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Caring for someone with cancer

How relationships change

Taking on a caring role often changes relationships. For many carers, a cancer diagnosis affects the established roles they have with their partner, parent, friend, dependent or adult child or sibling, and this can be a challenging adjustment.

The effect of cancer on a relationship varies, and the impact often depends on what your relationship was like before the cancer diagnosis. Some carers find the opportunity to care for someone strengthens the relationship with the person they are looking after.

For others, particularly those who had a strained relationship before the diagnosis, the pressure of a cancer diagnosis and treatment and the demands of caring add further tension. In this case, you may find it best to share the caring role with other people so you are not the full-time carer (see Caring for yourself).

It can be helpful to understand the potential changes that cancer can bring. This chapter discusses ways a relationship may change, and how to manage these changes.

How cancer can change your relationship

  • I might need to take on new responsibilities that will reverse our roles.
  • If I'm doing all the caring, they may feel like they've lost their independence.
  • I may feel like it would be selfish to talk about my needs when they are having to go through cancer treatment.
  • The intimacy we shared might be replaced by the caring role.
  • We might need to re-evaluate our priorities and set new goals.

Ways to manage changes in your relationship

  • Talk about the changes to avoid misunderstandings. Discuss ways to meet each other's needs.
  • Allow time to get used to the changes, particularly if roles have reversed.
  • Set boundaries to maintain independence and allow both of you to feel in control.
  • Arrange home help if you feel uncomfortable doing the bathing and dressing.
  • Give the person you're caring for the chance to do things for themselves.
  • Use touch to show you care.

Support for LGBTI carers

Lesbian, gay, bisexual, transgender or intersex (LGBTI) people may face specific challenges as carers. They may worry about the family of their partner or friend accepting them, or wonder if support services are LGBTI-friendly. You can ask your local Carers Association (see page 66) what support is available for LGBTI carers in your area. Another option is to visit qlife.org.au. QLife is a national counselling and referral service for LGBTI people.

Changes in sexuality and intimacy

If you are caring for a partner, you may find the cancer and its treatment affects your sexual relationship. This will depend on the type of cancer, the treatment and its side effects.

  • Tiredness can make people lose interest in sex during and after treatment. This is called a lowered libido.
  • Cancer treatments, medicines and pain can also reduce libido and may affect someone's physical ability to have sex.
  • A person's body image may change after treatment, making them feel self-conscious and embarrassed.
  • The emotional strain of cancer or caring may preoccupy you and cause you to lose interest in sex.
  • Many people worry that physical intimacy might be painful.
  • You might find it hard to switch from being patient and carer
  • back to being sexual partners.

There are various ways to help manage sexual side effects and maintain intimacy during and after cancer treatment.

How to manage sexual changes

  • Remember that the best sexual tool is communication.
  • Restore the intimacy in your relationship by spending time together. If your partner is well enough, you may be able to go to the cinema or out to dinner. Otherwise, watch a movie at home, give each other massages, do a crossword together, look through old photo albums, or talk about how you first met.
  • Tell your partner you care. Your partner may need reassurance that you love them and find them attractive despite the physical changes from their illness or treatment.
  • Discuss any concerns you have about being intimate with your partner. If you keep quiet and withdraw, your partner may misinterpret your distance and think they're no longer desirable. Being open with your partner about your sexual needs can help you identify changes to make.
  • Keep an open mind about ways to give and receive sexual pleasure, especially if your usual ways of lovemaking are now uncomfortable or not possible. Some people find lubricants or sexual aids help. For a while, you may need to focus on kissing and cuddling.
  • Take things slowly and spend time getting used to being naked together again.
  • Be patient. You may find that any awkwardness will improve with time and practice.
  • Talk to a counsellor who specialises in helping couples with intimacy and sexual issues. The occupational therapist on your treatment team can suggest practical strategies for positioning and fatigue management.
  • For a free copy of Sexuality, Intimacy and Cancer, call Cancer Council on 13 11 20 or find it on the website of your local Cancer Council.

If your caring role ends

Many people find that the most challenging time in their caring role is when treatment finishes. As the person you're caring for starts to get better and tries to resume their usual activities, you could feel a bit lost or not needed anymore. They may even appear to have forgotten how much time and effort you gave. This can be hurtful, but they probably don't realise how you are feeling.

You may be surprised that the person who has had cancer does not seem happy or relieved that they have been given good news. However, this can actually be a difficult time emotionally, and cancer survivors sometimes experience depression as they adjust to the "new normal". It is important to communicate openly about how you are both feeling.

Carers often expect to slip back into day-to-day life as it was before they took on the caring role, but this may not be straightforward. You might feel you are still waiting for the next setback. Your life may also have changed. Going back to work or resuming other responsibilities can be overwhelming. Do things at your own pace and give yourself time to adjust. You might be able to return to work part-time or take on fewer responsibilities.

Talking about your feelings with someone you trust can help. Studies show that caring often brings positive changes in life philosophy, relationships and personal growth. However, not everyone finds the caring experience to be rewarding and life-changing. You may need time to reflect on the experience and work out what it has meant to you.

Expert content reviewers:

Tina Chivende, Social Worker, Cancer Psychosocial Service, Canberra Region Cancer Centre, ACT; Gabrielle Asprey, Telephone Support Group Facilitator, Cancer Council NSW; Dr Ben Britton, Senior Clinical and Health Psychologist, Calvary Mater Newcastle and John Hunter Hospital, and Conjoint Lecturer, School of Medicine and Public Health, University of Newcastle, NSW; Valmai Goodwin, Psychologist, Cancer Counselling Service, Cancer Council QLD; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Zoe Mitchell, Senior Social Worker, Palliative Care, Fiona Stanley Hospital, WA; Amber Rose, Consumer; Carolina Simpson, Policy and Development Officer, Carers NSW.

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