Who cares enough to care for the elderly?

There is an article in today’s Times 2, written by a pseudonymous Liz Penny, entitled “Who cares?”.
This article makes me angry. Very angry.
“When Liz Penny’s elderly father had a fall and her mother developed dementia, it was the beginning of a nightmare journey through hospitals, care homes and red tape that took her and her close-knit family to the brink of despair”In a long article (here) Liz catalogues the unrelenting decline of her once fit elderly parents. Dementia, alcohol abuse, broken bones, frustration and depression.
“In December 2004 they seemed fit and well, living comfortably and independently in their home of 40 years in the Midlands. We are a close and loving family and spend a lot of time together; I had noticed nothing seriously amiss. Then Dad fell over and cracked his head on a windowsill. There was a lot of blood.”The NHS is far from perfect and there are inadequate resources to look after feeble, elderly patients existing in the hinterland between so called “genuine” illness and “mere” frailty due to old age. And there is a regiment of non-medically trained commissars with clip boards tasked with over-ruling doctors and declaring elderly patients' “problems” as not falling within the ambit of the NHS.
I return to this topic frequently and touched upon it recently when I described Mollie Jones .
But that is not what gets me angry about “Who cares?”.
What gets me angry is the attitude of the author, Liz Penny. For, you see, it is people like Liz Penny who are bringing the NHS to it’s knees. Liz would say she is well-meaning, and maybe she is. But she lacks insight. In reality, Liz is a Welfare State scrounger. She is presumptuous, hypocritical and uncaring. All GPs know Liz Penny. “Liz Penny” is a pseudonym, but is also a collective noun. All GPs get phone calls from Liz Pennys and they always say the same thing.
“Something must be done, doctor, but I am not going to do it.”Let us look at the Liz Penny story in more detail:
“Dad had a chest infection and was very confused. He was also going through alcohol withdrawal – it turned out that his GP had known for a year that he was alcohol-dependent, but had been unable to convince him to get help.”Why did you not know, Liz? How often did you really visit?
“We moved Mum in with me, 15 miles from her own home in the opposite direction from the hospital, while we all got over the shock. Another was to follow. Her forgetfulness was dementia. She asked the same question six times in 30 minutes. I had to label my kitchen cupboards and write out for her every night where she was and what was happening the next day. My sister Pam and I juggled our jobs with caring for Mum and visiting Dad, a two-hour round trip.”How had you managed to miss that Mum was dementing, Liz? How often did you really visit?
“Complete strangers to the welfare state, Pam and I turned to the internet to try to establish what financial help might be available. The answer seemed to be none, if my parents had substantial savings, which they did – Dad had astutely, or so he thought, raised £50,000 recently via an equity release on their house and put it in the building society for their future care needs.”£50,000 is a lot of money. More than most can lay their hands on. Why should Dad not contribute to his own living costs? Unlike his daughter, Dad is attempting to provide for his own care. Why shouldn't he? Why should this burden fall on the taxpayer.
“Winter turned to spring. We moved Mum back to her own home, got her a referral to a memory consultant and, after much phoning, form-filling and investigating, found an agency to supply carers to visit her three times a day.”Why did you do that, Liz? Why did you not keep her with you?
“Mum’s daily carers were variable and the agency was unreliable. Mum lost a lot of weight. My sister and I rang her every day; she was tearful and confused. We rang each other eight times a day: Have you seen Dad? Can you get to Mum – the agency can’t find anyone to visit tonight. Have you phoned their solicitor? Can you get to their building society? Have you rung Mum’s GP to organise a medicines box from the pharmacy (a friend of a friend told us about this)? Can you buy Dad more pyjamas? Who’s collecting Mum on Saturday? Have you rung social services? Can you look for a gardener and cleaner for Mum? Have you paid her chiropodist’s bill? Can we get together to fill out these funding forms tonight? Who’s taking a day off work this week to get her to the memory clinic?”Heavens, it is hard work, isn’t it Liz. Let’s hand it over to the tax payer. Do you really suggest that the NHS should be looking for gardeners?
“We put our own lives and families on hold and irritated our work colleagues with the long list of phone calls we had to make day in, day out. It was relentless, depressing and utterly exhausting – and that was with two of us to share the load.”Sharing the load? Liz means sharing her guilt of passing on the load to someone else.
“Fit from years of tennis, Mum recovered physically and returned home. But spring turned to summer and her memory worsened. We went back to the internet and found another agency to supply live-in carers – mainly wonderful South African women who cooked her fresh food and played Scrabble with her. She put weight back on (but not before her own mother’s engagement ring slipped off her thin finger and was lost) and I felt confident enough to skip some weeknight visits, although I still phoned her every day.”You see, Liz, a bit of tender-loving-care and Scrabble, even from a South African woman, worked wonders. Think how much better it might have been if you had had the time to play Scrabble.
Then mum has more medical problems and needs a prolonged hospital admission. Eventually, she stabilises and the time is reached at which it is no longer appropriate for her to be in an acute medical ward:
“Then the hospital started to ask what our plans for her were; they couldn’t do any more for her and she was bed-blocking. We had to decide between a nursing home and herown home.”Liz still ignores the obvious solution. It does not occur to her. Instead, Liz is now openly wishing her parents dead.
Why is Dr Crippen angered by Liz Penny?
Because, like all Liz Penny’s, she will do anything except that one thing that would really help. Why did you not give mum and dad a home, Liz? Bit inconvenient? Other commitments? House too small? Who knows. You could have sold Mum and Dad’s house and put a granny flat on yours, or bought a bigger house and used the residual funds to pay for carers to come in as and when necessary. And you would have been supported by the district nurses, and the family doctor.
God, it would have been hard, wouldn’t it Liz? It would have interfered with your social life, and your skiing holiday, and maybe you would have had to reduce your hours at work. But they are your mum and dad, Liz.
So OK, you couldn’t hack it. But pleeese don’t come all this crap about
“We are a close and loving family and spend a lot of time together.”You may think you are, but you are not. If you were, you would have picked up on the drinking and dementia yourself.
“We are therefore still topping up the care package to the tune of £130 a week…”Oh tush. Tush tush. You and your sister are having to pay £130 a week to ensure mum and dad have decent care. You are a middle class family. How much did mum and dad fork out over the years for clothes, shoes, music lessons, swimming lessons, allowances, extra clothes, birthday presents, a little financial help here and there, presents for the grandchildren, holidays and riding lessons?
“I am so angry that we have arrived here. I am angry with Dad for not telling us about Mum’s dementia. I am angry with Mum for not telling us about Dad’s drinking. I am angry with myself for being powerless to make it all better for them with a wave of a magic wand.”Not a magic wand Liz. And no, you could not make it “all better”. But you could have improved on a game of Scrabble with a South African nurse.
You could have made mum and dad welcome in your own home.
“I am angry with the NHS for the disgraceful treatment of both my parents in two large hospitals. I am angry with the Government for its callous underfunding of care for the elderly.”The care of the elderly is underfunded. But Liz, your Dad is rich. He was, in your own words a “globe-trotting businessman father” and has, as one would expect, considerable financial resources; a state pension, two small occupational pensions, and £50,000 in the bank. And his own house, not a council house. Most people just have a state pension.
What are you really worried about? That you are going to have to spend your inheritance?
I agree that the care of the elderly in NHS hospitals is appalling. But that is not the most important issue here.
“I am angry with social services for the apathy, the lack of help, the misleading or contradictory information that repeatedly dribbled our way.”They are not apathetic. Social workers are overworked, underpaid and jaded. And yes, they do become a little cynical about the middle-class Liz Penny brigade saying “something must be done” but meaning “something must be done by someone else.”
"I am angry with God for drawing out their end in this demeaning way. If He does it to me, I shall sue.”I like the last sentence, Liz. If you have an address, there are a few writs I would like to send to Her too.
But the preceding sentence is a tad naïve. Even with optimal medical care, being frail and elderly with multiple medical problems is a bugger.
We may all hope for a long, peaceful and untroubled old age but in reality it is rarely like that.
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Some of you will think I am being harsh to Liz Penny. I am not. There is no God given right to a peaceful old age. Life is not like that.
The NHS was set up and funded to deal with illness, not old age. The problem in the UK is that the Welfare State mentality has turned us into a nation of welfare payment scroungers. Why do families in this country not take responsibility for their own elderly? Why should the taxpayer pick up the bill for the social care of elderly, wealthy businessmen?
Liz Penny's article should have been entitled "Who cares enough to look after the elderly?".
Not Liz, it seems.
Why do we not care for our own elderly relatives? It can be done. Some British families do it. Families of Indian and Pakistani origin. I have never, in all the time I have been practising medicine, heard an Indian or Pakistani say “We cannot look after mother because we have jobs and families of our own” Somehow, they manage.
My practice looks after three large old people’s homes and an EMI unit.
There is not a single patient of Indian or Pakistani origin in any of the old peoples’ homes. There is one hopelessly demented elderly Pakistani lady in the EMI unit. She probably gets more visits than the rest of the patients put together.
There must be moral in this
Labels: dementia, elderly, scroungers, welfare state









132 Comments:
Well said.
youre loosing the plot
it is perfectly honourable to be critical of the non joined up and failing health and social services imposed by the state, and the way the funding is drawn in the most unfair way from many folk, none of which gives incentives for good folk to follow the rules
at the moment most of the incentives are for folk to take the piss, and it is the mass of folk claiming disability benefit and similar who would be better targets for your anger
it is ridiculous to target a worker trying their best to contribute to society for not taking their parents in, it is unrealistic to expect most folk to free up the time needed and hold down a job, yes the way work is structured could be improved but dont hassle the individual worker bee
personally im scared of what will happen to my parents in the coming years, im very unimpressed by what ive seen from socialised medicine and the crap from social services, im frustrated that we could quite easily have self funded appropriate care if we hadnt been taxed massively to pay for estate upon estate of the underclass being perpetuated in unemployment
the system stinks, it costs the wrong people too much money, it provides crap service, dont blame genuine folk who are trying their best to juggle many balls
no one
This seems somewhat harsh. You continually talk about the "taxpayer" as an abstract concept, forgetting that Liz, her sister and her parents are probably taxpayers themselves. Are they not asking for help from the system into which they have paid throughout their adult lives?
There is a genuine debate to be had about use of savings in elderly care - some people would ask whether it is fair that someone who has worked hard and been sensible all their lives ends up with those savings sucked away by care homes, whereas those who have been profligate all theirs lives and never saved a penny get lots of state help. It's not a simple debate, and certainly deserves more than the tabloid treatment you've given it here.
And are you seriously suggesting that a lay person is qualified to care for an elderly woman with dementia. Geez louise. And because she mentions playing Scrabble you snidely assume that that is all that was needed.
And blaming her for not knowing her dad was becoming drink dependent, well, that's just mean. How the hell do you know that maybe he didn't drink when the family was visiting, for example? Or any other of any number of different reasons.
And as you say yourself, you have absolutely no idea why a home wasn't offered to the elderly parents in question. "You could have...", "you could...". You could have no idea what you are talking about; considered that as a possibility, DrC?
This is sanctimonious and self-righteous nastiness, lacking any kind of compassion or empathy. How disappointing.
Too harsh and intolerant by far. Humility please [look it up in the dictionary].
Katherine, quite right: it's a complex debate. However, if you witnessed the phenomenon that is "granny dumping" in acute admissions, you might better understand Dr Crippen's anger (anyway, since when has he ever been understated?).
I appluad you Dr Crippen. It's about time someone told it as it is!!!
Not harsh at all, but quite eloquent.
“Something must be done, doctor, but I am not going to do it.” Nice.
I see the same thing here in the States. Some children expect Medicare to provide everything for their parents. They spend a lot of time harassing the nurses (usually on the phone), but little time with their parents.
~Raven
The NHS should deliver health care. What people need in such times often is social care.
The NHS can not solve these problems for people if they are passive. A comment about the GP such as "but had been unable to convince him to get help" is unfair. The GP can not rail road folk in to management plans. Heck, even the Mental Health Act 1983 specifically excludes alcoholism. If the chap isn't seeking help, it can't be foisted upon him.
There does seem to be a paucity of community support described that I would have expected, including a consultant psychiatrist, CPNs and social workers to have been involved in putting together careplans for social care.
£130 a week seems reasonable, for two. Are they managing on their own or is Liz providing support? Can they manage independently? No, clearly not. So is Liz entitled to Attendance Allowance to attend to their needs? Yes she is. Is it means tested? No, so the £50000 in the bank is safe. Attendance allowance at the lower rate for two is not inconsiderable . . .
I'd largely agree with Dr Crippen's theme that Liz isn't pointing out specific deficits in care, she's ranting that "things weren't done" when there were often no things to be done that would have made everything peachy.
Her article illustrates a difference between expectations of delivering health care to address clinical need, and delivering social care to address what families want.
~The blog posting upsets me - but for different reasons. I guess we could all do more for one another, but it would take sacrifice and a lot of love. My own parents are long dead and I find myself worrying about being a burden on my offspring in the future. But I do agree with one thing, the NHS and social services do a much better job than we often give them credit for in the circumstances in which they have to work.
5 yrs ago, when my wonderful widowed ma-in-law was 86, and our kids had long fled the nest, we offered her a home with us: own bedroom and bathroom and sitting room/kitchenette. She refused, because she wanted to stay in the house she'd lived in since 1942, with neighbours she knew and friends just round the corner. We only lived 3 miles away.
Now she is 91, nearly blind, very deaf, and admits she made the wrong decision. We have since downsized, and my 69 yr old husband is himself losing his sight. We're still nearby, and we do what we can for her (aided by another relative), but we also have young grandchildren and another elderly relative on my side of the family to care for regularly.
You don't know, Dr C, what are the other complications in Liz Penny's life. You are right that the NHS is there to deal with sickness not elderly care, but let's not forget that the medical profession by and large are very keen to keep everyone alive (oh, I can hear your intake of breath and preparation for tirade as I write), without considering the problems for others. Yes, I know neither dementia nor alcoholism is immediately life-threatening, but both are damn difficult for the uninitiated to deal with daily. And just maybe, if the middle-classes were not clobbered by tax so heavily, we would be able to do much more for our families in time of need.
Why should Dad not contribute to his own living costs?
well well, John. You've changed. When your patients have undergone something like this, you've complained because your word was not enough to get them state-funded care regardless of their income, because *social workers* assessed need; you've wailed and moaned about one half of a couple having to see their house, when in fact, they would not have; and so on. I'm unable to applaud your conversion to
'telling it how it is' (ha!).
I agree with Katherine that this is not a simple issue.
Well said Dr Crippen.
Its all about personal sacrifice at the end of the day.
well well, John. You've changed. When your patients have undergone something like this, you've complained because your word was not enough to get them state-funded care regardless of their income, because *social workers* assessed need; you've wailed and moaned about one half of a couple having to see their house, when in fact, they would not have; and so on. I'm unable to applaud your conversion to
'telling it how it is' (ha!).
