UnLtd Blogs - caregiver

The Cost of Being Upbeat

Tue, 05 Dec 2006 15:33:28 +0000

An article in the Sunday Times discusses The price of keeping up a brave face. Cathy Galvin gives her own response to the news that friends of Gordon and Sarah Brown report that they have remained upbeat since learning that their baby son Fraser has cystic fibrosis, a chronic, incurable condition.

Galvin doesn't pull her punches and paints a picture of poor support and family tensions that is too familiar to too many families in the UK. She says that being "upbeat" had become

the ultimate betrayal of the estimated 1.9m families in Britain whose children have some kind of special educational need, who play down the load they are carrying and rarely tell it how it is. Why? Because to say, �Well, he�s doing well on the medication but we were up all night because he couldn�t breathe. And we�re worried because his sister is being bullied at school because he�s different. And we�re running short of money because one of us needs to be at home in case there�s an emergency during the day� is not what people want to hear...

To hint at the daily, gruelling realities of looking after a disabled child is to risk � especially if you move in healthy, wealthy circles � being boring, to sound as though you�re not coping, to awaken in your listener the worrying prospect that the gap between their lives and yours is so vast that you and your family have become something alien and other and, among your colleagues, the suggestion you might not be up to the job.

It's a good piece but I have to criticise the Sunday Times for failing to provide an outline of what adequate provision would look like or what it would cost (an UnLtd colleague attempted a costing of mental health care and school provision for 1 million children earlier this year).

Flexible Working Arrangements for Carers

Sat, 11 Nov 2006 15:18:40 +0000

Depending on a number of factors you will either believe that flexible working arrangements for carers is the ruination of good business practice or you will think that it is a innovation that is long overdue. A lot of time and discussion has been spent in defining carer.

The definition of carer is an employee who is or expects to be caring for an adult who is either their husband or wife, their civil partner, or a close relation.

The employee will also fall into the government category of carer if they look after somebody who lives at the same address.

If you fall wihin that definition of carer, then you will have the legal right to request adaptable hours from 6 April 2007. Community Care, amongst others, is unhappy that the definition of carer is quite narrow. It is a little confusing, because by the definition that I quoted above, step-relatives are excluded. Blended families have been a social reality for some time and the omission of step-family members does seem to be quite striking. However, according to Community Carer, step-relatives are included.

It rejected calls from campaigners to apply the right, enshrined in the Work and Families Act 2006, to all carers, keeping to original plans to cover employees caring for a partner, relative or someone else living at the same address.

Dr. Crippen's Perspective on Children with Depression

Thu, 09 Nov 2006 18:42:52 +0000

The excellent Dr. Crippen has posted a remarkable discussion of children with depression. He goes through the NICE guidelines for managing depression in children and young people.

The discussion makes for grim reading. Earlier this year, the Great and the Good of the BMJ's Science Committee published a very dispiriting report about the state of children's mental health in the UK. What makes Dr. Crippen's analysis particularly disappointing is the news that GPs seem to be so overlooked despite their front-line position.

Crippo has left a comment on Dr. Crippen's post. He articulates much of the pain and difficulty experienced by families who care for a family member who is depressed.

I don't know what the solution is to the estimated mental health treatment needs of 1 in 10 children. I strongly suspect that the only probable large-scale delivery mechanism that is practical will be based in schools. I am confident that any multi-agency solution must involve the family doctor.

A Bleak Picture of Caring in the UK

Thu, 02 Nov 2006 16:21:57 +0000

The Duty to Care campaign by The Princess Royal Trust for Carers is reporting findings from a study that they commissioned. The headline that is attracting most attention is that over half of carers (51%) across the UK have felt like walking away from their caring responsibilities.

Some of the stark findings of the report are as follows:

Almost half of those caring for a partner, parent or child with a disability said they felt they never had a choice in taking up the role.
With six million carers in the UK, this could equate to just over 3 million people walking away, which would mean that the NHS would not be able to provide the care needed to keep people living independently in their homes.
A quarter of carers would like financial help; three-quarters would prioritiese time out, practical support and someone to talk to.
Many carers recognise that there has been a change in their relationship and experience feelings ranging from anger to sadness about the loss of the previous relationship they had with the person they now care for.

