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The Caregiver’s Emotional Journey

78805451_8Every person dealing with head and neck cancer will probably need some extra help at home at some point. Depending on treatments, he or she may need quite a bit of help. Even patients who have professional in-home health care services need informal caregiving from family and friends. You may be a friend who brings meals by from time to time, or you may be a spouse who gives care around the clock. Every act of care helps and can have great meaning to a person fighting cancer. Even if you can only do a little, it may make a big difference to your friend or loved one.

Being the primary caregiver, though—the main person on whom the patient depends for daily assistance—is often far more difficult than most people realize. If you are a primary caregiver, you will help with the person’s everyday needs, which might include making meals, picking up medicines, helping with bathing and hygiene, going to doctor’s office visits and providing emotional support. It’s a vitally important part of your loved one’s treatment.

Providing this type of care and comfort means your life is likely to change quite a bit. Most primary caregivers are the spouses, partners, parents or children of the person who is ill. About 20 percent of caregivers quit work or make major life changes to care for a family member with a serious illness.1 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. So for many caregivers, caregiving becomes a full-time job. Consequently, financial difficulties often add to caregivers’ and patients’ stress as well.1 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.

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It is normal as a primary caregiver to put your own needs and feelings aside. It is also very common to forget to take care of yourself, thinking your suffering is not important in comparison to your loved one’s struggle to survive. However, you must remember that if you don’t take care of yourself, you may not be able to care for your loved one. You will have your own physical and emotional challenges, and you should not ignore your own needs. In fact, older caregivers have a 63 percent higher risk of having life-threatening illnesses themselves than people the same age who do not have caregiving responsibilities.1 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. You must care for your own physical and mental health without guilt. The person for whom you are caring, plus other family members (in particular, children if you have them), need you to be healthy and strong.

The caregiver’s emotions

There are many challenges you and your family member with cancer may deal with together. These include accepting and understanding the diagnosis, dealing with changes in your relationship and in the family, handling issues with intimacy, dealing with recurrence and coping with death and dying. Throughout your loved one’s cancer journey, stay aware of your own mental and physical well-being and talk to your own health care team when you need to.

About half of cancer caregivers experience significant emotional distress as a direct result of caregiving.3 Rosenberger C, Hocker A, Cartus M, et al. Outpatient psycho-oncological care for family members and patients: access, psychological distress and supportive care needs. Psychother Psychosom Med Psychol.2012 May;62(5):185-194. Epub 2012 May 7. Thirteen percent meet the requirements for a psychological disorder such as panic attacks, major depression, post-traumatic stress disorder (PTSD) or generalized anxiety disorder.1 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. Twenty-five percent of caregivers seek professional help for mild or major psychological distress.1 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. It is likely that far more than that number could benefit from treatment by mental health professionals.

Caregivers generally have the most distress and the greatest difficulty adjusting emotionally during the six months following diagnosis.2 Longacre ML, Ridge JA, Burtness BA, Galloway TJ, Fang CY. Psychological functioning of caregivers for head and neck cancer patients. Oral Oncol. 2012 Jan;48(1):18-25. Other particularly high-stress times for caregivers are when cancer comes back and when the cancer becomes terminal. If you have more social support, that can lead to better psychological health for you.2 Longacre ML, Ridge JA, Burtness BA, Galloway TJ, Fang CY. Psychological functioning of caregivers for head and neck cancer patients. Oral Oncol. 2012 Jan;48(1):18-25. If you are in a healthier frame of mind and coping more effectively, your loved one with cancer can benefit as well. An emotionally healthy caregiver gives a cancer patient a better chance at a positive treatment outcome.3 Rosenberger C, Hocker A, Cartus M, et al. Outpatient psycho-oncological care for family members and patients: access, psychological distress and supportive care needs. Psychother Psychosom Med Psychol.2012 May;62(5):185-194. Epub 2012 May 7.

Note that caregiving does not end on the day treatment ends. Even after the person you are caring for is declared cancer-free, you may continue to have some caregiving responsibilities and feel some emotional distress. Thirty-eight percent of caregivers continue to feel a moderate to high level of distress several months after treatment ends.2 Longacre ML, Ridge JA, Burtness BA, Galloway TJ, Fang CY. Psychological functioning of caregivers for head and neck cancer patients. Oral Oncol. 2012 Jan;48(1):18-25. This is mostly due to fear of cancer recurrence (returning) in their loved ones and/or continuing adjustments to their loved one’s disfigurement.2, Longacre ML, Ridge JA, Burtness BA, Galloway TJ, Fang CY. Psychological functioning of caregivers for head and neck cancer patients. Oral Oncol. 2012 Jan;48(1):18-25.4 Ross S, Mosher CE, Ronis-Tobin V, Hermele S, Ostroff JS. Psychosocial adjustment of family caregivers of head and neck cancer survivors. Support Care Cancer. 2010 Feb;18(2):171-178.

If you feel that you are having emotional issues that you cannot handle on your own, and these problems are harming you or the person for whom you are caring, seek professional help. Sixty-seven percent of caregivers who receive mental health services ask for it themselves.1 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.

It’s a great honor that I was able to care for him, and we got through this together.Bonnie S. (wife of a tonsil cancer survivor)

Navigating the caregiver’s emotional journey

This website contains many articles about specific aspects of your emotional journey that you might find helpful. They fall into the following categories:

The Impact of Diagnosis

When your loved one is diagnosed with cancer, there’s no right or wrong way to react. Most caregivers experience significant emotional distress when they find out about a loved one’s diagnosis of head and neck cancer. This section addresses how to handle a diagnosis.

Changes in The Family

Family roles and relationships are likely to be challenged and changed when a family member has cancer. This section helps address the need for communication and support within the family.

Issues with Intimacy

Side effects from cancer and cancer treatments can change intimacy with your partner. Physical exhaustion and psychological distress also make relationships more challenging. Learn more about these challenges in this section.

Caring for Yourself

Being an effective cancer caregiver includes caring for your own health and emotions. Learn more about caring for yourself so you can be an effective caregiver for the patient.

Dealing with Recurrence

Cancer recurring in your loved one is one of the most difficult crises you might handle together. In this section you can learn about your options if it happens to the person for whom you are caring.

Coping with Death and Dying

Grieving the loss of a loved one can be a long and personal process. Here you will find some coping strategies that can ease the pain a bit and help you to adjust to your loss.

Resources

Use these websites and books to help you stay strong during your role as a caregiver.


References

1 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.

2 Longacre ML, Ridge JA, Burtness BA, Galloway TJ, Fang CY. Psychological functioning of caregivers for head and neck cancer patients. Oral Oncol. 2012 Jan;48(1):18-25.

3 Rosenberger C, Hocker A, Cartus M, et al. Outpatient psycho-oncological care for family members and patients: access, psychological distress and supportive care needs. Psychother Psychosom Med Psychol.2012 May;62(5):185-194. Epub 2012 May 7.

4 Ross S, Mosher CE, Ronis-Tobin V, Hermele S, Ostroff JS. Psychosocial adjustment of family caregivers of head and neck cancer survivors. Support Care Cancer. 2010 Feb;18(2):171-178.