I agree with Katherine that this is not a simple issue.
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Certainly a complex issue.
But I have not changed my views one bit.
What I hate - and I only alluded to it here - is the fraudulently dishonest attempt of the NHS to label the physically ill as NOT ill but old and frail. And when that happens, they do not get medical care. And it always non medically qualified people with clip boards who make this decision.
I seem to remember a heated discussion with OTs about "can make cup of tea, so not ill" decisions.
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This article is not about that. It is about the assumption in this country that the state, aka the taxpayer, has a duty to care for the elderly whilst their children are skiing in Meribel.
Nowhere in the article is there any hint that Liz and sister considered moving their parents in with them, and caring for them, with help, in the family environment.
Why not?
John
I don't mean to be harsh about individuals & their particular circumstances, but I simply don't buy the "if-we-didn't-pay-tax-we-could-do-more" line. The cultural faultline transcends economics - and there's a kind of double bluff about blaming "the welfare state."
Anonymous said...
Too harsh and intolerant by far. Humility please [look it up in the dictionary].
Tuesday, July 03, 2007 4:14:00 PM
++++++++
don't see how humility comes into it at all, and snotty little remarks about dictionaries do not contribute much.
I did not express things anywhere nearly as strongly as I could have done. As someone above comments, are you familiar with "granny dumping"?
And no one, but no one, ever explains why the Pakistanis and Indians seem able to look after Granny. You seem to have strong views. Please explain why there are so few Indians and Pakistanis in old people's homes.
John
Nowhere in the article is there any hint that Liz and sister considered moving their parents in with them, and caring for them, with help, in the family environment.
Why not?
She took her mother in twice. There may be reasons you don't know (for example, her parents' views on this) why she didn't take them in before. (And of course she may not have had a house big enough for them all -- though it sounds as though she did -- many people don't.)
It is a little tricky to accept a lecture about the keen family ties/bonds displayed by some groups when some of those same groups are responsible for more dowry deaths and honour killings than other groups.
Some families are in deep denial about both alcoholism and dementia. My MIL has never forgiven me for raising the topic of my FIL's cognitive deterioration - even though it became so flagrant (and he so violent) that he ended up being admitted to a locked ward. Neither she nor my BIL have spoken to me in 10 years and there were strict instructions that I was not to attend my FIL's funeral.
I know too many families where, again, it was easier for those in denial to ostracise the person who raised the issue of alcoholism than to acknowledge it. Even when the problem was undeniable, family members attempted to conceal others' sojourns into detox units etc.
Families, eh? They really are complicated.
verb aspects
Sure, sure, to all the complex points you raise.
There are deep waters here in terms of complex family issues.
And I hold no brief for arranged marriages etc, though I think honour killings (I know they happen) are extremely rare in the UK.
It you are saying that families can occasionally be too controlling etc, I would not disagree.
However, most Indian, Pakistani families are not like that, and they DO look after their elderly relatives.
As to arranged marriages, well, it depends what you mean.
I know it is not a controlled trial, but I have a patient who is in her twenties, a business woman, and happily married. Her marriage was arranged. By which I mean her parents selected a suitable man and introduced them. She was not compelled to marry him, and did not feel under undue pressure so to do.
She say she will do the same for her own children. I have chatted to her about it. She always asks me how this system is worse than the lottery of being picked up in the local disco.
It's a good point.
John
Who pays the bulk of taxes - the middle classes.
How dare these people expect something back themselves.
How very dare they!
I didn't actually mention arranged marriages...although, to be honest, I was thinking of the very high self-harming/depression/anxiety rate that I have heard about from colleagues who do work with women from some particular groups. Eg:
http://www.annals-general-psychiatry.com/content/5/1/7
"South Asian women are significantly more likely to self harm between ages 16–24 years than white women. Across all age groups the rates of self harm are lower in South Asian men as compared to South Asian women. These women are generally younger, likely to be married and less likely to be unemployed or use alcohol or other drugs. They report more relationship problems within the family. South Asian women are less likely to attend the ER with repeat episode since they hold the view that mainstream services do not meet their needs.
South Asian women are at an increased risk of self harm. Their demographic characteristics, precipitating factors and clinical management are different than whites. There is an urgent need for all those concerned with the mental health services for ethnic minorities to take positive action and eradicate the barriers that prevent British South Asians from seeking help. There is a need to move away from stereotypes and overgeneralisations and start from the user's frame of reference, taking into account family dynamics, belief systems and cultural constraints."
My knowledge of this area is very patchy and derived from colleagues but I gather there are difficulties in estimating the scale of the problem because so many women do not present to medical or social services that would log the numbers.
Interesting debate.
I have sympathy with Liz Penny and have found myself wondering what I would do in her situation. My grandparents are elderly and we, as a family spend as much time as possible with them. My mother, who still works is back and forth to their flat 3 or 4 times a week. They have care from SS daily. If my grandparents were to move in with my parents, they would get no SS care or support and my parents (both professionals working hard) would have to give up their jobs and care 24 hours.
It is not clear cut and I wonder Dr C, what you, a busy GP with a wife who works too,would do if you had 2 elderly parents needing full time care. Would you give up your job? Would you give up your holidays? Would your children give up their bedrooms for their Grandparents?
As a full time 24 hour a day carer (which someone with severe dementia would need), you would get very little, if any support.
I don't know if I could be that selfless and with that in mind will not be making any judgements Ms Penny on her predicament.
If you honestly think that you did good John, you are mistaken. I have friends going on like this now, and even KNOWING about alcohol issues and mental illness is not serving them well. They cannot get help, are not able to care for people who are physically abusive and mentally tortuous in their home, who have screwed up financially------- and yet from your tone this is what is expected. While raising a young family and working part time.
Maybe when we were young these people were good parents, but in the following years they did bad things. BECAUSE THEY ARE ADULTS THERE IS NO INTERVENTION AVAILABLE.
I know that when a relative had dementia, they were deemed fine to be on their own, and competent UNTIL THEY ATTACKED A NON RELATIVE. Up until then it was not seen as problematic that they were getting more and more violent. THen heaven and earth was moved to get into a care facility.
And what do you do if someone refuses to leave home?
Oh- not very often I am angry reading you, but right now I am ticked.
ImpatientPatient
Dr C - it all sounds so simple - build an extension, buy a bigger house, give up work! How many people have the finances to be able to do that? Our mortgage is huge - won't be paid off until my husband is 67 and 50% of it is interest only.... (ie the capital is not being paid off)
I imagine that caring for someone with complex needs such as Liz's mother is extremely challenging. How do you manage if you have small children when someone forgetful leaves the cooker or the fire on?
There aren't any magic answers here and not everyone is equipped financially or emotionally to care for someone elderly.
John
Well done.
I say this having been the carer for my disabled father from the age of 10. He died in 2005.
The Times would never be interested in my story though because all doctors are supposedly superhuman.
Rita Pal
Why do people not take parents into their home? If did so, I would take her away from everything she knows, her few remaining friends (every week is a litany of who has died)and most importantly, her autonomy. I cannot take that away. When it happens, we will decide jointly.
if she came now it would be:
I would be deciding what we eat - after discussion with her, I would be deciding how most of the house is decorated - it is my house.
How would she cope with two uni students? Their noise can sometimes be intolerable to me. She wants her peace, her routine.
I simply cannot afford to stop working full time. I have other responsibilities - I do not begrudge my mother time - I spent 4 weeks annual leave on hol with her this year and I had a dull time. But, if she came to live with me, here, how will she feel if she comes here and I go to see the chap I see - at 49 - and two personal tragedies behind me,I am entitled to live a life too. If you disagree, your prerogative.
My parents did not look after my children when they were young. I never asked and 500 miles was a bit far. They took the view that they had raised us to be independent and that we would not expect help from them. I never asked, but I have always taken my parents out and fetched, carried,done jobs they asked me to do.
I have asked my mother repeatedly to let me pay for help in for garden etc. She says no. She lives 90 mins away. I cannot pop down and back in an evening. I continue to fight a losing battle at her house, decorating, gardening etc while iIdon't get things done at mine. I see her more often than my brother who lives 5 miles away.
You refer to other cultures where it appears that the elderly are looked after. I would say to you that you do NOT know from experience that this is the case - you don't know whether they are just spiffed up for the occasion of you seeing them.
And so Dr Crippen - the question is - do you have elderly parents who live with you? I suspect not...
My name is Jennifer - I don't have a google account, I am def not anon
I would have thought that the main problem revealed [again] is the poor level of care in NHS hospitals, which is a scandal.
The writer of the article should not be condemned without knowing all the facts.
Dr C is right about 80% of the time [more than I am, for example!], but has an occasional tendency to meet dissent with ad hominem attacks. At heart he is an old-fashioned "Doctor knows best" type [the Dr appears..the waters part].
This strikes me as very much a short term concern. Your tens of thousands of Muslim NHS physicians will soon eliminate the problem.
I took care of my stepfather off and on in his own home (quite distant from my own) for many years until he finally had to enter a nursing home. When in pain -- most of the time -- he was emotionally abusive to me, and damaged me physically many times (though always accidentally) while I cared for him. He is twice my size, and I have medical issues myself that make me physically fragile. Taking him into the home my husband and I share simply could not work.
In-home care was impossible -- even the "best" caregivers were problematic and, in any case, my stepfather would not cooperate with them. Many of these problems must be laid at the feet of my stepfather himself, whose unwillingness to be responsible about his physical deterioration made his situation worse on a daily basis.
I have provided the best care I can for him, and still do, as I must to ensure that his care in the home is adequate. I visit him on a daily basis, and know more about his medical and emotional situation than anyone else who cares for him.
Fortunately, he has financial resources adequate to pay for his care. That is his money, and if every cent goes toward his care, that is just as it should be. He did provide responsibly for himself financially -- he was sensible, and yes, lucky.
Certainly, there are irresponsible "children" who take from parents and have no interest in sustaining family bonds once the opportunites to take are gone. But I am not sure exactly whose responsibility it is to care for indigent, alcoholic, demented, or abusive adults.
My stepfather was married to my mother for less than five years more than forty years ago -- the family was a mess before he came along, and the marriage was terrible. He never married again, and had no children of his own. I am the only "child" left standing, and I care for my stepfather because he needs the care. I am fortunate in that I have an understanding husband who agreed that it was more important that I meet my stepfather's needs than to continue to work as a professional.
My stepfather is a good man at heart; my husband and I are good people, too. It was a lucky fluke that his long-ago and disastrous marriage left my stepfather with a responsible stepdaughter. I cannot see that anyone outside the situation could have any possible legitimate reason to insist that it was somehow mandatory that I should be responsible for my stepfather's care. No one else has the right to make that call; I did not choose my stepfather anymore than I chose my parents.
We have been able to do what had to be done largely because the financial resources were there. Yes, every cent of Liz Penny's father's care should be paid by him -- there should never be a presumed right of inheritance if the parent needs the funds he or she has accumulated.
Should Liz Penny be caring for her father in her own home? Possibly, but there's really no way to tell. Certainly no adult "child" should be required to care for a self-destructive, physically abusive parent -- these are traits the parent should have addressed and resolved long before.
The bottom line is that family structure is fractured for nearly all people in my country (USA); people aren't always responsible with their finances; and caring for the feeble, the ill, the demented at home can be terribly difficult and fraught with land mines of all sorts.
Irresponsible parents; ill elders; and selfish, irresponsible adult "children" will always be with us. Forcing uncaring "children" to care for fragile people is a clear prescription for disaster. The solution may not be the NHS, but the problem will not go away. Neither Americans nor most Europeans are likely to adopt either the most or least desirable aspects of Asian culture any time soon.
I always found that it was the relatives who visited least who made the most complaints.
Out of interest, when relatives DO care, do you find that it is always women who end up doing the caring?
Indeed a very good reason not to bother with having kids, along with the horror stories about midwives' horse cures ;(
That said, in Pennys defense there are some good reasons for her actions too:
Most houses in the UK just about accommodate a one-kid family if you want to ensure that every person in your family has their own room.
And the extra work in the house often falls to the woman (let's not kid ourselves here, modern men hahaha) so she gets to not only look after her kids but also the parents -- potentially 4 people even.
Basically our culture is built on a pyramid scheme of nest-fleers that works whilst people die young enough to leave a semi-functional body, but when this is no longer the case since we now have the medicine to help people enjoy life longer.
A nuclear family simply does not have the resources that a traditional family has, and traditional families are bad news for women's right to self determination. Those much lauded 'asian familiy values' are often paid for by women getting married to their cousins and being kept at home to look after the family, in many traditional families, the young wives become virtual slaves of their MIL. Not really a good solution either!
In mathematics, there is a discipline that is called 'Operations Research' and the majority of it was invented in WW2 to ensure that the Brits had just-in-time supplies. If you use these methods to compute the generational change, you'll soon find that our current system only works if you have enough people die before they can draw their pension or use the NHS extensively, because all this is so expensive that no single person can finance it for themselves, unless they are very rich.
I visited my mother's hospital every day, the nursing home, almost every day. I complained (about the hospital mainly, though I also complained to the nursing home about certain things).
But there is a reason why people who visit nursing homes regularly are less likely to complain; they're less likely to have something to complain about, because it's known they'll be visiting. (Best is to vary visiting times.)
Cath it tends to be the woman -- except that male only children act as carers -- as a female non-only-child, I was certainly expected to be the carer. And I notice it's the woman who gets targeted in this post.
So, middle-class people should be forced to look after their ailing parents instead of skiing in Meribel, but not their healthy kids eh John? Or does that only apply to doctors?
I think you're the one that's dementing.
This is a complex scenario. Families are less close to each other than they were. As a GP the "something must be done" line is sometimes irritating, but often justified. Sometimes it's far from clear who needs to do what.
The dividing line between social care and medical care is blurred. The squabbles between the NHS and Social Work over who pays for what are bureaucratic, rather than getting on with putting the care in place. This is not the most "patient centred" game in the NHS.
Even with the best will in the world caring for ill, weak, frail, demented old people is a very hard job. Often in these scenarios "mother" is 90 and her "daughter" is 65 and just getting over her first hip replacement. The family are rarely fully fit or able to give up work to look after the frail elderly relative.
People feel great guilt about "putting the old one away in a home" Sometimes it's the only practical way of dealing with the problem.
Politically there's a lot of frail elderly people around and they are expensive to look after. It's not clear who's going to pay for the necessary care. The current mismash of trying to separate medical from social issues is a false distinction that will eventually fall under its own absurdity.
I'm not convinced that moving an elderly dementing woman to an unfamiliar home is the best thing for her. I think this family have handled things badly - they should have been requesting assessments from social work right at the start and perhaps a lot of the problems could have been avoided.
Elderly care is desperately underfunded, all the same.
Dr Crippen, I like your blog a lot and I am as angry as you about much of what goes on in the NHS but on this point I think you have been far too simplistic about a major social issue.
If I understand your general thrust correctly, what you are essentially saying is that people should pay for their own care in their old age rather than being a burden on the NHS.
