Dealing with changes

Sunday 28 February, 2010

On this page: Changing roles | Providing physical care | Care of children and other family members | Work and income | Helping children understand | Accepting and encouraging support | How cancer can affect relationships | Body image and intimacy | Putting on a brave face | Depression | Cancer and religious or spiritual beliefs | General tips for carers

Relationships touched by cancer change. You'll probably deal with these changes in a similar way to how you and your family have coped with things in the past.  

Changing roles

A diagnosis of advanced cancer may cause role changes within your family or relationship. Some changes will be minor and short term while others may be major and lasting.

Role changes may depend on the health of the person with cancer is and whether or not they're having cancer treatment.

People with cancer have the same needs and often the same abilities as before. If they're physically able and willing, people with cancer need to take on normal activities - right down to doing the dishes. People with cancer don't have to feel helpless.

'I thought I was doing the right thing trying to keep day-to-day problems from him, so he didn't have to worry - he could concentrate on getting well. I didn't realise it was the everyday things that made his days seem normal, that made him feel he was still an important part of the family.'

Some male carers find taking on household chores difficult and tiring, especially if they're not used to it. Some female carers continue with household work and increase or take on work outside the home. This is also tiring and stressful. 

Providing physical care

Providing physical care is a challenge for many carers.

'I've never had to help anyone have a shower before, let alone blow-dry hair.'

Some carers surprise themselves with what they can do once they're shown, especially if they have professional support. When you're ready, home nursing services can help. If the person you're caring for needs more care than you think you can manage, ask the doctor or nurse to arrange for nurses to visit at home. 

'When the nurse first suggested I could give my mum the injections each day I freaked out and said, "No way". But you know, I could do it with some help at the start. Mum said I was better than some nurses!'

Everyday care of children and other family members

Carers with younger children or other family members who are ill need outside help. This type of help doesn't have to be expensive.

  • Phone your local council to find out how they can help.
  • Social or religious groups and schools can often be very good at organising people to help out with cooking, transport and other practical things.
  • Take up offers of help from neighbours and friends.

Work and income

You may need time off work to attend medical appointments or to care for the person with cancer. Let your employer know what you're dealing with. Find out whether your employer will let you have time off. Most employers appreciate honesty and will try to accommodate your needs.

It may be easier for everyone if you have some time off, at least until things settle down and you have a better idea of what's ahead. Some employers will let you take annual leave, long service leave or leave without pay.

If time off isn't possible or desirable, talk to your friends and family about how they can help. How many people can, and want to, help may pleasantly surprise you.

You may be eligible for a carer payment if you provide constant care for the person with cancer (whether or not you work outside the home). To find out about this and other forms of financial help, contact Centrelink. The hospital social worker will also be able to put you in touch with sources of financial help.

Helping children understand

Children of all ages find it hard to adjust to cancer in the family, especially if it affects a parent or brother or sister. It's more difficult if the person with cancer is in hospital or looks different. Change can be frightening for children.

You may be constantly asking children to be quiet, do extra things around the house or stay with friends after school. As a result children may behave differently to gain attention or become insecure and refuse to leave your side.

Remember, children usually respond well when their questions are answered honestly, openly and when they feel they're being given time especially for them.

  • Try to understand what it is that they fear will happen. This will help you to decide what information they can handle and how they should hear it.
  • Talk about feelings as well as facts.
  • Give simple, honest answers to their questions and correct anything they've got wrong. You may like to ask a health professional to answer some of their questions.
  • Try to explain what will happen next.
  • Reassure them that even if things aren't good at the moment there will be better times.
  • Don't make promises you may be unable to keep.
  • See that their lives stay as ‘normal' as possible - for example, a friend or relative may help you to keep up with after-school activities.
  • Encourage children to keep in contact with their friends: they can be a great support.
  • It may help if a favourite relative or friend can devote extra time to the children who need comfort and reassurance, affection, guidance and discipline. This helps to ease your load.
  • Contact the hospital social worker to ask about talking to children about cancer and death and dying.

'Even though we told them what was happening all along, there came a time when I had to tell the children that Dad was going to die. My son couldn't believe it. I kept reassuring them both, "I will be here for you. I will do all I can. We will be together." I don't know whether I did it right or not, but they're OK now.'

Adult children have to deal with the fact that a parent or sis-ter or brother has cancer as well as with the responsibilities of adulthood. They will have mixed emotions, loyalties and coping abilities. Be aware of this and look for signs that an adult child needs a little extra support and encouragement.

