As a result of changes in family structure - smaller families, more mobile society, women working, unemployment and poverty - it is harder for families to cope with caring for the dying at home, even though it is generally accepted that most people wish to die in a familiar surrounding, and that the home environment (even with limitations) is the 'ideal' place to die.
The same study cites the aim of the World Health Organisation's 'Global Strategy of Health for All by the Year 2000', that
Everyone should be afforded Dignity and Comfort at the time of Death. By the year 2000, all those dying who are in contact with health and social services should be able to choose where they spend their last days, and, wherever that is, they should be able to expect optimal pain relief, physical comfort and psychological support from professionals.
It needs pointing out, to put these matters in perspective, that 50% of deaths in Britain are sudden. Here we are concerned with slow deaths, the dying process. Studies show that hospital nurses have more difficulty managing slow than quick dying.
The hospice movement offers great expertise in the care of the terminally ill, 'both inside their walls, and through staff such as Macmillan nurses going out into the community to give support to patients and relatives at home. But since the modern hospice owes its being and related service development to major cancer charities, the emphasis is on support for patients dying of cancer. Yet 75% of people who die do not have cancer.'
That home for many is the preferred place to die is confirmed by a study of home care services as an alternative to hospices:
Information provided by the carers three months after the patient's death indicated that patients who died at home preferred this, while half the patients who died in a hospice or hospital would have preferred to have been at home.
From 'Home Care Services - an Alternative to Hospices?' by
Audrey W. M. Ward, in Community Medicine Vol. 9 No. 1.
In 1961, 90% of doctors indicated a preference for not telling patients they had cancer, but in 1979 this was reversed, with 97% indicating a preference for passing on the diagnosis. Yet even today, many nurses are frequently being put on the spot by patients who have been told something ambiguous by the doctor and want more information.
Doctors and nurses have testified to the difficulty of coming close to the dying patient in hospital surroundings (although the small community cottage hospitals have a better reputation). Here are three such accounts, the first by Dr Sean Spence:
The gathered relatives, extended family, filled the rest of the room. Middle-aged men in suits crouched, sitting on plastic chairs, with tabloid newspapers open before them. They appeared to read the inane headlines by the glow of the artificial light, so that other agencies' realities flooded theirs. Their own state of reality must have been so great - a grandchild about to die - yet they chose to ruminate on external symbols, signs, secrets, intrigues, consumer durables which would not sustain them. When our own internal, subjective world becomes too real, when our own consciousness is too connected, do we then retreat into the external, the objective, the unreal?
From 'Television and the Retreat from Consciousness', by Dr Sean Spence, in Beshara magazine.
We're taught not to be overly cheery now, to omit the 'everything's fine' routine, and we have done pretty well. But now one is left in a lonely silent void. With the protective 'fine, fine' gone, the staff is left with only their vulnerability and fear. The dying patient is not yet seen as a person and thus cannot be communicated with as such.
I know you feel insecure, don't know what to say, don't know what to do. But please believe me, if you care, you can't go wrong. Just admit that you care.
Anon, American Journal of Nursing, 1970.
The most disturbing (for me) feature of the study was the reporting by patients that doctors and nurses 'withdrew' from the patient once the patient knew their prognosis. This was despite patients feeling that this was the time they most needed emotional support from their doctors and nurses.
Keith Ward, c/o Wakefield and Pontefract College of Health Studies, Pontefract General Infirmary, West Yorkshire (tel 0977 600 600, ext 6663).
In spite of these testimonies, modern hospitals are not soulless machines; doctors and nurses are not ogres.
Their fears and withdrawals cannot be wholly blamed on the hospital environment; they are part of the wider 'alienation from death in our age':
An orderly kind of death was part of an orderly life, and a number of ceremonies were an intrinsic part of dying. A will was written, psalms were chosen, and the speeches to be held were well prepared: these tasks were well in order long before death actually occurred.
If one fearfully retreats from the new and unknown in life, one will also attempt to flee from death. The need constantly to seek out continuity (non-change) is, in itself, an expression of fear of death.
From 'The Anxiety of the Unknown' by Jorn Beckmann and Henrik Olesen, Odense University Hospital, Denmark, '88.
Nurses are human too (like the rest of us!) as testified in the next letter from a nurse to The Natural Death Centre, which is followed by an account by a priest of visiting an old friend dying in hospital.
From a letter to The Natural Death Centre.
However one might interpret its labours there was no mistaking the sheer dedication of the nursing staff to the well-being of the patients. One evening the old black lady was visited by a young, fresh-faced nurse. She chatted with the patient for a few moments and then said, 'Well, good night Amy, I am going off duty now.' And proceeded to plant a firm kiss on the old lady's withered cheek. 'Now give me a kiss,' she continued, 'and have a good night's sleep. Oh no, that's not a proper kiss; now give me a real one. Come on now.' She bent lower over the bed and duly received her benefit. 'That was lovely,' she said, holding the patient's hand, 'Goodnight now, see you in the morning.'
Rev John Papworth, Editor, Fourth World Review, 24 Abercorn Place, London NW8 9XP (tel 071 286 4366).
Cancer Relief Macmillan Fund have moved away from the idea of raising money to build bedded hospices because of the vast running costs. They now feel it is more economic to encourage the building of day centres where people can be given both specialised care - eg assisted baths, physiotherapy, aromatherapy, massage - and social activities that keep them in the community and also give their carers a break from looking after them. In this way, people can stay at home longer, taking pressure off scarce hospital and hospice beds. The provision of twenty-four hour care at home is still out of reach in most places, but some people do see that as the ideal. Marie Curie nurses are available in some areas to stay with patients all night. Or there may be Iain Rennie Hospice At Home services who will provide twenty-four hour nursing care if necessary.
From a letter to The Natural Death Centre by Christine Mills.
The Hospice Information Service, at St Christopher's Hospice, puts out a regular newsletter giving the latest developments on the domestic and international scene, and information about local hospices, etc, may be obtained from them (see under Organisations in the Resources chapter).
The Buddhist Hospice Trust have volunteers in their Ananda Network who are prepared to sit with and befriend the terminally ill, whether the latter are Buddhists or not (again, see the Resources chapter for details).
This is the basic enabling right that helps us to bring a dying person home. There are other important legal rights, and in each case the issue is one that requires deep thought and consideration. The Voluntary Euthanasia Society of Scotland has published 'guidelines for the relatives of patients nearing eighty or more who are faced with a major operation, setting out medical factors to be considered before consenting on the patient's behalf'. It needs to be stressed that all such patients who are mentally competent should make such decisions for themselves and that the factor of chronological age is an irrelevance, it is more a question of biological age and mental and physical frailty. But the Society does make an important point:
In general, before consenting on a very elderly patient's behalf, be sure that he or she has a genuine zest for life and will be content to suffer the stresses and struggles of 'maximum recovery'.
