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When the Pastor Becomes a Carer
By Name and address supplied
It is not usual for Ministry Today to publish articles anonymously, but occasionally the subject matter of an article is so sensitive and personal that the writer asks for their anonymity to be preserved, in order to protect others. The following is one such instance.
We had only been six weeks in the new church where I had been appointed minister when my husband was diagnosed as having Motor Neurone Disease. I had accepted the job on the basis of a misdiagnosis. We were in an area where neither of us had family or long-term friends; we had neither parents nor children and he was an only child. I had one surviving brother 300 miles away and we had not sold our previous home before we had bought the bungalow next to the church. Our vulnerability was total.
What happened in the 13 months between diagnosis and death - yes, MND can be like that - was so dreadful that it has taken me years to adjust to and deal with - and lay to rest. Because I have let it be known what happened to me, I have heard of other situations where totally unacceptable things have been said or done that are seared on the memory of the victims of what is, in fact, abuse of the vulnerable. I am now doing all I can to alert denominational leaders to a strange syndrome that can kick in, in this sort of situation, so that they can move fast to avoid the worst of it. Yet, I dare to believe that, for at least some of the time, the perpetrators are not aware they are doing it because they are doing what seems to come perfectly naturally to them.
Many congregations, especially Free Church ones, work very hard to raise the money for their minister's stipend. For many it is a terrific act of faith to employ a minister at all. So the first reaction of loyal members can too easily be a horrified, "But how can s/he possibly look after us properly if s/he has to look after them?" This is the perfectly normal reaction of many employers - which is why so many people with significant caring situations at home keep quiet about it. Indeed, the Church Secretary told me, the day after the diagnosis, that the Church Treasurer was resigning because he could not stand the strain of finding my salary.
Hence the value of the Policy Briefing produced by the Carers' National Association, 'Carers and Work'. Their survey of 1990 discovered that 15% of the nation's workforce go home to a significant caring situation - which was the main reason why Lord Sainsbury got involved - declaring that, if 15% of his workforce were carers, he wanted to find out something about what it meant! Nearly half (49%) of carers have to give up work due to their caring responsibilities - and promptly lose an average immediate personal income of £9000. It costs business an estimated £15,000 every time a carer gives up work to care.
The CNA point out how important it is for carers to continue in work, even if only part-time, for several reasons:
- to help with the finances (good quality care is expensive);
- to maintain interests and companionship outside one's caring duties;
- to avoid the difficulties of returning to the labour market after the sufferer has gone into residential care or died.
If employers do not encourage their staff who are carers to stay on, they lose the benefit of their training and experience (including the extra insights they gain as carers!) and reduced stress levels. The Briefing Paper also points out the various developments made in work legislation and provision for carers by recent government action. It is now a much more carer-friendly world out there.
But not in some church situations, however, where old-fashioned concepts of duty can glorify the carer who stays with the sufferer 24 hours a day, 7 days a week and say how 'wonderful' someone is who does that! Indeed, my Church Secretary 'bounced' the suggestion on the Church Meeting, with no prior consultation, that I should be given a 6 month sabbatical so that my husband could be looked after 'properly' - presumably so that I could dismiss the other carers and look after him single-handed. Anyone who has been a carer knows that that can be a disaster, and even a sign that something very unhealthy may be going on. Both sufferers and carers can put the Significant Other through un-merry hell. A misguided promise, "Oh, I would never leave you!" or "I will never put you in a home!" can be used by some sufferers to ensure their carer is hardly out of their sight. Every time an event comes up that the carer wishes to go out for, whatever arrangement is made, is triumphantly proved unacceptable, mysterious health problems appear - until the power-game achieves its desired result and the carer stays home! One of the most troubling statistics produced by the CNA is that almost half the carers they interviewed had not had 2 consecutive days off since they began caring.
Then, of course, there are the carers who abuse the sufferers. Being with anyone, however much you love them, 24 hours a day, 7 days a week is, in the vast majority of cases, bound to produce tensions - and for Christians, that often leads to inappropriate guilt. It is very interesting that, among all the pamphlets one can pick up at the surgery or from specialist organisations, I have not seen one on the relationship between the sufferer and the chief carer. That is the Big One - the really hot potato - and the one that, if it is not good and healthy, produces the most misery of all. Christians have no business being ignorant of what it can be like.
Having said that, the expectation that Christians are any better than the rest of the population in their prejudices has to be met by the realism that knows that we can only be different if we are helped to be! For years the existence of the Carers Christian Fellowship has proved that Christians can be as fazed by prolonged or terminal illness as anyone else and that, just when the Christian carer needed their church friends most, they failed them totally! So it is people in the pew who suffer as well and not just ministers, although when the church itself is the employer one cannot help wincing to hear of the young minister whose wife had been diagnosed with terminal cancer being told, "Of course, we will give you time off, but you needn't come back."
