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Caring brings changes

'When my grandma got frail, my mum had to become her carer. They had never got on very well. Mum found it difficult having to become the person who made decisions for her and she really hated having to do things like help Grandma onto the toilet.'


'My sister and I were teenagers and resented the fact that Mum didn't have much time for us. Dad tried to be supportive, but he couldn't handle Mum's tears and anger. It would have helped if we had all been able to talk about it. I think Mum felt she ought to manage on her own. But she was either frantically busy coping or in floods of tears with tiredness and frustration.'

'Mum was so relieved when Grandma died, and shortly afterwards she found a job that gave her a lot of satisfaction. But I don't think my parents ever really stitched their relationship back together again.'

Nina's story illustrates the problems caring can bring to relationships:

  • changing roles, when someone has to take over responsibilities that have traditionally been the other person's

  • the difficulties of caring when the relationship has never been easy
  • looking after parents and children at the same time
  • the carer's guilt at not being able to manage
  • other members of the family who don't know how to help
  • the wedge that caring can drive into the carer's other relationships.

Every caring situation is different, but many carers have similar experiences and feelings. In this section, we discuss some of the issues that often come up for carers with their relationships and what carers have done to maintain relationships. Some suggestions are made for getting help if relationships are in danger of breaking down.

Why should you care about your relationships?

Relationships range from the love and comfort you can have with your partner or spouse to the exchange of a few words with a neighbour. Whether we are carers or not, love and support make us feel good about ourselves and give us a sense of where we belong in the world.

Many carers find relationships are strengthened by caring. Louise, whose husband had a stroke two years ago, says, 'I'm happier than I've ever been. I have received so much love and support my life is really full.' Other carers find the opposite is true. Tom, who is 80 and has cared for his wife for 10 years, says, 'As far as neighbours are concerned, we might as well live on an island.'

When you are caring, so much time and energy can be taken up with day-to-day chores that there is no time left over. It may seem self-indulgent to worry about your relationships. They can get put to the bottom of the list- it's probably easier to get your washing machine fixed than fret about arguments with your partner.
 

But relationships are like plants; if they are neglected, they shrivel up. This doesn't mean it's entirely up to you to make your relationships work. You've got a lot on your plate already.

Relationships are two-way. If the people around you aren't giving you what you need, you may have to ask for it, even if this means being selfish or assertive, or running the risk of offending someone.
These are risks worth taking for the rewards of being able to talk more openly with those around you, and getting the support that you need. Your family and friends value you for all the things that make you who you are: your kindness, your sense of humour, your wisdom, your practical skills, etc. 
 

When you become a carer, you don't completely change. Those parts of your personality are still there, but some of them will be hidden under the wear and tear of everyday life. You may become short-tempered because you are stressed. You may not have so much time for people. You may be too tired to make love with your partner, or too busy to play with your children.

All this can make you feel pretty bad about yourself. This is sometimes called 'low self-esteem' - it means that you don't value yourself very highly. And if you don't value yourself, people around you find it more difficult to value you.

Looking after yourself

To care successfully you need to be healthy, both physically and emotionally. These two kinds of health depend on each other. We're much less able to cope with feelings if we haven't slept well or feel run down. Take Care of Yourself gives advice on eating healthily, getting enough rest, taking gentle exercise, avoiding injury while caring and getting rid of tension.

It is also important to give yourself regular treats. You deserve them. Take some time out for yourself every day - even if it is just five minutes to relax. Buy yourself something nice - a magazine or a bar of chocolate. Have a long soak in the bath with the radio on.

Accept as much help as you can

Many carers find it difficult to accept help. If this rings true for you, ask yourself why. It may be you don't want to be under an obligation to anyone. You may feel embarrassed having someone in your home.

Perhaps you are worried people will think you can't cope. You may not be able to think of anything they could do, because the things you really need (like respite care while you go on holiday) are out of their range.


It might be worth while thinking of small things you could ask for without embarrassment. Could a neighbour help you out with odd jobs around your home? A friend or colleague might be able to drive you somewhere or do some shopping for you. Even if it only happens once in a while, it will be good for your morale. And people whose offers of help are always refused may stop offering. They may feel rejected and drift away. Caring can be lonely, and you need your friends.

Your relationship with the person you care for 'Although we become very snappy at times, we have learnt to tolerate this thing that has tried to come between us. Laughter is a great healer. Most of the times after we have had words we find a funny side to it.'