For a Declaration of Rights that a person dying at home should have, see our Manifesto for the Dying, chapter nine.
Mother Teresa, quoted in 'Coming Home' by Deborah Duda.
Deborah Duda summarises some of the arguments for 'coming home', both for the dying person and for the carer:
The feeling of being totally wrenched by an unnatural catastrophe, common in sudden deaths and many hospital deaths, is less likely to occur at home. You know you're doing all you can do. If the thought comes up afterward, 'Maybe I could have done more,' you're likely to let go of it much more quickly than if you'd been isolated from a loved one in a hospital. After caring for someone who dies at home most people report feeling peace as well as loss - a feeling of appropriateness and completion and a greater openness to the new life ahead.
Reprinted with permission from 'Coming Home: A Guide to Dying at Home with Dignity', c 1987 Deborah Duda, Aurora Press, PO Box 573, Santa Fe, NM 87504, USA.
The patient who is unconscious may already have expressed a desire to be home. It may still be possible to elicit a response through signals where the level of consciousness is uncertain: 'Do you want to go home? Squeeze my hand for Yes - blink for No.'
Determining the best interests of a person who cannot express his or her own wishes, or who wishes to go home against the advice of the doctor, may be difficult. It is worth being clear as to who in the family has to make the decision, and how each person might be affected by it. A family discussion to decide, or to talk about the decision once made, may be appropriate. You may want to work out how you might share some of the tasks, and to make others aware of the sort of changes that will be happening. As Deborah Duda points out, 'Once you've made the decision for home, keep in mind that your focus shifts from curing to making comfortable.'
There will be circumstances where dying at home would not be appropriate - for instance if the person wanted to donate organs after death; or if there would be insufficient carers to look after the patient; or if it would involve the carers in overmuch difficulty, anxiety and pure physical exhaustion (especially if there were young children also needing care). Almost everyone asked blandly 'do you want to go home?' would say Yes, but all the factors need to be carefully considered, and it is important that those carers who decide that they cannot cope at home for whatever reason should not be made to feel guilty.
Likewise, the decision to bring or to keep the dying person at home may sometimes be made in circumstances that place an initial burden on the person making the decision. Here is a moving account of such a case, where a woman in Scotland found there was more support for her decision than she had imagined, in spite of official unhelpfulness.
The specialist then told my husband that he had liver cancer and nothing could be done for him. He died ten weeks later. I regret that the specialist told my husband without first telling me or asking me to be present and that he was so blunt about it. I also felt it negative to give no treatment of any kind as I feel there are many alternative treatments that could have been tried and that might have given hope. Soon after my husband told me the result of his biopsy, a friend advised me to get in touch with Macmillan nurses. I went and asked my GP how to contact them and he told me they would not be needed yet and did not seem to know where they were based. I then rang a cancer charity in Edinburgh who told me that they were in the same hospital where the specialist was based and had a part-time cancer doctor working with them.
I got in touch and from that time their support was invaluable. They are in fact not just nurses but specialists in the treatment of cancer and also counsellors. The nurse who called at the house regularly soon realised that my husband was in far more pain than he would admit to the doctor and arranged for him to have increased painkillers. When later he was given drugs to combat sickness, constipation, etc, she was able to tell me whether the way he reacted to them was normal. She gave me her telephone number and I was able to ring her at home any time I needed advice. I find it sad to think that the specialist does not send his patients along the passage to see the Macmillan nurses as soon as he has had to tell them that they have terminal cancer. The doctors appear not to want to recognise that these nurses can help the patients and families more than they can.
We had the choice whether to keep my husband at home or whether he should go to hospital. He was always very attached to his house and family and although we never talked to him about it, I was sure he would wish to stay at home, as we were able to carry on as if he had an illness from which he might recover. I was able to sleep in the same bed with him right until the day he died.
I was lucky enough to have a friend, who had been a nursing nun, with me during the last days, as well as my daughter. It was particularly nice to have somebody whom we all knew and who was a Catholic as we were. However I could have had a Marie Curie nurse daily or nightly if she had not been there. My husband did not need much nursing until the last week. Although he might have been a little more comfortable with a special bed, bed pans, etc, in a hospital and also have had more confidence in a nurse giving him the pills regularly, I am sure the fact that we could be with him most of the time in a normal way, and not as a hospital visit, made up for that.
While my husband was dying we were all able to pray together and I tried to see death as Christianity teaches us. I do feel however that the Church still tends to regard death as a tragedy and not as God's plan. The world makes us feel that dying is unacceptable. Those who live to a great age are congratulated so that conversely those who do not are almost regarded as failures. I have a great belief in another life and also that those who have died are still around in spirit. Both my daughter who is not a practising Catholic and I feel that my husband is still looking after us. He was a particularly caring person and, as she said, he has more power to help others now. The book that has helped me more than any Catholic book is 'Who Dies?' by Stephen Levine. I came across it accidentally about a year after my husband died, and it made a great difference to me. I understand that it is not even on the reading list for those training as CRUSE counsellors and I feel that it should be more widely known.
From a letter to The Natural Death Centre.
Elizabeth Lawlor in Cheshire has written to the Natural Death Centre about her decision to bring her husband home to die. She has no regrets about doing this, despite the lack of support from outside agencies:
Probably because the unit was so new, our experience of the hospice was not good and after ten days I 'kidnapped' Peter - they would not organise transport, so I managed to get him into the car somehow. And home into his own bed, with intrusive cats, kid's music reverberating and cobwebs that threaten to garotte the unwary!
The day before he died, the drains blocked and Dyno-Rod spent an unbelievably noisy afternoon. I think that Peter was unconscious, but if there was even a flicker, he would have loved the chaos.
District nurses did their best but were rather limited. The Macmillan nurse never showed up - she was on holiday over Christmas and New Year. We had a Marie Curie nurse for one night - ie 11.30pm to 5am - which was disastrous. But I did have my wonderful doctor friend, who bullied GPs and made sure that Peter had enough heroin at the end.
She and I were with Peter when he died. Brain death had been at about 7.30 in the morning, I think. I was in bed with him - as I had been throughout - and I got a sense that his soul (or whatever one calls it) had detached itself. And at 11am, he quietly stopped breathing.
Mary and I washed him and laid him out, to the disapproval of the funeral director. It was very real, very loving, and I was able to keep literally in touch with Peter. Then I kept him at home, in our bed, until ten minutes before the funeral. We live near the church and the local Coastal Forces veterans' association put the coffin onto the bier (usually used for transport from the church to the grave) and wheeled him round to the church - no hearse.
Now I am again being perhaps a bit difficult and organising the headstone I want and think Peter would have wanted, with the help of Harriet Frazer's Memorials by Artists [see the Good Funeral Guide chapter]. Mottled black marble wasn't Peter's 'thing'! And it is taking time, and I am working through the grieving process in my own time, my own way, with the erecting of the headstone after a year or more as a symbol of letting go.