From what you say, I conclude you would therefore expect wealthy middle class people to pay for care by selling their houses (or their 'scounging' relatives should do it for them). What if someone has no accumulated wealth - what do you propose then?
I guess you would NOT suggest that at this stage the NHS should step in? After all, a wealthy old person is just as much of a burden as an poor old person so the NHS should not help either of them.
Following your logic further anyone without money would be left to fend for themselves and anyone with money would be able to buy care. Does one get care because they have money and the other die in extreme neglect?
OK. I have been playing devils advocate so far. I do not think you really mean that old people who are poor should be left to die without help. You are far far too good and caring a doctor for that -that is obvious from your blog.
The problem is that your analysis is harsh on what you see as 'scrounging' well off middle class people? At what point should they be allowed to use the welfare state? They probably hardly ever used it while they were working unless they were temporarily unemployed - which is not likely to have happened often to many middle class people who are now in their 60s and 70s. They paid their taxes and NI and probably paid far more than a poorer old person but because they were prudent should they be made to pay for their care in old age when the poor are not?
Its not politically possible to force the middle class to pay for their old age care when others pay nothing without a serious revolt. We do need to find a fair way to care for elderly people in a way that does not burden the NHS but we cannot achieve that by penalising the prudent middle class. It is something we do desperatley need to address as a nation - we cannot just dismiss people who are in genuine need as scroungers - not even the wealthy.
I do not mean to be down on you Dr Crippen - you raised a very important issue here - do keep up the great work. It would be nice to see a reaction to the many comments here if and when you get time. I look forward to reading it.
This post disappoints me. It diminishes you.
"Families of Indian and Pakistani origin. I have never, in all the time I have been practising medicine, heard an Indian or Pakistani say “We cannot look after mother because we have jobs and families of our own” Somehow, they manage."
And that is one of the reasons why I love working in my area.
(Although I suspect that it is easier on them due to the larger family sizes)
Dude , thats the best article you have written in ages. Spot on
I suspected my mother in law's dementia nearly 20 years before she died. Nobody in the immediate family would believe me, least of all her husband. When his own health eventually deteriorated and she became totally incontinent he called on us to help, but was determined not to move. We were called out at all times of the day or night to help in situations we weren't really equipped to deal with.
It was the most awful time and not one I would wish on anyone. If you haven't lived through it, you have no real idea of what it can be like. Trying to get help was a nightmare, though the Alzheimer's Society was wonderful.
What on earth did people do with their elderly before there existed government programs to assume their care? Once they started to decline, were they left on a hillside in the cold somewhere? Maybe we could establish "safe-haven laws" for them too so you could drop dear old mum at a firehouse or in front of a hospital and know she would be looked after once you didn't want her anymore.
I think people are confusing criticism of "Liz Penny's" attitude of her situation with criticism of government systems to provide for elderly care.
It might be popularly agreed upon that the government should provide for healthcare, but it is not a black-and-white issue when it comes to healthcare of the elderly. Where do medical problems begin and end as it involves abilities to perform "activities of daily living?" If a demented elderly person cannot take care of themselves, do you treat the dementia and leave them to be in their homes (treating the medical problem) or do you move them to a home (whether yours or the government's) so they can be properly looked after? It is a hard place to draw lines and assign the burden of responsibility.
I think "Liz Pennny's" attitude of entitlement is, however worthy of criticism. She feels that the government is obliged to provide comprehensive, full-time, in-home care and entertainment to her demented mother whilst she complains about the burden of having to organize it over the phone and share the cost with her sister. She does not want the government to assist her, she wants to turn over the cost, blame, and responsibility.
Of course we can't know all the specifics of her situation, but would you be so quick to defend her attitude if you knew she were heir to an oil fortune? I think not.
well played Dr C....your article highlights a fundamental problem in British society with regards to their attitudes towards the elderly and their care. I completely agree with what you have said, and it is the "morals" which need to be addressed rather than the state of the NHS. Well done for exposing this for British people to read.
xJ
anonymous 8.58 and people who agree with you, I think you read a different article from the one I read. Many hospitals *do* treat older people phenomenally badly. Good private nursing homes *are* very expensive and will soon eat up capital. It *is* sometimes difficult to get accurate information from social workers and others about basic welfare entitlements and other rights. It *is* pretty difficult to take care of a really ill or frail or demented parent while having any form of decent life (I've done it). And that's what the writer was saying. (She didn't say many people haven't the space to house their parents and can't afford to buy somewhere larger, but it's true.)
As for the moral side of it i.e. your belief we should sacrifice everything to care for our parents however old and ill we are ourselves, whatever other commitments we have and cannot afford to give up (because we can't afford to live on Carers' Allowance), without, of course, harming anyone else in the process... do you know how Asian families managed it, historically? They sequestered the youngest daughter-in-law and made her life hell on earth, is how. That's moral?
What's immoral is the behaviour of many hospital staff and many nursing homes.
(I do think the writer should have sold her mother's house and then spent the money on a good nursing home. But otherwise, you are condemning her without adequate knowledge.)
ive put a bit more thought into this and i think it exposes more than anything a profound lack of understanding about the modern working world out in commercial/industrial world
docs clearly view the world of work through their own rather limited psuedo nationalised cosy cushy public sector specs, as i am tired of hearing how easy it is to take time off to make a doctors appointment (often it isnt) this is just another symtom of the same thing
this is really why the nhs is never going to be a success in the eyes of the patients, cos in the absense of the patients being able to force change with their buying decisions they rely on the professionals understanding the world they operate in
the average dr has about as much clue about the average high pressure commercial job as i have about brain surgery
no one
What did people do with their elderly parents before Govt assistance? Well, Charlotte, there weren't nearly as many really elderly people way back then, because you were lucky to live to collect your pension for more than 5 yrs.
It is now a huge, and hugely expensive problem for society, and is not one that will be solved by certain people getting up on their high moral horse and sneering at mere mortals.
Speaking as an adult child who is currently spending down her mother's savings at a rate of £600 a week for nursing care , I am, surprisingly, on Dr C's side on this. My mother was a cautious woman who saved money for a "rainy day". It is now pouring, but I am pleased that her savings have given her more options. Do I wish she weren't suffering through the hell of dementia? You bet I do, but not because her savings are being spent.
other random issues
i) plenty of "prudent" working class folk end up with a few quid in the bank at the end of their life, why should they be forced to hand it over for their care when their neighbours who spent their equivalent money on beer and trips to spain get the same services for free?
ii) its free in scotland for pretty much the same taxes how comes the state claws back money from old folk in england? (because we dont have adequate english representation?)
iii) we need a mobile/flexible/hard working/long hours at times etc work force to compete in the world, we do not need a workforce obliged to stay within ten miles of their parents, we need the mobile etc workforce cos it earns the UK more money overall, and in the grand scheme of things that should be covering old age care
If those with money fund their own care, and those without get it free, folk do exactly what my mother has chosen to do. She's spent just about all the cash she had during her early retirement while she was fit and well enough to enjoy it. People respond rationally to means testing... Safety nets that are only there for the poorest have a habit of making themselves a bigger customer base.
Not what I'd do, but I can see why it happens.
from "up on my high horse"....
Believe me, I see what the elderly crisis is. I see the pain of families who deal with it and it's a terrible situation. My family are just beginning to struggle with this exact problem with a dementing grandfather. Our current level of medical knowledge has the capacity to keep people alive from heart attacks, strokes, cancer to die from another cause (dementia etc). Am I saying that we shouldn't provide healthcare to people so they don't burden the system later? Absolutely not, it's a good thing to keep people alive. But the system needs an overhaul and the doctors are NOT to blame.
Just because your taxes pay for a service does not mean that it must be available to you at any moment for any reason. You cannot post a letter at any hour of the day or night, you can't expect the bus to stop in front of your door the moment you decide to leave for work, but you expect a doctor to pay you a home visit at your beck and call, and you expect that the government will pay your expenses in all things healthcare related. We agree that everyone, regardless of class or ability to pay, deserves the finest available care. The problem is, someone has to pay for it. Doctors cannot be available at every moment for free. Would you ever do your job, be willing to be called in at 3am on Christmas and possibly not get paid for it? People argue that doctors are too rich. Of course some doctors may be very well off, but that's not universally the case. I once worked for a doctor and during an encounter with a patient, she complained to me that she couldn't have her exam scheduled for a Tuesday. "The doctor doesn't see patients Tuesdays," I replied. She made a nasty snide comment to me about that being his golf day. It wasn't... it's his day to see patients in hospital.
My point is, either the attitude of the public or the system must be changed. With aging populations, in something like 20 years, the burden of Alzheimer's alone could account for most of government healthcare spending. You can't afford to take care of your demented parent (which is truly a burden -- absolutely no sarcasm) but unfortunately neither can the government.
It's becoming a terrible, tragic problem with no solution in sight.
I'm sorry, but this post missed the mark entirely. Liz Penny's parents chose to conceive and raise her, but she did not choose to be born.
Your comments that Liz should sell up her folks' house and move them in were blinkered. Some of us, middle class though we are, live in urban flats where 'building an extension' is a laughable suggestion. Your comments also make no allowance that Liz's circumstances may not be amenable to 'cutting her working hours'- perhaps she's a single parent, or to the modern, economically and socially-mobile pattern of moving away from the childhood locale. My parents are thankfully still in good health, but nevertheless this diatribe was personally offensive to many struggling with aging parents.
Apologies Dr. C, for clogging your comment board with my rant. On re-reading the post, I realize I have contributed nothing further to the much more well written thoughts you presented.
re "It's becoming a terrible, tragic problem with no solution in sight. " the solution im afraid is to let people keep their own money, allow families to have tax efficient trusts funds which self insure the family
you can be sure the negotiation between docs and patients would go a lot smoother if the patient could offer to up the payment for slightly more inconvinient hour of appointment or whatever
the real problem is thinking that some stupid bunch of crap managers are better at the appropriate compromises than the customers and medical providers would be on their own
and yes the state does need to provide an insurance company of last resort, which you should be allowed to top up if you wish, this does not mean the state needs to own or operate any of the providers of care
why should i work? my lifestyle isnt that different to how i would live if i was on state incapacity benefit? i work cos i care about society in a strange sort of way
my own solution for my parents will probably be to move them north across the scottish border, its a mad world
"Why did you not give mum and dad a home, Liz? Bit inconvenient?.....It would have interfered with your social life, and your skiing holiday"
*******
Even assuming your comments are correct, John, you're being hypocritical: It's not on to try to arrange alternative care for parents who are incapable of looking after themselves but it's perfectly ok for two doctors to leave three children under 5 without a supervising adult night after night, so that the fact they had children to care for didn't interfere with their social life and holiday.
There's a double-standard if ever I saw one!
When you eventually climb down from the ivory tower, look around. You'll be surprised to find that most people don't have the option of working a four-day week. Many of us can't afford to work part-time because we're struggling to pay the mortgage and the taxes, let alone put food on the table. You pontificate and lecture on subjects of which you know nothing.
It's very rarely that you make me angry, John, but this time you have done.
My father died in 1987, my daughter was eleven and had just started at secondary school. I had not worked since she was born, but had a job to go to. We had shared a house, split into two flats with my parents for some years as a hedge against the day when one of my parents (I'm an only child) needed some sort of care.
He was 76 and hadn't been 'ill', but was becoming forgetful.
I had to forego my job, and the much needed salary, until my mother came to terms with things.
Well, she never did. she refused to stay alone in the house 'If you leave me alone I will die of fear' I have never been able to bear the thought of somebody being frightened if I could do something to prevent it, so somebody stayed in with her at all times for 11 1/2 years, until she died.
During that time, my husband and I went out alone together, perhaps a dozen times, always to parties thrown by his clients. He went to countless others alone. We had no holidays, we couldn't afford it, and frankly, we didn't want to go with my mother, and our family outings could be counted on our fingers.
When I complained, my mother would always say that we'd have plenty of time do things when she was dead.
In the end we had six weeks. My Mother died at the end of November 1998, and my husband in January 1999. Neither of them had appeared to be 'ill'.
My mother took the last eleven years of my husband's life, and almost nine years later, I still resent it.
How much worse it would have been had my mother suffered from anything more than what I now recognise as extreme selfishness, I dread to think.
This woman still loves her mother. I no longer know if I did. I had been fond of my mother for most of my life, had got on well with her, and enjoyed her company, but that's a lost memory now.
I don't know who should look after people when they become demented, we've lost the plot somewhere along the line. Perhaps we need some sort of compulsory insurance.
Katy has to do a lot for me while I await my hospital treatment, but I don't need anybody to hold my hand, and I'm currently considerably less able to care for myself than my mother was at 25 years older. If my situation can't be improved, I will find somewhere to go to be looked after as I will not condemn Katy to my life. She's entitled to hers.
This woman and her sister are doing the best that they can. They and their families are entitled to lives too.
It is the curse of the middle classes. Too much money for government assistance, and not enough to actually pay for everything. Certainly not on one income.
I am astonished that a man who has so much compassion for the McCanns, has so little for them.
"ii) its free in scotland for pretty much the same taxes how comes the state claws back money from old folk in england? (because we dont have adequate english representation?)"
Free personal and nursing care is crippling Scottish social work departments. I know - I work in one. The Scottish Parliament is not adequately funding free personal and nursing care so local authorities are having to make up the shortfall which is taking money away from other services.
The people who benefit from free personal and nursing care are not poor people who didn't pay under means testing anyway - the people who benefit are the well-off who could afford to pay. People who for years paid for their own care from expensive posh care agencies are now demanding that social work pay for their care. That's their right under the legislation, but is it the best use of public funds?
And the Scottish Executive couldn't even make its mind up about what's a personal care task and what's a domestic task. Every local authority used its common sense and classified meal preparation as a domestic task - because it is - and now the Exec has decided meal preparation is a personal care task and we're having to refund everyone we charged for it. It's costing my local authority £2 million this year to refund meal prep.
Everybody I know in social work across Scotland is in complete agreement that free personal care was the biggest waste of money they could have come up with. Universal free prescriptions and free school meals would have been a much better use of the money.
Dr C, you repeatedly ask why asian families look after their elderly relatives and non-asian families do not.
Simple:
Asians are more likely to live in multi-family, multi-generational households. A colleague of mine, a sucessful asian career woman, a successful unmarried asian career woman, lives part of the time with her parents and part of the time with her brother, sister-in-law and neice.
She used to be the dependent daughter, but almost imperceptibly, her parents are becoming dependent on her.
There is a new market in Birmingham and other cities with large asian communities for large multi-bedroom houses specifically for large multi-family households.
If the burden is spread thin, it is light.
Do you and Mrs C still live with your parents or hers?
Aphra.