'My wife looked after me 17 years ago when I had a serious mental illness. Now it's my turn to look after her. It's part of life - for better, for worse.''Keith is no longer the man I loved. If he would co-operate I wouldn't find it so hard, but he is unbearable, and he can't help it. Every morning I resolve to be kind and patient, and I can't.'

When you start to care for someone, the relationship between you inevitably shifts. Sarah, who became a carer at 43 to look after her partner, says,
'I was always the shy reserved one, lacking in confidence. He was the confident one. Suddenly these roles were reversed.'

And Robert describes how he had to take over running the household at the age of 80.

'My wife was the proverbial super-housewife and failed to train me. It's very difficult having to learn these new skills when they are foreign to you, and when you are caring as well.'
It can be very hard to adapt, but many carers get a sense of achievement from finding that they can manage things they never thought they could. For example, Anna had to take over her husband's finances after his stroke and found she enjoyed the work, although she had never been involved in it before.

Many male carers say they feel closer to their partners, perhaps because they can express their gentler caring side. James says of his wife, who has Parkinson's,
'We seem to be more deeply in love than ever, as in caring I have to do a lot of personal things that you would not normally dream of doing for someone.'

However, the person you care for may become angry and depressed at not being able to do things for themselves. And you may feel you are constantly at their beck and call. These frictions can easily lead to anger and resentment on both sides.

Parents who look after a disabled child may find it difficult not to be over-protective. Sue, whose daughter has Down's syndrome, says, 'The first time she went on her own to the shop to buy sweets I sat at home feeling sick. I was so worried she'd get into some kind of trouble, or people would laugh at her. In fact she came back beaming with pride at this step towards independence. As a parent you have to learn to let go anyway - it's twice as hard when your child has special needs.'

The person you care for may seem to be deliberately getting at you. Eileen, who looks after an elderly friend, says,
'The week before she goes into respite care, she often creates a situation to make me feel guilty about taking a break. "You'll be glad to get rid of me" and "Am I a burden?" are phrases she uses.'

Elderly people who become confused can cause stress for their carers.
'Some days I can hardly bear the repetitions; she asks me the same question over and over again and then I flip. It's like being with a small child, except that with a child you know there will be progress.'

The person you care for may be unpleasant to strangers.
'Mother doesn't like anyone she doesn't know well, and is extremely rude to them.'

Even if you can understand the rudeness as a reaction to being ill or in pain, it is very frustrating to have other people's efforts rejected, and to have to soothe their feelings. It can make you more isolated.

You may feel unable to leave the person you look after in someone else's care, or if you do leave, be unable to relax in case things go wrong at home.

Many carers speak of the changes in personality that have come over the people they care for. This can be very painful. Anita recalls how her husband, who was diagnosed with Alzheimer's in his mid-50s, turned very hostile towards her.

'He didn't know me as his wife, though he knew everyone else. He told me his wife wouldn't like him sleeping with another woman, so would I stay in my own room. He accused me of stealing his sons, but when they came to see him he was very hostile towards them. I began to hate him. I hated the way he walked round day and night, opening and closing doors. He was a physically fit man who I had to look after like a baby. I hate him for getting this disease and ruining our lives together, yet when I go to see him I could cry for this confused old man.'

Sex and intimacy

Your sexual relationship may come under strain when you become a carer, whether it is your partner who needs care, or another member of the family. The difficulties may not be new but the problems you now have as a carer may highlight them or make them worse.


Sex may no longer be very important in your relationship. If you are content with the way things are, then you don't need to do anything about it. But perhaps you miss sex and don't know how to start again.

If frustration and loneliness are adding to your worries, then perhaps you should think about ways to deal with them. If you can keep the love and intimacy you share with your partner alive, you will feel cared for yourself.

'My partner is a joy to care for and I love him even more now than I did before he had a stroke. He shows his love for me as best he can. I certainly miss what we had. We were close in every way, but one learns to adapt.'


When you care for your partner

There may be many reasons why sex has become a problem. Your partner may be too ill or tired, or in pain. The medicines they take may affect their interest in sex. They may be embarrassed about changes in their body. Perhaps you are put off by these physical changes, or you are too tired. Now that you do so many intimate things for your partner you may no longer feel attracted to them.

