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”.  (I shall address these points below.)

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. 

70% of people in residential care have some form of dementia (Alzheimer's Society UK statistics); 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. 

Twenty-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.



42 comments:

  1. What a powerful and eloquent response. It ought to be printed in a national newspaper for all to read.

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  2. Thank you for this thought-provoking post. Here's hoping that Simon Hughes gets to read it.

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  3. Thank you for sharing your heart-breaking struggles Ming. I too hope it finds a much wider audience.

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  4. Thanks, both. Did write a piece for Guardian Socialcare last year (link on homepage sidebar). Thanks for reading and sharing.

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  5. Since this hit the press the Alzheimer Society forum (talking point) has had an ongoing thread which shows the anger that Carers feel towards SH.SH is living in a different world to people who care for their loved ones. I sent SH an email for which I received an automated reply which stated that as he was not my constituency MP so no reply would be forthcoming.
    I am so pleased to read this article but how can we make SH understand the damage he does with his ill informed opinions.?
    My Husband is 67 and at the severe stage of AD.He has been ill for 8 years; violent/doubly incontinent/frail/almost immobile/no cognition and he doesn't know me even though I visit everyday.

    Yes SH my husband is in a CH; but I hardly fast tracked him there. I looked after him for 7 years on my own. Are you saying that I didn't do enough? I suggest you do 24/7 home caring-I expect you would last for 1 day before retreating to your comfortable city 'club'- that's after you've changed your clothes because human waste does tend to smell when you've been smothered in it.

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  6. Exactly. I'm afraid he's by no means the only one, though; this is such a familiar sermon from male frontbenchers. There are other MPs on the backbenches who have personal experience of the issues and do understand: see the Hansard link towards the end of this earlier post:

    http://dementiajustaintsexy.blogspot.co.uk/2013/02/social-care-womens-issue_27.html

    I'll also be speaking at this event on 16 May for Dementia Action Alliance Carers' Call to Action, and will raise the issues then:

    http://alzheimersshow.co.uk/london/alzheimers-talks-theatre/

    There's such a lot about dementia in the media now, but I'm afraid we have to be brutally explicit about the reality, if the wider public and policy-makers are to understand that it's a lot more than just soft-focus "dotty" memory problems.

    (Sorry, I don't think the links work as live in comments, but if you copy and paste into your browser, that should work. The blogpost, Socialcare: A Women's Issue, is linked above and in the sidebar archive.)

    Thanks for reading and commenting.

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  7. God bless your response and the many others that have followed. I wonder how much time Simon Hughes has spent on a daily basis looking after a loved one with dementia? Me thinks very little. I too have lost a mother to dementia, Because of this I feel my proudest career moment was working with Alzheimers Society about 20 years ago to demystify the disease so that few did not understand what Alzheimers was about! I would appear that Mr Hughes has not been reading all this info!!!

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  8. Thank you. Sad to see that the message is still not getting across in some quarters. We have to keep on speaking up. Thanks for reading.

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  9. This echoes so much of my own experience with my mother. Just because she is now in a nursing home doesn't mean I have stopped caring for her, It means there is a team there working with me. She moved to live in a nursing home near me when falls and behaviour became impossible to manage in a nursing home 150 miles away. She chose the original nursing home because she didn't want to move near me, but that decision nearly proved fatal. I am able to help her with breakfast and supper every day, as she has swalllowing problems and is on a puree diet and cannot feed herself. Mealtimes are important social occasions and she has maintained her weight because I am able to sit and help her for the hour to ninety minutes it can take her to eat her meal. There are many other ways in which I continue to care for her and I am not the only relative who does this. I resent the assumption that once our relative is in a care home we just walk away. I am able to provide what the nursing home cannot, I take her out, I organise other activities. We are fortunate to be able to afford to do this, because even though she is in the later stages of vascular dementia, there is a lot that can be done to improve her quality of life. I provide emotional security and attachment. The level of care there is good, but nothing like enough. Plus as Ming Ho says, we are paying for it. I do this because I love my mother. Not everyone can do as much as I can and yes, if I could manage all the multiple needs she now has, of course I would do that, but there is no way one person can do that alone, it requires more than one person, it requires equipment, it requires multiple skills, it requires training and knowledge.

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  10. Well said. Thank you. I really want the wider public and politicians to understand this, to stop having unrealistic expectations of families and to prioritise proper support.

    No-one thinks this will happen to them, until it does. Conditions such as dementia (and other chronic, degenerative diseases) are no respecters of intelligence, status, or determination. Caring can be anyone's and everyone's problem.