Elizabeth Lawlor, Furnival Cottage, Acton, Nantwich, Cheshire CW5 8LD.
Un-means-tested attendance allowances, currently £43-35 per week for day-and-night carers, are available from local Social Security offices. The terminally ill person or carer completes a claim form and obtains a simple medical report (DS1500) from the doctor. These allowances are designed to help terminally ill people to be cared for at home by relatives and friends, but can be spent any way you like. No assessment is required (although one would be required if for a routine attendance allowance).
NHS facilities provided by local authorities include nursing care at home and advice on the care of ill persons at home. Other services vary in different regions and are sometimes provided in conjunction with voluntary bodies. These include domestic help, delivery of meals at home and special laundry services for bed-linen. The Social Security may grant special financial allowances in certain circumstances. In some areas, as already mentioned, night nurses or night attendants may be available.
It is particularly worth exploring the help available from local societies and local voluntary agencies which are experienced in this form of care and may offer technical help and services as well as emotional support.
Individual circumstances vary, and the most crucial area of support in a particular case may be found in a list ranging from the official to the highly informal. Here is a useful checklist:
Occupational therapists (for some equipment loan - or try Red Cross)
Physiotherapists (for walking sticks, frames, etc)
Local support groups and societies
If you do not know how to contact any of the services on the list, ask those you can contact. See also the list of Organisations in our Resources chapter. It is worth writing down a list of your needs, so that you can ask each source for more information (as well as being a good way of getting them in perspective for yourself). The Marie Curie nurse is perhaps the key figure in the natural death movement at the present time. She (or a team of such nurses) can be available to give support for up to seven nights a week. This is an enormous factor in preventing unnecessary hospital admissions. Otherwise relatives can reach the end of their tether and allow the relative to be admitted to hospital because they know no alternative. Most advisors stress that the carer should not become isolated in the task of looking after the dying person. One recommends that 'there be at least two people at home to take turns supporting the dying person'. This may not always be feasible. If necessary, ask the local priest or doctor to mobilise potentially helpful neighbours on your behalf. Care of the dying should be shared with friends and relatives, and with neighbours too. This is good not just for the health and well-being of the caring person, but, as Ruth I. Johns points out, for the health of society as a whole:
I would venture the suggestion that some of the young people who play with violence are only seeking a substitute for a suppressed and unrealised natural need to be involved in the whole process of life. We protect them (and ourselves) from real death, which is, thereby, devastatingly lonely for the dying.
Perhaps we actually need the inclusion of dying in our lives to use up energies which otherwise can pop up as actual or fantasised aggression?
Being part of the dying of a loved relative or friend makes life more livable and death a reality. The more we push it into the back of our minds, the more it will bounce back to haunt us with substitute fantasies and impersonal aggression.
It is only by becoming deeply personally involved with family, friends and neighbours, that we can demonstrate that they mean something to us: thereby we become more at home in ourselves. If we feel 'whole' we can more easily see ourselves as having a niche in the continuing affections of others: beyond our own death. Life certainly becomes more tenable once we accept some personal responsibility for death.
From 'Life Goes On - Self-help philosophy and practice based on ten years' pioneering work with Family First Trust, Nottingham' by Ruth I. Johns, 1982 (£6 from 'Unknown Publisher', PO Box 66, Warwick CV 4XE, 1982).
Of all the people around you, some will want to help 'somehow'. Others will be overwhelmed by the thought of having to 'deal' with it all. Take the statement, 'if there's anything I can do to help, let me know,' at face value, and give them a concrete practical task: walking the dog, making a meal or participating in a round of bridge. These would be manageable favours for them, and it allows them to visit with a specific purpose, rather than just mouthe the empty question 'how are you feeling?'
Within the family, how is the responsiblity shared? Often it is concentrated in one person, even when the decision has been made to share it. The family's help can be organised along similar lines as the ones above. 'Responsibility' can be split into three components: tasks; time spent in the role of chief carer (shifts); and the feeling of responsibility. The latter is automatically shared if the first two are shared successfully.
The needs of children may have to be taken into account:
From 'Dying at Home' by Harriet Copperman.
Generally it is believed that it is healthier for children to be involved. Most authorities advise that throughout any terminal illness and following the death, the children should remain an integral part of the family. Children will regard death as abnormal if they are kept away from the scene, and prevented from contact with their relative either just before or just after death. How to tell a child of an approaching death in the family may be discussed with whatever support persons are available. It may be useful to consider how much worse a sudden unexpected death would be for the children than one for which they had been prepared. There are many good books available for children too - some are on the booklist in the Resources chapter or contact The Compassionate Friends (also in the Resources chapter) for their specialist children's book list (they have a postal lending library too).
Finally, support may be forthcoming from unexpected quarters. It may come from people who step out of their formal roles as 'vicar' or 'GP' or 'neighbour' and become especially supportive individuals. Help for the dying is an emotional business. Not everyone can handle it but some leap into it with enthusiasm, like the four-legged friend in the following example!
'Some of the most impressive emotional healing I've seen is brought about by Inky,' says Rose Griffith, nursing director at the Hospice of Saint John in Lakewood, Colorado. 'Inky brings back life and humour to the terminally ill - whose existence has been dulled by pain, fear and loneliness.'
And Pam Currier, former hospice director, says: 'In many cases Inky is more effective than any two-legged therapist.'
Says hospice spokesman Peter Wellish: 'One of the greatest tragedies is how many patients die without loved ones by their side. For these patients, Inky's presence is a true blessing. Dying patients don't seem to demand much. All the riches and money in the world are no longer important. Quality time is what matters most.
'For those patients who really need her, Inky will spend the entire night. If there are two who need her, Inky intuitively will divide her time between them.'
Getting and training a canine therapist to help the dying was the idea of volunteer Sister Helen Reynolds of the Sisters of Loreto. She found Inky in a humane society shelter. 'I wanted a dog who wouldn't hesitate to jump into people's laps, to spread love instinctively and impartially,' she explains. 'When Inky first leaped into a patient's arms, she jumped into the hearts of all!'
From the National Examiner (USA) October 8, '91. In the UK contact P.A.T. Dog (see under Organisations in the Resources chapter).
You cannot but help feel resentment. But you can help (both yourself and the patient) by recognising that you do feel some resentment and by not pretending that it does not exist. If you understand that you are feeling this way, you can respond to the patient by saying something like, 'This is really tough and I'm getting very bad tempered' (which is a way of describing your feelings) rather than 'You never do anything except lie there and grumble' (which is a way of exhibiting your feelings, and quite likely to lead to an argument).
From 'I Don't Know What To Say' by Dr Robert Buckman.
Carers have every reason to feel angry and resentful if they are left to cope alone. You may feel tied and trapped by caring, and angry at the opportunities you have missed.
