Spare A Thought For Carers

A guest post from Sue Vincent

There are over six million unpaid carers in the UK alone. They range from small children to old age, and care quietly for family, friends and neighbours. In 2006 it was estimated that this silent workforce saved the UK economy around £87 billion that would otherwise had to be spent on social and medical care.

The 30th May is a Bank Holiday in England. I, and my fellow carers, will not get a day off, nor get paid extra, or at all, for working.

Carers are often forgotten, hidden, silent and isolated. Children who cannot learn to grow and play with their peers, because they care for their parents and siblings. Skilled and talented people who cannot work or create because their days, and often their nights, are spent caring. There is no time, nor is there energy for a social life. Holidays are rare, if ever. Careers, dreams, hopes and futures are surrendered daily, silently, to meet the needs of love.

As carers, there are 'rights', legislation, policies... and little support except from peer groups. Pride goes out of the window as poverty is enforced in very many cases. There is not a vast package of welfare benefits available to carers, as many people believe. Caring becomes a lifestyle. So does begging.

Carers need to be nurses, secretaries, chambermaids, housekeepers, cleaners, gardeners, taxi drivers, psychologists, counsellors, cooks, personal shopper and PA. Carers are companions, lifelines and advocates. We get no training, we learn through neccessity.

Carers are often exhausted, get little sleep and are expected to carry on. We are human, we get lonely, frustrated, irritated.. then feel incredibly guilty because our problems are so much less than those of the person for whom we care.

Carers are at risk of depression, isolation, injury and poverty. You cannot solve all these problems, but there IS something you CAN do. Many carers find any kind of social contact difficult, through time, expense... or the fading away of their social networks. Many rely on email and phone to stay in touch and remind ourselves we are human. An empty inbox can be a body blow when you are down.

All I ask is that you look at your friends and aquaintances and identify the carers among them. I can almost guarantee that you know at least one! Then pick up the phone, write a letter, send an email, a joke, a smile and LET A CARER KNOW YOU CARE.

Please, if this makes sense to you, pass this around.

Thank you.

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The creaking wakes me.

Four a.m., and again I am poised,

Ready to rise from the sofa bed,

Conscious of the steel strut against my spine.

Above my head, in the room once mine,

The bed that was mine once upon a time

Grinds against the wall.

He is wakeful again.

Another bad dream?

There are many.

There are tears.

There is fear and ‘what if’s?’

Every day.

Even the wonderful dreams hold pain,

The pain of loss and memory

The pain of what was and what should have been.

Reality is his nightmare.

“It is shit being me,”

I can dream too.

I can watch the flaying of a loved one,

A mangled body, broken in hate,

Love disembowelled by madness.

I stifle my screams in  the pillow

Or sob in the bathroom, quietly.

Even now.

I can see the scars on his chest

The tubes went in there, and there, and there..

No escape from heartache and memory,

Even in hope.

Body aches,

Mind is tired,

Bones hurt,

Muscles beg for peace,

Wedded to exhaustion.

The last shreds of youth

Leached away

Worry is my bedfellow.

Yet, how dare I complain?

How dare I feel tired?

He should be dead,

Fighting each day,

Hunting life with passion,

Pursuing the impossible,

Grasping its tail

With paralysed fingers.

I the squire, he the knight,

The dragon of disability

And the worm of despair,

The quest, the grail of normality.

Our shield is laughter

And gentle lunacy.

Our armour a refusal

To accept pain as answer.

My sin is hope,

My sin despair

Poised on the knife edge

Razor sharp, each step cutting.

My burden, guilt.

Failure to protect

To prevent the unpreventable

Failure to heal the unhealable

Illogical, ridiculous.

Yet human.

Because I am his Mum.

And because I care.

