Although not diagnosed themselves, caregivers are often dealing with emotions of their own as they support their friend or family member with cancer. Caregivers may experience grief-like emotions, similar to the stages of loss described by Elizabeth Kübler-Ross in her renowned book, On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss.
Kübler-Ross considers chronic illnesses, like cancer, as a loss and goes on to point out that everyone experiences loss differently. Regardless of the pattern or process of dealing with emotions, there are five common feelings that resonate with caregivers during their experience with the disease:
After all, cancer patients may not be able to keep up their normal routine, sometimes body parts or organs need to be altered or removed and a patient’s physical abilities change, too. Cancer caregivers deal with the stress of all these changes along with the loss of their previous lifestyle and free time with their loved one. Cancer creates a very emotionally charged experience for caregivers and their feelings naturally fluctuate along with the course of the disease.
When you hear your loved one has cancer, some of the most common emotions are shock and denial. You might wish the diagnosis is a mistake and seek out a second opinion. These second (and even third) opinions can help you accept the diagnosis and make important choices about the course of cancer treatment.
How caregivers can cope: It may seem overwhelming, but it’s important to take the time to help the patient sort out their feelings about the diagnosis. Be objective and create a question list for the next doctor’s appointment. Activities like this can help solidify the facts of the diagnosis for both of you, so the patient is able to move forward with treatment and you can move forward with supporting them.
Most cancer treatment includes some element of surgery, chemotherapy or radiation, and that’s when completely justifiable fears can set in. Fear of the unknown. Fear of how your life will change. Fear that something could go wrong. Fear of side effects. Fear that they will not remove or kill all the cancer.
It’s common for caregivers to feel some sort of guilt that they are not the sick one. Many find themselves wishing they could bargain with some higher power to take away the patient’s pain and fear. Caregivers may feel tired and overwhelmed by constant medication regimens and appointments, or feel sad about the loss of their old life.
How caregivers can cope: Stay in the present and do whatever is necessary to feel grounded by continuing with daily activities, and don’t feel guilty for taking a moment to do some self care. Stopping to enjoy the sunshine, a dinner out, a day without appointments and getting loved ones together are ways to garner support and heal yourself as a caregiver.
If Treatment Doesn’t Work
There may come a time when you know you are caring for a loved one who is dying and you will find yourself falling into the stages of loss described by Kübler-Ross repeatedly. There are a lot of legal steps to make to help get your loved one’s affairs in order and to protect and provide for family members once they’re gone. Feeling overwhelmed is very common for caregivers in this situation.
How caregivers can cope: Support your loved one’s decisions about their end-of-life plans. Helping the patient consider palliative (pain-relieving) care and making plans for entering hospice care when the time comes can help you feel at ease knowing they’re going to be comfortable. Don’t feel guilty about expressing yourself to your friends and family about what is happening to get much-needed support.
When cancer treatment is completed and scans and blood work find no more cancer, the patient is classified as having “no evidence of disease” (NED) or being “in remission.” It’s normal to become excited, hoping things might get back to how they used to be. Survivors and caregivers feel a sense of relief in the acceptance that cancer happened and is over for now. However, the patient has just been through a traumatic tearing-down of their physical, mental and emotional strength. Along with survivorship comes new fears of the unknown, fears that cancer can come back and occasional sadness that the physical or mental abilities lost to treatment may become their new reality.
How caregivers can cope: Focus on positive aspects of post-cancer life. Consciously adopt healthy forms of emotional expression and reducing stress including talking with a therapist, journaling, exercising, yoga and meditation. Ask for help when needed and take some “me” time to regroup your energies. Dealing with cancer treatments is one of life’s most challenging interruptions. Being aware of and dealing with emotions that spring from the upheaval will go a long way toward helping you move through the five stages of grief and loss.
Ask for support when you need it. It’s there for patients and their caregivers.