The cancer journey can be very emotional, and both patients and their loved ones may experience grief. Amanda Hull, LMSW, Oncology Social Worker at Sarah Cannon Cancer Institute at St. David's Healthcare, discusses what people should know about coping with grief throughout the cancer journey.
Understanding the Grief Dimensions
The Kubler-Ross model defines the seven stages of grief as shock, denial, anger, bargaining, depression, testing and acceptance. However, more current literature suggests that the grief experience can be broken down into six dimensions that are unique to each individual. The dimensions of the grief experience include:
- Occupational – Impacting day-to-day functioning, such as disorganization, absentmindedness, fatigue, insomnia, reduced patience, short temper, impairments at work, increased drug or alcohol intake and loss of another income.
- Social – Becoming withdrawn and detaching from meaningful relationships, lack of initiative and feelings of hypersensitivity or hyperactivity.
- Spiritual – Questioning spiritual or religious values, loss of faith, feeling betrayed by God or angry at God, preoccupation with one’s own death and feelings of “Why me?” or “Why did this happen?”
- Mental – Potential changes in concentration, decline in short-term memory, feelings of distraction (not being able to focus on a routine task), avoiding the loss(es) or changes in the roles that the caregiver has had to pick up as a result of the patient no longer being able to perform, disorientation and sense of unreality.
- Physical – Possible gastrointestinal flare-ups, tightness of the throat, shortness of breath, aches and strains in the body, fatigue, loss of appetite and sleep disturbances that can impact concentration patterns.
- Emotional – Eruptions of emotions, including aggression, panic, anxiety, anger, relief, guilt, longing, apathy, fear, abandonment, meaningless, helpless and running the spectrum of emotions in a short period of time.
Both the patient and the caregiver may experience all or some of the dimensions of grief - or feelings of grief - throughout the cancer journey. They may be slightly or very different experiences, and neither should be considered good or bad or right or wrong.
The patient may grieve the loss of their current life and daily experiences, such as having to leave the workforce or not being able to participate in certain activities that he or she once enjoyed, while a loved one may struggle with the uncertainty of the future. It is important for families to share their feelings in a respectful manner, and work together as a unit to create an environment where every person can openly express their feelings, thoughts and experiences.
In addition to allowing each person to express themselves freely, it is important for the patient and the caregiver to also understand how the person is experiencing grief. How are they managing the information? Are they processing, communicating and understanding the current condition? How is it impacting their day-to-day functioning, including work, family life and their health? By understanding some of the dimensions of the grief experience, families and individuals can recognize if and when a loved one is struggling, and it is then that families can come together to gently intervene and support one another.
It is important to note that while there is no one right or wrong way to experience grief, there can be differences in the way we exhibit that grief. Namely, there can be intuitive grievers and there can be instrumental grievers.
- Intuitive Grievers: The intuitive grievers tend to by openly emotional and want to talk about their feelings as a way of processing the experience. These individual might be the ones with whom you just sit quietly with a box of tissue nearby. Their expression is to review and verbalize. It is important for families not to label these individuals as “over emotional” or “stuck.”
- Instrumental Grievers: Conversely, the instrumental griever is the one who is going to ask a lot of logistical questions. They are often the spokesperson for the family, the organizer and the action-oriented individuals. They might be the one to go and build that fence or fix the lawnmower as a way of processing their experience of grief. It is important for families not to label them as “in denial” or “cold.”
It is important to remember that all of this is on a continuum and rarely is someone exclusively intuitive or instrumental.
For the patient, it is essential to understand the resources and support available throughout the cancer journey, such as community-based programs, places of worship and support groups, to help explore thoughts and feelings. Additionally, oncology centers are able to counsel patients and their loved ones at the beginning, sharing resources and support that provide better outcomes for coping and survivorship.
To help manage grief, both the patient and the caregiver should try to keep life as normal as possible. Continue activities that are enjoyable and meaningful, such as crafting and meditating. If a cancer diagnosis prevents a person from doing something that they once enjoyed, consider the alternatives, such as taking a walk around the neighborhood instead of going to the gym.
To learn more about coping with grief throughout the cancer journey, call askSARAH at 844-482-4812 to speak to a nurse at one of our locations who is specially-trained to help with cancer questions. Calls are confidential and nurses are available to speak 24/7.