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

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.

 

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

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

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:

Reconciliation And Acknowledgement

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?

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.

Ethics, Happiness and Caring