Friday, 25 April 2014

Let's Get Real

Readers may have noticed that I haven’t updated my blog in recent months.  There are two main reasons: firstly, I’m aware that many whose lives are touched by dementia are looking for uplifting, or at least reassuring, stories; my mother’s condition has progressed to a stage where I feel I cannot be that Pollyanna and do not wish to discourage others. Secondly, dementia has already taken so much of my life - practically, emotionally, and financially - that I now have to focus on rebuilding an involuntarily neglected career. 

But this week I read something that so incensed me, I just had to respond.  It was this interview given by [former @May 2015] Minister of State for Justice*, Simon Hughes:

Now I do acknowledge that media reports sometimes take comments out of context or misrepresent tone or intention.  I cite the piece with those caveats.  But if this is a fair summary of Simon Hughes’ message, I take issue with its assumptions. 

His basic contention seems to be that elderly people in residential care have all been “forced” there by callous relatives who lack a sense of responsibility, “obligation” or “sacrifice”; and that those who live alone and/or seek state support for their needs are wilfully “neglected” by society or by family “who you would have thought would care”. 

Furthermore, he holds up the wearisomely familiar example of idealised “Asian or African” families, who, he contends, have a superior culture of caring for their elderly “to the end”.  

It may be that these are his genuine, personal views; in which case we may consider him ill-informed, but not malign.  But let’s not be disingenuous.  He is a government minister**.  And government continues to wrestle with the problem of how to fund adequate  - never mind good – care for a population that increasingly lives into very old age with a variety of high dependency needs.  If families can be persuaded (or guilt-tripped) into shouldering more of the burden, the thinking evidently goes, the state can shell out less.

But do those who posit this neat fiscal logic really understand what they are asking – and of whom? 

In the last year or so, we have been treated to a similar sermon from both Jeremy Hunt (Secretary of State for Health) and Norman Lamb (former Minister of State for Care and Support***).  I am frankly sick of usually male politicians sanctimoniously preaching self-sacrifice without remotely practicing it themselves or acknowledging the true cost for those who have no choice.  Time to take off those rose-tinted specs. 

For we cannot assume a cosy set-up of extended family who live in the same few streets and can pop in to mum’s with a casserole of an evening or help granddad mow the lawn while granny baby-sits the kids.  For one thing, families tend to be smaller now.  I am myself the only child of an only child and have no children of my own to care for me in the future. 

And in today’s society, people often have to move hundreds of miles away from hometowns in their youth to study or find work, as I did; however much we may love our relatives, caring for them in old age may well involve one or other party uprooting at a stressful time of life, leaving home, job, hard-won income and support network behind.

Otherwise the relentless and exhausting shuttle of long-distance travel, coupled with round-the-clock phone calls and emails to arrange care, liaise with professionals the carer can never meet face-to-face in office hours, and manage an escalating litany of crises.

If we explore the live-in option, not everyone has a house big enough to welcome a dependent relative or carer, which can involve the cost and upheaval of building an extension, modifying an existing home, or both parties selling up to purchase a new property or going on a local authority waiting list to be rehoused. (Perhaps this doesn’t occur to politicians who have two or more properties at their disposal, funded at the taxpayer’s expense…) 

That’s assuming that both parties are agreeable to the arrangement in the first place and can sustain it over a number of years. The ideal of multi-generational living, as exemplified by those notional Asian families, is all very well in theory; but, apart from the practical challenges, sharing a home 24/7 when you have been used to your own space and privacy can put a huge strain on relationships. And not all elderly people themselves want to surrender their independence to move in with relatives whom they may see as controlling or whose busy lifestyle is stressful to them.

Crucially, I would suggest it is still women who most often have to be the main facilitators of family care and shoulder the greatest daily and long-term burden – not just looking after their own parents and children, but often in-laws, aunts and uncles too.  That’s how the fabled Asian and African families traditionally manage – by keeping women at home to attend to everyone else’s needs.  And in the 21st century, they too may have to hold down a job outside the home as well to make ends meet.  (For a female perspective on the reality for Asian carers, see Manjit Nijjar's story and the Sikh community dementia research of Dr Karan Jutlla; and for the South Asian caregiver's journey, A Fragmented Pathway by Shahid Mohammed.)

Many would say they do this out of love, not “obligation”; but don’t men love too?  As I have noted in my previous post, Social Care: A Women's Issue, there are of course male carers of spouses and parents who act with equal devotion, but it’s relatively uncommon for men to take this on as sole responsibility if there is a female relative to hand, just as it remains a minority of men who choose to be primary carers of children.

Even where men and women share responsibility for an elderly relative, it is more usually the woman who withdraws from her career, either taking on a part-time post that offers more flexible hours or giving up paid work completely when care demands a round-the-clock presence. 