The snap-shot series of carers' statistics that are attracting a lot of comment are that:

71% of carers said they were stressed.
83% of carers are frustrated by their caring role.
56% of carers feel depressed.
58% of carers are angry.
52% of carers are feeling overwhelmed.
53% of carers feel that they are taken for granted.
32% of carers are caring for a parent.
28% of carers are caring for husband/wife/partner.
14% of carers are caring for a child with a disability or illness.
64% of carers turned to family and friends for help.

Campaigns need to sensationalise their findings in order to attract attention but some of the coverage of this report is ill-judged. Although it is undeniable that many carers feel like walking away, the same sense of duty that led many of them to take up the role of carer would prevent them from abandoning their loved one. In my experience, it is this knowledge that can lead to carers feeling overwhelmed, uncared for, and taken for granted.

What Is A Cost?

Mon, 16 Oct 2006 12:22:57 +0000

There has been a lot of discussion about the NICE decision to block the prescription of various drugs in the early stages of Alzheimer's Disease.

For one thing, they do not just benefit the patient but also the carer, which actually halves their true cost to �1.25 a day � or about the same as four cans of cat food.

If you look at the wider picture, take the drugs away, and carers will not be able to support their loved ones as long as they would choose to do so. Sufferers will be forced into care homes, which cost on average �500 a week, much sooner. Now that is not good value for money � compared with a week's worth of pills for �16.50.

The article quotes the conventional wisdom that carers save the country �57 billion. Caregiving exacts its own high-price toll. It is easy to demonise groups who don't agree with us but it is impossible to believe that the very smart, thoughtful and even altruistic (why else go in for a career in public service) people who work in the relevant government departments don't know this. They must know the cost of doing nothing. Presumably these people know all about how to appriase not only the financial costs and clinical benefits but the wider, human costs and those that are more indirect. Are we failing to have a conversation about the costs because we would not like the conclusions or the outcomes? If we can't be involved in these decisions and discussions, how else are we ever going to understand the decisions that are made on our behalf about rationing decisions and the treatment of ill or elderly people and their carers?

Is It Depression or Bleak Life Circumstances?

Fri, 13 Oct 2006 12:40:25 +0000

Have you come across the Patient Health Questionnaire (PHQ-9)? Pfizer is terribly proud of the PHQ-9 and claims that it is an

easy to use patient questionnaire [which] is a self-administered version of the PRIME-MD diagnostic instrument for common mental disorders.

I'm met a number of carers who have been put through the PHQ-9. By anecdotal report, the lowest score to date is 20 (severe depression). Oddly enough, lots of carers have trouble falling/staying asleep, particularly if they are listening out for sounds of illness or an indication that someone is up and wandering (e.g., someone with Alzheimer's Disease). Some carers lose their appetite with anxiety and others overeat for comfort. A number are in such distressed financial straits if they've given up work to care for someone that it's not unusual for them to feel like they're failures and face a future that is so bleak that they don't want it. These questions would catch a lot of carers and their everyday circumstances.

Is it hopelessly naive to say that the PHQ-9 is describing a state of mind that would disappear in many of the affected carers if they had appropriate resources and their future didn't look quite so bleak? The GPs who administer the PHQ-9 are familiar with the circumstances of carers: do they administer anti-depressants or offer talking therapy (good luck with that waiting list), or do they look at the score and decide that it is not really indicative of depression?

The Toll of Being a Caregiver

Thu, 28 Sep 2006 12:46:06 +0000

AADT has a good discussion of a recent story about the stress of caring and its impact on physical and mental health.

[C]aregivers, a group whose health is typically much poorer than contemporaries not caring for a loved one, endure stress and health deterioration in relation to the amount and intensity of the care they give. This burden, usually above and beyond work duties and nuclear family obligations, leads to high levels of depression, anxiety and stress. In describing her own experiences, one caregiver highlights how health can decline so rapidly:
Sometimes you didn't have time to take a shower. You didn't eat properly because you're so busy preparing their food and tending to them. You miss doctor's appointments because you can't get somebody to stay with him or you can't (bring) him," [Barbara Redmond, 68, said of caring for her husband for 2 1/2 years before his death.]

They give a very good summary of the statistics.

