UnLtd Blogs - carer

The Meaning Behind My Blog Silence

Thu, 04 Jan 2007 13:18:11 +0000

I apologise for the lack of posting lately. From time to time my wife's lower back plays up in teeth-gritting sort of way and that kicked in just before Christmas and is showing no sign of abating.

I enjoyed the pre-Christmas Happystance workshops and have some more dates booked later this month and Februrary.

Happy New Year and I hope that your plans for 2007 are realised for you.

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.

Poor Care For The Elderly

Wed, 18 Oct 2006 13:49:55 +0000

The Times, amongst others, has a report on the poor state of home-care for elderly people. The 15 minute time slot came in for particular criticism.

In the first ever major study of domiciliary care services in England, the Commission for Social Care Inspection (CSCI) found that councils were unable to attract and retain staff because of poor pay and that both carers and the cared-for complained of being rushed, demoralised and unable to form meaningful relationships.

The "15 minute slot", in which a care worker is expected to visit a person, wash them and get them dressed and ready for the day, was identified as a symbol of a regime that will be unable to handle the growth of Britain's older population.

The 15 minute allocation is clearly a nonsense. Too many people don't receive the amount of care that they need at the time they need it, even if it would keep them independent and active for longer and delay the need for more intensive and extensive care.

However, it is all very well for Age Concern etc. to welcome the report but what we need is an authoritative and well-costed report on what it would cost to provide appropriate social and personal care.

There seem to be several reports about the deplorable state of hospital food and the numbers of elderly people who need assistance to eat in hospital but don't receive it.

There has been a persistent problem with patients not getting the nutrition they need while in hospital. The release of the figures, in a parliamentary written answer, follows a study by Age Concern into what it called "the scandal of malnourished older people in hospital". Nine out of 10 nurses told the charity's Hungry to be Heard survey that they did not have time to provide the elderly with the help they need at meal times. (Telegraph)

Dr. Crippen has some discussion about using volunteers to feed patients but I don't think that this is a practical alternative for a number of reasons.

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.

An EMT Asks, "Will No One Care?"

Wed, 13 Sep 2006 10:47:59 +0000

Magwitch asks, Will No One Care? He tells the story of young people with mental health problems and the lack of support for those who care for them. The family and friends who care for them are overwhelmed by the scale and complexity of needs that confront them

I hear too many stories like this when I run workshops. EMTs, paramedics and medical staff come across them everyday but there just seems to be a complete dearth of appropriate provision for carers. I've asked this question before, what is the cost of doing nothing?

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:

Wanless And The Future Of Social Care

Thu, 30 Mar 2006 13:47:41 +0000

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.

Tony Robinson and The Costs of Caring

Wed, 29 Mar 2006 16:27:14 +0000

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).

Reconciliation And Acknowledgement

Sat, 25 Mar 2006 20:28:14 +0000

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:

If No Man Is An Island, Is Compassion The Connection?

Tue, 14 Mar 2006 18:09:49 +0000

There is another extraordinary piece by Keith Carlson about the contrasts and ironies experienced by those who care for others. This piece is an antidote and contrast to the report about abuse by carers that is (rightly) dominating the news cycles at present, and the grisly stories featuring prominently on blogs like NHS Blog Doc's.

Keith Carlson gives us very moving insight into the currents of his working life and his vocation. He looks in on a patient and receives his good wishes for the weekend.

Our handshake was a lingering one, and then I took my leave, walked out into the light rain, and looked back at the windows of the institution temporarily housing this gentle and kind soul. He may be locked inside and I may be free to roam, but his spirit is as free as mine, and part of him left with me, and I carry it with me still. It lives in my heart, and no physical boundary can dissolve the strings of compassion which connect us all.

Amidst all the recent publicity, it is refreshing and necessary to read an account like this. And to know that there are people who are guided by their compassion and a keen sense of human dignity. It is all the more necessary when there are incidents that make us question whether some people recognise human dignity in the vulnerable. We frequently quote John Donne's Meditation XVII:

No man is an island, entire of itself...any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee

I have the privilege to run Happystance workshops with carers: the more that I meet them, and the more I come across the writings of people like Keith Carlson, the more I question whether the connection between us all is grounded in compassion. Which is back to thinking about the Dalai Lama's writing on the link between compassion and authentic happiness.

[E]thics are necessary as a means to ensure that we do not harm others...genuine happiness consists in those spiritual qualities of love, compassion, patience, tolerance and forgiveness and so on. For it is these which provide both for our happiness and others' happiness.

The varying health costs of caring

Thu, 15 Dec 2005 17:54:25 +0000

A study suggests that the type of assistance that Carers provide is linked to the amount of stress that they experience. Interestingly, the authors report that Carers who are coping with matters such as financial management or medication scheduling on behalf of others report more stress than those who are meeting physical needs.

To watch someone, particularly a parent, lose cognitive abilities so that they cannot do the 'thinking' tasks that they used to, is very hard on the caregiver emotionally—and often is actually more stressful than assisting with the more physically demanding tasks such as bathing or cleaning.

Unsurprisingly, many Caregivers feel increased sadness, irritability, fatigue and guilt. Feelings that are typically regarded as features of chronic unhappiness and precursors of chronic depression. The authors surveyed Caregivers and asked what they thought would help them. Carers stressed the need for practical, real-world assistance that would help them to manage their situation. The least favoured options were psychological counselling, group therapy and support groups.

Hmm-from my family experience, it can depend on the support group. I know that the Alzheimer’s Society runs an excellent network of Carers' groups that can be a one-stop shop for advice on local resources, how to apply for Carers’ Allowance and how to navigate someone through the health care system. My local branch offers a drop-in service on several days a week where Carers and the Care-Recipients can go and meet others, laugh and share stories. Similarly, my local Stroke Association offers a variety of services and different flavours of support.