The most important-and perhaps the most difficult- thing is to try to talk about these problems. If you can talk to each other about what you want, you may be able to find ways to be loving and to comfort each other, even if you can't have the same kind of sexual relationship you had before. Kisses, hugs, cuddles, holding hands may be enough to reassure you both that your love is still alive.

If the effects of illness or drugs may be part of the problem, you and your partner should talk to your doctor or a specialist nurse or counsellor. Healthcare professionals are just as likely as you are to be embarrassed, so you may have to be very up-front and clear about what the problems are and what advice you need. Think carefully before your appointment and write down what you want to ask.For example:

  • What exactly are the problems and when do they occur?
  • If you think medicines might be affecting your partner's sex drive, ask if this is a recognised side-effect of this particular drug.
  • Could a different drug, dosage, or timing be tried?
  • Are the problems likely to be only temporary?
  • Can the doctor refer you for sexual or marital counselling ?
  • Some voluntary organisations produce booklets about the sexual and relationship problems experienced by people who have particular illnesses or disabilities. Many also run telephone helplines; you may be more comfortable talking to someone over the phone than face-to-face.

Some carers who can no longer have sex with their partner accept the loss of a sex life without difficulty. Others find it takes something away from their sense of self. What you do about it depends on what you personally find acceptable. You might consider developing new close friendships to provide some of the comfort and intimacy you miss. The 'pen pals' columns of magazines for carers, such as The Carer published by CNA, can be a way of getting in touch with people who understand your loss.

When you care for another member of the family

If you care for another member of your family, sexual problems may still arise between you and your partner. You may just be too tired. You may feel angry that your partner doesn't support you. Some couples find they can't relax when an elderly parent comes to live with them.
'I keep thinking that Mum might overhear us. I know it's crazy - we've been married for years - but I feel like a teenager again.'
Your partner may feel that you no longer care about them. They may feel that all your energy and love are going towards the person you are caring for.

'Simon has found it very hard to accept that our son is disabled. I'm sure a lot of it is guilt, and he may, in some part of his mind, blame me too. It has really driven a wedge between us. There are times when I can't bear to sleep in the same bedroom because I resent his attitude so much.'

If your relationship with your partner is going badly, it is important not to neglect it. Talking about things may help to calm the situation down. You may want to try to get some respite care for your relative, so that you and your partner can spend some time together and just enjoy each other's company. If you cannot easily talk to each other, you may find it helpful to go together to a counsellor. Relate (formerly the Marriage Guidance Council) is a nationwide organisation which counsels people with problems in their relationships. Other local organisations which could help often advertise in local libraries or in doctors' surgeries.

When things go badly wrong

You may get to the stage where you feel you can't carry on in your relationship. Your partner may be the one who decides to end it. Splitting up is always painful and may be particularly hard when you are also a carer.

There are many practical things to sort out, and it is sensible to get advice early on from a Citizen's Advice Bureau or local family lawyer about the legal side of things. You may want to talk to a counsellor about your feelings. If your partner is also the person needing care, there will be other arrangements to think about, such as how their care will be managed from now on. You will need to contact their social worker to tell them what is happening. They will have to reassess your partner's care needs. This may be very hard for you; you may be put under pressure to stay with your partner as their carer. Don't feel guilty. People don't decide lightly to split up. If you have made this decision and are sure it is the best course for you, stick to it.

Relationships with other members of your family

'My daughters are more than caring and considerate. They really care for their father's well-being (he has Parkinson's). My elder daughter encourages her two little ones to hug him and relate to him in a very loving way. I think this has strengthened the relationship between us all.'
'My daughter or one of the grandchildren comes in to sit with my wife so that I can go out to bingo once a week.'
'My son always asks how I am but I know he doesn't really want to know. If I say fine, he'll accept that. He wants everything to be OK so that he doesn't have to worry about it. If I try and tell him how I really feel, he brushes me off.'
'I feel taken for granted. They don't see me as a person in my own right any more.' 


Children and teenagers

Problems can be particularly acute when you have children at home and also care for your partner or an elderly parent. Sarah, whose partner is mentally ill, has a 13-year-old daughter.
'I do worry about her. She never complains but I do feel she has suffered socially. She doesn't want other children to come to the house because of him. When he is bad he says he will leave us if the child doesn't leave the house immediately. (He can't stand loud noises.)'

