Who are the Carers?

If you are the principal caregiver to someone recovering from  encephalitis, you suddenly find that people are calling you 'The Carer' where before you were that person's wife, husband, parent, friend or child.  You are pitched overnight into a new and highly responsible role, but it can take a long time to find out what that role means for you and for your family.  It can take a long time, perhaps quite a few years, before you know how much your relative or friend will recover.  In the early months you may have no idea what the future holds, you live from day to day, you keep an open mind, stay hopeful.  All at once you are grieving for the life and the person you have lost, while thanking heavens that they survived.  You are wondering how you are going to get the best services, maybe in an area where appropriate services are thin on the ground.  Maybe there are children to bring up, a job to do, worries about lost income.  And all the friends who were around for the first year or so offering to help ­do they stick around?  Can they give you the help you need?  Can you find ways to keep your social network from failing away?  Do you feel like the whole family has had encephalitis ?

The Worst thing about it . . .

" ... is he looks all right, he sounds all right.  The neighbours think I am making a fuss over nothing.  No-one understands just what problems he has, we all have."

“ ... our own GP doesn't recognise my daughters problems.  He won't let me go in with her, says she's old enough to go on her own.  But she doesn't remember why she's gone, and she won't remember what he tells her.  And the doctor just tells me I am hysterical.  Doesn't he know what encephalitis  can do?  Hasn't he read the neuropsychology report??"

“....I just keep thinking, what's going to happen to him when we die?'

“.....they give us a week's 'respite' every so often in the local nursing home, but when I see the state he's in when I go to pick him up, I just want to break down and cry.  One time he was dehydrated, and they said, 'well we left a jug of water on the table', but Peters not going to know to drink it.  I told them, exactly what to do, but they never listen to me - I'm only a patient's wife!'

“ ... he's too 'difficult' to be accepted by any of the facilities round here, so I have to cope alone 24 hours a day with someone all the professionals in the area say they cannot handle.  Sometimes I am so desperate I feel I should be dialing 999, but there's no help, so where does that leave us?"

“.....I love my wife.  She is the same person she always was deep down.  I know she's still in there.  She's just different now.  I thought this was a welfare state.  How come she's been abandoned this way?"

“... he has gone from the strong one in the relationship to being a dependent and unpredictable person.  He doesn't have insight into his own problems, and goes on taking decisions as if there were nothing wrong.  Life is one long argument - about money, about his drinking, the business is ruined.  I am exhausted.”

Natural ways of coping

In the immediate days following the illness there are several natural and automatic coping mechanisms.  One is shock when we hear the news we might feel not quite all there for a while, numb, functioning on auto-pilot.  If we were completely present in the moment the full force of the news might be too much to take in all together.  Then there is denial, a kind of disbelief that so much could have changed so suddenly.  This takes many subtle forms and could be both functional and dysfunctional.  In not accepting, for example, the permanence or the extent of disability - it could work favourably, if a positive outlook encourages rehabilitation towards the best possible outcome; or it could have the opposite effect if unrealistic expectations mean that failure is inevitable.  Stoicism is a typical response.  It is natural to want to cope on your own, especially if you cannot see how anyone can help.  But it is important to look for ways to accept help of some kind from anyone willing to give it.

Strategies for coping

Take account of what you are up against

All the studies of family reactions to acquired brain injury show that this set of disabilities is likely to be highly stressful for the whole family. It is known to be more stressful to spouses than to parents, maybe because when your partner is brain-injured you may have no-one to share your role with.  So first, it is important to acknowledge that this is likely to have a significant effect on you, the carer.  Many carers see that by far the worst effects are, of course, felt by the person recovering from encephalitis, and feel reluctant to accept support for themselves as carers, when there is not enough support for the post-encephalitic person, who must come first.  A perfectly natural reaction.  You are a carer because you care very deeply about your relative or friend.

What would your relative have wanted?

However... remember that they care very deeply about you too, even if the brain injury means they may not always show or express it.  Every so often, ask yourself: if we had both known what was going to happen, what would he/she have wanted?

Pace yourself.  If you are going to be primary carer for 1 0 years or 40 years, how are you going to look after your own physical and mental health for the long haul?  For the sake of the whole family it is absolutely essential that you make sure you have breaks, support, someone to confide in, and fun without feeling guilty.  Don't give up hobbies and outings - dancing, riding, football - you need them more than ever now!

If you have children with a post-encephalitic  parent, this can help to clarify what the family needs because you are already in the role of carer to the children.  Sadly many marriages with children end in divorce.  But it is important from the outset to express the needs of the whole family to get as much support as you can, and not temporary, but ongoing support, so that the family can remain together if at all possible.  But when it is not possible, then you need to be supported in the decision to split up and to go on having as much contact with your relative as you all want.