Carers need practical support for what they do and they need support for themselves. Yet again, this problem is only going to increase as our population ages. Fewer people will have the physical resources to allow them to carry out heavy-duty caring. There will be a time when we realise the cost of doing nothing.

NHS Squeeze: Will It Mean More Work And Fewer Resources For Carers?

Mon, 07 Aug 2006 16:41:12 +0000

I came across the following in Ancient Wisdom, Modern World: Ethics for a New Millennium, by the 14th Dalai Lama. It is an interesting description of the ethics of caring for ourselves and others and the authenticity of happiness that is grounded in qualities such as love, compassion, patience and tolerance.

Consider the following. We humans are social beings. We come into the world as the result of others' actions. We survive here in dependence on others. Whether we like it or not, there is hardly a moment of our lives when we do not benefit from others' activities. For this reason it is hardly surprising that most of our happiness arises in the context of our relationships with others.

Nor is it so remarkable that our greatest joy should come when we are motivated by concern for others. But that is not all. We find that not only do altruistic actions bring about happiness but they also lessen our experience of suffering. Here I am not suggesting that the individual whose actions are motivated by the wish to bring others' happiness necessarily meets with less misfortune than the one who does not. Sickness, old age, mishaps of one sort or another are the same for us all. But the sufferings which undermine our internal peace -- anxiety, doubt, disappointment -- these things are definitely less. In our concern for others, we worry less about ourselves. When we worry less about ourselves an experience of our own suffering is less intense.

It's Carers Week!

Mon, 12 Jun 2006 08:40:31 +0000

It's Carers Week so Hugh Marriott was on BBC's Breakfast this morning. Hugh wrote The Selfish Pig's Guide to Caring. Hugh famously styled himself as a "selfish pig" for his bouts of resentment as a carer and his repeated wish that things could be different.

Hugh writes lightly about the shock of realising that his emotions of frustration, anger and resentment are common to many carers with a feeling that life has been permanently stalled and that they have become invisible: as he said, "We all had another agenda". He has devised his own acronym, Person I Give Love & Endless Therapy to (P.I.G.L.E.T), Hugh writes about his experiences caring for his wife who has Huntingdon's Disease. He writes about the common struggles with Social Services, care assessments, hospitals, Benefit Agencies and all of the other departments who seem to have an input into the lives of carers and the people for whom they care but without seeming to make a significant contribution to quality of life. Reading through these accounts, it is obvious why Carers UK argues that carers Human Rights are breached on a regular basis.

I'm running a couple of Happystance workshops this week - I'm looking forward to them and hope that the carers enjoy them as much as I do.

They're Not The Priority But What Would You Do For The Carers?

Wed, 12 Apr 2006 17:53:30 +0000

There's another new medical blog, Diagnosis NFI. Magwitch is the author, and an Emergency Care Practitioner. The blog hasn't been up for long but has already provoked some interesting questions about policies that affect the lives of carers.

Magwitch tells us about a call out to an elderly woman who seems to be the Sad and Lonely of the title.

In the end it all seemed to boil down to depression. She was a proud and independent lady but now, due to arthritis and cancer, was confined to her own home. Most of her friends has passed away and, apart from the odd neighbour who popped in from time to time, she had no one to talk to during the day. She had a son, who now lived with her and was her main carer, but he went out to work and she was left to her own devices for 8 to 10 hours at a time. She felt she was becoming a burden on him and the more she thought about it the worse she got.

Now, she was very obviously the priority, and for various reasons, she was admitted to hospital for further assessment. However, it became apparent that the son had problems related to his role as a carer. His mother resented the times when he was not with her and had begun to phone him if he was 10 minutes late home from work. She was taking over his days-off.

What Is The Cost Of Doing Nothing?

Wed, 12 Apr 2006 16:52:03 +0000

Malcolm Gladwell has an extraordinary piece entitled Million Dollar Murray: Why problems like homelessness may be easier to solve than to manage. In a lengthy and fascinating read he effectively challenges some of my previous thinking about homelessness as a wicked problem causing honest paralysis over difficult issues. Wicked problems arose in the area of public policy and are described as "a set of problems that cannot be resolved with traditional analytical approaches". It is the nature of wicked problems that unanswered questions and chronic issues can take years to work out or never be satisfactorily resolved.