Which brings me to the other main issue.  What does Simon Hughes imagine “care” to be?  I have touched on this in my earlier post, Social Care Is Not A Lifestyle Choice, but it continues to frustrate me that policy-makers remain largely ignorant of the reality.  So I’ll spell it out here.

Yes, a loving family can adjust its routine without too much upheaval to help a frail elderly person to shop, cook, clean, have some company, and get out and about.  If that were the extent of the “sacrifice”, we would not have much of a problem. 

But in previous generations, average life expectancy was no more than early to mid 70s.  (That was the basis of pension and National Insurance contributions.)  People died of acute illness before they became routinely dependent on others.  Today, life expectancy has risen by a decade and climbing; advances in medicine and technology keep the body going, but not necessarily the mind. 

69% of people living in care homes have some form of dementia; that’s why they are there.  Not generally through the selfishness or indolence of relatives who can’t be bothered to make some small sacrifice, but because their practical needs and behaviours have progressed – often over very many harrowing years – to an extremity where even the most loving of family carers can no longer cope.

The main distinguishing feature that can set dementia apart from other forms of frailty is lack of insight. Many people with symptoms disruptive to their independence never receive diagnosis (or receive it much too late), because they simply don’t recognise or accept their degenerating capacity and may be antagonistic to the expressed concerns of others; and without diagnosis or at least acknowledgement of the problem, external support is very difficult to access. 

Thus a person may get into considerable difficulties over a very long period of time, with family, friends, and professionals desperately doing their best to fire-fight with no co-operation, until some major crisis finally precipitates the dreaded decision to consider residential care. This is the situation I faced with my mum: The Crisis We All Dread.

For dementia is not just a bit of “memory loss”.  It’s a syndrome of progressive, cognitive disorders that can escalate to consume every daily function of a person’s life.

In my mum’s case, it began more than twenty years ago, when bereavement triggered separation anxiety and disproportionate emotional responses to certain situations; then came gradual short-term memory loss, leading to repetition of conversation and confusion over appointments and events. Her ability to manage money and admin became compromised, with PIN numbers and passwords a particular challenge; household tasks fell by the wayside due to lack of concentration and declining grasp of everyday technology such as washing machine, cooker, and hoover. 

Even so, I managed much of this myself for many years and could have arranged further domestic support.  But mum was unable to acknowledge her deteriorating capacity and vehemently denied needing any help at all.  She could not recognise the extent to which I was effectively running her life and would not accept external agency to spread the load. 

A series of physical crises – falls and fractures – escalated her decline, and cognitive symptoms came to the fore: loss of capacity to interpret instructions and reminders and of motor skills to manage food packaging and household tools; compromised spatial awareness and mobility; inability to decode social signals and understand boundaries; and most of all, paranoia – a pervasive, unfocused dread that caused distressing personality change, irrational outbursts of antagonism and unwarranted suspicion that often obstructed attempts to care.

In recent years, mum became unable to understand the difference between an ansaphone message and a live person speaking, leading to distress at being “snubbed” by friends and relatives who were merely out; her short-term memory loss developed to a state of being unable to remember the previous sentence of a conversation, or an incident one minute ago. 

To her, a person out of sight might just as well have been absent for a year than the actual two minutes they had been in the kitchen putting the kettle on or upstairs in the loo. Hence a constant feeling of abandonment, resulting in the need to have someone in sight or on the end of the phone at all times.  She could not be left alone for even five minutes in a public place (for instance to park the car) and increasingly not even at home. 

Previously very fastidious, she came to neglect her personal hygiene and reject all efforts to help.  Despite a fridge stocked with foods requiring little or no preparation, she stopped feeding herself because even the memory that there was food available and the understanding of what to do with it could not be retained.  She could no longer manage her own medication from a pill-counter with each day clearly marked, because she could not interpret it; and if I were there to administer medication myself, she would argue black and blue that she had already taken it and refuse to accept evidence to the contrary.

Finally, she stopped recognising her own home, even forgetting which was her own bedroom (where she had slept for 40 years), and started obsessively packing random belongings to flee and wandering out in distress, sometimes at night, often leaving the door wide open and her handbag on display. 

By this stage – two decades after the first emerging symptoms of dementia - I knew I could no longer keep her safe and well on my own 24 hours a day.  I too was at breaking point and had no option but to arrange a residential care place for her.  This was an absolute last resort that I had done everything in my power to avoid; but it has saved mum’s life - and possibly mine as well.

Now she has moved on to the nursing unit in the same home.  A visiting friend asked me why, as in her eyes mum looked much the same as in recent months.  But her increasing frailties are not always visible to the casual observer. 