Sue Vincent

Self Care

I’ve felt quite tearful and fragile today spending much of it wobbling around ineffectively trying to get some work done. My morning began with two counts of bad news: one in five children have experienced severe abuse and (as if we didn’t know) the elderly are routinely being abused in the NHS

A round of hand-wringing, more reports, outraged defense of nurses, the usual nonsense will ensue. I left nursing partly because I didn’t like nurses too many of whom had unresolved personal issues and no sense of personal power which led to them using patients to abuse that power rather than defending patients as a matter of basic humanity, never mind professional ethics. They wouldn’t strike on behalf of patient care because they couldn’t be bothered to think about complex issues and because taking action worked against their view of themselves as angelic martyrs.

I used to be a Royal College of Nursing steward, gods help me, and it was simply impossible to get any of our colleagues interested in the issues that faced the NHS at the height of Thatcherism. There was one glorious march of 6,000 nurses – out of a total of 70,000. I see little change now, other than that the majority of carers on wards are no longer nurses and are less able and less willing to think for themselves. A streak of intentional cruelty has entered the profession, and not just in elder care.

So that’s the NHS. Everyone knows patient care (as opposed to generally good medical work) on anything other than acute and high tech wards is pretty rubbish and getting much worse. But to discover that one in five children has been abused left me reeling. If we can’t care for our own children then it’s a given that we can’t care for needy strangers.

Happily, a good friend came round, she too was delicate calling the news a ‘pyrrhic vindication’ of her stance against the flood of crap that she’d endured as she complained about the disgraceful lack of care her mother had suffered to indifferent and defensive nursing home, hospital and administrative drones. She too felt hopeless, that our entire population had apparently become brutish, futile and terminally isolated from ourselves and each other.

So we ate pancakes with Iberico ham, mozzarella, pesto and rocket, and more pancakes with strawberries, banana, lemon juice and sugar, and a large amount of tea. We moaned at each other and listened, and cared for each other and empathized and felt somewhat better.

Self care and self respect are ethical priorities for carers, not by any means a luxury. This is not to wallow in a vision of oneself as a martyr that no one must question - if the job's so awful, don't do it. Neither is it to attack reports and people who question whether some people could do a better job, as if you are uniquely perfect in the world. 

Almost every time I come into a hospital in a Chaplaincy role I begin to get burned out. I find myself wanting to cut corners or feeling guiltily grateful if a patient isn’t available, yet working with patients is fulfilling, interesting, pleasurable. Some of that is the stress of not knowing where this ward is or how that policy works. Becoming trusted and part of the team alleviates some of that stress and makes my life easier which makes my work with patients more fulfilling – I’m not having to work at putting distracting feelings and thoughts aside.

When I first began doing this work regularly I was, frankly, freaked out. Being confined in airlocks, having endless locked doors between me and fresh air made me frantic with claustrophobia, which I had to work bloody hard at disguising so that I could spend time with patients who spent months in that environment. The naked suffering and anguish that many patients were experiencing, the knowledge that many of them would never be free of it, a growing, horrified understanding of deeply shocking pasts, blew my mind. I would come home staggering, leap straight into the shower and pray, sometimes flat on my belly, for strength.

In time I became more resilient but not in denial of all those things that  distressed me. My experience of overwhelming panic and anguish offered me a brush of empathy with patients – this is how some of them feel, sometimes. So it was a useful and fruitful experience and one I wouldn’t wish on anyone. I wouldn’t suggest it as a way that hospital chaplains should learn their trade.

But there was nowhere Pagan to go for wisdom, understanding, even sympathy. Getting support in a form that suited me rather than suited people who wanted to impose their reiki or crystals or chanting or other stuff that they desperately wanted to do at me and that drove me berserk, was impossible. My non-Pagan friends gave me very, very welcome tea and sympathy, a non-Pagan counselling supervisor gave me non-Pagan supervision, my Gods felt far away and I felt absolutely useless.

Where I found support was with Christian religious, nuns and monks who listened in a detached kind of way, accepted and felt no need to stop my weeping jags or make me feel better. Just suggesting the obvious, that my Gods were very close to me as they’re close to everybody, was a great relief, and that was offered so tentatively, so respectfully that I spent some more time weeping again at their graceful humanity.

