Caring for Carers
Written by Verity Smith.
You can download the PDF of this resource here.
A carer is someone who looks after someone else who has an illness, frailty or disability.
How do we recognize and care for the many carers in our church? How do we equip our church to genuinely do God’s will in this? (And the carers are there in our church! Did you know that in the UK one person in ten is now a carer?- especially because many residential homes for older people are closing?)
Who are These Carers?
The carer themselves may be of any age and any religious or ethnic background; they may be a relative, neighbour, or friend. The care they give may be physical, emotional, intellectual or spiritual. There may be physical and also mental needs to be cared for.
Often there is a problem that the ‘carer’ does not see themselves as such – rather they see themselves just as the ‘wife’, or ‘parent’, or ‘friend’. However, once they accept the extra ‘label’ of ‘carer’, this may be a helpful gateway to much-needed help and support, social, emotional, financial and practical. Their often unending, demanding and invisible caring can then be recognised, and a discussion started over what support they, the carer, need themselves. Helping this recognition is one very important way that pastors and other church leaders can start to help.
What is the Extent of This Unpaid Caring in the UK?
There are now at least 6,000,000 carers in UK. In the 2001 census 5.2 million people stated they were carers, but it would in reality have been an even larger figure. So at least one in ten of the UK population is a carer; it is a role many people will have at some stage in their life. There are probably 50–60 ‘carers’ in my own church. Many of these may not be recognised as being part of this vast, unseen group of workers.
The usual age of carers is 40–60; but some are much older, looking after their husbands or wives, or after very aged parents, or disabled children – all people with some kind of physical or mental disability. And the other group of carers, often forgotten, are children. As they look after their parent(s) with physical or emotional problems, these children also have to attend school and try to do their homework and pass exams – not much time for playing or having friends!
The changing social scene in UK has led to there being many more carers in our society. Social mobility means that families move for work and generations split up, while broken families lead to weaker (or non-existent) family ties for caring. The rapidly aging population, coupled with the decreasing birth rate, means there are more very old people, and fewer children to care for them – and many women, the traditional carers, now work. For many reasons, the ‘sense of community’ which was more common in the past and in rural areas, is now harder to find – despite the over-hopeful talk of ‘care in the community’. Meanwhile, residential forms of caring are now reducing. Many homes for older people are closing, due to complex government regulations, difficulty in getting staff, the high cost of caring for dependent people, and uncertainty about payment of bills as people live so long. Hospitals now work on the principle of the ‘revolving door’, where the patient is diagnosed, given treatment and advice, and sent back home as soon as possible - often too soon, given the lack of community nurses. Residential schools for children with a severe disability are getting scarcer, and government policy is to integrate children with special needs into mainstream schools whenever possible, often with insufficient backup for the overstretched staff. Other increasing problems include the need for long-term care created by diseases such as HIV/AIDS, and drug and alcohol abuse.
The Costs of Being a Carer
Much caring is given very willingly and lovingly, whether the end will obviously be soon or, maybe, the caring role might stretch on for years. In some situations what starts as a crisis develops into a longterm caring situation. There may be different emotions in looking after a baby or young child as against caring for an older person or one with a terminal illness, who does not have long to live on this earth.
The emotional costs to the carer can, in the worst cases, include: worsening of family relationships (sometimes leading to a breakdown); loss of personal identity and confidence by the carer; anger and resentment at their situation; feelings of exploitation and lack of recognition; deep boredom; or maybe feeling inadequate and guilty. Some physical tasks dealing with the body of the patient may be very unpleasant. If the carer has had to give up work which they have enjoyed they may feel trapped and jealous, that their personal hopes for their future have been lost.
The carer may fear the future for themselves, or for the person they look after; older parents of children who need care often worry about this. Almost certainly the carer will feel tired, sometimes to the point of exhaustion. They may be helped by a sense of family and Christian duty – but still sometimes they may feel ‘Why me?’ – or again, ‘I am not doing this work with enough patience’.
The social costs could well include a reducing social circle of friends as it is difficult to leave their charge (the person they care for), or maybe even to invite friends round – or, they are just too tired, and home life has become unpredictable because one cannot foretell when the next emergency will happen. They appreciate reliable friends who understand the situation, are aware of timing problems in caring (routines, medical appointments, emergencies), and who can be flexible when plans have to change. But friends who might happily volunteer to look after a lovely little baby for an evening may be less willing to ‘sit’ with a demanding, unpredictable or ‘difficult’ person, so as to give the carer a much needed break. And friends fear getting too involved – especially if it looks like a longterm situation which could go on for many years.
Some carers have to give up work (or change to unsatisfying, boring and badly paid work) because of their caring duties; with the loss of self-image, work-friends, and the chances for career promotion. And with the loss of the job comes financial problems. It is only some carers who are fortunate in having flexible work and understanding employers, and who maybe can work part time until they no longer have to be a carer.
Financial costs may be due to income that is no longer coming into the family, or to the costs of paying for medical items for the caring situation. Equipment, transport, buying in help, and medical expenses can all become costly. In the UK there is more government funding available for carers, but often carers do not know it is available, are put off by how complicated it is to apply for the benefit or grant, or may feel angry that they have been turned down, possibly unfairly. Fortunately in many towns there are now voluntary agencies giving expert and friendly help in applying for benefits. (See below for details of the Princess Royal Trust for Carers.)
