Caregiving

This section will address issues relevant to melanoma cancer caregivers, from managing their own mental health to navigating the medical system.

The Canadian Cancer Society (CCS) says:

‘If you’re feeling pressured into becoming a caregiver, it’s best to be honest about how you feel. Respect and speak up for your own feelings, needs and desires, as well as those of your loved one. Decide your limits and let others know so that both you and your loved one get the help you need. It’s normal to be uncomfortable with the idea of giving medicines, giving physical care (such as helping your loved one to the bathroom) or maybe you’re worried about juggling the responsibilities you already have at home or work with this new role. If you talk about it, you can usually work something out. The healthcare team can provide lots of guidance on medicine, or maybe someone else can act as the main caregiver or share the responsibilities with you.’ [1]

Challenges facing melanoma caregivers

A study by Kasparian et al. found that 20-30 per cent of cancer caregivers reported clinical levels of psychological distress [2]. Tan et al. reported that cancer caregivers experience increased responsibilities, poorer physical health and quality of life (QoL), altered daily life, social problems and an enhanced need for information during and after patient treatment and rehabilitation [3].

The same study reported a common concern expressed by caregivers of melanoma patients was being faced new roles and responsibilities related to the treatment of the patient. Some caregivers felt that their ability to care for the patient was inadequate— this included ‘not doing enough or being unable to do enough, doubts about caring abilities, being overprotective and feelings of helplessness in the caregiver role’ [4].

In terms of survivorship, the study reported, the remaining physical problem primarily affected patients was lymphedema. This often resulted in reduced independence for the patient and a decreased ability to participate in self-care, work, exercise, hobbies/interests and/or household duties [5]. The same study suggested having training available for caregivers in necessary medical care procedures—such as how to change dressings, carry out massage from lymphedema, and applying compression garments—could greatly reduce the burden on both the patient and caregiver [6].

Your mental health

The toll on the caregiver’s emotional and physical health may be the one of the most challenging aspect of the caregiver’s cancer journey. Trying to care for a partner, a family member or close friend with cancer means that caregivers often begin to neglect their own well-being. This section addresses some of the common health issues and concerns facing caregivers and what they can do to overcome these challenges.

Stress management

It is important to remember that feeling stressed, overwhelmed and anxious does not mean you are failing as a caregiver. Monitoring your own physical and emotional well-being helps you understand your own stress levels. When everything is getting to be too much, you will know it’s time to step back and take a moment for yourself [7].

Knowing your limits and respecting them allows you to provide for your loved one without burning yourself out. Sharing responsibilities with another family member or close friend, making time for yourself, and finding emotional support are all effective ways of managing stress. As a caregiver, you want the best for the person you’re caring for, but your own health must remain a priority in order to provide your loved one with the best care possible [8]. Tan et al. suggests it is important that caregivers have access to therapeutic counselling and respite opportunities to manage feelings of inadequacy, distress or burnout. Support groups or message boards are also an effective way to exchange information with other caregivers, share lived experiences and methods of coping [9].

Signs of caregiver burnout

Monitoring and learning to recognise the signs of caregiver stress and burnout is the first step to recovery. If you’re feeling like you have much less energy than previously, in a constant state of exhaustion and are prone to fall ill often, it is likely you are suffering from caregiver burnout [10]. If your life revolves around caregiving to the point where you have trouble relaxing even when help is available and you are neglecting your own needs, caregiving no longer becomes a healthy option for either you or the person you’re caring for—especially if you are becoming increasingly impatient or frustrated with that person [11].

Thinking strategies

Tan et. al reported many caregivers using helpful thinking strategies to cope throughout the course of the disease. These included adopting an optimistic and hopeful mindset, being rational and rejecting worry, and ‘living for the moment’ [12]. There are many online and offline resources which offer techniques to alter and minimize negative patterns of thinking to help caregivers cope.

Conversations with your clinician

Many patients and some caregivers from the Tan et al. study reported challenges and inadequate care during treatment. Issues such as poor communication with treatment team members and receiving inadequate information, which included information on the consequences of surgery, weighing different options for treatment, self-care procedures and getting referral to other clinicians or specialists impacted both patients and caregivers [13]. ‘He is probably a brilliant surgeon but he was certainly no communicator… we were both scared to ask questions because he answered them with one word,’ one caregiver stated [14].