Support is something that’s best done in community, allowing others to genuinely care for us because they love us rather than because our job title renders us automatically worthy of respect, to lovingly say, 'You're not working at your best. What do you need to address that?' I know this viscerally and yet can’t seem to access it within Paganism and after years in this game I don’t believe it exists. Just as I don’t care about the excuses that nurses will have for not washing a patient for 13 days or routinely dehydrating and starving patients to death, so I don’t care about the excuses Pagan communities have for not materially supporting the people who are doing important work on their behalf, whether that’s chaplaincy or childcare or interfaith work. If you know of a good, existing model of ongoing Pagan support then let us know about it here. I would be absolutely delighted and not a little relieved to be proved wrong.

Finding Support

Speaking as an outsider, there seems to be a paradox at work in the American psyche. European people escaping religious persecution gave up homes, land and long generations of national identity to begin an entirely new life thousands of miles from all they knew for the sake of religious freedom. Almost as soon as the first principals of that freedom were enacted they were challenged to prevent Catholics from openly practicing, and so the struggle to limit religious freedom has continued right up to the present day. Despite the separation of church and state religion is absolutely central to every aspect of every American persons life, whatever their belief or lack of it.

It means that there’s is an instinctive neighbourliness in many American communities, people tend to pull together and put their money where their mouth is, willing to support charities and services in a way that we don’t here in the UK. The founding optimism and work ethic means that where people can, they tend to. And atheists are the most mistrusted group in America. (1)

40% of respondents characterized atheists as a group that "does not at all agree with my vision of American society", putting atheists well ahead of every other group, with the next highest being Muslims (26%) and homosexuals (23%).

So religion is a powder keg and a fundamental feature of American identity. Where Paganism is mildly mocked in the UK it (along with every other non-Christian philosophy) is perceived by too many Americans as some kind of threat to the soul of the nation. Personally, I believe it would be wonderful if American Pagans were able to sidestep the religious Olympics, to not enter into litigious, strident, corporate-speak that seems to characterise so much religious discourse, but with the stakes set so high I’m not sure that’s realistic. I emailed a US hospital chaplaincy organisation to ask how many Pagan members they had. The receptionist replied: “None. Paganism is not a religion.” Pagan pals sorted this out within the hour, but when a receptionist feels so strongly about what is and is not a religion, and safe enough to announce her opinion on behalf of a national organisation, that’s an indication of how febrile the subject is.

In which case, Pagan chaplains need all the support they can get, and this is where I hope that the professionalization of chaplaincy can be most useful. To be in contact with a group of people who are in a similar situation, facing similar problems and opportunities is a blessing. This is what good supervision can offer. A confidential space, run on similar but different foundations from a magical working group, where the focus is not the client but the practitioners’ relationship with the client.

Being able to make use of chaplaincy supervision depends on a background competency in chaplaincy skills. A solid, thought-through understanding of Pagan theology, counselling skills, boundaries and ethics are a foundation from which all else flows. The most brilliant ritualist, skilled in surfing magical realms is going to run into trouble as soon as they step foot into a hospital if they don’t have an understanding of what it means to enter a hospital.

Because of the centrality of religion in the US there are already a good number of Pagan chaplains functioning in a skilled and effective way. This is how most new vocations grow, from people just getting on with the job, wanting to learn more, to share their skills so that others can avoid pitfalls and offer the service more widely. Paganism has reached a level of maturity where it can (just about) support a virtual seminary, a place where Pagan ideals are supported.

Providing an extensive education in diverse aspects of Pagan philosophy, practice, and skilled ministry;

Supplementing existing ritual and magical skills with training for professional ministry and counseling;

Serving as an ongoing resource for individual continuing education; and

Providing a forum for scholarship and community

If you haven’t already looked at Cherry Hill Seminary, take the opportunity now! This is the premier gathering and resource for people serious about the vocation of Pagan Chaplaincy. They offer Masters degrees that are required by many hospitals before they recongise a religious visitor as a chaplain.

Perhaps most importantly, they offer fellowship. You will suddenly gain access to many other Pagan people doing the same thing as you, some of whom have been doing it for a very long time. Connections are made, friendships struck up, knowledgeable peer support is available. Formal supervision isn’t yet available but this is close to the next best thing.





