Dementia: the longest cruellest goodbye

We should have realised that something was wrong when Mum started going to bed at 5pm, when she (a normally gregarious woman) stopped going out and instead sat on the sofa watching daytime TV for hours on end.

Family with children pose under Christmas tree. Black and white retro family portrait.Or perhaps we should have recognised that this 83-year-old’s refusal to move from a house that was by now patently inappropriate and unsafe for her and Dad to live in was due to more than just her normal strong will.

But hindsight, as ever, serves merely to frustrate. Looking back, trying to disentangle normality from abnormality, is part and parcel of dementia, the terrible disease from which I now know my mother has been suffering for at least two years.

Before it affected my family I knew nothing about dementia, other than that it usually afflicts the elderly. In fact, it affects over 750,000 people in the UK. It’s a little-talked-of illness that creeps into lives, placing families under intolerable strain, provoking feelings of guilt, mistrust and sadness.

I know this because, some months ago, my siblings and I helped our late father to take a decision so difficult that it was simply too much for an 85-year-old man to bear alone. Our actions were motivated by love and concern, by that most basic desire to do the best for those close to you, although the issues we confronted were anything but basic. They involved complicated ethical, financial and medical decisions for which we – a close, educated, articulate family – were unprepared and poorly equipped.

Along the way we were lucky enough to receive help from my parents’ supportive GP and a sympathetic and experienced geriatrician. Even so, we found ourselves casting around for expert help as we took huge, life-changing decisions on behalf of our parents with very little guidance.

In telling our story perhaps I can offer comfort through a shared experience. I am sure that if basic information in user-friendly form were more easily available from the medical and legal professions, and from local and national government, the lives of those touched by dementia could be made easier.

For the last 30 odd years of their 58-year marriage my mum and dad lived in a hidden pocket of Surrey in a house whose rambling gardens pitch down to the river. It was a magical place in which to grow up, a home until recently suspended in my memory among the dappled leaves of summer.

For all its unique beauty, the house, where every shuffled step is up or down a steep incline, is no place for an elderly couple. So, after Dad had a double heart bypass aged 78, we realised that it was time for them to move.

Mum refused to consider it, even when everyone, from neighbours to her doctor, from her oldest friends to her own children, told her she must. ‘I’m not moving’ became her mantra, a form of Chinese torture for Dad, and finally he collapsed under the strain and had to spend two weeks in hospital, his mind and body exhausted.

Looking back, Mum’s implacable refusal to move in the face of all reason and to the detriment of her husband’s health was uncharacteristic. I’m afraid I tended to regard her obduracy as a manifestation of her normal, strong-willed self, albeit exaggerated through old age.

This slow invasion of life is one of dementia’s wiles, delaying diagnosis, adding to the confusion of sufferers and the guilt of their loved ones, who, once they know the sad truth, constantly ask themselves, “When did it start?” and “What should I have done differently?”

The-longest-cruellest-goodbye.2At the time, Mum’s reaction left us with no alternative but to sell her beloved home despite her protestations, using the power of attorney that, with remarkable prescience, Dad had got Mum to sign over to me (and him) some years earlier. Dad and I found a suitable flat nearby and put the house on the market.

Twelve months later, after two buyers had pulled out within days of exchange – selling a home with a resident owner who insists on telling potential purchasers that she isn’t moving and the cesspit stinks was never going to be quick or easy – we children decided to buy the flat and sell the family house once our parents had moved.

By this point we were sufficiently concerned about Mum’s mental state to seek medical advice. A geriatrician and a community psychiatric nurse visited her at home and subsequently arranged for her to have a brain scan. The letter giving the date of the scan was addressed to Mum who, either wilfully or inadvertently, ignored it. I discovered the letter by chance several weeks later and arranged for another appointment. The delay meant that as we planned for the move, mum’s dementia had still not been diagnosed.

How, in practical terms, to move Mum was now a major problem. When coming to our decision we constantly reminded ourselves to consider not only Mum’s, but Dad’s well-being. We concluded that we would have to persuade Mum to leave home on a pretext, then return her to the new flat furnished with her own belongings. With a heavy heart, our father agreed.