Totally agree with the above and I am surprised at your lack of compassion for this family. My mother was in a nursing home for three years and I wouldn't wish it on anyone, and this was one of the better ones and we visited regularly. I have made a living will that I have no wish to live if I develop dementia. I have already decided to commit suicide in the first lucid moment. I know my mum used to get them and that is all I need. My family are well aware of my wishes and I have no wish for the home my late husband and I worked so hard for, he didn't even live to retire, go to this or any other wretched government to pay for me to go somewhere to wait to die. Nor do I wish my son to sacrifice his life to care for me if I can no longer look after myself. As far as I am concerned when your personality has gone that is it. Having no knowledge of their circumstances I feel you had no right to condemn them. Re the McCanns, they must be going through a nightmare but it has to be said their actions were stupid, not the risk of abduction, which would never have crossed anyone's mind, but the children were far too young to be left alone, one could have got sick, had a nightmare, even just woke up looking for mummy. I just can't understand them at all, that said, it looks like they will be paying for the rest of their lives so any criticism is natuarally muted.
My parents are getting on in years. They own their own house, which is a nice one, bought in the days when you didn't have to be wealthy to have a nice house. They inherited some money as well.
They would like to leave me something when the time comes. I sold off my small house for next to nothing in a property crash a few years ago when ill, and will probably never own my own house again. There is a serious chance I will never work again to earn a decent pension.
But I'm not counting on an inheritance to put that right. Our generations are different. I tell my parents not to worry about spending their money and to granny-mortgage the house when they need the money.
When they die, if they've used up all their capital I shall be disappointed but not resentful.
And in the meantime, I do what I can to help with the things they can't do.
Methinks you've struck a chord on my guilt trip. Even when we lived in the UK we were 4 hours drive from either set of aged P's, too far to be of any practical use. Now abroad for work. My Mum has hypertropic cardiomyopathy and is finding life tough. I have young children to take care of so am thankful that when the proverbial hits the fan, Mum's youngest sister is willing to fulfil the role that I should be.
In the 'good old days' people died soon after retirement and still lived in the same area as their families, reality now is that alternatives have to be found, both for childcare, which used to be down to Gran for working women, AND care of the elderly.
j
I have always viewed you as an empathic doctor. But you have hit a nerve and I don’t think you understand.
• No matter how close the family, they don’t see it. We knew about my mother’s deteriorating memory but thought father was coping, albeit with regular contact and support from family.
• I think there is also a problem in that family are too close. We can interpret their needs, and solve their little problems. People see what they expect to see and excuse aberrations as minor glitches.
• And let’s not forget, a classic dementia patient lacks insight and is in denial
• The crisis came only a year ago but the psychiatrist today described my dad as “severe dementia”
• When the crisis came, I was there.. However, advice as to needs and possible funding options was nonexistent. I pity the less educated and the less assertive
• The psychiatrist advised us that we should look into residential care. However, I thought (obviously also in denial) care at home would work. They were in familiar surroundings, surrounded by family and friends.
• But it didn’t. Their house was badly located and the sudden ban on driving made them feel isolated despite the support. I will spare you the detail of all that went wrong but the professionals were right. They needed 24 hr care.
• I looked into alternatives and realised they would not have settled chez moi. They would have continued, packing bags, trying to get taxis to “get home” at odd hours of the night, getting picked up by neighbours when they got lost.
• My Edwardian house was unsuitable. Here it all fell apart. We live in a small town. Suitable properties with granny flats do not become available at the drop of a hat. Another crisis and the psychiatrist was threatening to put mum into the local psych hospital. He had already told me that was the last thing we wanted. And so I managed to get a double room in a local care home.
• Have I made the right decision? I don’t know and never will. I see them every day.
• I do know that you have never experienced this. Unfortunately, families these days do not live in such close proximity as our Asian communities, or indeed, our forbearers So there is a lot more to consider, and more problems to overcome as far as our oldies are concerned.
• I also know that your blog is totally unhelpful to anyone living through the hell that is dementia. Tell folks what to look out for, when and how to ask for help, how to convince the GP to be proactive and to breach patient confidentiality.
• This, believe it or not, is edited. It is very difficult to describe the dementia experience in a few words. If you would like to hear my story please email me.
I cared for my Dad in his terminal illness, lung cancer. He had left Mum because she rejected him cruelly (you haven't got cancer, you're just a lazy arsehole, etc etc etc). I would have crawled over broken glass if I could have spared him one hour of the pain he suffered. I managed to combine this with a demanding full-time job, because work were understanding and we had help from the GPs, district nurse, and - sorry - one of those reviled creatures, a Macmillan nurse. I sat beside him as he drew his last breath. He left precisely one thousand pounds - and I was glad. He had spent his retirement cycling in Spain, soaking up the language and culture and finally having the mind-life that was denied him earlier because of the dire poverty of my grandparents, and the need to work to put bread on the table for his family. While he lived with me he wanted to give me his pension but I refused it. I didn't need it, and I loved him dearly.
He asked me to "give an eye to Mum" after he died. So I did. She had abused me physically and emotionally all my life, but I still visited her, got her shopping, toted her around in the car on outings etc etc. Nothing I did was good enough and her favourite description of me was "you IDIOT". Having her to live with me when she started to dement was out of the question. She would have destroyed me utterly. In any case, I became acutely ill and landed on the nut-wing, where my wonderful shrink FAILED to diagnose me and FAILED to treat me for what I now know was a bipolar mixed episode. The start of four years of utter hell.
Meanwhile my brother got her into a good care home, paid for by the proceeds of her house sale. We both accepted that this was the way things were and didn't raise Cain about it. My brother got her an MRI scan by doing that, however which revealed she had multi-infarct dementia, not Altzheimer's. The outcome was no different. Once I was in remission and picking up the threads again, I started to visit her. She was my mother. When I got the correct diagnosis I began to put two and two together about Mum. I am pretty sure she had bipolar as well, undiagnosed and untreated. In any case, there were no effective treatments before lithium, which came on stream in the late Sixties. Too late for her even if she had accepted the diagnosis. I then felt profound pity for her.
Last year she had a further series of infarcts and spent nine weeks on an acute stroke ward, where she was given excellent care. I thought she would die quickly so visited twice a day for several weeks. No compassionate leave from my new department, a hell-hole I'd landed in after I lost my career because of misdiagnosed bipolar. There was not a shitty sheet or congealed meal in sight on that ward. Then she went to a deluxe nursing home. She got full funding because she was ILL, not just OLD. I feel this was only right and proper because if she'd been in her fifties and not eighties, she would have got this care as a matter of course.
She died last month. The last thing I did for her was to get the priest to say absolution - something that I knew would mean a lot to her and perhaps enable her to let go and die. I knew she was afraid of dying and going to hell - she told me that years ago.
She wasn't a good Mum and was very difficult to love, because she was so cruel. But I did my best for her always. She's left a small legacy to my brother and me but if all her money had gone on her care, I wouldn't have complained. You will have gathered that there wasn't much money anyway. Mum and Dad were working-class people who grafted like hell to give their kids a better start in life.
I have little patience with "Penny's" sense of entitlement but can understand that there may have been good reasons why she couldn't have her folks to live with her.
Now that Mum's dead all the bitterness I felt towards her has gone. Just the pity's left; she was so unhappy and most of that was not of her own making.
You know, we have the same thing here in the States -- there are even lawyers who will set up an elderly person's finances so that Medicare, and not the elderly person, will pay for long-term nursing home home care. Having seen a few of the Medicare-funded nursing homes, I am appalled that anyone would want their parent in one rather than in a private nursing home, or at home with a care-giver. It seems that preserving a person's estate for their heirs has become the main objective.
I recently heard about a program (I think it is Atlanta, although I may be wrong) which takes people out of nursing homes and puts them in their own flats with a visiting care-giver. The patients are happier, healthier, and the program saves the state thousands of dollars a year.
Marian
i think the phrase in UK is "spot on". Most people would rather complain about why something isn't perfect than fixing the problem themselves, even with their own family. I have seen this dozens of times. "Something has to be done about this doctor!". "I agree crazy family member, why don't you take your parent home, call around and find someone to look after them when you are at work, and bring them to clinic once a month?".
What they want someone else to do is to pick a Nursing home so they can complain about it (and over here, sue the Nursing home that has looked after their loved one for years).
It is my humble experience that most people have no concept of responsibility and self-reliance and there is the occasional person who is psychopathic enough to publish an article displaying those features in the guise of criticism.
b
In some traditional Eskimo societies the elderly would 'take a walk in the snow' when they realized they were a burden on the tribe. But today the State rules all. I predict that dealing with the elderly by the use of 'involuntary euthanasia', (as now pioneered in the Netherlands), will become the common practice in all of the EU.
Checked back, read the article and am still mad at Dr. C who has been ucharacteristically quiet.
WHat a fucking stupid thing to say about Eskimos. Maybe we should throw everyone out that it costs too much to care for. And do you have references for your incredible stupidness anonymous a 3:59? People also used to throw virgins into volcanos to appease the gods. Shall we do that too? Or only the disabled ones, you dumbass?
BTW John, my friends dad is a former doctor- which means he has a snowballs chance in hell of getting treatment for his problems, because when he is lucid and not wanting to slap her he is most charming and knows doc speak and how to play things.
AND--- if you wan us all to do the Indian thing and do right by our parents, maybe we ought to go and get one of the daughter in laws in the family to do her familial duty nad slave. True story, lovely woman, but her life consists of doing everyone elses bidding and that is her lot. Maybe you ought to do some research, or know personally of what you speak. It sucks for at least one woman in each of those families.
There are bunches of us kids, and we are responsible for two siblings, 3 parents another sibling and then our inlaws when my parents get on in years. I have no idea what to do, but I think it will still not be enough.
I am so pissed that you cannot see that these people did the right thing and still got screwed. Take out layers of bureaucracy, and maybe care would be available. Denial of care is HUGE business, because it is cheaper (they think) in the short term.
How about my relative that died this year who was taken care of by family until they could not lift the person upstairs to bathe anynmore. Maybe as a doc seeing your dad's penis is not such a big deal, but to an ordinary daughter, it is not "a good thing" to use Martha Speak.
Still mad John.
And the stupid anonymous deserves a virtual smack upside the head.
http://news.bbc.co.uk/1/hi/health/6266124.stm
I think this was always going to be an emotive can of worms, however Dr C adressed it, however I think the inital article was harsh.
I can't help thinking that reactions to Liz Penny's article are glaringly different depending where you're reading it from. As someone who watched their beloved Grandmother deteriorate after a series of TIA's, I can't help seeing her as distressed and desparately trying to get support - maybe I'm naiive in that thinking, but I remember how helpless my family and I felt after my Grandma's demise.
In my brief stint nursing, I worked on a Stroke Rehab ward, and we did get a couple of dementia patients in. People with dementia are bloody hard work - add to that the emotional distress of being their loved one and having to watch that happen, and you have a pretty tragic situation. Add to that the logistical and social stuff that many people have highlighted here, and IMO it's could be a disaster waiting to happen.
I don't know what the solution is, but it's clear that people with dementing loved ones need a hell of a lot more support.
I do agree that if you have substantial savings you should be prepared to use them to pay for care in your old age, after all someone has to but there are aspects of your article I disagree with.
We didn't take my grandmother into our house when my grandad died and she became demented and we didn't for a very good reason - she didn't want to live with us. She wanted to stay in the home she had shared with my grandfather for 50 years and where she felt safe, secure and in control. She knew her mind was going but she felt more secure in her own home rahter than a strange house and who are we to say she had to leave? So my mum and my aunt went over every day (a 60 mile round trip), my aunt during theday and my mum after work. After 2 years she eventually had to go into a home. Does this make us bad people, awful family? No, I don't believe it does, we weren't qualified to look after the massive melanoma on her leg, we aren't legally allowed to administer Oromorph, we all work and can't be around at all times to check she's ok and adminster pain relief when needed.
Looking after a person with severe dementia is a full time job and it's a skilled job. Now most have to work to keep their house and pay their bills so staying home to care for an elderly relative is not always an option. Sure, some people could but choose not to but the majority just cannot do it and you shoouldn't be judging them as heartless bastards for acknowledging this fact and finding the best alternative that they can. The reason that Pakistani elders don't get put into homes so often is that there is usually a woman at home to do the caring. This is not the case in the middle class white community.
Well Dr C - you do like to stir things up don't you. I've seen my mother through dementia (and paid for the brain scan that the NHS wouldn't fund - obviously social care there). I'm now starting on care for my father as we tread the same path.
Just one question - you and Mrs Dr C are obviously very well organised. So in your discussions, have you decided which one of you is giving up work to start the bottom wiping routines that you thought you had finished with when you had raised your brood. That's how other cultures cope.
Not rising to your bait
Dr Crippen - a curious item, designed to induce a bit more guilt in granny dumpers perhaps ?
But what are so you angry about - the squalid insitutionalised deaths of inreasing numbers of demented elderly ?
You're the one who wants to keep everybody alive for as long as possible irrespective of how psychologically or financially damaging it may prove either to the individual, or their family.
Why should those with terminal disease or advanced dementia be forced to eek out a few more desperate weeks or months because of maleable medical ethics ?
You may not like it but there will be more than a million demented patients in the UK fairly soon, while by your own admission the NHS is going down like the titanic - perhaps this why the road to BUPA has proved so irresistable to middle class punters such as you good self.
More and more I find myself agreeing with John Grays axiom...... 'what distinguishes humans from other animals is their ability to cling abjectly to life'.
Of course I accept that some commenters share your 'life at any cost' philosophy but please remember there are many here, including yours truly, who do not.
Thanks John - you have sparked a good deal of interesting discussion.
I think that some of the problem comes about because paid work has come to be regarded as much more important in our society. A couple of generations ago most married women did not work (might this still be the case in many Asian families?) so there was (unpaid female) labour available for caring for the old.
It is not just the old who suffer from this change. We are now demanding that state schools stay open until 6 pm so that both parents can work a full day, and demanding that the government give us vouchers and tax-breaks to fund child care.
I think the problem has come about because women have (quite justifiably) demanded a career but it is still not not socially acceptable for men to give up theirs in return.
I do not buy the explanation that higher house prices mean that a family now needs two incomes. By any objective measure we are wealthier than ever before (house prices can only rise as high as people can afford). My parents brought me up on one income and we mananged with a small house, no car, a B+W telly and my first trip abroad when I was 16.
You've completely missed the point on this one doc.
I don't want my kids to work their whole life, bring up their children and then spend years looking after me. All I will want them to do is check in from time to time and make sure I'm okay. But full-time care ? No thanks...
thank you, anonymous poster of the BBC link. John, I kept trying to get a hospital doctor to assess my mother for possible dementia. No chance. The nursing staff who supposedly saw her daily hadn't noticed anything... even after I managed to get them to come and see her when she was amazingly confused (they were shocked and a bit scared) nothing was done. I read that 30/40 per cent of dementia cases are never diagnosed. But you *know* Liz Penny should have spotted it if she'd visited often?
Goodness I am angry.