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  11. Brilliant blog Ming, and totally agree with what you've said.

    My father was in care homes for 9 years. We had no say in this decision as health professionals decided he was unable to remain at home due to risks posed to himself and others as a result of his vascular dementia. We never loved or cared for him any less, indeed we spent as much time as possible with him and were very hands on in caring for him.

    Such an important issue to raise, thank you.

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  12. Thanks, Beth. So many of us go through this and feel enough grief about it, without being made to feel that we have somehow failed. Which is why you and I and others who can write and have the opportunity to speak at events need to keep telling it like it is.

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  13. A very thoughtful and thought provoking piece that should have a much wider audience . I have had little exposure to the issues around dementia but now feel more aware of the devastating impact on the person with the illness and their families. This should be required reading for policy makers.

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  14. This is amazing. This is a wonderfully eloquent piece of writing. I am at a relatively early stage of caring for a parent with dementia & I too was INCENSED by Simon Hughes's comments. I am so sorry about the loss of your home & savings. Just not right. I am going to share your post as widely as I can.

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  15. Thanks very much, Anne.

    I should clarify that the home referred to is not my own personal home - a flat, which thankfully I still have - but our family home of 40 years, where mum was living until she went into care and I was often staying with her.

    As discussed in my earlier post, Social Care Is Not a Lifestyle Choice (see link above), I don't say that we shouldn't have to pay for care at all, if we can afford it (as many cannot); but assets are not the same as ready cash and such huge funds can be very hard to realise at an already stressful time.

    And of course the emotional impact of losing your shared past so completely, at the same time as losing your loved one to care, cannot be underestimated.

    See my post of August 2013, Everything Must Go, which describes the feelings involved in packing up the family home; and A Stranger in My Home Town, which explores the grief of losing shared memory:

    http://dementiajustaintsexy.blogspot.co.uk/2013/08/everything-must-go.html

    http://dementiajustaintsexy.blogspot.co.uk/2013/04/a-stranger-in-my-home-town.html

    (Live links available in archive from blog homepage, right hand side)

    Thanks again.

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  16. i'm rarely moved to tears, but read this has brought the realities of dealing with this crashing home on me.

    I myself am at the stage where my own parents are now starting to get 'old', I don't just mean they are advanced in years, but in their outlook; I am having to take an increasingly active role in their lives, particularly with regards to decision making. Whilst neither currently suffers from dementia, the responsibility of what is to come, even without the horror of dementia, overwhelms me.

    Incredibly moving piece of writing.

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  17. Thank you very much, Shell. Appreciated.

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  18. Wow. So very glad I came across this by some byzantine chain originating on Twitter. I have just had to cremate both my parents in the last several months; both had dementia. I, too, am an only, and there was no one else to help. Dad had to go to a facility because of the incontinence and increasing aggression; Mom died of cancer before the dementia took her to that extreme, thank god for that -- she would have hated it, too.

    I would like you to consider this: there is increasingly research showing the linkage if not outright causation of some types of dementia with sleep disorders, most particularly sleep apnea. Both my parents had it. I had it, it went undiagnosed for so long I had early signs of dementia myself, and treatment with a cpap/ auto-pap have given me back most of my brain. Not all, but enough -- for now. I worry about dementia in my own future, and after the loss of career and financial stability when I never ever thought that could happen to me -- the world looks a very different place.

    Thank you so very much for writing this. I will send the link on on Twitter, and I hope that you will be certain to be screened for sleep apnea yourself. Absolutely please do that. I hope that you are wildly successful in your advocacy efforts.

    Best wishes to you.

    @BrainsNeedSleep

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  19. I'll echo some of the comments above, great piece of writing, I think you've just given me a comprehensive insight into dementia care, I do feel the rather sexist and generalistic points you make detract from your main point.

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  20. Thank you, @BrainsNeedSleep. So sorry you've been through this not once, but twice and on your own too.

    Yes, I'm aware there can be links with sleep apnoea, whether causal or otherwise. My mum has experienced that too; not sure if I have, although I do worry about developing dementia myself anyway.

    Thanks again for reading and commenting; will look up your links.

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  21. Thank you also, Anonymous.

    I appreciate that not everyone will agree with the male/female points, but these are my observations. I'm not in any way saying that men can't or don't care with equal commitment, but there remains a greater proportion of women who find themselves in this situation, while the majority of MPs and high-level policy-makers are still men (see stats cited in Social Care: A Women's Issue), who are correspondingly less likely to have direct personal experience of social care, as either carer or cared for.

    The financial disadvantage to women through the combination of factors detailed in that post also has a factual basis.

