime meals. Nor the sandwiches later or indeed anything else. The mystery was in part solved by my former dog, Todd, who began to take a great interest in the cushions, the sides of the sofa, under the seat chairs… where balled up serviettes full of food – had been secreted.
This ‘hiding food’ is not unusual to those used to the world of Alzheimer’s dementia, but the dramatic weight loss, resulted in a hospital stay for my mother after which – principally because nobody got her out of her hospital bed to walk – she came out of the hospital in a wheelchair and was transferred to the private nursing home bed that I found for her and that would become her home for the remaining six and a half years of her life.
Sometimes, you just get lucky. And as a person with no track record of luck of any kind, the day I knocked on the door of Foxrock Nursing Home, I did get lucky. Not only was it small and homely, but at seven minutes door to door from my own home, it meant I relaxed in being able to visit my mother in a calm and pleasant environment so unlike the dreadful six weeks I had put in at the hospital.
My father was forced to become accustomed to his own house alone – with either me or the carers coming and going, but after about a year, I observed that he wasn’t doing well. I thought he’d enjoy the freedom from having to care for my mother – even at the age of 90 he still danced around her – looking after everything that she needed – but in her absence, despite me fetching and carrying him to visit her in Foxrock - he went downhill.
Then, he too began to behave bizarrely. I suspected a mini-stroke or two – but he presented himself very well any time I managed to get him to the GP. Eventually, convinced that he too was spiralling into dementia, I demanded a referral for a private MRI, had him seen within 10 days - and my feelings were confirmed. He was admitted after the results of that MRI – into Blackrock Clinic where they treated him for the two strokes he had already had. The fact that he now had vascular dementia and was aggressive and difficult with it – didn’t detract from the care they put in place for him.
Home he came with a live-in carer doing 4 nights a week and me doing the weekends, and one of his previous carers doing a couple of weekday hours in order to give the live-in or me a break and so I could try and look after my own affairs!
When the in-house carer gave notice, exhausted by trying – and failing – to find her replacement, I wondered if it was time for him to join my mother in the nursing home. It was.
This was something he was totally adverse to – but the tough love of leaving him alone for a couple of weekends – made him balance his loneliness and confusion – with the company, structure and really lovely cuisine which he was soon to adapt to in the nursing home.
It wasn’t that he didn’t complain. Or that he didn’t ask me – repeatedly – ‘when am I going home?’ but as I had already put in over three years fielding the same question from my mother, I began to understand that the only one who would be bothered and upset by that question an hour after it was asked – was me.
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CARE INTERRUPTED
And then, came Covid. I have written an episode in my latest work of fiction One More Time where the principal female character is in Nice, France on business when this hubbub about a ‘Chinese flu’ breaks out. This is in fact autobiographical. I was in Nice on business in February 2020 and returned home to the increasing anxiety around this virus. Little did I know that within less than ten days, my daily routine of spending time with my nonagenarian parents would cease and that I, effectively would be ‘locked-out.’ In those scared early weeks of 2020 when people were terrified by the sight of the deceased lined up at a Bergamo hospital, keeping communal settings ‘virus-free’ had to be the priority.
And they did. My parents’ wonderful nursing home, kept Covid 19 out and throughout 2020, various relaxation of lockdown levels made various types of contact possible. Window visits – where I spoke on the phone through the window – me out in all weathers, Dad in a chair on the inside: WhatsApp video calls were all timetabled and managed superbly by the Events’ Co-ordinator. My mother was no longer able to use the phone. Or Facetime, or these video calls, but sometimes they’d schedule one anyway, so I could see her and what she looked like.
In a way, ‘living in the moment’ of her Alzheimer’s cloud protected her emotionally. She didn’t particularly miss me; I was just another familiar face of many.
But my father – lucid and engaged 70% of the time – suffered greatly. When we were catapulted back in to the 2021 lengthy, demoralising lockdown – notwithstanding the roll-out of the vaccine programme – the isolation and emotional distress for both of us escalated. It’s at this point that I became angry when unhelpful people suggested how at risk my parents were – because I had chosen for them to be cared for in a nursing home.
See my Irish Times article: I’m thankful my parents are in a nursing home during this Covid-19 emergency
The intelligent director of nursing at the Home, could see how their residents were deteriorating – not through Covid though they did finally succumb to some cases – but through the unexplained lack of contact and misunderstanding of where their family had vanished to. The toll of dementia makes a nonsense of technology – and additionally, the infection control protocols in my parents’ nursing home were so strict that until they had increased the number of iPads, they wouldn’t allow their passing between residents, unless they had been returned to be centrally disinfected and ‘rested’ until in use again.
Innovative ways of staying within the guidelines but allowing the residents catch a glimpse of their loved ones were employed. Regulation had by this stage reached nonsensical levels: family members nor their vehicles not allowed within the car-park of the nursing home – as if it were ‘foot and mouth’ disease travelling on the tyres of the cars. (Why nursing homes only? What about all the ‘germs’ in supermarket car-parks?)
When I recall one drizzly, cold March day – and the sight of my 94-year-old father in a wheelchair, dressed in his heavy outdoor jacket, a blanket over his legs, a carer standing in her uniform in the rain with a golf umbrella over his head, he on the inside of the railings of the home and me on the other side – several metres away on the abutting communal green of the housing enclave where the home was, I am still angry at the lack of consideration for our elderly.
For those who oversaw this policy with impunity, I have two words – yes, those two as well – but the polite two are – antigen tests. Commonly supplied to and in use among the nursing home staff to ensure they were infection-free, apparently, the ‘plain people’ of Ireland according to the former CMO were too stupid to use them all by themselves. No mention of the cost that would have been involved to supply them had the nursing homes been allowed accept one nominated resident ‘buddy’ and employ a ‘tester’ to screen that buddy-visitor, so all these elderly people around the country vaccinated but locked away from their children and spouses, could have had some contact.
HOW IT ENDED
Eventually, we exited Covid and my parents, despite contracting it twice, survived it twice. But life in the nursing home as I had known it, never returned to normal. Gone was the family-feel and the camaraderie between old and new residents’ visitors as they chatted or supported each other on their way to and from spending time with their people.
The isolated visits that had resumed following the pandemic meant that the visitor continued to be brought to the resident’s bedroom to see them – and the implicit group support from other relatives often struggling with difficult scenarios – was no more.
When their time came – it was pneumonia that took my parents off – following as a result of that bad chest infection that was doing the rounds in 2022. My father had given it a preliminary attempt earlier in the year in July and August, when everybody cautioned that his days were numbered. Last rites were administered, the doctor had put in his courtesy warning phone-call – but JP – as he was affectionately known to his employees and his golf club friends – rallied and did a Lazarus, giving the same doctor quite the fright when he returned from his holiday to find Dad up and dressed and sitting in the conservatory.
Alas, Christmas 2022 was to be our last one together. As he and I sat with some rugby match bobbing along on the in-room television, he turned to me and said: ‘I think I’m on the way out.’
This was his warning to prepare myself. Within a week – and four days ahead of his 96th birthday – I had lost my best friend.
I’ve never been a great fan of marriage – seeing it as an economic, societally acceptable way of keeping people bound to each other in stable partnerships – but when my mother, his wife of sixty-eight years – despite her hazy Alzheimer’s grasp of things ,went further into the doldrums following my father’s death, I had to acknowledge that there might be something in it. For better or for worse – that length of time spent as someone’s soulmate cannot be dismissed.
In true Diva form, my mother held off dramatically – to pass away on the same date as my father, exactly one month later in 2023.
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© This is an extract from a longer piece of non-fiction, currently in progress.