This is where I believe the denomination must know how to swing into action and, like the cavalry 'ride in' to the situation. The phones must ring immediately with offers of help and support and, in particular, encouragement to the congregation to recognise the opportunity it has to witness to Christian caring for its pastor. These experiences, after all, can be used, in the grace of God, to draw a fellowship together rather than blow it apart. The denomination should give members of the congregation opportunity to express their fears, but restrain their enthusiasm to share them with the minister at that point! Offers of a grant of money to help them for the period of illness, and/or help to 're-write the terms of employment' during the time involved, is also important. Surely all denominations should have such a document handy to discuss! It goes without saying that it is quite devastating enough for the minister and family concerned without feeling that the denomination, as well as quite a lot of their friends, have 'vanished' on them.
Moreover, remaining in the job, even part-time, is not only one of the ways you can survive the demands of being a carer, but so often minister's families know how much the minister loves their work and feels called to it and feels dreadful if any of them are responsible for him or her having to give it up. There is a great deal of pride in a minister's family about the way the minister 'does their job'. Besides, ministers are expensive to train - why throw them away by not caring for them in their hour of need?
Every denomination needs a 'checklist' including such things as asking if the carer has contacted the local branch of any specialist organisation, e.g. the Alzheimers' Association. Every denomination needs a phone list of carers or ex-carers who can check that the new carer has someone to call on who has 'been there, done that, got the T-shirt'! "Oh, we're managing!" can be nonsense - or a comment on a temporary situation that is not going to last for very long, and a new carer may need to be told that, plainly but graciously. Most carers are doing it for the first time and are often too eager to assure others that they are coping, when they aren't really on top of it at all! Besides, one may know that one needs help, but is often not quite sure what kind of help until it arrives. How wonderful it is to have friends who are creative in their ways of expressing care! One of my friends simply gave me a cheque for £200 - and I bought a good mixer and liquidiser I knew I would need when my husband's swallowing muscles began to go. One of my Yorkshire cousins who breeds Jacob's sheep turned up with a fleece against pressure sores! It went beautifully under the bottom sheet, over a wooden bit on the edge of the bed where I had to sit him in order to get him into his hoist. Wonderful! A couple with much experience of the disabled said, "Can we come to Sunday lunch - and bring Sunday lunch?" YES!
The whole business of being a carer is like hacking your way through a jungle making mistakes all the time. You really can do without the way some Christians have of dumping even more guilt on your head! Why do they call, without warning, at a totally inconvenient time and then be very 'huffy' when you do not welcome them - and their gift of grapes which he cannot eat! You have no defences against such things at such a time. The only, and dangerous, way of surviving is by de-sensitising yourself to everything coming in from outside - which is why some carers seem as hard as nails. Pastorally speaking, carers may need help, when the loved one has died, to learn how to be vulnerable again.
Gosh, you learn a lot! I sometimes say that, if I married a second time, and my second husband got MND, I would do it much better next time!
The hymn my husband wanted to be carried in to, at his funeral, was 'The Lord of the dance'. It has the line, 'It's hard to dance with the devil on your back'. Years later, when writing a paper on 'The Carer's Perspective' for a lecture for the Motor Neurone Disease Training Day for Health Professionals, I realised how important that line was. Yes, you have to keep dancing - but the devil has to be on your back and not you on his! Our home was to be the place where we two lived and one of us happened to have Motor Neurone Disease. It was not the place where MND ruled OK! The big question is, "Are you winning?"
You need help at all sorts of levels - and the spiritual one can be the one most neglected. Ministers who are carers can be a long way from supportive colleagues who could drive over and pray with them, but a phone call can be of immense value (find out when a call would be convenient!) as can other ways of support. One can be too tired to pray some of the time and the more 'hassle' there is with the Christians who should be one's best resource, the more angry you can be - and that can be a spiritual killer too!
But denominations should surely take on some sort of policy on this subject, helped by carers and ex-carers who should be drafted in to help create it plus someone who knows how the system of grants works - it can be dreadfully complicated. All these people are sitting in our pews! Go for it!
For further help:
A useful contact is the Carers Christian Fellowship: Brenda and Chris Baalham, 14 Yealand Drive, Ulverston, Cumbria LA12 9JB. Tel: 01229 585974.
A useful book is Caring for the Carers by Julia Burton-Jones (Scripture Union).
A useful organisation, with a network of local branches, is the Carers National Association. Tel: 0207 490 8818.
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