    However, the analysis is opinion, so feel free to disagree! I appreciate your reading and am glad if any part of the post has been useful or illuminating. Thanks.

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  22. I appreciate that the policy makers are male dominated and less likely to have direct personal experience and therefore biased, however to assume that any group of people is incapable of understanding or sympathizing because they have no direct experience I think is a mistake, for example I myself have no care experience but could appreciate the validity of your objective points, does potentially antagonizing the reader's intelligence strengthen your case?

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  23. Hi, again. Thanks for returning to debate.

    I'm not assuming that any group of people is *incapable* of, or even unwilling to understand; far from it, I sincerely hope that by discussing these issues, more people will come to do so. That's why I write this blog.

    I'm simply saying that current evidence - e.g. government policy and PR - suggests that as yet not enough people in *positions of power* do fully appreciate the realities on the ground.

    That is not to insult the intelligence of readers here; as you said yourself, you didn't know some of these things until you read about them in this post (and I didn't know them until they happened to me). Maybe even ministers and commissioners, who do know a great deal about policy and funding from professional briefings, still need to hear personal stories to see the other angle, and, perhaps more importantly, to feel it on an emotional level.

    Otherwise why do the same glib messages persist in ministerial statements: that if families simply tried harder, frail and elderly people would not need to go into residential care or apply for state support?

    If this is primarily a financial imperative - government has decided that the sums just don't add up - they could be honest and say so: we *know* it's tough, but sorry, the purse is empty; deal with it.

    But such candour is alien to the political process, so the message tends to be presented as a positive social strategy. Encourage more neighbourliness, more familial loyalty and sacrifice, and we all benefit - it's morally good. Well, yes, of course it is.

    But if policy-makers genuinely believe that this much (i.e. little) is sufficient to meet the intense, long-term care needs I describe above, it does suggest that they don't really understand how grindingly hard 24/7 care is in practical and emotional terms.

    I put forward the theory that lack of direct experience among high-level policy-makers might have resulted in a knowledge gap (which is not the same as saying that those without direct experience *cannot* understand, if they have the opportunity to access that knowledge and the will to act upon it); the alternate theory, perhaps more flattering to intelligence, but not to morality, is that they do already understand, but pursue a policy of placing intolerable responsibility on unsupported family carers for reasons of financial or political strategy.

    But I take your point that I could remove this angle from my post to appeal to a broader audience. I choose to leave it in, because I think it's worth debating, even if you don't agree with my conclusion. I just want to get people thinking and talking about the issue, as it will one day affect most of us in some way.

    Thanks again for your thoughts.

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  24. Thank you pointing it out clear to politicians. But will it make a difference in today society.

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  25. Another great article Ming. As always, I've reposted it at Dementia Journeys.
    Keep up the great work!

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  26. Thank you, John; appreciated.

    @ Anonymous: We can but try!

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  27. Hi, about the debate.

    And that is it, I agree, people (and hopefully policy makers) need to connect on an emotional level with your story, as I did, I think the interwoven politics and speculation are a distraction from your powerful story and may be a turn-off for some.


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  28. Point taken! I have written more purely personal and emotive pieces before though - see live links in 2013 archive to e.g. The Crisis We All Dread; Paranoia - and the Other Fear That Dare Not Speak Its Name; A Stranger in My Home Town; Everything Must Go.

    On this occasion, however, it was the political context of remarks prevalent in the media that compelled me to comment after a long silence. Hence the analytical/speculative aspect. At other times, I expect I shall return to exploration of the emotional landscape of dementia.

    Thanks again for your interest. All the best.

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  29. Thank you very much for your article and your honesty. We need candor and open discussion on this fatal disease which robs our loved ones of so much. This issue is going to become more difficult, not less difficult for our society as we see the waves of baby boomers affected.

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  30. Thank you, Jeffrey. When talking about this, it is hard to strike a balance between acknowledging the autonomy and retained capabilities of a person with dementia (which should always be respected), and being frank about the difficulties for the carer.

    And of course there is such a huge spectrum of symptoms and stages, that one family may see a manageable experience. while another is totally at breaking point.

    I have this week had to read through my mum's NHS CHC (Continuing Healthcare) Assessment, which rates funding qualification for nursing care by scores under headings of Behaviour, Cognition, Communication, Mobility, Psychological and Emotional Needs etc. Surely no-one would want to see their loved one reduced to such a bald checklist of capacity/incapacity?

    But so long as funding models require it, I tend toward the view that those of us who know the realities first hand need to be completely open and honest - indeed explicit - about the most challenging aspects, if we are to get the support we so desperately need from policy-makers, commissioners, and the wider public.