Anger may also be a reaction to loss - witnessing the suffering of someone you are close at hand to can make you feel angry at the injustice of it all. Or it may be a reaction to the anger expressed by the person you look after: carers often bear the brunt of that anger and frustration.
From 'Help at Hand - the Home Carer's Survival Guide' by Jane Brotchie.
Jane Brotchie's book, 'Help at Hand - the Home Carer's Survival Guide' is recommended (see the Resources chapter for publishing details). It is a useful and sensitive book which helps carers through the practical and emotional difficulties with clarity, and is in itself a source of moral support.
The emotional ups and downs of the situation can cause conflict. The dying person and their family may be going through necessary stages of denial, or experiencing a lot of anger and confusion. Dying does not give one an obvious target for one's anger, and so it is easy to lash out at those nearest to you instead. It can also feel safer to express overwhelming anger in terms of mundane things: a cup of tea which is too hot, or someone else's forgetfulness.
If you can, as Deborah Duda advises, stop before entering the room, and arrest your own 'down' feelings, just for a moment. Relax, breathe in deeply and centre yourself. Touch a place of receptive stillness within that allows the process to unfold as it must. Focus on that aspect of being that is larger than the sick body and the distressing symptoms.
Perhaps a smile is all that is needed to make the difference: the negative side of things is there already, and doesn't need reinforcing. Balancing sadness with cheerfulness and humour can be tricky - if your words are taken the wrong way, stand by what you know you meant. If you feel that the other person is playing emotional games, sidestep them rather than joining in. The oldest technique of them all, and one to use when really riled, is to breathe deeply and count to ten.
Stress can result from many 'side issues', apart from the obvious, especially if you do not allow yourself 'selfish' feelings. If you can recognise the causes of stress, you are more able to deal with its effects. Jane Brotchie provides the following list of common causes:
having had the decision of caring forced on me rather than having freely chosen it.
being of advanced age or having ill-health myself.
not having the training or information I need to provide care.
competing demands between my role as a carer and other roles in my life.
loss of social contacts and social life.
financial losses or difficulties.
having to carry out tasks I find unpleasant or embarrassing.
changes in the personality of the person I care for.
needing a complete break from caring.
From 'Help at Hand - the Home Carer's Survival Guide' by Jane Brotchie.
Most importantly, try not to become too locked into the roles of 'carer' and 'patient'. Remember that you also exist for each other outside those roles, and that sometimes you can reverse the roles: the carer may need looking after, and the patient may be able to offer support. Coping is not the care-giver's sole responsibility, and an active role for the patient is recommended where possible. It may be worth gently reminding each other of this from time to time: 'Can I speak to John my husband, not John the patient? Just for a minute.'
At times the care-giver will need to escape. Whether this means sharing a worry-free activity with the ill person or getting out of the house to go to the cinema, don't feel guilty about it. Don't feel surprised if at times you resent the other person, just ensure that you get some space and time to yourself.
Ask for what you want or need. You may not get it but there is quite a lot of help around. Conversely, don't accept 'well-meaning' help that makes you feel in any way uncomfortable.
Make sure you (as carer) continue to be as normal as possible. Eat/drink/laugh/ take the dog for a walk.
Tell people how you feel if it helps you - 'I'm fine' is probably not true!
For me, Peter's dying was very intense emotionally. You can't ever do it again, so GO FOR IT!
From a letter by Elizabeth Lawlor to The Natural Death Centre.
The carer may feel extremely lonely, isolated both from the non-care-giving world and from the relative or partner as they knew them. A support group can go some of the way towards filling that gap - who better to talk to than people in your own position? If you need someone to help you find a way through complex problems, you may benefit from seeing a trained counsellor. In the wake of public disasters in recent years, counselling is gradually becoming widely recognised as an important way of coping with life crises. Counselling is completely confidential, and counsellors are trained to help you to clarify and resolve tangled emotions and problems. Contact the British Association for Counselling (see under Organisations in the Resources chapter), or ask your GP or friends who may be able to recommend particular counsellors.
Most carers begin their roles with little experience and inadequate information. Even if we do eventually become near-perfect carers, it is only reasonable to assume that on the way we will have made many mistakes. Over the whole period of time, we will on average have been only half-perfect! What now follows is a practical guide to looking after someone who is dying at home. If you are reading it in advance of any need to apply it you may get a clearer idea of what dying at home involves and whether you can provide for it. If you are caring for someone it will serve as a primer and resource for the whole process, to be supplemented by local nursing help and expertise. If you are in a rushed situation you may find in places that some advice needs to be discarded as impractical for a short period, and you may find that other advice makes all the difference.
Location of the bed may require considerable thought and analysis of the available conditions. Elizabeth Lawlor's sensitive advice is again based upon her own experience of looking after her husband Peter:
Keep everything as 'normal' as possible. If the cat/dog usually sleeps on the bed, let it. And if the bed can stay in its usual place, all the better. It is a way of maintaining a feeling of reality which is comforting when someone is drifting in and out of consciousness. The bed should be accessible on both sides to facilitate moving and turning the patient and the making of the bed, as well as bed-bathing, etc. If possible, a chair by the bed that is easy to transfer into is initially good for morale - the patient can spend the periodic half-hour sitting - which is also useful for the bedmaker. Later on the chair is good for visiting family, etc, and is an accepted piece of furniture in that location.
Other important considerations can be taken into account. If the bedroom is upstairs, the staircase may become an increasingly awkward and frustrating barrier to the rest of the house as the patient becomes less mobile. The experience of negotiating a flight of stairs with little or no strength of one's own is for some an unbearable reminder of their condition, and so the stairs can become a symbol for feelings of isolation and impotence, both for the patient and the carer.
If the patient is moved downstairs then calling for the carer may be less hit-and-miss, and just popping one's head around the door to check may be less tiring. In some cases the same energy expended on coping with stairs could instead be used to get some fresh air outside. This must be balanced with the feasibility of nursing the patient downstairs. Ideally there will be room for a bed and for creating a space which the patient feels is suitably self-contained and private. If this is the living room, the patient may feel invaded by visiting relatives unless there is another room in which they can be greeted and entertained. Are the sleeping arrangements suitable for both partners? Temporary compromises, such as a sofa for the patient, can be quite practical, as long as change will not upset everyone's routine or sense of place. Washing and toilet requirements are also very important.
Ultimately some form of compromise will have to be made. It is important for the carer not to feel guilty that arrangements are not perfect (few people choose a home with all this in mind), just as it is important to make sure that the carer's needs are taken into account. It is easier to be selfless when you have had a few hours' sleep.
Often the sense of what 'feels right' is most important. The care-giver may find unbearable the idea of eventually having to sleep alone in the bed in which their partner spent their last few weeks. Alternatively they may feel that any other way is wrong. The patient may have strong opinions or an obvious need one way or the other: whether to keep everything as normal as possible, or deliberately to create a 'special environment' in which the patient is 'spoiled rotten'. As conditions change a new set-up may be required.