Two police officers in L.A. made an informal calculation as to the costs of managing "chronically homeless inebriates" like Murray Barr whom they had cared for over many years.

...Johns and O'Bryan realized that if you totted up all his hospital bills for the ten years that he had been on the streets�as well as substance-abuse-treatment costs, doctors' fees, and other expenses�Murray Barr probably ran up a medical bill as large as anyone in the state of Nevada.
"It cost us one million dollars not to do something about Murray," O'Bryan said.

Gladwell discusses the research into homelessness by Dennis Culhane.

What he discovered profoundly changed the way homelessness is understood. Homelessness doesn't have a normal distribution, it turned out. It has a power-law distribution. "We found that eighty per cent of the homeless were in and out really quickly," he said. "In Philadelphia, the most common length of time that someone is homeless is one day. And the second most common length is two days. And they never come back...
...The next ten per cent were what Culhane calls episodic users. They would come for three weeks at a time, and return periodically, particularly in the winter. They were quite young, and they were often heavy drug users. It was the last ten per cent�the group at the farthest edge of the curve�that interested Culhane the most. They were the chronically homeless, who lived in the shelters, sometimes for years at a time. They were older. Many were mentally ill or physically disabled, and when we think about homelessness as a social problem�the people sleeping on the sidewalk, aggressively panhandling, lying drunk in doorways, huddled on subway grates and under bridges�it's this group that we have in mind.

Culhane discovered that about despite the size of the homeless population in New York, there are 'only' 2500 who are chronically homeless. Culhane's most startling finding was that New York spent sixty-two million dollars p.a. to shelter just those 2500 hard-core homeless. Studies in both Boston and San Diego reported extraordinary levels of medical and social care spending on similar high-need populations that confirmed the calculations made by Johns and O'Bryan in L.A..

The Link Between Love and Horseradish

Tue, 11 Apr 2006 17:56:01 +0000

Matthew Baldwin of Defective Yeti is one of my favourite bloggers. The guy would be a menance to traffic if he had a radio spot and I have long since given up drinking anything while reading his posts - I've had too many unexpected returns of tea/coffee/ginger beer that have burned or severely irritated my nose.

Matthew writes on a number of topics. He is an avid gamer and has made recommendations that make frequent appearances in both my own gift wish-lists (seriously, you still don't use these?) and my purchasing decisions for others.

One of Matthew's most frequent topics is his son, aka The Squirrelly. You will have a rough idea of Matthew's robust approach to parenting if I quote from the account of a recent check-up at the paediatrician:

So, yes, we're having the standard toddler War Of The Wills, but, fortunately, The Squirrelly is exceptionally easy-going. His tantrums are infrequent, and rarely last more than a handful of seconds. When we took him in for his two-year checkup, the pediatrician asked "does he ever have tantrums that last longer than half an hour?" and we were all, like, "Half and hour?! [edited] no -- if he did we would have just left him in your elevator, sprinted back to the car, and driven to Ontario at 85 miles an hour."

I've been reading the blog for some time, but it was only today that I came across the post where Matthew announced that he had attended an assessment centre where he and his wife were advised that The Squirrelly is probably on the autistic spectrum. The post has an anecdote about eating horseradish: it's poignant, funny and remarkably tender.

Caring for People With Medically Unexplained Symptoms: Kron's "Well"

Sat, 08 Apr 2006 15:02:44 +0000

Do you need to permission to be ill even when you have a brain tumour? A Year to Live, A Year to Die tells the difficult story of Stewart Selman and his wife, Rebecca Peterson, who cared for him. We pick up the story after Stewart's catastrophic diagnosis of a brain tumour. Rebecca admits that there were low-points during which she threatened to send Stewart away because of his behaviour.

The juxtaposition of compassion, grief, anger and love in A Year to Live, A Year to Die will be familiar to many carers. This may be particularly true for people who are caring for someone who does not have permission to be ill. Both the caregiver and the person with the medically unexplained symptoms (MUS) live with ambiguity and uncertainty. They may be caught in a dispute with employers, medical advisers, or benefit assessors because they lack the 'legitimacy' of a diagnosis. It is possible that the burden of this ambivalence adds to the impact of the severity of the symptoms. It is a common finding in research literature that people with MUS have more negative views about their symptoms and the impact that these have had on their lives than do patients with a clearly defined and potentially disabling medical condition.