I would point out to you the high percentage of carers who are on medication for clinical depression, the way that having an incontinent, shouting, incoherent pensioner lurching round the house destroying things can wreck the life of the children who may live in the house. But you should know about that already if you do your job properly. How can you criticise that woman for not knowing that her father was an alcoholic? You know that people with substance abuse become adept at hiding their problems. And you know that many alcoholics and drug addicts who are neither old nor senile reach a stage where they are unable to look after themselves properly. Perhaps you think that their families should also give up their jobs to take care of them?
My grandmother is now in a home. She was senile, and was so spectacularly anally incontinent that my grandfather and her sixteen year old grandson did not know what to do. Which of them, out of her sixteen year grandson and eighty-six-year-old grandfather, do you think should have rolled up their sleeves and got on with it? But then these burdens of care fall overwhelmingly on women. It is women who get stuck wiping bottoms, clearing up sick, dabbing drool and after a hundred years of liberation you clearly think that's all they're good for.
What a nasty, callous, judgmental article that was. Physically caring for my mother, a sprightly, cheerful, highly intellectual woman who is great company, is still very difficult for me to do combined with my job and having a social life. I'm not married, I have no children or siblings, I do this on my own. If she were senile and incontinent I would not be able to cope and I would put her into a home. And I would do my utmost to seek state funding for it, too. Because as long as the Welfare State is there and I pay my taxes, I am entitled to. I do not like the way the Welfare State has turned out but that's how things are and I can't help it if it can't keep its promises.
And I would dearly love to know, like one of the previous commenters, which out of you and Mrs Crippen will be giving up your job to wipe your parents' arses when they can't cope anymore. I'm willing to bet that it will be either neither of you or Mrs Crippen, despite that high-flying job of hers that you like to throw into your posts every now and again. Put your money where your mouth is.
I doubt I would be quite as annoyed about this if your complaint was with the Welfare State. If all you were saying was "I don't think that the State should pay for this sort of care", that's fine, although the State does currently hold itself out as being able to do that - hence my point above about it not keeping its promises, which is why it needs to be reformed. But that's not your real point, is it? What I get out of your post is that you think that people are morally obliged to give up their jobs to care for their elderly relatives long after their elderly relatives have stopped having any real idea of who the people who care for them are. The point you make at the end of your post, about the fact that you rarely see Asian relatives in homes, may well be right. But if you look more closely, there will be at least one person (and it will be a woman) in those households who does not work and spends her entire life looking after everyone else. I don't know if you have it in your head that everyone in those families is mucking in to help - but if you do I think that is wrong. And these are burdens that fall upon women, overwhelmingly, not men.
I have already had to change my job once because it wasn't possible to do the job I had before and care properly for my mother. I'm 31. I do think that I am entitled to have a life and a job and a family of my own. I'm sorry if that strikes you as selfish.
Hear hear, Katy.
My mother was disabled from when I was a child - not drastically, she wasn't bed-bound or on oxygen or anything, but she was in a lot of pain and regularly had "bad patches" where there were a lot of everyday things that she couldn't do (including the famous Cup Of Tea OT test). Her conditions deteriorated as we got older.
She was adamant that my sibling and I were never going to do care duties under any circumstances. She could just about reconcile herself to us making our own packed lunches or getting the kettle on, but trying to do a household task she regarded as "hers" or, heaven forbid, trying to physically help her, resulted in yelling and arguments fuelled as much by the affront to her dignity as the pain she was in. She would sooner things weren't done, than that her children had to do them for her.
When old age gets the better of her, I will be there with an open offer of help, just as I was as a child and just as I am now. However, I know - from experience - that attempts by me or my sibling to physically take over her care is simply going to upset her every time she is at herself.
I know she is not the only person who would feel like this about having their own child feeding them or helping them with the toilet.
Would you have us overrule our parents and create conflict several times a day, every day, for years, in the interest of saving the state some money that we paid in in the first place?
I think you make some good points here - but, yes, I think you are being too harsh on Liz.
Alcoholics are notorious for hiding their affliction. I think it's entirely possible that Liz could indeed have visited frequently and regularly and lavished loving care on her parents and yet missed her father's drinking problem.
Dementia is notorious for getting worse at times of stress or sudden change. Again, I think it entirely possible that, while Liz's mother was in her own environment, her problems were mild and could be concealed from even the most loving, caring, frequently-visiting of daughters; and that the deterioration only happened under the double shock of losing her husband and moving into a completely different environment. I would certainly not judge Liz's love for her parents, her care for them, or her involvement with them by the fact that she didn't pick these problems up earlier.
As for the first time her mother went back home, for all we know she might have wanted this passionately and Liz might simply have been going along with her wishes.
I do agree that, when it came to the point of considering nursing home care or care in Liz's mother's own home, Liz should have at least considered taking her mother into her home as a third choice, and that it's suspicious that she apparently didn't. But would I condemn her for not *making* that choice? No. I haven't had to deal with the heartbreak and difficulty of having to give full-time care to an increasingly deteriorating loved one. I suspect it's a whole order of magnitude more difficult than having to bring up a developing child. Since I don't know what it's like, I won't judge. I'm guessing you don't know what it's like either. Yes, it's easy to condemn other people for not doing what you're not prepared to do yourself; but it's also easy to condemn other people for not doing what you've never even been *faced with* yourself.
And, as other people have pointed out, the reason other cultures seem to make it work is partly because there are generally more people around to spread the load due to large and extended families, but also largely due to these being cultures in which it really isn't seen as a problem for a woman to have to give up any kind of life or career of her own to take on the burden full-time.
If my mother became so ill as to not be able to live on her own, I would like to say she could come and live with me and my husband.
However, apart from the fact that she doesn't like where we live, neither of us would be able to give up work, or even reduce our hours to care for her.
Without the full amount of both of our (full time) wages, we would not be able to pay our bills or our mortgage. We don't have children, don't go on holiday, we grow a lot of our own food; but we're still only just affording to live in our house (in the country, up north).
I often joke with my mum about her coming to live with us "as long as she does her share of the housework" but it does worry me that one day I'll be in a situation where we have to either a)move house - which is expensive enough as it is, or b) pay to get mum care somewhere - with no money for this, e.g. inheritance
Actually, Dr C, you have been very selective in what you chose to include in your post from that article. You didn't, for example, mention this bit:
"We moved Mum in with me, 15 miles from her own home in the opposite direction from the hospital, while we all got over the shock. Another was to follow. Her forgetfulness was dementia. She asked the same question six times in 30 minutes. I had to label my kitchen cupboards and write out for her every night where she was and what was happening the next day."
"My sister Pam and I juggled our jobs with caring for Mum and visiting Dad, a two-hour round trip."
"We put our own lives and families on hold and irritated our work colleagues with the long list of phone calls we had to make day in, day out. It was relentless, depressing and utterly exhausting – and that was with two of us to share the load."
"I grabbed the chance of a week’s holiday." (Oh dear. Do you think it might have been a ski-ing holiday? Shame on her, eh?)
"We went back to the internet and found another agency to supply live-in carers"
State funded, do you think, Dr C?
"and I felt confident enough to skip some weeknight visits, although I still phoned her every day."
It almost sounds as if she might have been visiting her mother virtually every day!
"So we took Mum home. We bullied, cajoled and pleaded with assorted authorities to provide a hospital bed, a hoist, a pressure mattress, incontinence supplies, the food bags, visits from district nurses. My sister and I and her carers were taught how to administer her food, water and medicines via an electric pump and the stomach tube. She had a catheter but pulled it out twice, so now it stays out. I have acquired other skills too nauseating to describe."
Shame on you for painting this woman as some sort of decadent middle-class sybarite.
Oh - and you didn't mention this bit when you criticised them for not selling their parents' house to pay for nursing care, either:
"If we moved her into a nursing home, social services would then require us to sell the house after 12 weeks to pay for her care; as the house is jointly owned, Dad, too, would then be deemed to be self-funding again. At a combined rate of up to £1,800 a week for their nursing home fees, the money would soon be gone."
Your assumption that because Liz Penny is middle class she can afford the extra £130 a week is astonishing. Do you really think that everyone who speaks nicely and went to university is rolling in it? Don't you know better than that? I'm afraid you are seriously out of touch with how most people live if you really think that £130 a week isn't a lot of money. You know what I do for a living and I wouldn't be able to afford anything like that sort of extra cash.
Nowhere in the article is there any hint that Liz and sister considered moving their parents in with them, and caring for them, with help, in the family environment.
Why not?
With all due respect, John, why the fuck should they? Do you think that a senile woman and a drunk are not going to be distressing housemates for Liz Penny's children, for example?
Or, perhaps you would like to attack the state for extorting money and then refusing to fulfill its side of the social welfare bargain (I can't say contract because, you see, there isn't one. Otherwise, we taxpayers could sue)?
Have you told your children that you fully expect them to dedicate a large portion of their lives to caring for you when you are old and senile? That you expect them to bring you to live with them, no matter how busy their lives or how incapable you become?
I am slightly disturbed at the class warrior style contempt for the "evil middle classes" that you display here.
DK
£130 a week isn't too bad considering the benefits that her mother could get.
Those of us below state pension age have to contribute a fair amount. I believe that SS only have to leave you with the basic rate of IS + 25%, so that is what a lot of them do.
As a student I was contributing £39.12/week towards my own care (the DWP insist that one takes out the whole student loan, and then take it off one's Income Support).
That said, if my mother needed care/support, I would want to get her into a better home. I spent 4 years living in a nursing home with dementia patients wondering into my room at night (and falling on the floor) - there are some places that I wouldn't want anyone I knew to live.
"I have acquired other skills too nauseating to describe."
Interesting comment. Nobody can insulate you against life's slow decay. Face facts.
Yes, the burden endured by home carers is simply horrendous. I frequently see tiny, fragile women struggling to care for their much larger dementing husbands. There is often a kind of unintentional violence that is deeply distressing.
But I've also seen plenty of lonely deaths on elderly care wards - and what I can only describe as wilful neglect by relatives. Dr Crippen may have been too harsh - but there's plenty out there to warrant his anger.
Of course I accept that some commenters share your 'life at any cost' philosophy but please remember there are many here, including yours truly, who do not.
###############
Okay- the mean and nasty stuff I want to say about a NURSE who wishes patients dead is slightly tempered by knowing that ICU nurses in my own life are stressed sometimes by patients who are truly failing that get an overabundance of help. I want to assume that that is what youu meant A and E nurse- cause if it isn't and you are like Anonymous 3:?? up more----then you ought not be a nurse.
Life at any cost? What does that mean? Does it mean we should not fight for preemies...or should we kill the disabled at birth- all of them or just the severe ones? Or is it kinder to leave the suicidal dudes alone? Maybe the alcoholics that come in with gangrene and are starving should just be left to nature. Maybe that wonder drug called an antibiotic ought not to be used when anyone over 65 has a chest infection. Maybe only the cute kids with CP should live. All Down's Syndrome and Spina Bifida ought to be tested for and terminated. How old should we allowed to live for? Should there be a cost / usefulness ratio to determine who ought to receive care? See how loaded and ridiculous things get when one makes an inflammatory remark that could make them look like they are in the wrong profession?
Apparently Nature has upper middleclass fundraiser sensibilities and abhors not only vacuums but messy people.
Thank you DK for talking about breached promises by government. That deserves more ink, but I am not coherent enough.
And John- While this woman is caring for an elderly bedridden relative maybe you ought to think about dumbed down care when it comes to looking after fragile skin and feeding people through tubes and all of that. THat used to be the job of the nurses in the NURSING homes.
Still mad...
Hmmm. And it looks like I really must remember to read these articles for myself rather than trusting that you'll give us an accurate picture of them. You've been quite selective with the bits you've quoted, haven't you?
For example – that bit where she says she's angry with the government for underfunding care for the elderly, and you respond with that bitchy comment about her being worried that she's going to have to spend her inheritance? Well, obviously that can't have been her worry, because what you somehow omitted to say is that by then she'd actually SPENT her inheritance. She had done exactly what you say she should do – spent her father's life savings on his care. It had gone. All they had left was their pensions, which was apparently not enough. Oh, yes, and the house – which her mother was still *living* in. Was she supposed to sell her mother's house out from under her to keep her father's care funded? What kind of choice is that?
The reason she was angry about the underfunding of care for the elderly was not, despite what you have been trying to claim, because she was so selfish as to want to keep all her parents' money for herself. It was because she had spent all her parents' money (plus, from the sound of it, a fair bit of her own) on caring for them and, even after it had all been spent, the government still would not pay enough to fund the care of two lifelong tax payers. Painting this as money-grabbing behaviour on her part is simply dishonest of you.
You also state that Liz was 'openly wishing her parents dead' without going into the reasons, thereby making it sound as though this was all down to Liz not wanting to be bothered with her parents' care. You omit the explanation of why Liz really felt her mother would be better off dead: “My once-immaculate and elegant mother is shrunken, withered, bedbound, incontinent, unable to communicate, fed through a stomach tube; she has no teeth, her cheeks are sunken, her skin is grey, her eyes, when open, are rheumy and unfocused. She pulls her knees up to her chest and claws at her blankets.” Why, how appallingly selfish of this woman not to want her mother to have to live through this.
And you also have the nerve to claim that Liz does not care enough to look after her mother, that all she's trying to do is to fob the care off onto others. Liz visited her mother almost daily, phoned daily, took time for her at the expense of her own job and family, struggled far harder than she should have had to to get hold of the equipment her mother needed, learned how to use the gastrostomy tube, and, it's implied, coped with her mother's incontinence, an experience so distressing that she can't even talk about it. This is the woman you claim doesn't care and only wants others to shoulder the burden.
Why? Because she isn't taking her mother into her own home and you have decided – based on no personal knowledge of her mother or her mother's wishes, based on no evidence whatsoever that I can see – that this is 'the one thing that would really help'. Would you mind explaining exactly *how* you think it would really help? Her mother has dementia. Demented patients do not generally get better when moved from their own homes – they get worse. In addition, many of them have previously expressed strong wishes to remain in their own homes. Perhaps Liz's mother had expressed such wishes, and perhaps Liz was taking these, as well as other considerations about her mother's welfare, into account. You don't know, do you? But that doesn't stop you jumping to conclusions and getting judgemental about a situation about which you know very little and are ignoring much of what you do know.
It's easy to pass judgement on other people's situations, isn't it? You're not the one who's had to deal with any of this, but you still think it's fine to criticise Liz viciously for not doing more, for not doing the things you think she should be doing. Something must be done by someone else? Doesn't seem to me that it's Liz who's got that attitude – she's the one who's in there visiting day after day and wiping her mother's bottom. But it sure as hell sounds like it summarises *your* attitude.
What Sarah V said. And Jayann. And the Chairwoman. And Katy. And DK. Dr Crippen's done that thing again where he gets so emotional about a social ill that he lashes out at the first person available and end up making a vicious and unwarranted personal attack on an individual, thereby detracting from the reasonable points that can, with some difficulty, be disinterred from the invective.
I think Dr. C. has every right to point out that Liz Jenny's complaint reads like an immature teenager's cry at the unfairness of the world.
