Cancer Caregivers

In the past 30 years or so, there has been a transition in this country for those diagnosed with cancer. Not very long ago, a diagnosis of cancer meant being admitted to the hospital to wait out the final days in a haze of morphine.

Part of this transition came with the new drugs that went about killing rapidly dividing cells, the cause of vomiting, hair loss and general feelings of the flu 24/7. The new drugs have been better in some cases and worse in others, but what we know is that cancer is no longer the automatic death sentence it was in the 50s and 60s.

Today patients are being diagnosed earlier — early enough to live long lives after treatment that is given outpatient, allowing the patients to go home to be cared for by . . . and this is the tricky part. By whom?

Most often, the care comes from family, husbands for wives, wives for husbands, parents or children. It has put tremendous pressure on our families to serve as quasi medical experts in our care. It is often a frightening prospect for them and brings them right into the cancer experience with us in many ways. For those caregivers who must also work full time, the pressure can be overwhelming. And the emotional impact, particularly for spouses, can result in lingering fear of recurrence that is actually worse than the patients.

Today, a cancer diagnosis means that the whole family has cancer.

With today’s families spread out across states and regions and even continents, it has become more important than ever for those in need to reach out. The message here is that patients need to reach out and get support from friends to either help family caregivers or be the caregivers.

In more and more instances, there will be a nurse who will help in identifying and training those who will change bandages, strip drains, mash pills, keep track of when and how much someone gets of different drugs, or even picks up drugs to be sure the patient gets all of the prescriptions needed. It may sound trivial to talk about picking up drugs for someone unless you have stood in line waiting for a prescription to be filled when the fatigue you are experiencing makes it hard to even stand.

Caregivers have been recognized as a community also in need. In today’s cancer support community, there are often support groups for caregivers as well as patients. When I was diagnosed, my care came from my husband, who also had to care for our 13-month-old child. I can remember being shown how to strip the drain in the hospital before I was released. I could hardly see what the nurse was doing, much less do it myself from the angle I had. My husband was not there at the moment; he was either at work or taking care of our daughter. When I had to explain to him how to do it at home, he was terrified he was going to hurt me. When my nausea became so bad that I was throwing up every 20 minutes, I called the doctor and was told they were calling in a prescription and I should begin taking it immediately to keep from becoming more dehydrated. So he had to dress our daughter for cold weather and get her in the car to go pick it up. I was so sick I couldn’t care for her, and at 13 months she was very mobile and not at all rational.

Our help came in the form of food from our church community who provided dinner for six weeks. Friends stepped up and took Kirtley to day care and picked her up. One member of the church took on the coordination of our care, and I don’t know what we would have done without this help. Today there are sites like CaringBridge and others to help let people know the needs of the family. The caregivers are now recognized as part of the cancer experience and included. When I started speaking about my breast cancer experience in the early 90s, I seldom saw husbands or other caregivers in the audience. By 2000, the audience was often 50 percent caregivers, a wonderful shift.

If you live next door or you go to church with the person newly diagnosed, don’t assume that the person has someone taking care of them. Call or go by and knock on the door. Offer to organize. Go with them to the doctor, and if you are a survivor, go with them to translate what they are hearing. And for those of you who have been caring for someone with cancer, thank you from all of us.