| Caring for someone | Cancer that has advanced | First reactions |
| Dealing with changes | Palliative care | Common symptoms |
| Unproven remedies | Death and dying |
Everyday care of children and other family members
Accepting and encouraging support from friends and family members
How cancer can affect relationships
Cancer and religious or spiritual beliefs
Most relationships touched by cancer change. How these changes are handled is determined to a great extent by how you and your family have coped with things in the past.
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 how physically able the person with cancer is and whether or not they are having treatment.
As a carer it is important not to associate physical illness with mental failing. People with cancer have the same needs and often the same capabilities as before. If they are physically capable and willing, people with cancer need to participate in the normal range of activities and responsibilities, right down to doing the dishes. Helplessness-or worse, an unnecessary feeling of helplessness-are pressing problems for people with cancer.
'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 a difficult and tiring adjustment, especially if they are not used to it. Some female carers continue with household responsibilities and increase or take on work outside the home. This is equally tiring and stressful.
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 are shown, especially if they have professional support. When you are ready, a range of home nursing services are available to help. So if the person you are caring for requires 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!'
Carers with children who still need looking after, or carers who have other family members who are ill, will certainly need outside help. This type of help does not always have to be a financial burden.
You may need time off work to attend medical appointments or to care for the person with cancer. Let your employer know what you are 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 is ahead. Some employers will let you take annual leave, long service leave or leave without pay.
If time off is not 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 assistance, contact Centrelink. The hospital social worker will also be able to put you in touch with sources of financial assistance.
Children often have difficulty adjusting to cancer in the family, especially if it affects a parent or brother or sister. It is particularly 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.
'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 are OK now.'
Adult children are in the unenviable position of having to deal with the fact that a parent or sister or brother has cancer as well as with the responsibilities of adulthood. They will have mixed emotions, loyalties and coping abilities. In some respects they thrive on being regarded as an adult, but during times of illness in the family it can be really hard going. Be aware of this and look for signs that an adult child needs a little extra support and encouragement.
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 six times during the four 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 do not call. They might not know how to respond to a change in appearance of the person you are caring for. 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 necessarily mean they don't care; they may just feel ill equipped 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 videos. 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 are 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. If you were a manufacturer and couldn't keep up with an increase in orders, you would bring in extra workers to help until you caught up.
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 are 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 will manage if the person with cancer dies. This is quite normal, but watch for signs that you are excluding him or her from everyday events and decisions.
Try to keep communication open and honest. Be sensitive to signs of a 'bad day' or a bad mood. Test the waters before launching into a complex or emotional discussion. If you begin to feel there is never a good time, perhaps a counsellor or social worker can help you work out your reactions toward your relationship, the disease and your feelings. Alternatives include seeing a private counsellor or psychologist, for a fee, or getting 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.
Over the years, each of us develops an image in our mind about our body. Many of us are not completely satisfied with this image, but usually we are 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 are unattractive, they often anticipate rejection and avoid physical contact with the people they are 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.
When someone is unhappy with the way they look it is worth reminding them it is not just their body that is 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 way down on the priority list when told of the cancers return. Instead, carers are concerned about the other person's wellbeing, the availability and possible success of 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 are sad when it stops.
'We hadn't been intimate for probably about two 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 respond negatively to the disfigurement or debilitation caused by cancer and its treatment and feel unable to provide support. You may ask yourself, 'Am I being insensitive?' The answer is no, you are responding to a difficult situation and may just need some assistance to work through these feelings.
'I felt like I should have been more understanding-no, maybe stronger. I should have been braver and not so scared about the scar.'
Perhaps a professional counsellor can help you work out your reactions to your partner, the disease or feelings of hesitancy. Make sure you are doing everything you can to maintain bonds of closeness and caring. Together, try to prevent a cycle of misunderstanding from developing.
Physical contact doesn't have to equal sexual intercourse; there are many other ways to express love and affection. If you feel your partner is hesitant, reach out gently and repeatedly if necessary and ask them for a hug or to hold them close while in bed. More than words, actions like these show love and express your belief in the person's continued desirability as a physical being. It also says that cancer cannot destroy love.
'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. It is an opportunity 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.
Some carers experience depression. This is a normal response to a stressful and upsetting situation. You will 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, you are still able to experience some joy and calmness.
If you find that you are not feeling any pleasure, that you are stressed, irritable, teary or 'blue' almost all the time, that you cannot sleep or have lost your appetite, you must tell your general practitioner. It is perfectly normal for you to feel depressed, given the situation you are in. However, it is 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. He or she may also recommend medication for a period of time.
Cancer and its consequences may challenge long-held beliefs, or encourage new and stronger beliefs.
If you are struggling with your religious or spiritual beliefs, it is usually best to admit that you are struggling and you don't have all the answers. If the person with cancer is struggling, try to just listen. It is 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 like, '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 and only you can decide what is helpful for you.
These ideas are from people who have cared for someone with cancer.
Updated March 2005