The nurses at the Cancer Council Helpline can help you with strategies to help children adjust. Call 13 11 20.

Accepting and encouraging support from friends and family members

One or two people within your circle of friends and family will know how to respond and provide support and will do so in a sensitive manner. But most people will probably fall somewhere between being loyal friends and being ‘avoiders'. 

'It was a great comfort knowing I could tell my friend of 15 years how I felt. It didn't matter whether I wanted to laugh or cry, she was just with me.'

Sometimes the people you expect to be around for you are not.

'I couldn't believe my own sister: I was lucky if she rang 6 times during the 4 months I was at home caring for my son. Most times it would have been better if she didn't call at all - she was always in a hurry and couldn't talk for long.'

There are many reasons why friends and family don't call. They might not know how to respond to a change in appearance of the person with cancer. They may want to avoid thinking about their own death. They may think that to see you means they also have to see the person with cancer.

They may be afraid of saying the wrong thing, so instead they say nothing. Their absence doesn't always mean they don't care; they may just feel unable to deal with the situation.

Try giving them a call. Let them know what is happening and ask them to do a particular task, like cooking a meal or returning overdue DVDs. This makes a person feel useful and next time they might feel able to call you or just drop in. People sometimes need to be told how they can help.

It may be difficult for you to accept help, especially if you're used to managing everything. See it as a strategy for getting through a difficult time. You may choose to think of your requests as letting others feel useful, rather than asking for help. Think about it this way: if you were a business and couldn't keep up with an increase in orders, you'd bring in extra workers to help until you caught up.

Coping with loss and grief

Everyone has loss in their life. However, if you're caring for someone with advanced cancer you may go through many changes and losses quickly and often. You may feel losses that those close to you don't seem to notice. This can be difficult to cope with.

Grief is the normal reaction to any painful loss. Grief affects your day-to-day life: physically, emotionally, socially and spiritually. You can feel very alone, isolated, unwell and even like you're going mad.

You may grieve about how things used to be with the person you're caring for or your loss of time and ability to enjoy life as you used to.

You may be starting to grieve the loss of the person you're caring for. Your emotions can go from feeling very caring and protective to feelings of anger and resentment about what you have lost or may lose.

Everyone deals with loss in their own way but there may be things that you can do to help. Acknowledging your grief and knowing that it's okay to cry or feel angry helps many people feel more in control.

Most carers find it helps if they feel supported by those around them. Don't be afraid to ask for help or let those close to you know how you're feeling. For more information about coping with loss and grief and how to get support, call the Cancer Council Helpline on 13 11 20.

How cancer can affect relationships

Cancer can strengthen a relationship or strain it.

'The hardest part for me to handle was the way she dealt with it emotionally. She became angry that it was happening to her, then she seemed to give up - lose her will to fight. I didn't know what would happen next.'

Most carers want to 'be there': to be supportive and to let the person know they're loved and needed no matter what.

'I wanted him to know we were in this together, as a team.'

You may find that you begin to ‘practise' how you'll manage if the person with cancer dies. This is quite normal, but watch for signs that you're excluding them from everyday events and decisions.

Try to be open and honest. Test the waters before starting a complex or emotional discussion. If you begin to feel there's never a good time, perhaps a counsellor or social worker can talk with you about your relationship, the disease and your feelings.

You could see a private counsellor or psychologist, for a fee, or get a referral to a counsellor or psychologist at your hospital. Your local palliative care service may provide counselling. The Cancer Helpline can also put you in touch with a suitable counsellor.

Body image and intimacy

Over the years, each of us develops an image in our mind about our body. Many of us aren't completely satisfied with this image, but usually we're comfortable with it when with someone we love.

Body image is part of feeling sexually attractive to our partner. But for the person with cancer, the good feelings about their physical appeal can be destroyed by surgery, hair loss, radiation burns, the loss of a body part or even fatigue. When people believe they're unattractive, they often anticipate rejection and avoid physical contact with the people they're closest to.

'For a brief time she considered not having her breast removed. She thought it would make her "even less of a woman": she already had some scars and hated them.

Remind them it's not just their body that's attractive to you. Many other qualities make up the person we love: their sense of humour, kind heart, honesty or a certain calmness. None of these changes when the body looks different.

For many carers, sexual intimacy is not important. Instead, carers are concerned about the other person's wellbeing, the treatment and how to show their love and support in the best way.

