The Emotional Rollercoaster Of Caring

Submitted by tonyplant on March 31, 2006 - 18:00.

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.

read more | add new comment | character | carers | caregiver | addiction

Wanless And The Future Of Social Care

Submitted by tonyplant on March 30, 2006 - 13:47.

Following on from my semi-articulate post on the cost of caring, the Guardian carries an overview of the Wanless proposals for expanding basic social-care services to elderly people. Wanless calculates that the social care spend needs to triple to around £30 billion by 2026 to meet the anticipated needs of the baby-boomer generation.

Wanless comments that the present system means that only the rich or those on means-tested support "could meet the "catastrophic" costs of the care packages needed by the most infirm". He says:

there should be universal care for all older people needing it, including help with bathing, dressing and feeding. But instead of there being a limited service for free, as happened in Scotland, there should be a partnership approach funding more generous provision. The state should pay 66% of the bill and the rest should be funded equally by the state and the individual, he said. Anyone not wanting to pay this contribution could forgo the extra service. The poorest should get help via benefits to pay for their contribution...

By 2026 the number of people in England over the age of 85 will have risen by two-thirds. Up to 450,000 more people will need a care home place or social care services to stay at home.

The report is said to support the conclusion that greater spending on improved social care for elderly people would reduce NHS spending. More than 40 per cent of the NHS budget is currently spent on people aged over 65. James Bartholomew argues that "no country neglects its elderly as badly as Britain does". If elderly people genuinely account for more than 40% of the NHS budget that I should think there are few countries that are achieving such poor outcomes for its expenditure.

read more | 1 comment | Wanless | social care | carer | caregiver

Tony Robinson and The Costs of Caring

Submitted by tonyplant on March 29, 2006 - 16:27.

Tony Robinson filmed a documentary about caring for his mother, who had Alzheimer's: he generously gave an interview and Q&A session about his caring experiences to Times Online. One of the comments that Robinson makes is that

care workers need better pay, more training and a proper career structure.

In the course of the programme, carers frequently raised the issue of how angry they were about the inadequacy of the Carers' Allowance. Juxtaposed to Robinson's above recommendation for care workers, its seems as if carers get substantially less pay, no training, and that caring destroys their own career structure. One striking example of this was Janice Marrs. Marrs revealed that she had given up a well-paid, senior post to care for her mother. Along with the job and salary, she gave up many of her pension arrangements and other necessities that would have given her security in her own future. She made the cogent point that she is paid just £45 a week to care for her mother for 24-hours a day. "Sometimes I'm up four times in the night - why is it just because she's old and very ill that I'm written off as well?"

Marrs contrasts her payment with that of Foster Carers, who she said receive £250 per week. I take her point as to the difference in treatment, but I'm not sure that the seeming animosity displayed towards the comparatively generous allowances awarded to Foster Carers on the Carers UK forums is appropriate, galling though many of the comparisons must be (particularly that a Foster Carers Allowance is paid per child, but a Carers Allowance is fixed, irrespective of the number of people for whom one cares).

read more | 4 comments | friedman | economic growth | Channel 4 | carer | caregiver | alzheimer's disease

Reconciliation And Acknowledgement

Submitted by tonyplant on March 25, 2006 - 20:28.

In Godspeed, Keith Carlson has offered another inspirational and poignant account of caring that enriches our understanding of compassion, essential dignity and the vocation of caring.

Godspeed is a poignant reminder that there are sicknesses that extend beyond the body and affect all of those around the person who is afflicted by these complex ills. Even when somebody has a complex medical history, the true sadness and disruption of that life may lie in the spiritual realm, or in the psychosocial miasma that surrounds those health problems.

The patient is a "human time-bomb" of clinical and other ills that Carlson has tried to defuse or render less harmful many times in the past. Carlson's efforts could not succeed without the patient's co-operation and so those attempts could not achieve their aim. Despite his remarkable resilience, the patient's serious illnesses seem to be about to overwhelm him.

Yet, despite "the body bristling with tubes and the technology of desperate measures", Carlson offers us a glimpse of what the man is to his family, and what he might have been. He is a "lost soul" whose family care about him and grieve for what he might have been:

read more | 1 comment | positive psychology | dalai lama | compassion | carer | caregiver | addiction

Caring For People With Schizophrenia

Submitted by tonyplant on March 23, 2006 - 21:11.

The excellent Dr. Crippen has posted a remarkable account of an elegy he gave at the funeral of his friend Emma, whose life came to a premature close after years of living with schizophrenia. The account of Emma's life would be incomplete without talking about the destructive force of schizophrenia, from the time when she was a teenager until her untimely death.

Schizophrenia. Perspectives on it vary so much. There is the demonising view of some popular news reporting that implies that all schizophrenics have the potential to become dangerous to all those around them. And yet, historically, it was not that long ago that schizophrenia (like severe depression) carried a romantic air about it - it was seen as the fine line between madness and creative genius. Schizophrenia has become the universal metaphor for conflicted duality. It stands for self-indulgence and stoicism, inferiority and perspicacity, alienation and virtuosi of empathy, victim and persecuter.

The eulogy is a poignant summary of Emma's life. Dr. Crippen's charts the decline of Emma with respect and much affection. It is particularly sad to read of the gradual loss of those activities that she enjoyed: and to learn that someone who loved reading so much gradually found herself unable to read. However, we learn to admire her resilience and that she retained her humour, and sometimes mined the vein of her insight into her condition:

read more | add new comment | schizophrenia | eulogy | dr. crippen | carers | caregivers | alcoholism | addiction

The Fun And Benefits Of Laughter

Submitted by tonyplant on March 22, 2006 - 18:08.