Other problems arise for parents of disabled children. Brothers and sisters often feel that the disabled child gets all their parents' attention. Children need an enormous amount of support from their parents at the best of times. When a parent is tied up with caring for another relative, the child may become more demanding or difficult in their behaviour, or quiet and withdrawn.

If your child seems generally fine, and their stroppiness is no worse than their friends', they probably are fine. Nevertheless, it is worth trying to take some time to spend with them - not necessarily doing something special, but just being around, so that when they want to talk you are not too busy to listen.

You may want to explain to them what is going on, in terms of the illness or disability of the person you care for, what the future may hold, and your feelings about caring. This can help them understand why you are sometimes snappy or too tired to do what they want. You may feel you don't want to overload your child, either practically or emotionally, but children don't like things to be kept secret from them, and usually cope well with even quite complicated situations and emotions.

When children and young people play an active part in caring for the ill member of the family, they are considered young carers. Often parents feel guilty about the extra tasks their children do, or the fact that caring stops them from joining in activities they want to do. If you think that caring is having a significant effect on your child's development or education, you should contact social services. There are many ways in which they can help the whole family if the child is a young carer.

Adult relatives

It can be very difficult if your relatives don't support your decision to become a carer. Eileen describes her relationship with her sister. 'She can't understand why I chose to care. As I result I can never have a moan to her because all I get is the answer, "Well, you chose this. I thought she'd be better in a home."'

Lorraine, whose husband has Alzheimer's, describes how she fell out with her son.
'He became antagonistic to me. He didn't dispute the diagnosis but he couldn't see the difficulties my husband's change of personality created for me. "There's nothing wrong with Dad. It's your attitude," he would say.'

Valerie, who has looked after her schizophrenic sister for 40 years, says that her other sisters never visit or contact her because they don't want to be left looking after the sister. And Barbara's daughter completely cut off all contact when Barbara herself became ill through the stress of caring for her husband.

These strong reactions are hurtful and difficult to deal with. It can help to think about why people have reacted in such ways. They may be frightened by illness or unable to cope with the changes in the person they used to know. They may be squeamish about the caring tasks you do. They may feel guilty that you are bearing the brunt of caring. These feelings may be so uncomfortable that they shut you out, rather than face up to the realities of your life.

Thinking about this will not resolve the situation, but it may help you understand it, and that may help heal your own hurt. You need people around you who can support you. If your close family cannot do that, you can't make them. Perhaps it would be better to keep channels of communication open, but not expect anything from them, and hope that in time the rift heals.

Relationships with others outside your family

Friends, neighbours, work colleagues:

'I don't know how I would manage without my friends. I make a lot of effort to keep up with them when my mum goes into respite care.'
'When I decided to give up work to care for my parents the attitude of some of my acquaintances was, "You should get on with your own life." They didn't seem to realise how much this upset me. I now tend to mix with other carers or ex-carers because they understand why I made this choice.'
'Many of our friends don't come near us any more. They can't bear to see my wife as she is now. Their reaction has made me very angry.'
'Since my husband had his stroke we have made new friends and only lost two. (They want to remember him as he was.)'
'Friends and neighbours never ask how I am. They always ask how my partner is. I feel like shouting, "And I'm not too good either," when this happens.'

Many carers have had the experience of friends drifting away through embarrassment or guilt, or because they can't accept what has happened to the man or woman they used to know. Others object to the unthinking ways friends make suggestions about their life and how they should run it.

The company of other carers can be very supportive, as you don't have to explain your situation. A local carers' group can not only support you but give you a new social circle. Many carers also welcome the chance to share experiences with others, and feel that they can help other people.

You may feel, however, that you have enough of caring and that you want to spend any free time with friends who don't have the same worries as you. Friends who truly value you will support you in any way you want. You may need a shoulder to cry on or someone to sound off to, someone to give you sane advice or someone to take you right out of yourself. If, occasionally, your friend says something insensitive, you may be able to shrug it off, or tell them why their remark hurt you.

Health and social care professionals

For all carers, relationships with the GP, district nurse and social worker are the key to the system working smoothly. If you are confident that these people will listen to you and treat you as a partner in caring, you are in a good position to get their support when you need it.