The nursing unit, I explained, is not just about medical care; the staffing levels are double those in the residential wing.  It takes two staff to lift each resident safely in and out of their chairs and beds several times a day with a mechanical hoist, to attend to their personal hygiene and keep them mobile to some extent. Residents at this stage may need physical help to eat and drink, to dress and undress – again, very labour-intensive.  And principally there is continence. 

Most residents in the nursing unit are doubly incontinent.  People who have not encountered this probably don’t realise that in dementia it is not just about losing physical control of bodily functions, but loss of capacity to understand what to do, and what is socially appropriate.  To be explicit: carers may have to contend with faeces smeared on walls, on clothes and in hair, or parcelled up and hidden among clean clothes in drawers, in vases, or biscuit tins. There are complex psychological reasons why a person cannot help this behaviour, which is logical to them; but it is undeniably hard for others to manage, particularly a sole family carer in a domestic setting. This, I would suggest, is probably the main determinant of residential care – the other being aggression.

The cocktail of symptoms varies with each individual and many won’t be aggressive at all.  But for those who are (more usually, but not exclusively, men), behaviour can be totally out of character, frightening and sometimes dangerous.  In mum’s unit, I have witnessed an otherwise benign and pitifully frail old man suddenly come out with a tirade of foul abuse at the gentle young nurse in charge, simply for attempting to take him to the toilet for his own health. She copes with it, because it is her job and she can maintain a degree of emotional detachment; but on a human level, one cannot help but be shocked.  How much more upsetting, if it’s your nearest and dearest to whom you have devoted your life, who is treating you in this way?

In the same unit, I was also present for the birthday of a female resident, who is now unable to sit upright or to speak.  She spends her days in a special reclining wheelchair.  Nevertheless, she was clean and neatly dressed with nicely-styled hair; kitchen staff had baked her a beautiful cake with a candle and her name iced on it (as they do for all the residents); the carers made a ceremony of the occasion, and we all sang happy birthday before sharing the celebratory tea. I was moved to tears by the simple kindness of the staff and the tender devotion of the lady’s elderly husband, who sat holding her hand for an hour, despite her inability to acknowledge his presence.  I can well imagine the lonely years of anguish that had led him to this point – I’ve been there too and will continue on the same path.

If Simon Hughes knew this, would he still say that man and I – and all the other families who have a relative in care – lack a sense of “obligation” or “sacrifice”?  That we don’t care?

On top of this emotional trauma and loss of our shared past, mum and I (like many others) have lost our family home to care costs – already over £120,000 for two and a half years and counting. 

Thirty-odd years ago, I was an Oxford contemporary of Simon Hughes’ ministerial colleagues, David Cameron and Michael Gove (indeed I read English with the latter).  Back then, my future looked as bright as theirs. I established a successful career in TV drama; but after a decade of missed work opportunities and life chances, attending to mum’s needs, I find myself single, childless, and with virtually no savings, having to start again.  But perhaps I have not sacrificed enough…?

I have met and corresponded with numerous others who have shared a similar heart-breaking experience. There are no doubt some people who shirk responsibility and put themselves first – just as there are benefit cheats, multi-national corporations that don’t pay tax, and politicians who fiddle their expenses… 

But don’t tar us all with the same brush. I have yet to encounter one person who has willingly placed their relative in residential care for selfish or feckless reasons and merrily continued with his or her own life unscathed. 

The bottom line is that the economics of care funding, based on continuous employment until 60 or 65 and death from acute illness at 75, no longer stack up.  Government has not yet found a solution to the vast expansion of need, set against contraction of resources.  To an extent, it’s not party political.  Opinions may differ on how to cut the cake, but no-one is offering more cake.  It’s a question of priorities. 

So get real, politicians: have the honesty to say, “we will not fund your care”.  But don’t pretend that it’s families (mostly women) who can’t be bothered to look after their own.  If there is a moral failure here, I can assure you it’s not ours.

* This post was written in 2014, under the Con-Dem Coalition government.  Simon Hughes lost his seat in the 2015 general election.

** Simon Hughes was a government minister at the time of writing.  Subsequent ministers, such as Conservative Jackie Doyle-Price in 2017, have expressed similar views, exhorting families to do more or to pay more for their own care, despite evidence that many are already stretched to breaking point on both counts.

*** Norman Lamb was Minister for Care and Support in the Com-Dem Coalition cabinet until the general election of 2015.  He held his seat in that election and was a candidate for leadership of the Liberal Democrats.  He retains a special interest in socialcare and does have family experience of these issues.

Update: my mum died in January, 2020. She had lived with dementia for over twenty years.  We had virtually no help from the state in all that time.