1 ^ Penny Edgell; Joseph Gerteis, and Douglas Hartmann (April 2006). "Atheists As “Other”: Moral Boundaries and Cultural Membership in American Society". American Sociological Review 71 (2). http://www2.asanet.org/journals/asr/2006/toc050.html.

Abortion

A decade ago, in a field in Wiltshire, three of us sat listening to a friend. She had made an appointment for an abortion in a couple of days time and was working through her doubts and feelings witnessed by three other women. I’ve no strong feelings about abortion other than women bear enough responsibility for the existence of children in the world and so can generally manage the responsibility for stopping a child coming into the world. I’m pro-choice and pro-responsibility. What mattered here was the conscious preparation of this woman for the intentional killing of her child.

I’ve not spoken to pro-choice Pagans (there are a few anti-choice Pagans) who seem able to get to grips with this though I dare say there are some out there. Pagans talk a lot about the cyclical nature of this and that, and we say we have a loving respect for the Dark Goddess, She Who eats Her own children, but there seem very few of us who don’t need to smother the dark and difficult in the sparkles from unicorns hooves. There is nothing nice about abortion. Its purpose is to cause death, to exert power over something that is entirely vulnerable. That’s what women have to contend with, that’s exactly where the Dark Goddess steps in.

So it’s not a matter of “There, there, you poor thing, there is nothing else that you can do, you have no other choice,” because of course there is another choice. This situation calls for unswerving honesty, loyalty and clear sightedness. When you can look into the void and endure the horrendousness of what looks back at you you have stepped into your own power. Be careful you remain a decent human.

The evening before she went to hospital the four of us met in the wellbeing bender. The burner was chugging out heat, we had a guardian, a man who made sure no one walked in by mistake, and we’d all come personally prepared. Our intent was to prepare the pregnant woman for her abortion; to acknowledge the enormity of what she was going to do; to attempt to prepare the mystery that is a foetus for her death. We gently stripped the pregnant woman and lay her on cushions and sheepskins, covering her with blankets. One of us was at her head, one at her feet and another doing the physical acts of the magic. The pregnant woman shivered and cried a little and we all altered our consciousness so that we were able to say what needed to be said without recourse to paper, allowing words to come through our mouths from who knows where.

A calla lily was placed in a white shallow ceramic dish and we made it the focus of our attention as the bowl was balanced over the pregnant woman’s womb. We’d collected some menstrual blood throughout the day and when the time was right we poured the blood onto the white lily, staining it and spilling red into the white of the dish. It was surprisingly dramatic, speaking to that unconscious place which responds to symbol and meaning. The pregnant woman gasped in shock, sobbed and was moved to speak to her foetus and the Goddess which took however long it took. In the end, she was able to be impassive with the stained and bloodied image of wrecked purity.

A small stream flows close to the site and a large bottle had been filled with its water. As she remained held, we moved the lily and the bowl from her belly to a patch of earth from which we’d folded back the groundsheet and carpets and poured this water over the lily into the bowl, which overflowed so that the blood washed away into the Land. The bowl was again placed over her womb and first one woman and then the next drank from it, with the lily still in it, knowing that invisible traces of blood remained. Finally the pregnant woman drank from it. Her purity would not be the same as it had been but it remained intact.

In time we clothed her and led her back to her bed, tucking her in to dream, purposefully not grounding or making a formal end, allowing her unconscious to speak and be heard clearly. The three of us returned to the bender, tidied up and didn’t say much; it felt deep, powerful and fine.

Perhaps the central aspect of this work was equality. We knew each other very well, which is not to say we spent massive amounts of time together or even that we are close friends. But we had shared years of experience and possess the individual ability to work in a way that allows others to function as true equals. When one steps forward it doesn’t mean that others must stand back. That fundamental equality allowed us each to serve and be served with no covert power-focused intent.