Health professionals are beginning to be more aware of the need to identify and support carers. However, many carers have had very bad experiences with doctors and other professionals.
'It would be so much easier if we didn't have to fight for every little thing. So often I've been made to feel uncomfortable, guilty, inadequate when I've asked for something I need, especially time off. Doctors, nurses, health professionals, government agencies must be aware that we have a life to live too.'
'My GP doesn't want to know how I am. He's only concerned with my husband's progress.'
'It took a long time and a great deal of pressure from me for medical personnel to take me seriously when I described what our life had become. My experience of living with John (who had Parkinson's) was ignored for at least two years. Indeed, I was often (and still am) seen as the "problem".'

Make sure that doctors and social workers know that you are a carer. It should be written in your notes and the notes of the person you care for. If you feel your doctor or social worker is not taking any notice of your needs, make an appointment to see them on your own account.

Explain clearly what your problems are, how you think your caring tasks are affecting you, and what they might be able to help with. Take some time beforehand to think out exactly what you want to say, and write it down so you don't forget. This may not get you extra support straight away, but you may find it is the start of a better working relationship.

The GP or social worker will have a better understanding of the strain you are under, and a clearer picture of your home life.

What you can do

As a carer, you may feel guilty, angry, resentful, frustrated and depressed. You may find that you hate the way you feel about yourself.

The person you care for may also feel guilty about needing care, sad at their own losses, angry, or depressed. Can you talk to each other about the way you feel and how you can help each other?

Of course, it may not be possible to talk, either because of their mental state, or because your feelings are so heated. Try to find someone else you trust to talk to. It is important to be able to say what you feel, without worrying about what the other person will think of you. Sometimes other relatives or close friends are not the most helpful people to talk to. They may have their own relationships with the person you care for and not want to hear what you feel about them.

Other carers can be very supportive. Carers National Association can tell you if there is a CNA branch or a carers' group near you. Many carers' groups offer social activities, training in caring tasks, campaigning for better services, and information on what is available locally. Most importantly, they offer carers the chance to meet others in the same boat. There may be a support group for carers of people with specific illnesses.

Try telephoning one of the organisations that deal with the condition or illness your relative has, or phone the CarersLine (0345 573 369).

Regular breaks from caring allow you to let go of day-to-day worries. You can catch up on your sleep, talk to the other members of your family, make love with your partner, stay in touch with your friends and keep up your outside interests. These breaks can help you keep your feelings about caring in proportion. You may need to be tough in asking for respite care (whether it is provided by social services or by other relatives or friends).

You should also make sure that you are getting all the help and benefits that you are entitled to . Advisors on the carers Line can give a benefits check and advise you about the support that is available. A Citizens Advice Bureau welfare rights adviser or social worker may also be able to help.
If some of the practical pressures can be taken off you, you may find the emotional ones are easier to deal with.

Counselling

If you need to talk to someone outside you usual circle, you could try counselling. A trained counsellor can help you talk about things that are troubling you, and perhaps help you reslove them.
A counsellor will not give you advice or tell you what to do, but will encourage you to find solutions that you are satisfied with. You set the agenda.

You may find you need a number of sessions to feel comfortable with the process and to build up your trust in the counsellor.

Relate offers counselling to people who are having problems in their relationship with their partner. Social workers often have training in counselling.

However they may not be able to give you very much time. Your GP may have a counsellor attached to the practice, or may be able to refer you for counselling on the NHS.

Some voluntary organisations offer counselling which may be free. You can contact the British Association of Counselling who can tell you the names of counsellors in your area. Find out what the counsellor will charge before you make an appointment.

Violence in a relationship

Some relationships may be under such strain that one person becomes violent towards the other.If you are attacked, or are afraid you will be attacked, or if you fear that you may be violent towards the person you care for, get help quickly. If you do not want to ring the police, you can ring the Samaritans (0345 90 90 90) at any time, day or night.
 

Someone at the end of the telephone line will talk you through what is happening and advise you on how to escape the violence or avoid doing harm.

The challenges of caring for someone who is old, ill or disabled can touch every area of your life. Your relationships - not just with the person you care for, but with your wider circle of family and friends - will be affected. While every carer's situation is different, and each relationship has its own joys and problems, many carers have similar experiences and feelings.

This page looks at the ways that some carers have maintained their relationships and gives suggestions for finding help if your relationships are in danger of breaking down.

Carers National Association

20/25 Glasshouse Yard
London EC1A 4JT

Carers National Association 1999
Written by Annie Jackson

Carers association