'He was more worried about the bag than me. I wanted the doctors to do what was necessary to remove the cancer from his bowel and if that meant a colostomy bag so be it - I don't love him any less. At least I wasn't planning a funeral.'

For some people, a physical relationship is very important and they're sad when it stops.

'We hadn't been intimate for probably about 2 years. I found that very hard to take because I liked the physical aspects of our relationship. I just had to respect her wishes and stay away from her, which I found very hard because I loved her so much.'

You may feel awkward about a change in your partner's body. You may ask yourself, ‘Am I being insensitive?' The answer is no; you're in a new and difficult situation. 

'I felt like I should've been more understanding - no, maybe stronger. I should've been braver and not so scared about the scar.'

You may like to talk to a professional counsellor about your reactions to your partner or the disease. Do everything you can to maintain bonds of closeness and caring. Together, you can deal with problems as they occur and prevent misunderstandings.

Physical contact doesn't have to mean sex; there are many other ways to express love and affection. If you feel your partner is hesitant, reach out gently and ask them for a hug or to hold them close while in bed. More than words, actions like these tell your partner that they're still loved and desired. It also says that cancer can't destroy love. 

Putting on a brave face

'I found myself consoling my wife, being strong for her, supporting her while holding my own feelings in.'

This is a common reaction - you don't want to add to the worries of the person with cancer by appearing to be ‘weak'. But no-one can be strong all the time. Expressing and sharing feelings can be helpful for everyone. This is a time to learn how the other person feels and show how much everybody cares. Don't be afraid to admit that the situation is tough for you, too. 

Depression

Some carers become depressed. This is a normal response to a stressful and upsetting situation. You'll almost certainly find that you have bad days, when nothing seems to go right and your problems seem to be overwhelming. For many people, these bad days will be relieved by days where, even though things are not perfect, there's still some joy and calmness.

If you find that you're not feeling any pleasure, that you're stressed, irritable, teary or ‘blue' almost all the time, that you can't sleep or have lost your appetite, you must tell your general practitioner.

It's perfectly normal for you to feel depressed, given the situation you're in. However, it's unnecessary and bad for you to have these feelings continue for days or weeks.

Your doctor may be able to help you just by talking about ways of dealing with your feelings, or may refer you to a counsellor, psychologist or psychiatrist. They may also recommend medication for a period of time.

People with advanced cancer also can become depressed. If you notice symptoms of depression in the person you're caring for, discuss whether they'd like to see a counsellor or doctor.

Cancer and religious or spiritual beliefs

Cancer and its effects may challenge long-held beliefs, or encourage new and stronger beliefs.

If you're struggling with your religious or spiritual beliefs, it's usually best to admit that you're struggling and you don't have all the answers. If the person with cancer is struggling, try to just listen. It's difficult to fully understand someone else's spiritual distress.

Some people find that the ordeal of cancer brings new strength and hope in religious or spiritual beliefs. You may wish to contact a church, mosque, synagogue or other place of belief and worship. Often someone with similar religious beliefs can help you with difficult questions such as, ‘Why is this happening?' and ‘What have we done to deserve this?

Some people feel no desire to pursue religion or spirituality at this point. This is personal. Only you can decide what's helpful for you.

General tips for carers

These ideas are from people who've cared for someone with cancer.

  • Use an answering machine or service. Friends and family want to be kept informed of what's happening but this means you have to keep repeating the latest news. Try recording a daily message so that people are kept up to date. You can return calls when it suits you. Ask someone to return calls if you're tired or don't feel like talking.
  • Turn off the phones and have a nap when the person with cancer is resting.
  • Ask someone to take on the role of ‘information provider'. Make sure this person has the latest information and ask them to deal with phone calls and emails. Family and friends' needs are important. Group emails, sent regularly, are a great way to let people know what's happening.
  • Give yourself permission to take ‘time out'. You'll have periods of feeling exhausted, overwhelmed and worn out. This is not surprising: you're carrying a heavy load. Have some time just for you. Take a book and sit outside, walk around the park with the dog or go for a drive and stop at an interesting shop. It's important to do things just for you.
  • Make a list of 10 things you like to do and make sure you do one each day.
  • Talk to people you trust about what's happening. It helps them to understand what you're going through, and helps you because your feelings are less ‘bottled up'.
  • Remember that you will never be able to do everything, no matter how hard you try. Balance is important. Do some things for the person with cancer, some things for others and some for yourself. If you're worried about the things you can't do, ask someone else to help: that way, everything that needs to be done gets done.

Back to top

for