Many people think caregiving is caregiving. One size fits all. The truth is that cancer caregiving is very different than basic caregiving.
In basic caregiving, the need for the care can be the result of anything from heart disease to ALS to recovery after a traumatic injury. The one consistent thing is that a loved one needs continued care over time, usually on an ongoing basis over time. There is often a consistency to the care, although the intensity of it may vary depending on the loved one’s health at any given moment in time.
How does this differ from cancer caregiving? The treatment for the disease often causes more problems than the disease itself. Not only is the loved one coping with cancer, he or she is often rendered more helpless by neuropathy, nausea, “chemo brain”, and even just the fear that comes with a cancer diagnosis.
But maybe the most important difference is that cancer patients often experience good times and bad, so their need for care depends on where they are in their treatment and management of cancer. A cancer patient may be knocked off his or her feet during the duration of active treatment, but then begin to slowly resume normal activities over time, once the chemotherapy and radiation stops. A cancer patient who has surgery may need recovery time, physical therapy, and the chance to feel more like his or her old self before life begins to find the balance again.
What does this mean for caregivers? You need to be more flexible in your approach to caregiving. You need to learn when to step forward and when to step back. Your goal is never to take over from the cancer patient and create dependency. And you must always understand that when a cancer patient feels that he or she needs to take back control of life, it’s part of the healing. It’s a way to manage the disease so the disease doesn’t manage the cancer patient.
Cancer is the one disease that really has unique needs for care. Very often, the biggest issue for cancer caregivers is helping a loved one to survive with the fear that the disease can and may return. Now that cancer patients are living longer and better, it’s about managing the disease to improve the quality of that survival.
Comfort care, also known as palliative care, is one of the greatest ways to help cancer patients survive the rigors of treatments. Many cancer patients don’t know or understand what pain management can do to improve the outcome. When your loved one is being treated for cancer with powerful chemotherapy drugs, the experience can be brutal. With comfort care, patients often experience fewer nasty side effects, which enable them to better tolerate the needed drugs. The nausea can be controlled. For some cancer patients, the treatment can leave them feeling and looking like the walking dead if they don’t take advantage of palliative care.
Sometimes the best thing a cancer caregiver can do for a loved one is to help put aside the cancer and just live in the moment. When cancer looms above every conversation, dangling as an unspoken thought, it casts a pall on any meaningful sharing. It’s the elephant in the room. It’s the bull in the china shop. It’s the skunk at the picnic. Everyone is waiting for the next bad bit of news. The dread can linger long after the cancer goes into remission. That’s why a good cancer caregiver learns to focus on the good, the “here-and-now” moments and takes advantage of them. Help your loved one to enjoy today and look forward to tomorrow. Don’t wait for that special time to celebrate life. Appreciate the opportunities you have. This is one time when a bird in the hand is definitely worth more than two birds in the bush.
Cancer caregiving, more than basic caregiving, is all about the emotional support and empowerment of a loved one, with periods of sometimes intense physical care and sometimes no physical care at all. It’s a roller coaster of symptom management and psychological coping. It’s never about one way of doing things. It’s about understanding your loved one and helping him or her to navigate through the cancer and its treatment in ways that allow for the maximum opportunity to pursue life.
Cancer caregiving is best done with a solid understanding of the type of cancer, the stage of cancer, the type of treatment, the side effects, and the options for palliative care. Embrace your responsibilities by knowing that how you make your approach to cancer caregiving really can help your loved one better survive the disease.