Having said all this, what will very probably happen is that events take over and these decisions are made by circumstance! Wherever the bed is, a bedside table is useful for bottles, tissues, flowers and a constant supply of water and juices.
Other practical equipment needed might include the following, which is an extended list based upon suggestions from 'Who Dies?' by Stephen Levine:
A rope and a bell by the bed so the patient feels in contact and can summon help; a stand-up bed tray if appropriate; two hot water bottles, one for the feet and one for easing the pain; an ice bucket; a thermos; possibly a hot plate in the room.
A bedpan, slipper bedpan or urinal bottle may be essential, as well as incontinence pads and plastic sheets. Plastic bedpans are less cold to the touch than metal. A plastic washing-up bowl for bed baths may also be useful.
TV, video recorder, radio, walkman according to requirements. With telephone arrangements, bear in mind both the needs of both patient and carer for privacy.
Extra nightgowns or pyjamas that are easy to put on and take off, socks and non-skid slippers.
Paper towels and tissues, cotton towels, drinking straws that bend, favourite picures and photos, a potted plant or bunches of flowers! Bring nature from outdoors indoors as much as possible.
Consult with your nurse, doctor, or your local physiotherapist to find out about the provision of walking sticks, walking frames and wheelchairs. These can sometimes be borrowed from the Red Cross (see the Resources chapter). Some local councils can provide handrails for toilets, bathrooms and stairs, as well as access ramps for wheelchairs - contact the Social Services department. A shower seat and non-slip bath mats help with bathing. A step-up stool is useful for relatively mobile people.
From 'Who Dies?' by Stephen Levine.
Special bedding can give extra comfort and prevent bedsores. Sheepskins and pillows are helpful in this respect.
A wedge of foam under the head of the mattress gives a firmer base than pillows for a half-upright position. The triangular, orthopaedic pillows are also good.
From a letter by Elizabeth Lawlor to The Natural Death Centre.
Special mattresses are available depending on patient requirement. A large-cell ripple mattress offers protection to pressure areas in cases of severe need. However, this is a highly specialised piece of equipment requiring advice and consultation. A bed cradle, V-shaped pillow, sponge or air rings for sitting on, sheepskin squares for sitting or lying on, and sheepskin pads or booties for the feet provide additional comfort. Fresh clean sheets are important, perhaps helped by a rubberised flannel undersheet with a duvet as a comfortable underblanket. You should consult with your nurses or local hospital as to which combination of equipment is best, as well as for details of how to get hold of them (they may themselves be able to provide you with some items). Hospital suppliers are listed in the Yellow pages, although they normally want large orders. There are specialist chemists, such as John Bell & Croyden (see the Resources chapter) - their sheepskin rug, for instance, costs £35. And the Red Cross, as mentioned, can lend equipment (again see the Resources chapter).
A supply of soft pillows and towels is useful for extra comfort - between or under the knees, behind the back, underneath the patient's book, or at the foot of the bed to lift the top sheet - all according to need. Experts emphasise the need for prevention in dealing with bedsores - see below.
But in case you find yourself on your own, here are a few basic general guidelines:
Make sure that the patient understands what you are doing;
Allow the patient as much independent movement as possible;
Make sure that you have a firm footing, and remove any bedclothes that will get in the way;
Keep the person warm; cover her or him with a towel or dressing gown if necessary;
Take the manoeuvre one step at a time, agreeing or explaining each step before you carry it out together;
Take tricky steps, where you have to co-ordinate moving together, on the count of three;
If you find that you are 'lugging' the person, or that she or he is experiencing discomfort, you may need to break the move down into simpler steps;
If you are lifting the person, make sure that your back is straight and that your knees are bent;
Don't overdo it! You may just have to wait until you can find someone to help you.
Frequent changes of position are important for comfort, to avoid bedsores, and to facilitate washing. These steps are used to turn someone onto their side from their back. The basic idea is that you turn first the legs, then the arms and shoulders, and then the back.
Stand at the side of the bed towards which the person wants to turn;
Remove covers and excess pillows;
Take hold of the person's far leg (at the knee and ankle), and cross it over the other leg towards you;
Take hold of the person's far arm (at the elbow and wrist), and cross it over their chest towards you;
Place one hand on the person's hips and the other on their uppermost shoulder, and gently pull their torso towards you.
These steps are used to help someone sit upright from lying down. The basic idea is that you lift the person, and then help them move caterpillar-style back along the bed.
Stand at either side of the bed and remove the covers if necessary. Take your shoes off;
Help the person sit up: face the person and hook your near arm under theirs, asking them to hold your shoulder and lift themselves up, pushing against the bed with their free arm;
Still supporting the person, remove the pillows with your free hand;
Still supporting the person, get onto the bed and kneel behind them;
Hold the person around the waist like this: slide your arms under their arms, ask them to fold their arms across their chest, and take hold of their wrists;
Ask the person to bring up their knees, and to push backwards with their feet at the same time as you lift and pull them backwards;
Still supporting the person, replace the pillows.
These steps are used to help someone move to a chair from lying down in bed. The basic idea is that you help the person to sit on the edge of the bed, to get up and to shuffle round to a chair behind you.
Position the chair or commode a few feet from the side of the bed;
Remove the covers and stand by the bed in front of the chair;
Help the person to turn towards you (see 'Turning in bed', above);
Put one arm under the person's lower knee, and the other under the lower ankle. Lift the person's legs and gently pull them towards you, over the side of the bed;
Put one arm under the person's shoulders, and the other hand on their hips;
Ask the person to push up with their lower arm, at the same time as you lift them up by pulling their shoulders and pressing lightly down on the hips. Have a breather.
Facing the person, place your feet firmly beside the other person's so that you 'sandwich' their feet;
Bend your knees and keep your back straight;
Ask the person to put their arms around your shoulders, as you put your arms around their waist;
Lift the person to their feet by straightening your knees;
Stay holding each other and shuffle round slowly to the chair;
Support the person as they sit down. If using a commode, you may have to help the person lift their nightdress/nightshirt or lower their pyjamas as they sit.
The basic idea here is that you unmake and make half of the bed at a time.
Remove the covers. Leave one pillow;
Help the person to roll onto one side, facing away from the centre of the bed (see 'Turning in bed' above);
Untuck the free side of the sheet, and roll it up as far as you can towards the person;
Tuck in the fresh sheet on the same side, and fold up the rest close to the dirty sheet;
Gently help the person roll over the rolled sheet and the folded part of the fresh sheet onto the clean side of the bed;
Remove the dirty sheet; tuck in the rest of the clean sheet;
Change the pillowcases and help the person roll back to the middle of the bed;
Put on a fresh top sheet and replace the covers.
If many changes of sheets are required, a single sheet lengthwise on a double bed can be changed more easily than a double sheet.
