Being a carer isn’t easy

It is hard for a carer to feel they are doing a good job unless the person they care for is getting better in some way.  And they may not be.

Good care may help someone feel better about themselves even if their bodies are getting worse, but it may not.   They may  be going through a grieving process which makes them feel bad, whatever anyone does.

If they do get better, this can bring new conflicts.

People often feel they are not good carers.  They have high expectations, based on what they think they should feel or do.  Without realising it, they may measure their own value by the improvement or deterioration of the ill person.  This makes it very hard when the person gets worse, whatever the reason.  Carers often attribute a worsening to something they have or have not done.

Carers may have too many tasks to do for the number of hours in the day.  Every new possibility for rehabilitation or improving the life of the ill person may involve even more effort from a carer.  Too many ‘little things’ become too much, but the carer may feel they have let the person down if they have to refuse yet another (apparently minor) demand.

People are often unrealistic about being carers.  They think they should be able to put their own feelings, hopes, concerns, self-care ‘on hold’ for as long as it takes.  But if it takes a lifetime, this means giving up their whole life to someone else.  The other person may or may not want this.  Both people may have a conflict about whether this is what they want.

There can be real conflicts between the ill person’s needs and the carer’s needs.

• Both can feel terribly guilty about making demands on the other.
• Both can feel bad about the threat to the other’s life caused by their own needs.
• Both can feel they are being selfish themselves.
• Both can feel the other person is being selfish.
• Ill people often do not see how many demands they make on those who care for them.  They can lose the capacity to identify with their carers.
• Carers can feel terrible if they try to let the ill person know their demands are too much.
• Refusing to help makes people feel terrible, but sometimes it is necessary to bear the bad feelings.
• It is hard to ask again after a refusal.  Sometimes it is necessary to bear the risk of another rejection.

It would seem sensible to have a discussion about how much help should be given, about times when the carer is not to be asked to do something, or about tasks they should not be asked to do.  People seem to find it very difficult to have this conversation and/or to keep to agreements made.

To have such a conversation means recognising that the ill person :

• is not better yet.
• may not be getting better
• is dependent – and many people hate being dependent
• is needed by the carer – as they were, not ill.
• needs a lot more help than anyone likes to admit

Neither carer nor ill person may want to know how much is needed

• The carer may be trying to protect the ill person from knowledge of the burden they are feeling
• The carer may be trying to protect themselves from knowing their own fears about the situation.
• The ill person may be very frightened of knowing how much they are demanding of a carer
  • they may be frightened of their own guilt, and be disowning it
  • they may be frightened the carer will demand some kind of payment which they will be unable to pay
  • they may be frightened of being abandoned if they do not control the carer – though they may also know that increasing demands and attempts at control may ultimately drive a carer away

If a carer works out how much time is demanded of them, it may seem surprisingly little.  Both carer and the ill person may not take into account the amount of time the carer has to hold the ill person in mind.  Feeling responsible, whether this is a realistic responsibility or only in fantasy, can be exhausting.

Very frightening feelings may be lurking, unspoken.

• If I don’t hold them in mind all the time, they will die
• If I were not there, they would die and I could not forgive myself.
• If I did something which enabled me to forget them for a moment, they would be very angry with me
• I wish it was all over
• I hate this situation
• I wish they were dead/ I don’t want them to die, ever
• I wish I was dead / I’m afraid this will kill me
• I hate not knowing what they will be like tomorrow, or next week, or next month.
• I am afraid it will go on like this for the rest of my life
• I can’t bear them getting better again, only to get worse the next day. It’s worse than a steady deterioration. At least I’d know where we were then.
• they don’t really like me, they are only here because they have to be

A carer can feel they are keeping the ill person alive by giving up their own life.

• There may be some truth in this;  there may be some exaggeration; or it may be quite untrue.
• The carer may be ultimately unable to keep the person alive because of the illness.  People can forget the role the illness plays in everyone’s lives.

Caring over a long period of time is different from nursing the sick over a brief period.

• For a time, it is easy to give things up, knowing you will get them back sooner or later.
• For a time, people can manage on their own resources: their own thoughts, their own opinions, beliefs, hopes.  They can put their fears on hold.  They can do without sex for a while.  They may be able to do without eating properly too, and without exercise classes, entertainment, hobbies, playing music, meeting friends, or whatever they did in their previous lives.  They may also be able to take time off work.

But there are costs

• After a while, if you don’t eat or exercise, your body pays a price.  It may make you ill, or just bad-tempered.
• If sex relaxed you and made you feel good, doing without it may leave you tense and feeling bad.
• You may also feel bad about having needs of your own, if your partner is unable to satisfy them.
• If you don’t go to work you may lose your job, your income, and other satisfactions of working.
• Your own thoughts may get stuck and become more unrealistic if they can’t be shared with someone.  If the person you used to share thoughts with is now ill, this may have consequences for your thinking as well as for your  feelings and your behaviour.
• Caring for someone else can cut you off from  talking to other people, who may also have been more important than you  realised.  You may need their opinions, their cheerfulness, their moans, their company.
• Becoming a carer, or just witnessing your partner’s illness, may change your opinions about what matters in life, and this may cut  you off from people you knew before.  You  may find their opinions irritating; they may not understand you now, you may have lost the desire to know about their lives.
  All of this involves loss, which may need to be grieved.

Sometimes carers underestimate the help and support they can get from the ill person.

• People often feel they cannot share their troubles with someone who is ill themselves. The ill person may in fact like hearing other people’s troubles as a distraction – though they may not.
• The ill person may be able to contribute more if those around could work out ways of allowing it or facilitating it.
• The ways people divide up roles when one is ill may be based on assumptions which are actually not true.  There may be room for negotiation.  Unfortunately, negotiation and settting up new systems can add to the work of an overstretched carer. More people may  need to be involved – but this also adds to the work of the carer in the short term, though it may reduce it in the long term.

However, trying to make more emotional contact with the ill person can bring up painful feelings.   If you try to share your thoughts, you may get very upset (and ashamed on their behalf)  if they are incapable of making sensible responses.  This can remind you of the mind and companionship you have lost.  There is a sense of safety in companionship, which illness can erode.

It is hard always to feel you must give if you aren’t getting anything back.

People need to feel cared for themselves.  If the ill person was the person who provided most of the caring for you, you may be suffering a huge loss if they don’t seem to be able to care for you in the same way as they did before.  Becoming a carer may involve grieving for two or more lost lives – that of the ill person, and that of the carer.