Help for the whole family

In all dealings with those providing and planning services, make sure that they take the needs of the whole family into account, and that they take them seriously.  You may feel as though you are being a nuisance, or demanding.  Professionals may make you feel that way.  But they should understand that it is in everybody's best interests if the family is supported as a whole, and the individual needs of all family members.  When referrals for rehabilitation or transitional living or continuing care are made, how easy is it for family and friends to visit?  How accessible by transport?  How expensive?  Does your relative have a room or suite large enough for you all to spend time in at weekends?  Are you involved in decisions and in case conferences?  You are the expert on your relative.  Are you perceived as such?

When rehabilitation is planned, how much will take place in the community, i.e. at home?  Learning during a rehab programme is often environment-specific, so what is learned in a centre may not always generalise when the person goes home.  Ask for part of the programme to be conducted at home and involving the family so that everyone can support the process.  The family and the post-encephalitic  person should be involved in goal­setting.  What may be a priority for one person may be immaterial to another.  Make sure that the time and resources devoted to recovery are taking your relative in the direction they would want to go.

A clinical perspective

When your relative is saying something irrational or difficult or argumentative, step back, take a deep breath, and think about what is behind the conversation.  How much do you know about your relative's injury and the effects it has on thinking, information processing, remembering, mood and ways of expression?

Even if you have been told before, maybe years ago, ask for the neuropsychologist to spend time explaining the assessment of your relative to you.  If there is no neuropsychological or neuropsychiatric assessment, then ask for one to be conducted as a matter of top priority - preferably a cross­disciplinary assessment including neuropsychology.  Without this, how can anyone plan the services needed?  Until you know what is broken and by how much, how can anyone try to fix it?

Similarly, once you have a real understanding of how your relative is thinking and feeling - and once the rehab team has spent time with you explaining the effects of that on behaviour, you can perhaps adjust the way you react.  It can mean that, instead of being drawn into an argument or feelings of exasperation, you can take that clinical step backwards and think ­"ah, that is his information processing problem, he can't go any quicker' - or “aha”  those frontal lobes again, he wouldn't mean to be this angry" or, "why is she acting like that? of course, there's background music/ too many people talking at once/ we normally have lunch at this time ..." or whatever.

When a child is recovering from encephalitis, whatever their age, it can be all too easy to become over-protective.  This can have the effect of reinforcing dependency.  Your child may have so many special needs, in terms of education, social, emotional and functional development, and there are so few specialist centres and professionals who are expert in paediatric brain injury, you may very well find yourselves having to become the primary experts and advocates for your child.  This may be in addition to bringing up other siblings.  The Encephalitis Society has an education and information pack which you will find invaluable.

While you may not want to take on the role of a therapist, and it may be inappropriate to do so, nevertheless that extra understanding can help you steer a smoother path through the hard times, and can be really helpful to your relative and to the whole family.

Asking for help

The leaflets from the Carers National Association show you ways in which you can ask for help and be involved in the care plan for your relatives.  Once you are armed with a good comprehensive assessment of what your relative and other members of the family need, use this as a tool to get services.  If inadequate services exist, then team up with other families through the Encephalitis Society  and related organisations such as Headway and ask collectively - ask the Health Authority, ask Social Services.  Involve your MP.

Brain injured families can feel they are living with the most marginalised of all disabilities because of the scarcity of services in many areas.  Authorities will tell you they have no money, it is not a top priority, the numbers are too few.  But the fact is, they rarely know exactly how many people in the community have an acquired brain-injury.

As a carer, you probably have hardly any time or energy and possibly very little money.  The idea of 'making a fuss' is unappealing and, anyway, you are stretched to the limit as it is. The Encephalitis Society aims to  campaign on your behalf for better support services. These should include support for the whole family; respite, holiday breaks, counselling, these things should not be too much to ask.

Carers have a very serious role to play.  You are looking after people who may have complex multiple disabilities.  You may be doing something that no facility in your area is equal to.  You are experts, and you are unsung heroes.

Look after yourselves

Reading List

Carers National Association has teamed up with the Samaritans to produce two new booklets, "When Caring Becomes a Crisis" and "When the Person You Care For Has Died" which are available free of charge from, Carers National Association, 20-25 Glasshouse Yard, London ECIA Tel. (0171) 490 8818.

"When Caring Becomes a Crisis " looks at the emotional stresses faced by carers.  It addresses the wide spectrum of different and often conflicting feeling of carers, The combination of stress and the physical demands on a carer can be overwhelming and may lead to a crisis.  The booklet emphasises the importance of recognising signs of stress and ways of coping.  It also offers advice on taking a break and how to get financial, practical and emotional support, including counselling.

" When the Person You Care For Has Died" offers support and practical advice to bereaved carers.  It looks at the intense and turbulent emotions of grief and encourages carers to look after themselves.  It also covers the practical and legal matters of bereavement and signposts carers to useful agencies.

Carers National Association is the only national charity which campaigns for and represents  all   carers. They have succeeded  in getting carers recognised in law with the passing of the Carers Act and  have a step by step guide called How to get my carers assessment.  Write to them at the address below  or call their CarersLine between 1-4 pm on 0171 490 8898 and ask for your free copy.

Carers National Association, 20/25 Glasshouse Yard,London, ECIA 4JS  Tel 01 71 490 8818