This kind of ritual isn’t absolution or justification, something to be done routinely or lightly. We didn’t cast circles or invoke the elements because what are we trying to contain, to erect barriers against? We were 4 women working on behalf of a woman who had chosen to kill her child, on behalf of a child that was going to be killed and, I hope, in service of the Dark Goddess. With that clear at the front of our minds we also knew we were taking a risk in drinking from a vessel that held the mixed menstrual blood of a number of women, whether it be HIVAids or other blood-borne problems. I don’t recommend it and I don’t not recommend it. You’ll make your own choices over the kind of things you want to do, but be clear that if you want to do things properly and well you won’t always be able to perform a health and safety assessment.

Some Thoughts On Visiting.

It’s most likely that you’ll come into the hospital one of two ways, either by invitation from a particular patient or via the chaplaincy office when they discover a Pagan patient is asking for specific spiritual help. In either case it’s wise to make your first visit to the hospital via an appointment with the Chaplaincy office, for several reasons.




You will discover who the lead Chaplain is and she will discover who you are.
She can introduce you, the ward and other staff to each other which will facilitate your work no end.
You and she can discuss your work so that she finds out more about Paganism and you have someone to pass questions by.
If you don’t already have one she can advise you about getting a Criminal Records Bureau check (CRB)
http://www.crb.gov.uk/
which you will need if you’re going to do more than one
or two visits.

Here’re some pointers to consider.

1. Spend some time thinking about the purpose of your visit. Talk with a trusted friend or group of friends about it, people who’re up to more vigorous discussion than “Oh you’ll be great, you’re such a good person!” Get your intent really clear.

2. It’s important to hear, from the patient, what they think the purpose of your visit is.

3. Consider how you’re going to present yourself. Please don’t wear ritual clothing and kilos of Pagan jewellery. Personally, I’ve never felt the need to even wear a pentagram to draw attention to the fact that I Am A Pagan Chaplain. You’re there to quietly and unobtrusively be of service to a vulnerable person; drawing attention to them in a ward of strangers is not being of service to them. Also, don’t wear perfume, which can make ill people feel more ill.

4. Always phone the ward office first to let them know you’re coming and to negotiate a good time for you, the patient and the ward.


5. When you arrive on the ward, always go to the ward office first to let them know you’re there and to make sure that it’s still all right to visit. You don’t want to embarrass a patient who may be in the middle of something intimate. Never ever walk through closed doors or pulled curtains before checking and re-checking with the nurses.

6. You’re a guest of the patient. Be grounded, sensitive, polite and unpatronising to them and to other patients around them. Make gentle eye contact.

7. Think about where and how you place yourself. It’s almost never good to sit on the bed and you may just have to pull the chair around so you and the patient can see each other’s face.

8. Don’t touch any equipment, but do consider touching the patient at some point. People in hospital are seldom touched at any time other than to do something medical. Get over the ‘sexual assault’ paranoia, and just touch or hold a hand (that doesn’t have an IV in it) in a centred, reassuring manner without making a fuss.

9. Every visit will require a different amount of time. I’ve spent 2 or three hours with some patients and at times just going to the bedside, saying hello and asking if they need anything will be enough.

10. Listen, listen listen. Some of what you hear may be distressing. You’ve chosen to enter into a potentially distressing role, so contain it without withdrawing from the situation. Avoid frivolity.

11. If a patient complains about their care they may be right. But don’t undermine the staff. If you’re any doubt, talk with the lead Chaplain.

12. You may well be interrupted. Don’t assert your right to the patient but reassure them that you will visit again.

13. Wash your hands before visiting and after. If you find yourself with nothing to do, wash your hands.


Things to consider after a visit.

1. Timetable in a period of reflection after the visit. The multifaith room or chapel is an excellent place to do this. Talk with Deity. The purpose of this time is to be mindful of the importance of your meeting, to remember and even write down anything that you’ve been asked to do, and then to put the meeting to one side.

2. Maintain confidentiality. This is particularly important when talking with other Pagans and people outside of an official role beyond the hospital.

3. Where do you get your support? In this context support means a safe and supportive, professional meeting where you can express and experience your feelings in depth. It doesn’t mean being surrounded by people who think you’re great. Having a trusted person or group of people who will be loyal and honest is central to your continued good practice.