A cancer diagnosis takes the patient, caregiver and friends and family members into unfamiliar territory. For many, the journey will end with remission; in some cases, patients will live for many years with cancer as a chronic condition, managing the disease with an increasing array of treatment options; and, for some, the journey will ultimately lead to end-of-life, or palliative care. When this transition between managing treatment and facing grief occurs, patients and loved ones are again faced with a strange landscape, requiring each individual to discover coping strategies.
“Grief and mourning are considered one of the hardest experiences of life,” says Hanna Johnson, Clinical Social Work Care Manager at Cancer Treatment Centers of America® (CTCA) in Newnan, Georgia. With more than 12.5 million Americans currently living with or having previously battled cancer (according to 2009 statistics from the National Cancer Institute) “it’s undeniable that millions of people and their family members have experienced some form of loss during their journey with cancer,” Johnson says. “No one is immune to experiencing loss.”
Defining Grief and Loss
Though the terms “grief”, “bereavement” and “mourning” are sometimes used interchangeably, Johnson says that the definition of bereavement is distinctly different from the definition of grief and mourning. “Grief and mourning are both used to describe the personal internal and external emotional and affective processes of reacting and adapting to a loss, while bereavement is the time period following a loss where a person experiences grief and mourning.” So, while a patient may experience feelings of grief, the caregiver will experience both grief and bereavement.
According to Johnson, grief-inspired feelings can include a host of emotions, including: sadness, anger, guilt, anxiety, loneliness, fatigue, helplessness, shock, yearning, emancipation, relief or numbness. Physical reactions, she says, can be equally diverse: a hollowness in the stomach, tightness in the chest or throat, muscle weakness, feeling breathless, a lack of energy or dry mouth. Some people may have an oversensitivity to noise, while others might feel a sense of depersonalization, where nothing feeling or seeming “real.”
The bereaved may also exhibit behaviors that include: sleep and appetite disturbances, absentminded behavior, withdrawing from others, and either avoiding any reminder of the deceased or, in contrast, visiting places or carrying or treasuring objects that serve as reminders are other typical grief responses.
Patients and Grief
No one knows how they will respond when they are told that the only treatment option remaining focuses on palliative care. There is no way to prepare for the reality of that scenario, and it is difficult to face, even with a strong support network.
Despite the unique responses that arise among patients confronting this news, there are some commonalities, according to Reverend Suzanne Lehey, MAR, chaplain at CTCA® in Phoenix, Arizona. “Most often patients feel sadness, followed by anger and fear,” Lehey says. “Additionally, some patients feel regret over the way they have chosen to live their lives or spend their time.”
Remaining open about the feelings that surface at this time and communicating openly with family and the care team about their emotions and their wishes can help ease patients’ stress.[i] In addition, patients can often find support and emotional relief through support groups (both online and in person), their faith community (or from a hospital-based chaplain) and from experts who are trained to work in cancer care, such as oncology social workers, health psychologists or counselors.[ii]
At CTCA, Lehey says, patients confronting the transition to palliative care are offered grief counseling to help navigate this time of transition. Mind-body therapists, pastoral care staff and social workers are all available to provide insight and support and help patients acknowledge and honor their desires for end-of-life planning. CTCA also connects patients and their families with counseling and hospice services in their community.
Caregivers and Grief
Caregivers who have accompanied and supported a loved one through a cancer journey have learned to cope with the new territory of diagnosis and treatment. When a patient transitions to end-of-life care, caregivers must again adjust to a new reality as they confront the loss of their loved one and learn to work through the grieving process.
It can sometimes be challenging for caregivers to provide support for the patient at this time, since they too are grieving the impending loss. Unsure what to say or do, they may retreat from the situation, afraid that they will make it worse. But, says Rev. Lehey, “the best thing anyone can do for a patient with a terminal diagnosis is to simply be present. Hold a hand. Share a cup of tea. Don’t try to fill the silence with profundities—just be there.”
The reality is that “no one really knows how they will feel until they are in the situation of facing the death of a loved one,” says Rev. Lehey. “Some people expect to respond in a rather textbook manner, while others respond from their heart.” In her work with both caregivers and patients, Rev. Lehey says she strives to “reassure them that, whatever the response, it is normal and natural and that they may grieve in the way they feel most comfortable.”
While grief responses can encompass a range of reactions, Johnson says, there are some effective coping tools and healing strategies that can help caregivers and loved ones manage their bereavement.
- Take care of yourself physically. Get enough sleep, choose healthy foods and exercise on a regular basis—even if initially it’s just going for an evening walk. Try relaxation techniques, such as breathing exercises, yoga, meditation or reading, which can help you cope with stress.
- Express your feelings. Try using a creative outlet to express your emotions. Options include: journaling, drawing, singing, dancing, sculpting, writing, painting, playing an instrument or listening to music.
- Reach out for support. Though your instinct may be to spend time alone, try sharing your thoughts and feelings as you grieve—join a support group for people experiencing similar loss, and reach out to friends and family often, not just in the beginning.
- Spend time doing things you love. Gradually make social commitments or engage in activities that give meaning and focus to your life. Let yourself enjoy life again, without allowing guilt feelings to hold you back.
- Be patient. Allow yourself to feel all the emotions associated with your loss and forgive yourself for all the things you did or did not do.
Though all of these strategies can be helpful in working through grief, the reality is that sometimes professional help is required. Warning signs that indicate the bereaved may need professional help, says Johnson, include: being unable to accept the reality of the loss, feelings of intense guilt over things done or left undone at the time of the loss, an inability to perform the activities of daily living or abuse of alcohol, drugs or other substances. “When lethargy, sleeplessness, hopelessness, loss of appetite, despair or thoughts of suicide become overwhelming, seek help from your doctor, a counselor or pastor right away,” urges Rev. Lehey. “Do not think you can handle these things on your own.”
It’s also important to recognize that the grief response can ebb and flow. People may feel they have overcome the worst of their grief and then be surprised when they are overwhelmed again through a trigger like a holiday or other special event, or even by something as simple as a particular fragrance or every-day occurrence. “Memories are stored deep in our brains and will most likely be there forever, and it takes time for the ‘sting’ to be removed,” explains Rev. Lehey.
For those who are having difficulty facing those key dates—birthdays, holidays or anniversaries of the loss—she recommends making plans to observe the day in a special way. “These times are a chance to remember our loved one and enjoy happy memories. You may want to visit the cemetery or take a friend to a favorite restaurant. You may even go so far as to have birthday cake with family! Don’t try to ignore it, but rather mark the day in a special way —whatever feels right to you and your loved ones.”
There are No Rules for Grief
The most important thing people need to understand about grief is that “there are no hard and fast rules to grieving,” says Rev. Lehey. “You will find your own way through it, but do not ignore the process—your body and mind will eventually pay a price. Reach out to friends, family or professionals for support and you will get through the grief process and become a stronger person—someone others can one day lean on in their own grief.”
Ultimately, Johnson says, “there is no award-winning process for the ‘best way’ to experience grief and loss. Grief and loss are more transcendent and all-encompassing than steps or something that someone must ‘go through,’ ‘come out the other end of’ or ‘get over’.”
[i] End of Life Care for People Who Have Cancer. National Cancer Institute website. Available at: http://www.cancer.gov/cancertopics/factsheet/Support/end-of-life-care. Accessed May 7, 2013.
[ii] End of Life Care for People Who Have Cancer. National Cancer Institute website. Available at: http://www.cancer.gov/cancertopics/factsheet/Support/end-of-life-care. Accessed May 7, 2013.