A Year To Live, A Year To Die

Sat, 01 Apr 2006 10:32:42 +0000

Following on from The Emotional Rollercoaster of Caring, I've just come across the searingly honest A Year to Live, A Year to Die. I strongly recommend that you read through the essays and listen to the recordings. It's a complex story of compassion and anger, the juxtaposed emotions that are familiar to so many carers. The widow disusses her grief and the social pressures about discussing health issues.

The background of the story is that:

Mary Beth Kirchner [the producer] received an extraordinary offer from someone who was entering what would likely be the most difficult time of his life. Stewart Selman had just been told he had a malignant brain tumor, and he said he wanted to keep an audio diary.
To tell the complete story, Kirchner asked Rebecca Peterson, Selman's widow, to listen to the diary and share her own memories of his final months. The resulting stories, intimate and full of hard truths, describe how terminal illness can usher a life to its end.

Stewart returns from hospital with the news of his diagnosis with a brain tumour:

I just felt terrible and I really had these incredible feelings of guilt, that I was abandoning my wife. We had made this lifetime deal. I wasn't going to be there when we were old or whatever and she was going to be left with my children and it would be much, much harder.

On a follow-up visit, Rebecca remembers that the neurologist said:

there's a lot of different ways people handle it. But there are some families can pull together and achieve this kind of transcendence.

Rebecca has a hard time matching that rhetoric to the experience of herself and her family:

The Emotional Rollercoaster Of Caring

Fri, 31 Mar 2006 18:00:53 +0000

Keith Carlson has given us another moving account of the emotional rollercoaster that is familiar to carers of people with complex issues. Of Train Wrecks and Ghosts tells us what it is like to look upon the outcome of years of self-abuse:

He sees me for the first time in weeks and says, "I'm hungry and they won't feed me." How do I explain to him how his lower esophagus disintegrated under the pressure of uncontrolled vomiting and that he must be fed directly into his small intestine, bypassing the stomach which now has no connection to his mouth which craves food and drink nonetheless? How do I tell him that his cocaine and heroin addiction, poor self care and choices have finally come home to roost, and that all of the warnings we gave him over the years were real?

We read about a woman struggling to keep her children, who is dealing with the ravages of HIV and a relapse from her sobriety. Carlson acknowledges his own emotions in the face of her current turmoil:

I hurt for her, even as I silently and internally process my profound disappointment and sadness.

There is an echo here of his previous exploration of Lofty Goals, Harsh Realities that will be familiar to anyone who has cared someone with addictions, particularly when these are secondary to mental illness. Carlson's aspiration is that

as long as diseases afflict living beings, may I be the doctor, the medicine, and also the nurse who restores them to health.

He tells us about the reality of dealing with a patient who has relapsed. He experiences very real frustration and understandable emotion at the consequences of the relapse both for the patient and her children. He realises that he needs to step-back from the situation and re-focus so that he can care for the patient and not lose his energy by paying undue attention to her behaviour.

At times, disappointment in my ability to maintain my composure in the face of my patients' failures to live up to my expectations can cloud my vision of who they are, of their own unfolding process. My cynical "social-worker self" sees addiction, cycles of neglect and poor judgement, seemingly avoidable mistakes and missteps. These perceived errors are easy for me to see, of course, and my agenda--- no matter how well meaning---cannot permanently get in the way of truly seeing with clarity and non-judgement, or else my powers as a stabilizing force for healing and growth are lost.

Carlson, like many carers in similar circumstances, feels the need for some "healing distance" that will allow him to renew those personal strengths that allow him to do the work that he does. Carers can need to remind themselves that a poor outcome is not necessarily a reflection of the quality of their efforts and love:

Sadly, there are some individuals who we eventually learn must implode on their own, beyond the reach of our assistance. At that time, compassion can still be front and central, even as the person's certain denouement looms on the approaching shore.

Carers do need to pay attention to their own well-being. I am disturbed that all the recent reports about the care of elderly people has not addressed the need for a programme for supporting carers adequately.