    We all tend to think this won't happen to us; but it can and it does. So the more people know what to expect, the more likely society is to invest in it (both literally and metaphorically).

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  31. Excellent piece Ming, personally I think it hits the nail on the head and I disagree with the comments about interwoven politics and sexism. I am male and my dad has vascular dementia and his primary carer is my mother who is almost 70. I have brothers and sisters but in the main they are to a large degree in denial about how bad my dad's condition is and have no idea how hard it is for my mum to cope with him 24/7. But in the main if my sisters were not in denial they would be offering the support to my parents which I currently do.
    Discussion about dementia MUST be interwoven with politics because it is not a party political issue (they have all consistently demonstrated a lack of true understanding) but these are the people with the power to make changes.

    Shell commented that his/her parents do not suffer dementia, but my dad was diagnosed in 2010, but looking back now at photos, video and thinking about how he was, I would say he had startings of it as far back as 2004.

    My mum feels guilty if she gets annoyed at my dad at all but it is only because of her that he is not in a care home. if he was in a care home it would not make her life easier as the constant care at home would be replaced with endless travel to visit him and her felling guilty afterwards.
    Finally, while I to some degree agree with the comment about not requiring to have direct experience to be incapable of sympathy and understanding, what I would say is that until you have experienced a close relative with this horrible disease on a regular basis over a long period of time, it is in my opinion impossible to comprehend what the carers experience. I personally do not believe GP's, social services or politicians really understand the issues or the disease sufficiently - we need more research and we need politicians forgetting about the politics of this.

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  32. Thank you very much. Yes, I think with hindsight you can see symptoms from a long way back; but you don't recognise them until you see the overall pattern, sometimes many years later. That's another reason why I started this blog - in the hope that it may help others to spot the signs before I did and try to get earlier help.

    And yes, dementia is an issue largely beyond party politics. All parties struggle with the economics of it; and as it requires long-term investment (both financial and practical), it's always tempting to bump it down the list of priorities for your successor to deal with, while focusing on the issues of "hard-working families" (childcare, tax breaks, mortgage rates, school places etc), which are perceived to be greater vote winners.

    But the thing is, those same families will be dealing with dementia too - either here and now, through older relatives, or directly in the future. It's not just "someone else's" problem, it can - and will - affect a great number of us. So it would make a difference to have more people in power who truly understand the challenges, rather than paying mere lip service. (And yes, even professionals who work in the field may not really "get it" until they experience it first hand in their personal lives.)

    Thanks again for taking the time to read and share your own experience. All the best.

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  33. Hi there,

    I am a fellow caregiver and just came across your blog.

    I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now.

    I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well - http://dementiapoetry.com.

    The blog is an honest account of my experience of caring over the last few years in poems - some silly, some exasperated, some happy, some sad - of my last three years caring for my mother-in-law, who suffers from Alzheimer's disease, and is aimed at helping to support other caregivers in a similar position.

    If you would be happy to link to me, I would gladly return the favour!

    DG x

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  34. Hi, there

    Thanks for letting me know about your site, which sounds interesting. I don't generally link personal sites on this blog - there would be so many from people I know, so I just keep it to official sources of advice & info here.

    But if you're on Twitter, I'll happily share posts about your site, if you let me know your Twitter name.

    All the best.

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  35. Thank you for posting this. It's a brave and an excellent piece. I've shared it with many others. These themes aren't cool but they will be importante to everyone in a just a few years. Thank you again.
    Sofia

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  36. Thank you, Sofia; appreciated.

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  37. Wow the best piece I have read on caring for someone with dementia. We need more like this.

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  38. Thanks very much, Pippa. Mum is now entering the latter phase of her illness and I don't know what I would do without the support of the residential care staff. Families should not have to feel guilty for accepting this resource, which usually comes at the end of a very long and harrowing road.

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  39. Excellent piece which I found via your post on The Guardian. I have given up my career and moved 200 miles with my husband to care for my parents. My husband is currently unemployed as we are in a very poor area of the country. I am now a part-time cleaner in addition to caring for my parents. Things only get harder. No-one equips you for this. The services available are pathetic and piecemeal. There is no meals on wheels and no local authority home helps any longer - only private companies with, usually, I am sorry to say, unmotivated, untrained, very low paid, bored and sometimes rather thick staff, who I would not let within 100 yards of my chronically ill and immobile father. So we get along without them. Sending you love and support. None of us could have known what life had in store for us. All we can do is to carry on doing what we think is best. I have no kids either and won't be having any now.

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  40. Thank you. All the best to you too.

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