From a letter by Elizabeth Lawlor to The Natural Death Centre.
It will probably be necessary to find alternatives to 'three meals a day'. The person is likely to find their appetite waning, and may be too weak to eat more than a small amount at a time anyway. It is important to consult your nurse or doctor about nutrition, but the basic idea is this: offer small and more frequent helpings, and try to make food available to fit the person's sporadic hunger. Liquid food is easier and less tiring to take in: try soups, milk shakes (with a beaten egg for extra nourishment), yoghourt, and so on. Available from chemists, or with a prescription, are a range of nourishing drinks (some very sickly and sweet!), such as Complan, Build Up, Fortison and Ensure (they do a savoury version of this), which are acceptable if the person is only able to take in small amounts of food, although some are constipating if no bran-type roughage is added. Your doctor can prescribe food supplements, which are taste-free powders that can be sprinkled on food.
Help the person to sit up as much as possible before they eat and immediately after, if possible in a chair. Not being completely flat can help prevent nausea. If they feel dizzy or weak from the movement, they may need a calm moment to recover before eating. If the person feels nauseous, try smaller snacks, a boiled sweet, mineral water or a fizzy soft drink, or dry toast in the morning, or try waiting to give liquids for an hour or two after meals and avoid fried or fatty foods. If the nausea is preventing them from eating, contact your GP for advice.
If the decision is made to use an IV, the doctor or nurse will be able to explain how it works and what to check for. It is worth clearing with them any worries you may have about the operation of the IV. A nurse will either stay with the patient, or come to check the equipment at least several times a day. IVs are not themselves dangerous, but the needle can be painful and can cause inflammation.
The alternative is to accept that death is imminent, and to concentrate upon making the dying person's remaining time more comfortable and dignified, rather than longer. Someone who does not take in enough liquid becomes dehydrated. The effect of dehydration is often a sense of mild euphoria, accompanied by thirst and a dry mouth. This can be alleviated by applying a wet cloth to the lips, filling a drinking straw with water to drip into the mouth, or giving the person crushed ice. Ice can be made with juices or cordials and crushed; or the patient may suck chewing gum or boiled sweets or tinned or fresh pineapple chunks (this last contains an enzyme that makes it a wonderful mouth freshener); or a chemist can prepare 'artificial saliva' concentrate (Luborant or Glandosane in various flavours), which can be diluted and taken in small and frequent doses. Swallowing is easier in general with a slightly raised head.
Regular washing is best not skimped, as not washing soon leads to discomfort, sores and infection. It is well worth establishing a routine: ideally a full wash once a day, with either another full wash in the day, or a hands-and-face wash when needed. Where possible, help the person with a bath or shower (a shower seat makes this easier). Be sensitive as to whether they would enjoy being 'pampered', or whether it is best to allow them to wash themselves as much as possible. The best way to cope with getting a frail patient out of the bath is to get in yourself, stand at her head, put your arms under hers, ask her to bend her knees and then lift her up and forward.
If mobility makes going to the bathroom difficult, then help the person with a bed-bath. Wash all areas of the body in turn: help the person move into the most appropriate position each time, and keep the rest of the body warmly covered. Pay special attention to 'hidden' areas: the back, underarms, buttocks, groin and between the legs, feet, under the breasts and/or folds of skin. As you wash, check for signs of redness or sores. Change the water in the bowl several times during the wash. Make sure that the soap is rinsed off thoroughly and, especially important, that the skin is dried completely. If the skin is too dry in patches, apply an effective moisturising cream such as Atrixo.
It is very important to maintain a regimen of oral hygiene, as this can be a source of considerable discomfort. If normal teeth brushing, twice a day, is difficult, then a soft toothbrush or cotton wool buds can be used. Failing that, a mouth rinse from the chemist can be used. After eating, a pinch of bicarbonate of soda in a glass of water used as a mouth rinse keeps the mouth clean and fresh. False teeth should be soaked daily in denture-cleansing solution, and brushed with a soft toothbrush. There may come a point when false teeth no longer fit - in which case they should not be used, as they may cause ulcers.
It is important to examine the mouth periodically for ulcers and to watch for the symptoms of thrush. Thrush is a very common fungal infection which shows up as very sore white patches on the tongue, gum and inside the cheek. You should report thrush to your GP.
It is possible to wash hair in bed. You can buy Dry Shampoo powder (Aero) and liquid No-rinse Shampoo (La Professionelle) from your chemist and use in the same way as normal shampoo, but without water: apply sparingly and then towel off. For wet washing, your district nurse may be able to supply you with a special bowl with 'splash' attachment. You can use an ordinary plastic bowl: support the person's neck with a rolled towel, and lay plastic sheets or plastic sheeting (a bin liner will do) underneath. Or have the person hang her head over the foot of the bed.
Trim finger and toe nails regularily. Men may of course need help with shaving.
This takes the form of strict attention to regular turning at four-hourly intervals, or two-hourly if necessary and possible. A certain amount of hectoring the patient about changing his position is justified because it can prevent so many future problems. Following an explanation, these problems will usually be appreciated by the patient.
From 'Dying at Home' by Harriet Copperman.
Careful positioning and avoiding pressure also help. Where two parts of the body touch, such as the thighs or the knees, prolonged pressure leads to impaired circulation which leads to skin breakdown which leads to bedsores. It is important to protect the bones, particularly if the person is very thin. See the 'Beds and bedding' section above. This can also be done with thick cushions, towels and pillows, when seated. The most common 'pressure points', areas prone to sores, are: the back of the head, shoulder blades, elbows, spine and coccyx (tailbone), hips and heels. These should be checked for signs of redness daily. An obvious time to do this is during washing.
Special Dressings are available to prevent bedsores and skin-toughening substances can be used. If the skin does redden and break down, a doctor or nurse should be consulted for suggestions. Massage may be used as a regular method of keeping the blood circulating in sensitive areas, as well as to enhance the patient's well-being generally (see below).
Infected wounds can be very smelly. Cancerlink, in their booklet 'Caring for the Very Sick Person At Home', say that the doctor may be able to prescribe special tablets to reduce the smell and they advise that 'concentrated lemon spirit, from the chemists, mixed with a little water' will mask most other smells. Or use joss sticks, scented candles or spray deodorisers; and give the patient a handkerchief dabbed with their favourite scent.
A blockage in the bowels can cause discomfort and pain and eventually may be life threatening. Constipation is generally caused by inactivity, insufficient fibre in the diet or as a side-effect with certain pain-relieving drugs. It can usually be eased with a combination of the following dietary measures: bran and other fibre foods, fresh vegetables, prunes and fruit in general, live yoghourt, coffee, herbal tea and plenty of fluid. Cut out white bread and rice, cheese and meat if possible. Enquire at health food shops for natural and homeopathic remedies.