So, grow up, Liz, and learn to use the social services provided. If you had not spend years in total ignorance of the process of ageing of your parents you would not have been surprised by their deterioration.
If at all, this article fantastically describes the lack of will to grow up to taking on responsibilities beyond feeding yourself and hopefully healthy children on a day to day basis. May it be, that in Asian families the unmarried family attachments / singles take on much of the care ? Think of how many healthy single aunts and uncles are out there, who could make a fantastic difference if they spent just 1 hour per day for helping out ?
It also describes the lack of education of large parts of the healthy working population in matters of social security. Maybe Liz parents were wrong in trying to provide an uncomplicated, and simple life for her, and have protected her from hardships way too long. Too wealthy, maybe? Had she grown up in a small house with her grandparents ageing in it, she would never have ended up in a situation where she simply did not know what to do.
I rather suspect that Dr. C. does not care for his demented parents, either, but I also suspect that we would not read a whining article from him accusing the NHS, the government and the state of not providing enough care for his parents.
Dr. C. is right, what does the NHS have to do with it ? If too much care demand is put on the NHS, one ends up with managers declaring ill elderlies healthy, effectively withdrawing medical treatment in order to evade care demands.
And that is a real catastrophe.
"Dr Crippen may have been too harsh - but there's plenty out there to warrant his anger."
Liz Penny clearly isn't one of them. If Dr C knows people who genuinely are swanning around, doing nothing for their parents and expecting the State to pick up the whole of the bill then let him write a post in which he names and shames them and I'll cheer him on. I have no time for children who abandon their parents but Liz Penny obviously hasn't done that at all. It's just as well she did use a pseudonym, because she clearly doesn't deserve to have her name dragged through the mud in Google searches which will pick this article up.
Anonymous at 3:56 - you're putting words into my mouth, a classic case of projection perhaps ?
If you mean would I prefer it if the frequency of prolonged and degrading deaths could be reduced then the answer is definitely yes - but more to the point I am simply echoing what many patients are already trying to tell us if we care to listen.
The issues surrounding premature babies are complex but paediatricians have increasingly been questioning the wisdom of aggressive resuscitation in all cases.
Suicidal intent can be transitory, so in my mind there is no question of not treating the physical consequences of self harm and then providing ongoing psychological/psychiatric care - although rates of suicide have remained fairly constant in recent years, irrespective of views attributed to me about it.
Alcohol related health problems constitute a huge proportion of A&E work, why would I wish to deny head scans, sutures, parenteral vitamins, anticonvulsants, etc, etc.
And of course you will already know that we are getting on for 200,000 abortions a year in the UK, only a relatively modest proportion will have any abnormality - but I'm sure you already know that.
How bizarre to suggest that all nurses should toe the corporate line when it comes to end of life choices.
The only matter for debate these days is the threshold for such decisions - don't forget machines get switched off in ICU [possibly influenced by donor issues in some cases], while hospital DNR orders are made routinely.
What do you do in such cases, go and hide in the corner, or argue that there can never be ANY circumstances in which it is acceptable for death to provide a dignified release ?
p.s. apologies to the other bloggers for going off topic, I think Katy Newton has provided the most telling analysis so far.
The original post was uncomfortably vindictive, and somehow not quite in keeping with other targets shot down by the good doctor.
I also note the lack of counter arguments from Dr C [which are often a delight in themselves], most unusual.
I work in a residential nursing home, as a care assistant, and I do a hell of a lot of the personal care that simply cannot be done if the resident in question was to stay at home. I am a young, strong and healthy twenty-year old, but even I alone cannot do most of the lifting, hoisting and various vagaries of personal care as someone comes to the end of their lives.
Whilst I agree that people should take responsibility for their elderly relatives - it breaks my heart when some of them never get visitors despite having, in one case, five children all living locally - I also see daughters and sons and wives and husbands coming in daily to assist with things like feeding, washing and just simple care. But they can't offer the services we, as nurses and carers, offer.
Yesterday, I consoled an 80-year old woman, who has bad arthritis, diabetes and is just rolling down the hill of dementia. She was sobbing her heart out because the house she had lived in since she was born was sold to provide her care. It had to go - it's not a cheap home - but it was still destressing to see.
Essentially, what I'm saying is that it's not as simple as Dr C makes out. Although it's true that the middle-classes do tend to live longer, so it really is a middle-class issue.
I have just seen on Sky News that the National Audit Office published an in depth survey of the treatment of dementia in this country
You can read it here: http://www.nao.org.uk/pn/06-07/0607604.htm
I have not read the report but the summary backs up many of the things that people have been saying on here. Thsi bit of the report sumamry is somewhat critical of GP care of dementia.
"Fear and ignorance of the disease are barriers to people and unpaid carers approaching their GP about
suspected dementia, but we also found GPs’ own attitudes could hamper early diagnosis. Our web forum, focus groups and GP survey revealed that there remains
a widely-held perception that little can be done, and a
lack of urgency attached to diagnosing and addressing
the disease. Fewer than two thirds felt it was important to look actively for early symptoms. GPs who completed our knowledge survey on dementia scored on average
only 47 per cent correct answers and their confidence in diagnosing dementia had fallen since 2004. Only 31 per cent felt they had enough training to diagnose and
manage the disease and seventy per cent felt they had too little time to spend on people with dementia."
Is physical infirmity cruel? Is dementia desperately sad? Does the Pope wear a funny hat? Do bears shit in the woods?
Nursing/residential/care homes are still a portfolio asset. Care assistants still receive a pitiful wage ("high turnover of foreign staff" stuck out like a sore thumb). Many outfits continue to charge ludicrous sums for "care" - somebody, somewhere, is quids in. All made possible by this country's utterly dislocated attitude towards old age. As somebody said in the comments on the Times site: "We all in the UK care deeply, but too many of us want somebody else to actually do the caring."
I've had the privilege to look after numerous WWII vets in hospital. Proud men sobbing with fear and calling for their mothers. Days on end, nobody visiting them. That's why some of the outrage on here doesn't wash with me. Heck, it doesn't even have to be family - visit one today.
Dr Crippen may have been hasty - judgemental, even - but I'm glad he dropkicked the subject into everybody's [virtual] face. People need to wake up.
Lost Nurse: I'd be glad he'd written about the subject if he'd done so in a way that didn't involve a vitriolic, unjustified, inaccurate attack on someone who really is going to great lengths to help her parents and who is suffering deeply as a result. But the way he did it was out of line.
"We put our own lives and families on hold and irritated our work colleagues..."
sarah v. I feel sorry for the woman, ofcourse - but I'm not convinced by the tone of the article. She sounds surprised by the onset of old age. I don't mean to badmouth her - but the human race has been struggling with this 'ere topic for a while.
I notice the Great Wise Doc is not responding to questions on why it's ok for the middle-class to not look after their own kids, but why these same people should be forced to take in dementing relatives?
Odd that.
So many comments, this has obviously hit a nerve. I cannot reply to everything – and anyway, my view is but one – but as an overall comment I note that I have not been inundated with people saying,
“Oh yes, I will always make sure my parents have a home with me”
But I will try to go through and answer a few points that stand out to me:-
+++++++++
“And are you seriously suggesting that a lay person is qualified to care for an elderly woman with dementia. Geez louise. And because she mentions playing Scrabble you snidely assume that that is all that was needed.”
Well, until it gets very severe, most people can look after people with dementia, and such patients benefit from being look after by close family rather than a succession of strangers.
“This is sanctimonious and self-righteous nastiness, lacking any kind of compassion or empathy. How disappointing.”
Disagree. “Liz” chose to publish this mawkish one sided article. She must expect criticism.
++++++++++
“freda said...
“The blog posting upsets me - but for different reasons. I guess we could all do more for one another, but it would take sacrifice and a lot of love. My own parents are long dead and I find myself worrying about being a burden on my offspring in the future. But I do agree with one thing, the NHS and social services do a much better job than we often give them credit for in the circumstances in which they have to work.”
I am with you all the way there Freda.
++++++++++++
sjm said...
5 yrs ago, when my wonderful widowed ma-in-law was 86, and our kids had long fled the nest, we offered her a home with us: own bedroom and bathroom and sitting room/kitchenette. She refused, because she wanted to stay in the house she'd lived in since 1942, with neighbours she knew and friends just round the corner. We only lived 3 miles away.
Now she is 91, nearly blind, very deaf, and admits she made the wrong decision. We have since downsized, and my 69 yr old husband is himself losing his sight. We're still nearby, and we do what we can for her (aided by another relative), but we also have young grandchildren and another elderly relative on my side of the family to care for regularly.
You don't know, Dr C, what are the other complications in Liz Penny's life. You are right that the NHS is there to deal with sickness not elderly care, but let's not forget that the medical profession by and large are very keen to keep everyone alive (oh, I can hear your intake of breath and preparation for tirade as I write), without considering the problems for others. Yes, I know neither dementia nor alcoholism is immediately life-threatening, but both are damn difficult for the uninitiated to deal with daily. And just maybe, if the middle-classes were not clobbered by tax so heavily, we would be able to do much more for our families in time of need.
Sure, I only know the facts that Liz presented – and so that is what I must go on. She does not however explain why she did not give her mum and dad a home.
++++++++++
“It is not clear cut and I wonder Dr C, what you, a busy GP with a wife who works too,would do if you had 2 elderly parents needing full time care. Would you give up your job? Would you give up your holidays? Would your children give up their bedrooms for their Grandparents?
As a full time 24 hour a day carer (which someone with severe dementia would need), you would get very little, if any support.
I don't know if I could be that selfless and with that in mind will not be making any judgements Ms Penny on her predicament.”
It has not happened yet, but it might. I don’t know what I would do. But, if we did not take in an elderly relative, I would be open about that, and not whinge on about the failure of taxpayer to take her in. And now, as the children are older, I could reduce my hours to do something like this.
++++++++++++++++++++
anonymous said...
“Dr C - it all sounds so simple - build an extension, buy a bigger house, give up work! How many people have the finances to be able to do that? Our mortgage is huge - won't be paid off until my husband is 67 and 50% of it is interest only.... (ie the capital is not being paid off)
I imagine that caring for someone with complex needs such as Liz's mother is extremely challenging. How do you manage if you have small children when someone forgetful leaves the cooker or the fire on?
There aren't any magic answers here and not everyone is equipped financially or emotionally to care for someone elderly.”
Of COURSE it is not simple. Care of the elderly never is.
How do the Indians and Pakistanis manage to do it?
++++++++++++
Anonymous said...
“So, middle-class people should be forced to look after their ailing parents instead of skiing in Meribel, but not their healthy kids eh John? Or does that only apply to doctors? I think you're the one that's dementing.”
A truly helpful comment.
+++++++++++
“Dr Crippen, I like your blog a lot and I am as angry as you about much of what goes on in the NHS but on this point I think you have been far too simplistic about a major social issue.
If I understand your general thrust correctly, what you are essentially saying is that people should pay for their own care in their old age rather than being a burden on the NHS.”
No, not as simplistic as that. But I am saying that the taxpayer cannot pay for everything, and that families with resources should be expected to contribute. And do some personal caring, rather than delegate it.
++++++++++
“Working Class Hero said...
This post disappoints me. It diminishes you.”
Why?
+++++++++++
Anonymous said...
other random issues
i) plenty of "prudent" working class folk end up with a few quid in the bank at the end of their life, why should they be forced to hand it over for their care when their
nighbours who spent their equivalent money on beer and trips to spain get the same services for free?”
Anonymous, you have in one sentence shown why the NHS and the Welfare State is on its knees. To paraphrase what you say, “What is yours is mine, but what is mine is my own.”
This scrounging mentality is a disgrace and you have no insight at all.
++++++++++
Ion said...
“I'm sorry, but this post missed the mark entirely. Liz Penny's parents chose to conceive and raise her, but she did not choose to be born.
Your comments that Liz should sell up her folks' house and move them in were blinkered. Some of us, middle class though we are, live in urban flats where 'building an extension' is a laughable suggestion. Your comments also make no allowance that Liz's circumstances may not be amenable to 'cutting her working hours'- perhaps she's a single parent, or to the modern, economically and socially-mobile pattern of moving away from the childhood locale. My parents are thankfully still in good health, but nevertheless this diatribe was personally offensive to many struggling with aging parents.
Tuesday, July 03, 2007 10:03:00 PM”
No Ion, not at all. It is you who miss the point. When Mrs C and I were young professionals with no children with no children, we lived in an executive flat. Then when we had children, we bough a bigger house to house the children. But then we like our children. I guess if we had not like them, we would have farmed them out to Barnados or had them adopted. It would have been so much cheaper and much less hassle.
++++++++++
Suzie said...
"Why did you not give mum and dad a home, Liz? Bit inconvenient?.....It would have interfered with your social life, and your skiing holiday"
*******
Even assuming your comments are correct, John, you're being hypocritical: It's not on to try to arrange alternative care for parents who are incapable of looking after themselves but it's perfectly ok for two doctors to leave three children under 5 without a supervising adult night after night, so that the fact they had children to care for didn't interfere with their social life and holiday.
There's a double-standard if ever I saw one! “
+++++++
Suzie, you are being a pillock, and intellectually shoddy. What the McCann’s did or did not do is nothing to do with this problem at all. I do not know what they did or did not do but, unlike you it seems, I still think we should look for Madeleine.
But that is all irrelevant, so don’t be silly.
This is about the care of the elderly.
+++++++++++
chairwoman of the bored said...
“It's very rarely that you make me angry, John, but this time you have done…”
Sorry. Not trying to make you angry. Just trying to hightlight the fact that in this country families do expect to look after their elderly relatives as well as they should. Liz Penny put up the self-indulgent mawkish article and has no insight.
++++++++++
Aphra Behn said...
“Dr C, you repeatedly ask why asian families look after their elderly relatives and non-asian families do not.
Simple:
Asians are more likely to live in multi-family, multi-generational households. A colleague of mine, a sucessful asian career woman, a successful unmarried asian career woman, lives part of the time with her parents and part of the time with her brother, sister-in-law and neice.
She used to be the dependent daughter, but almost imperceptibly, her parents are becoming dependent on her.
There is a new market in Birmingham and other cities with large asian communities for large multi-bedroom houses specifically for large multi-family households.
If the burden is spread thin, it is light.
Do you and Mrs C still live with your parents or hers?”
Ahhhhhh!
At last . A characteristically well written and intelligent contribution from Aphra, rather than the mostly one sided rants above.
You describe, accurately, the extended family culture of Asian families. And as you suggest, a burden shared is a burden halved. It is a different culture.
But Aphra it is not simple. It is a different way of life to ours. A way of like in which the elderly are not only cared for, but are revered.
On a personal basis, sadly my parents are no longer around. But, for what it is worth, my mother’s sister, who was a polio paraplegic, lived with us for many years. Mrs C’s parents though approaching 80 are in robust good health but who knows what ten years will bring.
+++++++++++
infoholic UK said...
“You've completely missed the point on this one doc.
