A Cancer Survivor’s Guide to Caregiving
By Jim Rice
As a rectal cancer survivor, I have had several caregivers. An enterostomal therapy nurse took care of me at the hospital after my colostomy surgery; home health care nurses came to my house for several weeks after the surgery; and my wife Gwyn has provided emotional support and physical caring throughout my cancer experience. For the first few months after my surgery, I felt as helpless as a baby because I could not attend to the basic personal duties that are necessary on a daily basis. I was totally exposed in the truest of senses. Having knowledgeable and caring caregivers allowed me to grow from cancer patient to cancer survivor.
There are many kinds of caregivers. Some live within the home with the patient; some live out. Some patients are fortunate to have many caregivers, often in the family. Others have caregivers that live long distances away. Thus, there are many different roles and responsibilities depending on your individual situation. Whether the caregiver is a partner, child, parent, relative, or friend of the cancer patient, the relationship with the patient will change. The impact of the patient's cancer may reverse existing roles. Generally, the more changes brought about by the diagnosis and treatment, the more creative the caregiver needs to be to work effectively with the person who has cancer.
In my experience, a cancer patient generally fits into two situations.
Situation 1: If the person who has cancer is able to carry out his usual roles during the treatment/recovery period, the caregiver and other family members may only be needed to provide emotional support to the patient and to each other.
Situation 2: If there are so many changes that the patient is no longer able to work at home or on the job, or if there are new roles the caregiver must assume, then it becomes even more important as a caregiver to work well with other family members.
I personally fit into both of these situations. I was able to perform the majority of the household roles that I did prior to my diagnosis and surgery, such as preparing meals and cleaning up after them, dusting, vacuuming, paying the bills, and retrieving the mail (a chore in itself since our mail box is an eighth of a mile from the house—the walk was slow, but good for me!).
There were some changes in our lives, however. My mother, herself a colon cancer survivor, came from California and stayed with us for the first two months after the surgery. I know she was of tremendous emotional support to Gwyn and also to me. She didn't want to interfere but wanted us to know that she was available, if needed. Also, due to a very slow healing peritoneal wound that prevented me from sitting comfortably for extended periods of time, I was away from my normal job for one year, which significantly changed our normal daily routine. It was rather strange for Gwyn to go off to the office each day while I stayed home. She grew to enjoy this arrangement, though, because I totally assumed all kitchen duties so she always had a hot meal to come home to. The wound also stopped me from doing the weekly grocery shopping because it was too uncomfortable for me to drive into town (a 35-40 minute trip one-way). Gwyn picked that up as a routine duty with no hesitation.
Gwyn and I came up with a list of important things for caregivers to remember:
Try to understand the patient's point of view. Ask questions and listen; don't assume you know what the patient's perspectives are about his cancer and its impact.
Try to promote independence, self-esteem, and self-care.
When decisions need to be made, try to work together to make them.
It is always important to help the cancer patient maintain his dignity.
A caregiver should try to learn as much as he can about the patient's cancer in order to understand what the patient may be experiencing. However, no matter how much the caregiver learns, he will never know exactly what the patient is experiencing. Never use the phrase "I know what you are going through" or "I know how you are feeling." There is absolutely no way that a caregiver could know exactly how the patient is feeling, unless the caregiver has already been through what the patient is going through.
Although it may be difficult at times, as a cancer patient you should:
Try to allow caregivers the ability to maintain a certain amount of normalcy within their lives. Don't make them feel guilty for needing some time of their own.
Discuss your concerns with the caregiver without instilling fear of what may or may not happen.
Try to maintain a positive outlook. Your situation may be bad but enjoy each day to its fullest.
Many caregivers can get stressed and burned out by new responsibilities or trying to appear constantly optimistic. A support group can be an excellent resource to vent frustrations and learn tips. Many caregiver support groups are available on the Internet.
There may even be a local caregiver support group in your area where you may sit down and meet face-to-face with other caregivers. Check with your local American Cancer Society office.