Asking questions about treatment options, enquiring about the side-effects of certain treatments, or even making suggestions as the patient or caregiver can be incredibly intimidating. The infallible doctor who is never supposed to be questioned is still a common image in our culture. Yet, as an advocate for either yourself or the person you’re caring for, sometimes you have to ask difficult, challenging questions to your healthcare providers. As a starting point, here are questions you can ask your doctor about melanoma:

For patients with newly diagnosed skin melanoma

  • Can you explain my pathology report to me?
  • What stage of melanoma do I have? What is the depth, in millimeters, of the melanoma? Is the melanoma ulcerated? Does my melanoma have mitotic activity?
  • Is it likely that the melanoma has spread? Why or why not?
  • What are my treatment options?
  • Will surgery be able to remove all of the cancer? Will I need additional surgery?
  • After the surgical removal of the melanoma, will I need a skin graft?
  • Should I have a sentinel lymph node biopsy to find out if there is spread to the lymph nodes?
  • What clinical trials are open to me? Where are they located, and how do I find out more about them?
  • What treatment plan do you recommend? Why?
  • What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?
  • Who will be part of my health care team, and what does each member do?
  • Who will be coordinating my overall treatment and follow-up care?
  • What are the possible side effects of each treatment option, both in the short term and the long term? Is there anything we can do to prevent them?
  • How will each treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
  • Could this treatment affect my sex life? If so, how and for how long?
  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?
  • If I’m worried about managing the costs related to my cancer care, who can help me with these concerns?
  • Is the cancer likely to recur following treatment? What steps can I take to reduce the risk of additional new melanomas?
  • What follow-up tests will I need, and how often will I need them?
  • What support services are available to me? To my family?
  • Whom should I call for questions or problems?
  • Are my family members at a higher risk of melanoma?

Additional questions for patients with stage III melanoma

  • How many lymph nodes are affected with melanoma?
  • Will the remainder of the lymph nodes be removed? If yes, what are the potential complications of lymph node surgery?
  • Is there any extra-capsular extension of the melanoma (that is, has the melanoma spilled out of the lymph node)? What does this mean?
  • Is radiation therapy or other treatment recommended after surgery?
  • What are the goals of each treatment? What is my prognosis?

Additional questions for patients with stage IV melanoma

  • Where has the melanoma spread? Is a brain scan or PET scan necessary to determine where it has spread?
  • Is surgical removal of the metastases an option, especially if one or two tumors are present? If so, what are the benefits and risks?
  • What are the goals of each treatment? What is my prognosis?
  • How will side effects and symptoms be prevented and managed, to reduce my discomfort and increase my quality of life?

[15] Information taken from the American Society of Clinical Oncology

[1] “If You’re a Caregiver.” Canadian Cancer Society. Canadian Cancer Society, 23 Mar. 2012. Web. 06 Oct. 2015.
[2] Kasparian NA, McLoone JK, Butow PN. Psychological responses and coping strategies among patients with malignant melanoma: a systematic review of the literature. Arch Dermatol 2009; 145:1415–1427. Web. 6 Oct. 2015.
[3] Tan, Jason D., Phyllis N. Butow, Frances M. Boyle, Robyn P.M. Saw, and Amanda J. O’Reilly. “A Qualitative Assessment of Psychosocial.” Melanoma Research 24.3 (2014): 252-60. Wiley Online. Web. 6 Oct. 2015.
[4] ibid.
[5] ibid.
[6] ibid.
[7] National Cancer Institute. “Caring for the Caregiver.” Journal of Pain and Palliative Care Pharmacotherapy 22.2 (2008): 159-64. National Cancer Institute. US Department of Health and Human Services, Sept. 2014. Web. 6 Oct. 2015.
[8] ibid.
[9] Tan, Jason D., Phyllis N. Butow, Frances M. Boyle, Robyn P.M. Saw, and Amanda J. O’Reilly. “A Qualitative Assessment of Psychosocial.” Melanoma Research 24.3 (2014): 252-60. Wiley Online. Web. 6 Oct. 2015.
[10] Smith, Melinda, and Gina Kemp. “Common Signs and Symptoms of Caregiver Burnout.” Caregiver Stress & Burnout. HelpGuide.Org, Aug. 2015. Web. 06 Oct. 2015.
[11] ibid.
[12] “Palliative Care FAQs.” Long Term Care | Hospice and Palliative Care | Palliative Care FAQs. Canadian Hospice Palliative Care Association, 2015. Web. 06 Oct. 2015.
[13] Tan, Jason D., Phyllis N. Butow, Frances M. Boyle, Robyn P.M. Saw, and Amanda J. O’Reilly. “A Qualitative Assessment of Psychosocial.” Melanoma Research 24.3 (2014): 252-60. Wiley Online. Web. 6 Oct. 2015.
[14] ibid.