I don't want my kids to work their whole life, bring up their children and then spend years looking after me. All I will want them to do is check in from time to time and make sure I'm okay. But full-time care ? No thanks...
Wednesday, July 04, 2007 11:09:00 AM”
That is sweet, and a lot of peole say that but, when the chips are down, you would be amazed how grateful the elderly are when a child says “you will always have a home with me”
+++++++++++++
Katy Newton
“I have already had to change my job once because it wasn't possible to do the job I had before and care properly for my mother. I'm 31. I do think that I am entitled to have a life and a job and a family of my own. I'm sorry if that strikes you as selfish.”
Of course you are Katy. But can that not be done with mother living in your extended house as you come and go, with carers coming in. Beats living by herself with carers coming in.
++++++++++++++++++
Devil's Kitchen said...
Nowhere in the article is there any hint that Liz and sister considered moving their parents in with them, and caring for them, with help, in the family environment.
Why not?
With all due respect, John, why the fuck should they? Do you think that a senile woman and a drunk are not going to be distressing housemates for Liz Penny's children, for example?
Or, perhaps you would like to attack the state for extorting money and then refusing to fulfill its side of the social welfare bargain (I can't say contract because, you see, there isn't one. Otherwise, we taxpayers could sue)?
Have you told your children that you fully expect them to dedicate a large portion of their lives to caring for you when you are old and senile? That you expect them to bring you to live with them, no matter how busy their lives or how incapable you become?
I am slightly disturbed at the class warrior style contempt for the "evil middle classes" that you display here.”
Hello, DK. Class warrior style contempt for the “evil middle class”? What, you mean like Polly!?
“With all due respect, John, why the fuck should they? Do you think that a senile woman and a drunk are not going to be distressing housemates for Liz Penny's children, for example?”
Of course they are. But how distressed are the children going to be when the parents have to get in the care and disappear of with no notice a dozen times a week?
And, “for better or worse…” you know.
How often did daddy DK get distressed when DK junior came in pissed?
+++++++++++++++++++
OH DEAR too many comments to answer
But I have hit a raw nerve here. I have challenged the prissy middle class pretense that “we do everything we can for mum and dad”
We don’t.
Why don’t we admit it?
John
A classic case of projection maybe
+++++++++++++++++++++++++++++++
If you mean I am projecting onto your comments what I really think ought to happen, you would be mad.
But that is only if you knew me in my real life.
So I will overlook that.
Not.
I have always had disabled people in my life. I am a carer. I am also a human being. Who does not pretend to know what the answers are, but knows damned well that the last person I want advocating on my behalf, or a loved ones, is you.
Toe the line? No. Be human and realize that no everyone is as enlightened as you- yes. Dripping sarcasm of course. I realize that decisions are made that seem mad to you or to me- but who are you to be so arrogant that you denigrate those you serve- sorry work for.
I don't think I put words into your mouth.
You Said:
+++++++++++++You're the one who wants to keep everybody alive for as long as possible irrespective of how psychologically or financially damaging it may prove either to the individual, or their family.
Why should those with terminal disease or advanced dementia be forced to eek out a few more desperate weeks or months because of maleable medical ethics ?
+++++++++++++++
Not me.
Not ever.
I'll let your words speak on their own, and I will let mine do the same.
I am glad you work somewhere else.
Your last paragraph is a bloody insult to everyone, including me, who has posted here explaining what they do and have done for their parents.
'Prissy middle-class pretence'? Really, does your blog have a mystic analyser that determines the class background of every poster?
'We don't do everything we can for mum and dad' - who the hell are you to make such judgements? Does your blog also give you detailed life histories of everyone who posts?
Gee, weren't you lucky to be able to afford to move from your executive flat to a bigger house, and no doubt one that could be extended - how about those of us who for whatever reason couldn't afford to move to larger and more flexible dwellings? How about those of us who don't have gold-plated pensions, or indeed anything much in the way of state pensions to finance all this home care for their 90yr old parents?
"But I have hit a raw nerve here. I have challenged the prissy middle class pretense that “we do everything we can for mum and dad”
We don’t.
Why don’t we admit it?"
Happy to, John; as soon as my parents go looneytunes, they're going into a home.
What pisses me right off is that despite paying taxes left, right and centre, either I or my parents will be expected to pay for that care, whereas some feckless layabout who has contributed fuck all will get it paid for by the state.
You also rather dodged my question: have you sat your children down and told them that you expect them to bring you into their homes when you are senile?
"How often did daddy DK get distressed when DK junior came in pissed?"
And what relevance has that got, precisely?
I just find your vitriolic rant against someone who quite obviously is doing the best that she can, whilst juggling a full-time job and home life, slightly... well... unjustified? Unpleasant? Yes, that's probably a better term.
DK
Oh, and whilst we are about it, let's not start praising the Indian and Pakistani cultures because they don't put their parents in a home. The reason for that is connected with a whole lot of other far less praiseworthy traits such as ingrained oppression.
DK
"But today the State rules all. I predict that dealing with the elderly by the use of 'involuntary euthanasia', (as now pioneered in the Netherlands), will become the common practice in all of the EU."
I never said this was desirable, or moral. But it is inevitable. The welfare state is not sustainable, because more and more people realize there is no advantage to working when what they make is just taxed away to support the layabouts.
Anonymous [at 11:49] - I suspect you work Stateside but I may well be wrong ?
Although not directly related to the central theme of Dr Crippens post [how well do families, especially middle class families, care for vunerable elderly relatives] I was put in mind of the new Mental Capacity Act [2007], and the importance of end of life decisions, in particular advance directives.
The Act was introduced to provide a legal framework so that patients might still have a say about the extent of medical treatment imposed on them should they lose capacity, for example due to dementia.
I'm sorry that you feel so angry toward me but as I mentioned earlier I am presenting the views of patients themselves [not just my own], views which are so important that it has become necessary to enshrine them in law.
The two quotes of mine highlighted by you [presumably to illustrate how sinister I am] merely exemplify two undeniable facts;
[1] Doctors [or at least some of them] have fallen into a 'treat at all cost' mindset [see Dr Crippens recent views on terminal lung cancer], and clearly not everybody agrees with this, including some nurses I might add - I hesitate to add this but I can't help feeling that to a certain extent these behaviours are driven by religious sensibilities, such as the reverberating influence of Judao-christianism.
[2] Medical ethics have not advanced nearly as rapidly as medical technologies so today doctors are confronted with all sorts ethical dilemmas that simply did not exist until relatively recently [i.e. the last 50yrs or so].
You point correctly that I have no way of knowing your personal circumstances but by the same token the reverse is true - is it possible that you have made certain assumptions about my family circumstances without ever being in posession of the facts ?
Devil's Kitchen said...
Oh, and whilst we are about it, let's not start praising the Indian and Pakistani cultures because they don't put their parents in a home. The reason for that is connected with a whole lot of other far less praiseworthy traits such as ingrained oppression.
DK
++++++
Oh come on, DK that's awful.
It should hardly be need to said, but the overwhelming majority of ango-indian, anglo-pakistani families are just ordinary people getting on with their lives. And they are, on average, more likely to care for their elderly.
But all power to you for being honest. You are just about the only one who has spoken the unspeakable i.e. when my parents get old and infirm and cannot manage, they will have to go into a nursing home.
The only problem with this is that in 20 years time, there will be more people in nursing homes then there will be people in gainful employment (I exaggerate a tad) ... so who is going to pay for them?
I am not trying to offend anyone but, like most GPs, a significant part of my working week is beeing called to elderly patients by relatives who life close by and expect me to sort out the problems brought on by fraility. If the have an obvious acute medical illness, I can do something. But if they are old, and wobbly, and bit depressed because they are lonely, what am I supposed to do? Prozac is no substitute for family.
John
John - Katy said it too. I am in total agreement with her.
BTW I only have severe Lymphoedema (which makes walking further than the bathroom virtually impossible) and leg ulcers, and it's difficult to cope with. Add dementia and double incontinence and I can't imagine how, or why, any lay person could be expected to cope and have a life of their own.
Dr C - your comments about extending houses and moving to a bigger property and extremely simplistic:
1. not everybody owns a home
2. extension would not necessarily be possible - ie lack of space to extend, there could be objections etc; the cost might be too high. We couldn't afford to extend our house and we wouldn't get planning permission.
3. Moving house - bloody expensive - estate agent fee - approx 1.75% of the sale price + VAT; stamp duty - 1% on purchase price up to £250,000, 3% above £250,000, 5% above £500,000. Solicitor's fees for a sale and purchase circa £1,500. So you could be looking at fees of around £15,000 to £25,000+ depending on price of properties sold/purchased.
When we took out our mortgage it was 18 months ago it was more than 3.5 times my husband's salary. We won't have paid off 1/2 of it until he is 67, then the other 1/2 which is interest only (£150k) is sitting there....
You say that Asian families manage it so why can't we - the answer is white middle-class culture is very different and the relationships between the individuals are different. There is no way I am looking after my M-I-law - I'd rather get a divorce. My mother is difficult and she lives 150 miles away in a community she loves. I am not having her to live with us either. I have my self esteem and sanity to consider. I'll be honest and say that I don't have it in me to 'give' what is required to care for someone old and frail well.
I appreciate the point you are trying to make in that you see the consequences of children living miles away from their families - but this is what society is like these days - people are more geographically mobile - they move to where work is. Older people take comfort from familiarity. If you want a decent standard of living unless one member of the family is a high earner, it means both have to work. Kids these days want everything - toys, PC, nice clothes, swimming lessons, birthday parties, trips out - and so it goes on and on....
Maybe all us 30 to 40 somethings need to make extra provision now for old age (if we can afford to) - that's another challenge, having enough spare income to contribute to an enhance pension scheme, or a pension scheme at all!
You've raised an important issue in terms of who will pay for caring for an ageing population.
Thought this was kind of interesting Dr. Crippen:
http://www.cnn.com/2007/WORLD/asiapcf/07/05/damon.india.widows/#cnnSTCText
Seems India has its issues with caring for the elderly also.
Dr C, I'm all for saying it like it is and I think you've touched on some important points but the way you presented this doesn't really help what you're saying... Well-phrased arguments in nice wrapping and a respectful tone gets you so much further than "Grrrr!! Grrrrrrr! Grr! Grrrrrrrrrr! GRRRRRRRR!!!" Is it not possible to have a reasoned debate anymore without people throwing insults at each other? Something you replied to further up:
"Anonymous said...
other random issues
i) plenty of "prudent" working class folk end up with a few quid in the bank at the end of their life, why should they be forced to hand it over for their care when their
nighbours who spent their equivalent money on beer and trips to spain get the same services for free?”
Anonymous, you have in one sentence shown why the NHS and the Welfare State is on its knees. To paraphrase what you say, “What is yours is mine, but what is mine is my own.”
This scrounging mentality is a disgrace and you have no insight at all."
You totally missed the point here but still managed to throw in a less than respectful jibe at this person, who after all brings up something important - I'd hate to put in a movie quote here but it might illustrate my point somewhat:
Will turner: In a fair fight, I'd kill you.
Jack Sparrow: That's not much incentive for me to fight fair, then, is it?
If you have money that you've saved up during the course of a relatively spartan life, you get to pay for your own care. Yeah that sounds a whole lot better than just getting it for free.
Where I'm from, it's common practice for the elderly to give their money away so that they don't still have it and therefore get all the mess it comes with. And why shouldn't they get to do what they want with that money. They paid the same amount of tax as everybody else. They've contributed the same. It seems that in some ways the system puts us in danger of becoming a Thou Shalt Not Save society because you are, effectively, punished for it.
Can you try to get out of the middle-class-whatever mindset you're in (what I just described is not in a class system) and imagine two families, both parents working, two kids, average mortgage. Neither family makes that much money but they make about the same and manage alright. One of the families saves as much as they can so they can spend it on stuff later, inheritance, pensions, etc, and generally don't go too crazy with their money. The other goes on holiday to Spain every year and don't ever have much left over, and if they do they don't even consider saving it because it's more important to them to spend that money making themselves happy now.
The kids move out, the parents retire, maybe they get sick. The family that has money saved up gets to pay for their own care. The family that had a jolly good time on their annual trip to Spain get it paid for by the state.
Not much incentive to save up money, eh?
I just looked at the CNN article provided by Petri - how heartbreakingly sad...
I must say, Dr Crippen, I expected a higher standard of response from you. My points were:
1. You've completely misrepresented the woman who wrote the article. Go and look at it again and ask yourself if you really can say that she has done nothing for her mother. I wonder if you even read it properly or if you just read the first three lines and decided you knew the ending?
2. Most people actually genuinely cannot manage, either in terms of finances or in time, the care that you're talking about. Most couples and families, whatever their class, cannot afford to lose one partner's income, nor can they afford to pay for live-in care. What exactly do you suggest that they do?
3. You seem to have fallen into the trap of assuming that the NHS does taxpayers a favour. It doesn't. It's funded entirely by taxes and it was put in place by the State and it is supposed to be there for everyone. The fact that that is a promise that cannot be kept is not in dispute, at least not between you and I, but it is the middle classes you seem to despise so who keep it running and they have no choice about how their taxes are used, nor can they withhold payment on the basis that the service is flawed. You apparently think that the solution to that problem is for the middle classes to keep paying through the nose for that service and indeed national services generally, yet selflessly and charitably refuse to use those services when they themselves have need of them. Well, I've got news for you, Crippers - many of them can't afford to do that. It's like an insurance company telling customers not to claim on their policies because other customers might need the money more. If you don't want them to use the NHS, give them back their taxes and let them fend for themselves. I'd be happy with that. Flawed though the welfare state is, it's the middle classes whose taxes prop it up and for you to say that they should then selflessly refuse what little payback it offers them in return because it can't keep its promises is both unfair and unrealistic.
Katy, I don't mean to be rude about the woman, but some of that article reads as if she was born yesterday: the horrid "uncaring" hospitals (that nonetheless manage to perform the correct clinical investigations)...the smell of stale urine...the tasks too "nauseating" to describe...Are we now so divorced from our bodily fluids that these things come as a surprise? It's not stuff you put your normal life "on hold" for. It IS normal life. An emotional and physical challenge? Yes, certainly. A reason to howl at the moon and call it news? No, not really.
There's also some confusion here about social and health care (and the differences thereof), not to say the yawning gap in expectation. I pay my taxes so that if (God forbid) I need it, some tough old A+E nurse can stick an airway down and whisk me thru a big scanner. I don't expect a big Travelodge welcome.
Dr Crippen may have been a trifle careless in his use of language, but I'm glad the topic has been blown wide open. It's a better approach to demographic change than just sleepwalking.
Lost nurse
the horrid "uncaring" hospitals (that nonetheless manage to perform the correct clinical investigations)...
Oh yes? Not in my experience. A woman on my mother's ward was there because she'd been assaulted in her house, by a caller, probably a would-be robber. The police did a very good job, spared no effort. The woman was, the medical staff thought, well enough to be moved to the rehab ward. There, she got a minor chest infection, and died. The post mortem revealed an injury the hospital had missed, that was a major factor in her death from a minor infection.