Time magazine has a good article, The Funny Thing About Laughter.

There is some discussion about whether laughter is good for us because it is primarily a social activity and implies the presence of others; or whether laughter is good for us because of its beneficial effects on hormone levels and our cardiovascular system. As always, it is probably a combination of both.

Laughter has many benefits for our well-being. And, above all, it is fun, it can make us happy and can be cost-free. I believe that it can help us build resilience and develop a Happystance.

I do sometimes come across people who are hostile to the notion of laughter and developing a Happystance. I respect that some people are angry at the notion of laughter which seems mocking in the context of what else is happening in their lives. And yet, I do know that some of the liveliest groups that I run are the ones with homeless people who are beset with a multitude of problems. There have been laughter projects with homeless people that have offered a way back into society. There have been research projects looking at the link between laughter and improved immune system functioning and greater self-confidence. As Oscar Wilde never put it, "We are all of us in the gutter. But some of us are chortling at the stars".

read more | add new comment | well-being | resilience | laughter | homeless | happystance | happiness | fun

With A Stroke Of A Pen...

Submitted by tonyplant on March 20, 2006 - 12:57.

Last week, Carers UK questioned whether carers' human rights were being observed in many of the policies and decisions that are made by the NHS and local authorities. A leaked document is reported in today's Guardian.  We learn that the NHS funding problems have triggered a review and there are outline standardised tests for determining who is eligible for fully-funded continuing care from the NHS: hint, if you suspect that some elderly or disabled people might be in the groups that may be excluded in the future, then you would be on the right track.

A trial run of these proposed standards on 20 older people revealed that only 2 people met the more stringent criteria for fully funded care. For 13 people with chronic illness and disabilities, 4 were said to have 'scraped through': people with MS and MND are among those who failed to qualify in this exercise. It's truly extraordinary to think that with a stroke of a pen, or a paper re-assessment, one can redefine and 're-baseline' the criteria for fully-funded care. The subject is unlikely to be significantly less impaired/ill/in need of assistance in that space of the time it takes to complete this reassessment but the difference in their financial and social status will be enormous. Nobody is suggesting that, Lazarus-like, the person in question will arise and walk after this reassessment - but there will be a striking difference in their status and future well-being.

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Enhanced Disclosure Arrived Without A Fanfare

Submitted by tonyplant on March 17, 2006 - 18:20.

I have whinged at length about the muda involved in applying for an enhanced disclosure from the Criminal Records Bureau. Well, today, I finally received my enhanced disclosure, having started the process in November and finally put the paperwork in in January. After such a palaver, I can't believe that it arrived so quietly in the post, without the merest screed or iota of a fanfare.

I can not believe that these checks have any substantive value when more than 9.5 million adults are currently required to get them in the UK. I can only be confirmed in this opinion by this week's report about those appalling instances of elder abuse that are perpetrated by paid carers from local authorities or those working in care homes.

I am pleased that I have jumped this administrative hurdle. I am pleased if it makes anybody feel safer in my presence although to date, nobody has asked for more than the standard disclosure that I already have. I'm appalled at the cumulative waste of time (mine, the designated people who checked the application, those who ran the check), money and resources.

Copyright 2006, Tony Plant Happystance Project

add new comment | muda | enhanced disclosure | elder abuse | CRO | CRB

Do Carers Have Human Rights?

Submitted by tonyplant on March 16, 2006 - 17:50.

Carers UK is asking whether carers have human rights.  Carers UK report that

Carers, like everyone else in the UK, are entitled to rely on the protection of the Human Rights Act 1998, which should ensure that public bodies take account of their human rights when they provide services. Public services play a critical role in guaranteeing carers' human rights. They can ensure that carers have the support they need to maintain a normal life. The report we are publishing today shows that reality falls a long way short of this ideal.

 

Many carers are pushed to the brink of physical and mental collapse because of the lack of support they receive...

Why do carers seem to be the only group of people who are automatically exempt from the restrictions of the working time directive? Why are carers expected to work under conditions that are assessed as too much of a health and safety hazard for trained professionals? The Guardian offers several grim stories of overworked and exhausted carers that will be only too familiar to many people. In the light of today's news about tightening of eligibility criteria for care for elderly or disabled people, it seems as if relief will not arrive any time in the near future.

 

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Bad Week for Caregivers And Those Whom They Care For

Submitted by tonyplant on March 16, 2006 - 17:25.

It's a bad week for carers in the UK.  On Monday, Dr. Crippen posted a diary entry about his Monday morning surgery that detailed the plight of several carers. One of the carers knows that:

when social services “assess” her, she is classified as low need. She knows the system. She worked in it herself. “The best thing I could do is have a heart attack, then we would be high need” she says.

Today, Thursday, it has been announced that Councils To Cut Care For Old and Disabled. Four in five local authorities report that they are about to tighten the eligibility criteria for services for elderly and disabled people. This is in response to funding problems with the NHS that have led to greater than anticipated calls upon Social Care Services budgets.

Almost half the councils reported a cut in funding from local NHS primary care trusts. Councils highlighted the soaring costs of care for the ageing population, unprecedented increases in demand for services for children with a learning disability and rises in fees for care homes. Eighty per cent of councils said they would be tightening further their criteria for provision of services for adults. Thousands who would have received care will go without or pay privately.

So, it looks as if there is going to be no provision for those people who are classified as "low need". Even when there may be strong reasons to suspect that a lack of appropriate support now may lead to a breakdown in the carer's health and create more complex problems in the future. Some carers, like David, have never had a carer's assessment. He has been looking after his wife and son for many years. He says of his situation:

read more | add new comment | social care | dr. crippen | carers | caregivers | care assessment