So it was that one grey spring morning my sister collected Mum and Dad for ‘a short stay’ with her and her family in Somerset. Once they were on their way, I drove from London to prepare the house for the removal lorries that would arrive the following day.

That afternoon was one of my worst in a traumatic year – the memory of it still haunts me. I had just a few hours to sort through the house in which I’d lived as an adolescent and to which I’d returned in times of happiness and sadness for the past 30 years. I felt literally heavy with guilt. Mum was a hundred miles away, yet all around me – in the everyday objects and detritus of a life she didn’t know she’d already left.

The only way to cope was to switch off emotion. Besides, I didn’t have time for sentimentality. My brother was arriving from Ireland later that day, leaving us just a few hours to sort through a lifetime’s belongings, so boxes of papers and school files were shoved, unopened, into bin bags. Later I resented the fact that dementia robbed me of the opportunity to say a proper goodbye not only to Mum, but to the home I’d loved.

For Mum, the discovery that we’d sold her house was a blow from which she never recovered. Arriving at the flat, she refused to get out of my sister’s car. After an hour or so my brother, sister and dad took mum to hospital, where she was given a sedative and persuaded to go back to the flat.

She spent just two nights there, as paramedics and an on-call doctor came and went – they were supportive but powerless to do anything more than administer sedatives for Mum’s mental condition. The rest of us, traumatised and exhausted, scarcely knew how to act or what to say. In the space of 24 hours what had been suspected and hinted at was very clear: firstly, Mum was ill and in need of treatment, and secondly, Dad could no longer look after her.

Fortunately – and this was to prove an important stroke of luck – Mum had an appointment with the geriatrician that we were able to bring forward to the following day. We knew that if mum refused to be admitted to hospital, the only option would be to use the Mental Health Act to force her to stay.

As the geriatrician reasoned with her to let him treat her in hospital, Mum remained adamant that she wasn’t ill. The more she argued, the more confused she became and my initial fear – that she’d appear too capable to be admitted against her will – gave way to the realisation that my mother was about to be sectioned.

Clinging onto her, I broke down and sobbed for her, for Dad, for my family, myself, and all that we were losing. Seeing me cry, Mum instinctively wrapped her arms around me and agreed to stay. In those few emotional moments our mother-daughter roles reverted to their natural order for what proved to be the last time.

Mum stayed in hospital for six weeks, deteriorating rapidly, mentally and physically. The first time I visited her I barely recognised her slumped figure. Because she had contracted a chest infection (a perennial hazard in hospitals) she hadn’t started on her course of the anti-dementia drug, Exelon. She knew who I was, but looked at me through confused, clouded eyes and hardly spoke. I sat beside her in the day room, holding her hand until, loathing myself for my weakness, I fled to her room, shut the door, and cried with grief.

Looking back (a phrase that dominates my thinking) I try to work out when the “old” Mum began to leave us. I know today that Mum’s annoying traits – going to bed ridiculously early, refusing to go out – were symptoms of early onset, or silent, dementia.

I also know (and this is where the irrational doubts sneak up) that moving sufferers from the family home can sometimes worsen their condition. But, as my siblings and I keep telling ourselves, not moving our parents would have shortened Dad’s life. This was the dilemma, and we made our choice. I’m still confident we made the right one, but it would have been better to have had all the facts at our fingertips when, not after, we acted.

After several months in the nursing home Mum’s physical health has improved. She sits in the day room, watching TV and moaning about the other residents. Studying her face for signs of the Mum I knew, I see myself 40 years on.

Half of me wants to walk away from the person who isn’t quite like Mum anymore, and rush home to my daughter’s laughter – to make the most of my relative youth and health. The other half can hardly bear to leave a frail old lady who’s just told me that she sometimes cries herself to sleep because she can’t remember her life.

We know that Mum is in the early stages of dementia, that she will get worse and, one day, not know us, that we have only just started to wish this strong-willed, big-hearted woman the longest, most painful goodbye.

***

This piece first appeared in the Sunday Express.

‘Three months ago, in the final hours of Christmas Day, my mum passed away.  Along with their sympathy, many people expressed concern that the timing might blight future Christmases for me and my family.  I was able to reassure them that after more than a decade in the clutches of dementia, my mum’s going was as good as it could possibly be.