So, the attacker -- already arrested by the police -- was charged with murder. And the hospital? Well, not their fault...
I can document the case if necessary but don't really want to distress the woman's friends by giving her name. I can give other instances -- not to do with my family and my concerns -- but can't document them in the same way.
My last in-patient experience was so very good -- all the staff friendly and caring and skilled -- that I didn't pay much attention to my mother's initial complaint of lack of care and neglect. I'll never make that mistake again.
the smell of stale urine...the tasks too "nauseating" to describe...
here I agree with you. And if I'd read the Times piece over coffee, rather than reading the account here, I might well have disliked aspects of it. (Not all of it, but, aspects of it.) But the piece reads to me as a cry of distress by someone who needs to express their anger; it certainly isn't a careful analysis; it contains inconsistencies... why, it could even have been a blog post....
it does reek of a kind of feeling of entitlement I happen to lack, but so, be it said, have numerous posts here by junior doctors complaining they might not be able to get a job in their first choice specialist field in the city of their choosing.
There's also some confusion here about social and health care
True. But that's understandable given the fuzzy nature of the rules on continuing care and the difficulty of getting accurate information about entitlement.
I'm glad the topic has been blown wide open.
I thought it already had been. I've certainly read a number of discussions of it in the media. Unfortunately, reasoned discussion does tend to be pre-empted by the kind of mass sentimentality evoked by, let's say, certain other topics discussed on this blog.
Jayann- The article was patently a cry of distress & I don't mean to make light of her situation. You are quite right -'tone' inevitably suffers when one is in despair.
"I'll never make that mistake again."
I'm not disagreeing with you. My advice to relatives: do your bit and watch loved ones/friends/neighbours like a hawk. And, of course, most visitors are very good. It's just that the exceptions tend to really stick out...
The topic might well be out in the open, but elderly care is often still much the same cinderella service. Although I did meet a (very) old dear the other day who remembers "the workhouse" - she was effusive in her praise for hospital & care staff. Not everybody is being failed.
In my local paper today:
- Property section: 'Properties with an annex are often in big demand as more and more families take on the responsibilities of looking atfer an elderly relative or have children returning home (watch out Dr C) after finishing college. Price? A mere £650,000. A snip - don't all rush at once....
- Main section: 'The neglect of a "Anytown" woman suffered at a care home in "Somewhere else town" contributed to her death, an inquest ruled on Friday. The inquest heard that the care home failed to obtain the correct dressings to apply to Mrs X's bedsore for two weeks. Giving evidence, the care home manager said, 'I cannot remember what dressing is what. I'm the manager, I just sit in the office.'
What can you say?
No A and E charge nurse, I am from "the colonies" and am extremely horrified by what is happening with your system, because our system seems to want to emulate it. As for being angry, yes. I get angry when people want to "off" others for theirs or others own good--- because it becomes a damned slippery slope.
There are people who would enshrine into law that if you are elderly or disabled you should be dead. You are sub-human at that point.
Then there are people like me who disagree.
There is a place for advance directives. That would be a good discussion.
There is a reason most times that doctors do not want to kill their patients. Sometimes they take their oath seriously. Sometimes they are religious. Sometimes they are covering their butts. I know there are more reasons.
I have no idea what the solution is, but I am not sure I want any state to impose a formula that essentially reduces the value of a life to what that life can do for a state. A lot of people, not just the elderly, would be deemed unfit for human life.
Ballastexistenz is the term once used for those people, and is also the name of a blog written from the POV of a woman with autism. Maybe visit that site to see how someone once deemed unable to communicate and unimportant feels about a system that devalues her for being different and burdensome.
We all will get old. I would prefer to live in a world that accepted that, lived up to its implicit contracts, and dealt with people decently. Family is important, but as Dr Crippen so often writes about, so is help from the RIGHT experts.
And dear doctor- are you never going to answer the question asked above: Is expecting families to do nursing care not a form of dumbing down of medicine?
Bedsores are best managed by nurses, I believe you once said. I will check on that of course.
As for the surprise shown by this woman- it seems to me that the speed of changes may have had something to do with it. When you don't have time ot think during a series of crises it can be overwhelming.
Lost nurse, thank you for your understanding.
My advice to relatives: do your bit and watch loved ones/friends/neighbours like a hawk.
as I did after that!, I just wish I had right from the start.
And, of course, most visitors are very good
Yes, that was my impression too (and other visitors helped me a lot). I do know some can be overly demanding, and also, target the staff who have no power.
The topic might well be out in the open, but elderly care is often still much the same cinderella service.
OK I agree, in fact, I agree strongly. I joined Age Concern (joined their network) for that reason, and must join Elder Abuse too. I hope once my housing problems are sorted out (don't ask!) to do more.
Also I admit that till my mother entered hospital I had little idea care of the elderly was cinderella.
I've just read the Times article - three times. It is not a new story - I have read and listened to it hundreds of times in different guises.
Liz Penny is a caring daughter at her wits end with worry. But she is, like the vast majority of us, a product of the latter half of the 20th century - a time when we all decided we wanted more from life than just survival.
The plain facts are that 50 years ago in the UK, most families had only one breadwinner - Mum was at home to look after Granny and the kids. Doing so was an integral part of our culture and nobody thought of doing it differently. In families from India and Pakistan, this is still the case today - few wives work other than in family businesses. Their culture has not yet been infected by the materialism from which we all suffer. Just as you don't find many of their elderly relatives in care homes, so you won't find many of their children with child minders.
Asking a daughter today to give up work to look after elderly parents is asking her to accept a way of life which passed out of our culture with the 2nd World War. We must accept the fact that it will not happen.
I have no arguement with everyone being asked to pay what they can afford toward their own care and frankly, knowing the independent nature of a large proportion of elderly people, I think most would prefer to do so.
Liz Penny's flustration and anger was caused by lack of knowledge. She did not know about the support systems which exist - and there are many of them. She did not know that many people manage to find sufficient support services to allow them to care for the elderly person in their home and still maintain their lifestyle.
What she needed was an expert on all aspects of care for the elderly to guide her. What she got was a multitude of people with knowledge of only a small part of the jigsaw that makes up the care package for one individual. She is still living with half the pieces missing - and she certainly can't see the picture on the box.
I would personally like to see either Local Councils or the Pensions Service provide a network of caseworkers who undertake this role - advising, guiding and supporting. Such a service would pay for itself time and again by ensuring that people access the correct support at the correct time.
Brodie - I'm actually largely in agreement, but "Their culture has not yet been infected by the materialism from which we all suffer" is short-sighted.
Working outside the home is our only real insurance against divorce, bad marriages or widowhood. That's survival plain and simple, even if we might do well to put more of a second income towards savings and family care.
"Suzie, you are being a pillock, and intellectually shoddy.....But that is all irrelevant, so don’t be silly."
********
Ah the refuge of those with a weak and inconsistent view - 'I can't fault the comment, so I'll denigrate the person'. Now that is "intellectually shoddy"!
Also, John, at what point did it become ok to start disparaging people becuase you don't agree with them? In the early days I recall that you asked a commentor to stop using personal slights. Now you seem to be the only one doing it!
I forgot! Some people should receive NHS Continuing Care i.e. nursing care fully funded by the NHS (decided by pre-hospital-discharge assessment; the latest from Age Concern Wales is that the assessment is often not carried out, for obvious reasons, I suppose...).
Alzheimer's, after a certain stage, is (following a ruling by the Ombudman) included in qualifying conditions.
http://www.alzheimers.org.uk/News_and_campaigns/Policy_Watch/NHSContinuingCare.htm
Age Concern Head Office are a good source on all this, their local offices carry their briefing leaflets.
There are many more sad comments added to the original article now, including one from a family member of Ms Penny.
http://women.timesonline.co.uk/tol/life_and_style/women/families/article2015770.ece
I'll try the link again
http://women.timesonline.co.uk/tol/life_and_style/women/families/article2015770.ece
Hmmphh
Well search Google for
Liz Penny the times
instead
The link works, Anne. (Thank you.) Timesonline was probably really busy.
the smell of stale urine..
++++++++++++++++
The smell of nasty dirty hospitals then???
I don't think that we are not so divorced from bodily fluids, as we have an expectation that things will be cleaned on schedule.
The last time I was in the hospital I had to clean my own bathroom because the smell of urine was cloying, and the woman next to me was obviously peeing on the floor On the toilet, and in the shower and not cleaning out her "hat". Yummy. It took a friend to complain for the bathroom to be cleaned, and then the woman used the same cloth on everything. Yeah- which explains partially methinks why I ended up with a superbug that sickened me for the next six months.
With the rush to privatize everything to do with services to hospitals- food and cleaning especially- there has been a decline in standards. When there is not proper training in cleaning techniques it becomes a breeding ground for nasty things.
This is a disgrace, and I do believe your new PM made some comments about this last week- hopefully he doesn't forget or set up a dozen committees or whatever else to make it look like someone is doing something until it goes away from the public's minds. Unfortunately our new political leader has not cleaned house in the same way when made aware of surgical equipment not being clean. They notified patients then tried to defend themselves, divert blame and deflect criticism-- so now no-one is talking about it anymore.
Cleanliness is one of those things that ought not be optional in a medical setting.
I can't understand the people who save up all their lives "for their old age" and then object to using the money they've saved!
I live 200 miles from my parents (who are divorced), in a 1-bedroomed flat, with a mortgage 3x my salary, in a city where house prices double every 7 years and properties sell for 30% over the starting price. I can't afford anything bigger than my tiny flat.
My parents are only 61 and 60 and they're fit and well - my dad spent his 60th birthday mountain biking. But I know a time will come when that changes. Both of them have said several times that they would rather go into a care home than "be a burden" on me or my brother.
To be honest, there's no way my brother would take either of them in, and that's just as well, because he wouldn't know where to start. So that leaves me attempting to care for both divorced parents. Do I sell my flat here and give up my job and my friends and most of my life to move 200 miles away to care for them? Do I sell their houses and buy a bigger flat here and move them both in with me, away from their friends, familiar surroundings etc?
I have no desire to look after my parents if and when they get to that stage. Our family dynamics are - well, we love each other, but we're not a close family, we never have been, and a couple of days in each other's company is enough. The thought of having to live with either of my parents is one which, quite frankly, upsets me.
I work in a caring profession. I think I do a reasonable job at it. But I walk away from it at the end of of every day. I couldn't do my job at work and then come home and do it all again from a more personal perspective - I just couldn't.
What I see over and over again from Dr Crippen, particularly on the topic of elderly care, is that he thinks everyone else should subscribe to his point of view. We saw this a few months ago when he decided that an elderly lady would be better off in a care home - he appeared to pay no attention to what she might want and what the other options are - he decided she'd be better off in care and anyone who suggested otherwise was an ignorant idiot who had no right to challenge him. Here we see him deciding that this woman should have taken her parents into her home and because she didn't do what he thinks is the right thing, she's selfish and lazy and all the rest of it.
God you guys are lacking perspective...
"The NHS is supposed to be there for everyone"????
What planet do you live on? Children are 'supposed' to be there for their parents. Unless they leave them outside to die. I'd be annoyed, frankly, if I had to spend half my time looking after relatives but I'd still do it. I don't expect a damn cent from the Government. And Devil's Kitchen, I realize that the state is extorting half my cash, but that only steels my resolve never to have to deal with it or its agencies. I just work harder.
"is expecting families to do nursing care not a form of dumbing down of medicine"
So feeding old people now requires a university degree, does it? Am I missing something? I was sent to spoonfeed the local demented folk at the age of twelve and don't remember choking anyone.
"It seems that in some ways the system puts us in danger of becoming a Thou Shalt Not Save society because you are, effectively, punished for it"
You are not "punished" if you pay the minimum tax possible and then save for your own old age - as long as you expect nothing from anyone. Personally I can't understand even the concept of being ENVIOUS OF OTHERS BECAUSE THEY ARE PAUPERS. Then again my grandparents were war survivors who worked very hard for financial independence...being the near-victim of genocide tends to remove any assumptions that one's government is always providing and benevolent, even if they aren't literally Nazis this time round.
Completely agree with your comments Dr Crippen.
Why not just have Grandma and Grandad in the family home.
But today most people wont even look after their own childen at home, they send them out to little institutions (euphemism "creche") and pay for a 16 year old to watch them. So what chance does an elderly person have.
In fact when my mother n law was asking me for legal advise on how to dispose of their house so they wouldn't have to pay for care in their old age, and I said you know you can live with us, she was literally speachless.
My own mother had firmly instilled in her own children that she had looked after us and thoroughly expected to be "pushed around in her wheelchair" as repayment!
Bring your children up carefully and they will look after you. Unfortnately a whole generation such as Liz Penys parents didny know that their ofspring were being radicalized into a "me first" mentality.
I am not asian but Catholic. It was once in our culture to look after the vulnerable.
Mark: What you're missing is that Liz Penny's mother had a gastrostomy tube (a tube directly into her stomach). Feeding via gastrostomy tube needs to be done with an electric pump, and connecting all of this up and caring for the tube does require certain skills. (I don't know enough about it to know whether or not it's unreasonable to expect a layperson to learn those skills - I doubt it. However, it *is* a bit more complicated than just spooning food into someone's mouth.)
I haven't read all the comments above, and maybe what I'm about to say has already been said, but I've got two points:
1. Liz should have considered having her mother live with her, yes. We don't know whether she did or she didn't, but as she doesn't give any detail about her agonising decision, I think I'll assume she didn't.
2. Why did Liz keep going back to the Internet for her solutions? I'm an Internet consultant, I am all for using the Internet to research issues and find suppliers, but why doesn't she talk to her own doctor about this? or her parents' doctor(s)? She may have short-cut her nightmare by talking to someone who actually knows the system. The Internet isn't a replacement for talking to experts face-to-face.
About multi-generational households. It's not just the Asians who have them. My partner's parents are living in our house, and we have a youngest son who is still at school. Her father is bedridden 80% of the time, and her mother looks after him.
My partner is a single hander GP who has very little time for herself or her family (that's how I got to this blog). That's another story.
By and large, it works, but there are always "territory" issues with who does what at home, like housework and cooking.
So we are living by what commenter O'Donnell describes. We are lucky to have a house large enough to accomodate 3 generations. The situation is not ideal, but it works after a fashion.
A Hard Truth to Swallow
The Indypendent
Things weren’t going quite right. I noticed I was tired enough to put off going on errands that demanded a long walk. And I was weaker than I had ever been. My balance was a bit — no, a lot — off, and I was dizzy from time to time. At 75, I dismissed all this as “just getting old,” although I did complain mildly to my phalanx of doctors about general fatigue. I griped to my primary care doctor about the armload of prescription medications I was taking. Her response was, “Well, you have a lot of things wrong with you!” And she was right. I live with a medical textbook’s worth of pathologies, including severe vision impairment, atrial fibrillation (heart disease) and kidney issues.
If you would like to read more please visit the website:
www.indypendent.org
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