The physical costs are more associated with heavy nursing, or maybe with caring for an emotionally damaged person who can become aggressive. Over many months, a busy caring lifestyle leaves little time for the relaxation or exercise which would help keep the carer healthy.
The Rewards to Carers
It would be quite wrong to paint a totally dark picture. For many carers - maybe for all sometimes - it can be a ‘labour of love’. There is a special relationship between them and their charge, of love, respect, companionship; a feeling of the carer being needed, and that this caring is valued by the person and also by those friends outside who do understand and respect the carer.
At its best, old relationship problems may be overcome, and good memories from the past shared in a loving and creative way. New forms of communication may be built up: the sense of touch, shared pleasures and memories, and healing laughter.
How can Churches Support Carers?
There is often a real need for the church to be more aware of the needs of carers – and, indeed, simply to know who the many carers in our own church are, if they are to be prepared to share details of their situation with others. Several Different levels of support are needed.
Some help must come from the church generally, within the church structure: recognition of specific carers as valued individuals within the church, with particular and often individual and changing needs. This includes: awareness training for leaders of church groups; deliberate prayer; updating carers on information and support groups (if any) for them in the local community; and having this information available to church staff and leaders.
Systems of practical help might include transport, although this may work better at a more individual level between friends of the carer. Guidance from the church pastoral committee would be important here, if one exists.
Homegroups are an obvious and flexible source of awareness of carers’ needs, and support for them in friendship, prayer and understanding. This will need to be available both in the time of caring and also when the caring ends leaving a feeling of loss and sadness. It may be a case of the homegroup being creative in maintaining contact (including by phone) with a member who is a carer and can only come occasionally. There may be some ‘treats’ that can be organised, to fit in with the carer’s lifestyle. More major, but greatly appreciated, help may be a homegroup collective project to tidy a garden or help decorate a room. Certainly the fun, togetherness and feeling of achievement of such a project will benefit the homegroup just as much as it does the carer. Church leaders need to alert their homegroups to these possibilities.
Other church groups through which deliberate support for carers may need to be given include sunday school (especially for young carers) and the young people’s groups - if, indeed, the younger carers have the freedom and time to attend them. A sociable coffee time after morning service is a good opportunity to catch up with such friends.
Support from individual people is something we can all be encouraged to think about offering. Often church people are very busy – but support for carers need not always be time consuming. Regular support may be ideal for the carer, but is not always practical for people with other work and family commitments. More realistic can be the following:
· Passing on useful information
· Offering the occasional lift
· Being available for emergencies
· Arranging something special for the person they care for to look forward to (we all need that!)
· Teaching the carer a useful new skill like internet shopping; offering driving practice; helping with form filling
· Offering to collect something from town, or to pick up necessary medicines
· Doing a practical handiman job
· Lending a book or DVD
· Moral support may be needed – accompanying the carer to a difficult visit to an organisation for advice, or to claim a financial benefit
· A home visit (at an appropriate time) for a cup of tea; listening, and praying together
· Adapting hospitality so it is available to both the carer and the person they care for
· Recognising the individuality of the carer and the one they care for can be heartwarming. This could mean giving not just any flower, but their favourite one; remembering their special colour or author or food or hobby. All this makes a carer feel special and cherished.
· Helping the carer to maintain an interest of their own; this could be a valued offering.
· It is very important to ask the carer “How are you”, and not always “How is your mother” (or whoever) – so that they realise they are important also!
Sources of Support and Information for Carers in the UK (and for their pastors!)
The Princess Royal Trust for Carers http://www.carers.org/
This Trust offers support by phone, by a drop-in service at their offices (at certain times), and if necessary by home visits. The staff are all trained and there is a calm, confidential and welcoming atmosphere. They have a vast database, including on specific medical conditions, respite and residential homes, and Age Concern Factsheets (which are excellent), and they will keep members informed on topics of interest to them. They raise awareness amongst employers of carers’ needs, help with advocacy with social services (and will attend case conferences with the carer), and give detailed advice on claiming financial benefits. They often have a trained counsellor locally and local support groups; they produce a newsletter for members and run training and recreational events for carers.
Holidays for Families in Crisis/Hardship/Bereavement http://www.jonascentre.org/
The Jonas Centre has twelve Scandinavian-styled log cabins and seeks to partner with the church in its outreach to families in need of a holiday. The Jonas Trust accepts applications for subsidised holidays (Mondays to Fridays and occasional weekends) at its centre in Wensleydale. Churches, groups and organisations who know of families in crisis or facing hardship, or who are anticipating or experiencing bereavement or needing a break from caring roles, should send a letter of nomination outlining the circumstances to The Jonas Centre, Redmire, Leyburn, North Yorkshire, telephone 01969 624900.
Support for Young Carers email@example.com
This group of young people who take on major caring responsibilities is now being recognised (see also www.youngcarers.net). Social Services are offering more support to young carers, and Barnardos runs a Young Carers Project (www.barnardos.org.uk). Schoolteachers have a special responsibility here.
Carers’ UK charity: http://www.carersuk.org/home
Princess Royal Trust for Carers: http://www.carers.org
Crossroad Charity for in-home care: http://www.crossroads.org.uk
Age UK: http://www.ageuk.org.uk/ (a combination of the charities formerly known as Help the Aged and Age Concern)
Barnardos – young carers’ projects: http://www.barnardos.org.uk
The Alzheimer’s Society: http://www.alzheimers.org.uk
Try putting “carer” into Google and it is amazing how much will come up.