For the past several years mum had been unable to move or speak.  She had lain immobile in her nursing home bed, being fed by carers, unable to recognize any of her family and – thanks to the one hint of mercy offered by this cruel disease – unaware that her husband of 62 years had passed away in 2009.   And my siblings and I had come to know that, no matter how great our guilt at the time, we’d made the right decision when we’d placed her in a nursing home.  Mum could never in a million years have remained at home, or come to live with any of us children – her needs simply became too great.

On Christmas Eve, following a call from the nursing home to say that mum wasn’t taking any food, I drove down from London to be with her and listen to the service of Nine Lessons and Carols from King’s College chapel – possibly her favourite thing, ever.   She opened her eyes for a few minutes, but didn’t seem to register that I was there.  It was the last time I saw her alive.   I spent the next day with my family and drove down in the evening to see mum, arriving ten minutes too late to say goodbye.

Once the shock – the finality – of her death receded, I realised that this generous-hearted woman had given us all the gift of Christmas Day.  And I like to think that as I sat holding her hand on Christmas Eve, the carols and sumptuous music struck a chord within her, offering her comfort as the dementia finally loosened its grip.’

Pippa Kelly has written extensively in the national press on the subject of dementia and the funding of elderly care.
Alzheimer’s Society: 020 7306 0606 www.alzheimers.org.uk
Dementia UK: www.dementiauk.org

About Pippa Kelly

Pippa Kelly is an award-winning blogger and writer on elderly care and dementia.

  • Wow, what a heart-touching piece. My family and I are in a similar situation; my mum has a progresive dementia and now lives in a nursing home. Dad was looking after her as best he could, but as he became more frail and mum became more confused, we knew that situation couldn’t last. Dad passed away last October.
    Dementia is a long goodbye. Yes, it is cruel at times, but for me, I hope it gives me time to let go of her and then perhaps the last goodbye won’t be the spiteful snatch it could be. That’s a selfish thought, I know, but I can’t help it.
    Sometimes, mum thinks I’m her sister, Celia, who passed from cancer ten years ago. Sometimes she thinks she and dad are only just engaged. On one occassion, she called me mother. I go along with her conversations. To correct her would only lead to confusion and upset and to what end?
    No one out lives the enevitable, but I hope I’ll be able to carry on saying goodbye for a little while longer.

  • PIppaKelly

    It is indeed a long and painful goodbye Karen, with only small glimmers of charity. I have just written a long piece on living with dementia, for which I interviewed people suffering from the disease, their family carers, an Admiral Nurse and the owner of a very good care home for dementia sufferers. Those with dementia inspired me with their optimism and courage, their relatives humbled me with their tireless devotion. Perhaps the biggest discovery for me, though, was the work of Admiral Nurses, who care for the carers of dementia patients and for whom everyone I spoke to had utter admiration and gratitude. There are only 120 of them in the UK; their numbers are increasing and I hope that we’ll be hearing more about them soon. All the very best to you and your family. Pippa

  • Nicki B

    I have just re-read this piece and again have tears in my eyes. My aunt, to whom I was extremely close, has been in a wonderful care home for four years now. She lies in bed all day, seemingly quite happy, but it is some time since she has recognised my mother (who, at 86, still visits her older sister every week) and she has no idea who I am. I remember seeing her in hospital, when the disease took a serious turn for the worse; she had wandered out of her flat on a searingly hot June day and collapsed in the street. I went to visit her and had to ask where she was, she was so unrecognisable sitting by her bed. She moved out of hospital to the care home, that she would have refused point blank to consider before her collapse.
    My aunt was a highly successful headteacher, receiving the MBE for her services to education. In her early seventies, in one of our frank discussions, she told me that she didn’t want to be old. She did not want to lose her faculties, her capacity for life. She would have hated to see herself so helpless and dependant. I hate seeing her like that; I have lost the dear aunt who was my friend (as I told her when I was 7)and yet that person is still alive. Alive but not living.

  • PIppaKelly

    “Alive but not living”; what a chord that struck. Thank you for commenting Nicki and good luck with everything. All the very best, Pippa