The occasional soiling of bedclothes may be inevitable, is unpleasant, and can be alarming for the patient. It is obviously important to change the sheets and help the person wash immediately; it is also important to be sensitive to what reassurance and affection she or he may need. Ask your district nurse about obtaining disposable incontinence pads from the Incontinence Laundry Service in your area; or the nurse may recommend a catheter (a hollow, flexible tube that drains urine from the bladder into a bag; and that works best if the patient is remains unconstipated and drinks plenty of fluids).
Addiction is not a real concern with the dying, but why interfere more with delicate body balances? Some possibilities are to take, before bedtime: calcium tablets (two grams), camomile tea, valerian with B-vitamin complex, a warm glass of milk, or tryptophan. Tryptophan is an amino acid in meat, milk and cheese. Turkey is high in tryptophan. Try a warm bath, hot foot bath, a back rub or foot massage, or a guided meditation.
Stroke the hair and scalp and encourage the person to let all thoughts float away and to let the head feel spacious and empty, clouds drifting in and out. When I can't sleep I use the Bach Flower Remedy, Sweet Chestnut. Avoid coffee, black tea and all dark coloured colas before bedtime. They contain eye-opening caffeine. It's also OK not to go to sleep even when someone else thinks it's time. Encourage the person to read, write, watch TV, listen to soothing music or think for a while. If not sleeping continues to trouble the patient, ask a doctor about sleeping medications.
Reprinted with permission from 'Coming Home: A Guide to Dying at Home with Dignity', c 1987 Deborah Duda, Aurora Press, PO Box 573, Santa Fe, NM 87504, USA.
Some may become mildly anxious on reaching such a significant point in their lives. Others have always been so anxious with any new event or change of circumstance, however minor, that the advance of debilitating illness and the approach of death, fills them with a terror which is sad to behold. The main treatment is listening, and honest discussion with the patient of the many causes of his anxiety.
Depression, like anxiety, usually involves taking the time to listen to the patient or encouraging him to talk. He may understandably be depressed for many reasons, but if this is the result of boredom or inactivity it should be possible to find a remedy.
From 'Dying at Home' by Harriet Copperman.
Consult your doctor, of course, if you feel medication for anxiety or depression may be called for.
The person may listen to the wide variety of music and guided meditation tapes available that might encourage investigation and letting go [see under Tapes in the Resources chapter]. Speaking of the process of letting go at two in the afternoon when the patient feels relatively well and is not particularly open to investigating dying may not seem appropriate or even be well received. But a tape about working with pain or preparing for the moment of death, left at the bedside, may be appreciatively absorbed when the patient feels it is the right moment. Perhaps at four in the morning when sleep has become impossible and the pain in the body has intensified, that individual may then feel prepared, open to hearing what earlier in the day may have seemed beside the point or frightening.
From 'Who Dies?' by Stephen Levine.
Richard Boerstler advocates a meditative Tibetan-inspired breathing technique. The carer copies the patient's breathing pattern, making the sound 'Ah' on the outbreath, strung out as 'Aaaaaaaaaaahhhhhhhh'. The patient may like to make the same sound at least for the first ten breaths or so, or may prefer just to listen. This simplest of exercises can greatly enhance the patient's sense of physical comfort and well-being. (See under Videos in the Resources chapter - also for Joanna Gilpin's details; she runs seminars in the UK on Boerstler's method.)
This massage offers an easy way to loving physical contact. It gives the patient a relaxing time and I suspect that many will find it a good time to talk: relaxed, loved, but not always looked at. (Some people, as a parallel example, will talk on a car journey where they have company but are not looked at.) It is easy to do once explained: you use your finger tips to move the scalp over the skull. Ask the person you massage to tell you what they like and don't like, and if you are doing it too hard or soft. They should sit or lie comfortably and not 'help' by holding their head in a 'good' position - they should just relax. You move their head gently if necessary. (Try also gentle face massage, as well as neck and shoulders, all places where tension accumulates.) Feedback is the key to getting it right.
I have seen people sitting next to a dying person having run out of things to do, say or offer. I felt that this idea might mean a lot to many people.
From a letter by Margaret Ryder to The Natural Death Centre.
Having people going about ordinary activities in the same room is another way of keeping close. While you read a book, eat dinner or watch television, you can just be with your relative. Make sure that everyone in the family is aware of when it would be a good idea to leave the person in privacy.
Making contact can involve simple but valuable actions:
Even when someone is apparently subconscious, do keep talking to them. On a very deep level it is reassuring, and apparently hearing is the last sense to go. Touch and smell are also important.
When my husband was in hospital I started putting a notepad by his bed. Every time I visited, before I left I would write down when I would be back, where I was going, etc - and that I had been.Once home, I kept it up so he had a memory prompt. And when he died, I had a record of the last weeks.
From a letter by Elizabeth Lawlor to The Natural Death Centre.
Breathing and visualisation techniques can be very useful in working with pain. If there's delay in getting a pain reliever, you might try them. In some cases, they may preclude your needing drugs at all. Breathing can be as useful for dying as it is for birthing. When we feel pain, we tense up and tend to stop breathing fully. Our cells don't get the oxygen they need to clean out toxins and keep the nerve signals straight, and the pain gets worse.
One of the first things to do for pain is to keep breathing. Unless someone has had previous experience with breathing consciously, he or she may focus on the pain and fear and forget to breathe. As the helper, encourage the person to breathe deeply, to breathe into the area that hurts, and then down into the toes. Ask the person to relax, to 'soften' around the area that hurts, and open him or herself to the sensation of pain. As the person surrenders, gives up resistance, more oxygen enters the area and the pain may lessen. The body senses that its message is received and relaxes. Keep repeating, 'soften, relax, open'.
Paying attention to pain helps relieve it if we don't judge it as bad! It just is.
I find it helpful to combine breathing techniques with hot water bottles and foot massages. While the person is breathing into the area that hurts, partially fill two hot water bottles with hot, not boiling, water. Cover the bottles with a towel so you don't burn the person's skin and place them under the feet and on the area that hurts. If you don't have hot water bottles, put the person's feet into a bucket of medium-hot tap water. Put a hot washcloth on the forehead. Together these seem to keep energy moving through the body so pain is lessened or eliminated. Some people prefer ice packs and cold water. Either is OK. (If the pain is severe and you're unprepared, call a doctor.) If it feels right to you, add a foot massage to further relax the person and to stimulate increased circulation.
Breathing and foot massage are useful techniques for calming anyone in a stressful situation. You might want to take time for them yourself.
I sometimes hear talk in New Age circles that taking drugs for pain is somehow not spiritual. That's baloney. Again, physical pain is a message that something's not working right in the body. The dying get the message loud and clear only this time there's nothing they can do about it. The body can't be fixed. Taking drugs is useful to free us to experience dying on other levels and not to fixate on one level - the body. If we're in pain, the body has our undivided attention. And if dying teaches us anything, it teaches us that we're more than just a body.
