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Changes in The Family

21228070A cancer diagnosis creates a range of challenges for all members of the family. Whether your family is just you and your spouse or includes children, parents, extended family and very close friends, cancer will change everyone’s daily routines and affect their emotions and relationships. Family members might experience changes in roles and responsibilities, greater emotional needs and financial challenges. Because every individual has unique ways of communicating and coping, trying to understand the impacts and needs of each family member may help maintain and strengthen relationships during this difficult time.

How your family has dealt with difficult challenges in the past will probably influence how they handle the diagnosis of cancer in someone they love.1 Family matters. Taking Time: Support for People with Cancer. National Cancer Institute. http://www.cancer.gov/cancertopics/takingtime/page3. If your family has learned some coping, communication and cooperation skills from past experiences, they will likely put those skills into action again and adapt relatively well to the changes cancer brings. If your family was having trouble (such as a separation or divorce) before a family member was diagnosed with cancer, dealing with the cancer diagnosis and treatment may be even more challenging than for others and cause problems to worsen. Some people can’t handle the stress of cancer and withdraw or won’t help. Even when a family is troubled or relationships are strained, though, many families discover that they can find ways to work together and support each other. There are many ways to provide support and care among family members. If your family is able to be flexible about family roles, work and other responsibilities, it will help all of you to cope and support each other better.1 Family matters. Taking Time: Support for People with Cancer. National Cancer Institute. http://www.cancer.gov/cancertopics/takingtime/page3.

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Changing roles

It can be difficult to take on new roles or to give up old ones that are a part of your identity. For example, if the cancer patient has a strong personality and had a self-perception as the family’s leader, it may be very difficult for him or her to be cared for. Similarly, if you have school-age children, you may be hesitant to ask them to take on responsibilities that seem too emotionally or physically difficult for them. If you’re an adult child taking care of a parent with cancer, it may feel very strange at first to have your roles essentially reversed. If your spouse has cancer, you might find that you must continue all of your old roles plus your spouse’s roles, all on top of work and caregiving. Most families surprise themselves and each other with their ability to take on new roles and responsibilities. Finding out about each other’s strengths in this way can be a very positive experience in the long run.

It is a good idea to have regular family meetings to talk about each person’s feelings, needs and ability and willingness to take on new roles and responsibilities. Make continual adjustments to help share responsibilities and take care of the caregivers when necessary. When it gets to be too much, don’t hesitate to reach out to friends, neighbors, members of your house of worship and others. You may be surprised at how willing some people are to pitch in and help your family get through its challenges. Also ask your care team for advice about getting help from professional caregivers and volunteers. Family members need to work and continue their social activities whenever possible for their own well-being, and help from part-time or full-time professional caregivers can make it more possible to establish a new sense of normalcy around the family’s routines and activities.

Group communication in providing medical updates

Extended family and friends can unintentionally add to the immediate family’s burden by wanting constant updates about the cancer patient’s health. It can be stressful and time-consuming to contact every friend and family member following each test result or doctor appointment. There are some ideas you can try to help make sure the word is passed on without a huge amount of work:

  • Use this website to create and share a guidebook for your loved one’s specific cancer type and treatments as well as keep an online journal of everything that is going on.
  • Create a phone tree. This way you can call one person, and they can call the next person in line.
  • Using social media websites, such as Facebook, can be an easy way to keep family and friends informed.

Keeping extended family members and friends informed and involved is an important part of maintaining relationships and emotional support for the family and for your family member with cancer. Cancer patients with larger social networks have a better recovery rate than those who don’t.3 Kroenke CH,Quesenberry C,Kwan ML, et al. Social networks, social support, and burden in relationships, and mortality after breast cancerdiagnosis in the Life After BreastCancerEpidemiology (LACE) Study. BreastCancerRes Treat.2012 Nov 10.

Helping family members in crisis

At various points in the cancer journey, family members may experience emotional crises.2 Hodges LJ, Humphris GM, Macfarlane G: A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med. 2005;60(1):1-12. Sometimes you might feel as if you are all “falling apart” in your own ways, and all at the same time. It is not uncommon for family members to become angry or resentful about the sacrifices they are required to make and the ongoing pressure that exists from caregiving. It is also fairly common for religious or spiritual family members to experience a crisis of faith. You may lash out at each other, make hurtful comments or withdraw. This is normal, particularly when you receive bad news or experience financial difficulty. Sometimes family members go into crisis with no particular trigger. As time goes on, it becomes more difficult to see a loved one’s suffering, and it may feel like cancer has been the center of everything forever in your home; sometimes family members reach a breaking point and feel like they don’t have the strength to deal with it anymore.2 Hodges LJ, Humphris GM, Macfarlane G: A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med. 2005;60(1):1-12. When this happens, communication and understanding are critical. If it is possible, let a family member in crisis take a break and go away for a bit. Perhaps children could visit a relative, or a spouse take some time away. Maybe an adult child could stay with his or her parents for a weekend or you could consider getting help from paid caregivers or volunteers.

Getting help from outside the family

Factors that can help family members cope with household changes associated with cancer care include social support, financial security and stability at work.1 Family matters. Taking Time: Support for People with Cancer. National Cancer Institute. http://www.cancer.gov/cancertopics/takingtime/page3. These can be difficult to achieve or maintain if the cancer journey is long. About 20 percent of caregivers quit work or make major life changes to care for a family member with a serious illness.4 Vanderwalker LC, Laff RE, Kadan-Lottick NS, et al. Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. J Clin Oncol.2005 October 1;23(28):6899-6907. Consequently, financial difficulties often add to the family’s distress. There are organizations that can help you raise funds to help with health care expenses and lost wages. A social worker may be able to put you in touch with such an organization or help you find and apply for government assistance.

Over the course of time, social and emotional support from extended family and friends can gradually decrease, leaving the family feeling more isolated.1 Family matters. Taking Time: Support for People with Cancer. National Cancer Institute. http://www.cancer.gov/cancertopics/takingtime/page3. When this happens, having a plan can help the family continue to cope. For example, you may be able to get home health care services through your insurance or with government assistance. Some nonprofit and religious organizations also have volunteers who do home visits to help families in need. If you or members of the family simply need a short break from caregiving, there is respite care available through most insurance plans or with government assistance. Respite care provides paid in-home care for the patient so that caregivers can rest and have a bit of time for themselves to take care of their own needs. Ask your care team or a social worker about respite care if you or other family members need temporary relief from the stress and demands of caregiving.1 Family matters. Taking Time: Support for People with Cancer. National Cancer Institute. http://www.cancer.gov/cancertopics/takingtime/page3.

The most obedient person in our family was the dog. The dog followed me in the walker step for step and did not leave my side the whole time I was home alone. The dog was a caregiver, too. He kind of knew.Barry W. (palatomaxillary and low grade adenocarcinoma of minor salivary gland cancer survivor)

References

1 Family matters. Taking Time: Support for People with Cancer. National Cancer Institute. http://www.cancer.gov/cancertopics/takingtime/page3.

2 Hodges LJ, Humphris GM, Macfarlane G: A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med. 2005;60(1):1-12.

3 Kroenke CH,Quesenberry C,Kwan ML, et al. Social networks, social support, and burden in relationships, and mortality after breast cancerdiagnosis in the Life After BreastCancerEpidemiology (LACE) Study. BreastCancerRes Treat.2012 Nov 10.

4 Vanderwalker LC, Laff RE, Kadan-Lottick NS, et al. Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. J Clin Oncol.2005 October 1;23(28):6899-6907.