If, as many New Age people believe, our essential identity is God, why torture God's body - or anyone else's - by not taking pain medication? That's cruelty. If we truly believe that everything is equally sacred, morphine is just as sacred as the herb from which it's derived.
Reprinted with permission from 'Coming Home: A Guide to Dying at Home with Dignity', c 1987 Deborah Duda, Aurora Press, PO Box 573, Santa Fe, NM 87504, USA.
It is advisable to keep your GP informed about the person's changing pain relief needs. The Beecham Manual of Family Practice advises doctors that many patients 'are given too little analgesia too late'. Patients dying at home can often have better pain relief than in hospitals, where doctors are loathe to use drugs, especially the opiates, appropriately - mainly through ignorance, or fear of legal consequences. In her letter to The Natural Death Centre Elizabeth Lawlor says that she kept a chart of the medication which her husband received, 'partly to see if there was a pattern of when it was most needed, and partly for the doctor to see what was going on'. In this way it may be possible both to pre-empt pain and to establish clear communication about the person's needs. Pain is made worse by fear, loneliness and anticipation of pain to come.
Here is a pain meditation, for the patient to read or that can be read aloud very slowly by a friend. You could record it on a tape - leave up to ten second gaps between each direction, the reason being that the body responds at a much slower rate than the mind. This is a considerably reduced version - see Stephen Levine's book for the text in full and for other equally helpful meditations. (See also under Videos and Tapes in the final chapter.)
Bring your attention to the area of sensation that has been uncomfortable.
Let your attention come wholly to that area. Let the awareness be present, moment to moment, to receive the sensations generated there.
Allow the discomfort to be felt.
Moment to moment new sensations seem to arise.
Does the flesh cramp against the pain? Feel how the body tends to grasp it in a fist, tries to close it off.
Begin to allow the body to open all around that sensation.
Feel the tension and resistance that comes to wall off the sensation.
Don't push away the pain. Just let it be there. Feel how the body tries to isolate it. Tries to close it off. Picture that fist. Feel how the body is clenched in resistance.
Feel how the body holds each new sensation.
Begin gradually to open that closedness around sensation. The least resistance can be so painful. Open. Soften. All around the sensation. Allow the fist, moment to moment, to open. To give space to the sensation.
Let go of the pain. Why hold on a moment longer?
Like grasping a burning ember, the flesh of the closed fist is seared in its holding. Open. Soften all around the sensation. Let the fist of resistance begin to loosen. To open.
The palm of that fist softening. The fingers beginning to loosen their grip. Opening. All around the sensation.
The fist loosening. Gradually opening. Moment to moment, letting go of the pain. Release the fear that surrounds it.
Notice any fear that has accumulated around the pain. Allow the fear to melt. Let tension dissolve, so that the sensations can softly radiate out as they will. Don't try to capture the pain. Let it float free. No longer held in the grasp of resistance. Softening. Opening all around the sensation.
The fist opening. The fingers, one by one, loosening their grip.
The sensation no longer encapsulated in resistance. Opening.
Let the pain soften. Let the pain be. Let go of the resistance that tries to smother the experience. Allow each sensation to come fully into consciousness. No holding. No pushing away. The pain beginning to float free in the body.
All grasping relinquished. Just awareness and sensation meeting moment to moment. Received gently by the softening flesh.
The fist opened into a soft, spacious palm. The fingers loose. The fist dissolved back into the soft, open flesh. No tension. No holding.
Let the body be soft and open. Let the sensation float free. Easy. Gently.
Softening, opening all around the pain.
Just sensation. Floating free in the soft, open body.
From 'Who Dies?' by Stephen Levine.
It may become necessary to relieve pain by means of intravenous or intramuscular injections. The latter can be given by the carer once instructed by a doctor or nurse. Better still might be for your medical helper to obtain a subcutaneous syringe driver - this has revolutionised pain control at home. It provides a continuous infusion of painkiller, so that there is no need for injections, and is thus very practical for home use.
He immediately nestled in my arms and began to breathe regularly, and we, as a team, breathed together. The chants seemed to bring him balance, dissolving fears, and compensating for those issues still full of sting. When his heart ceased to beat, I stayed still for long moments. Almost twenty years later, the silence that replaced his struggle and that was present in his room has continued to penetrate the core of my life.
People ask if a midwife knows fear or sorrow: none of that exists if you are with the dying person. It's their time, not yours. Any burden or sorrow or wounds of your own disappear.
From 'The Luminous Wound' by Therese Schroeder-Sheker. The Chalice of Repose is at 554 West Broadway, Missoula, USA, (tel 0101 406 0001 ext 2810).
He hired them out of his own salary four years ago to help patients who had reached the end of the NHS road.
Above Dr McGavin's surgery, Alan Baker and Ellen Bishop, both in their fifties, are exploring the use of colour on a wet canvas under the guidance of an art therapist, Hazel Adams. The walls are decorated with the artwork of other patients and the quiet concentration of Alan and Ellen produces a tranquil atmosphere.
Alan was diagnosed as having Parkinson's Disease seven years ago. He says he is no artist, but the weekly sessions have a deeply relaxing effect. He also had nine months' intensive eurhythmics - rhythmic movement to music - which helped him recover balance and flexibility lost through the disease.
Dr McGavin believes much of the success of the therapies lies in the cooperation of the patient. 'The problem in general practice occurs when you just see the body as a complex machine, and call in the doctor to fix the part that goes wrong,' he said. This merely encourages the patient to wait passively for the doctor to make him or her better. 'I ask the patients if they would like to have a go.'
Therapist John Logan treats patients in the last stages of cancer. He said: 'Cancer patients suffer tremendous fear and anxiety. The music and movement helps that, putting something healthy and life-giving in the face of the illness.'
From The Independent (Feb. 12th 1988).
Hospice Arts is an organisation which promotes the arts as 'an essential component of the hospice philosophy of ensuring that people really experience as much as life can offer right up to the very moment they die':
For some hospice patients, it may be a case of reviving a long-ignored skill or enthusiasm which had been forced into the background by the business of day-to-day living. For others, the creative arts may be a new experience, yet they too can enjoy making their own works of art, discovering hidden talents and abilities.
From the Hospice Information Service Bulletin (May '90 - for contact details see the Resources chapter).
Yvonne Malik suggests the creation of Memory Box personal museums by the elderly or the terminally ill, and has made a beautiful prototype of her own, shoe-box size. She writes:
The arrangements could be displayed inexpensively in, for instance, sewing boxes, tool boxes, circular tea trays or shallow suitcases.
Memory Boxes leave something precious behind for our relatives and children. They are the opportunity to communicate in non-verbal ways that 'I was here; I did this; I learnt that', or personal letters can be placed there.
See final chapter for Malik's address, under Organisations and Individuals.
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