Caregiving by Men:
A Husband's Perspective

The formal diagnosis of ovarian cancer was confirmed after seven hours of surgery at Boston’s Brigham and Women’s Hospital. Prior to receiving that devastating news, we were in the land of possibilities, probabilities and suspiciousness in large measure due to the inconclusiveness of blood tests, ultrasounds and CT scans. Cancer never strikes at a good time, but for us the surgery occurred at a particularly poignant moment, July 27, 1969, our twentieth wedding anniversary.

For the next five and a half years, Sandra and I struggled with hope, disappointment, fifty hospital admissions, two other major surgeries, countless minor procedures, and two changes of physicians. And throughout these years, until her death on October 13, 1995, we had to function as a family, work, pay bills, go to school, be effective parents to our two teenage sons and assist our aging parents and a disabled sibling—in other words, live life. Additionally, for significant periods during those years, I became a caregiver.

In the ten years since Sandra’s passing, I have been consulted by friends and family who are going through similar experiences. Most recently, a business colleague told me that his wife just had surgery for ovarian cancer and I started sharing with him my observations about a husband or significant other’s job when a loved one is stricken with cancer. Those conversations led me to prepare this article on ten steps for effective caregiving. While most of my examples are from ovarian cancer, I think they are applicable across the spectrum of diseases that make a significant impact on the family constellation.

STEP #1 EDUCATE YOURSELF

Being an effective caregiver is a proactive job. It is imperative that the caregiver becomes an expert on the disease, particularly when the person with the disease is physically and emotionally drained from the diagnosis and treatment. This means reading the consumer oriented literature from the various relevant organizations such as the National Ovarian Cancer Coalition, The American Cancer Society or the National Institutes of Health, plus reading the professional literature.

Some of this literature is available on the general search engines such as Google or Yahoo, but it is also useful to try the sites medical professionals use such as MEDLINE and MEDLARS. In some instances, relevant articles may only be available as abstracts online so to read the full text it will be necessary to go to a hospital or university library. My experience has been that librarians are exceptionally helpful in assisting you to acquire virtually any article.
Understanding these articles will be a new challenge. Initially many of them will, because of their technical nature, appear to be gibberish. However, within a few weeks of starting this self-education project the articles will start making some sense. As important as the articles themselves might be, knowing whom the authors are is equally important. The articles will provide a crucial way of identifying those physicians who are doing the cutting edge research on the disease. More on that later!

A final way to educate yourself is to attend professional meetings or at least obtain the professional meeting abstracts. The reason for this is also to identify, meet and talk with the cutting edge researchers so that you will have resources for second or third opinions or perhaps to select a new physician.
STEP #2 BE ASSERTIVE (THIS IS THE TIME FOR SERIOUS CHUTZPAH)
 Do not be a passive recipient of care. Ask questions, consider alternative approaches, and get second opinions. When someone you love is receiving care for a serious illness, they are often in a dependent and weakened state and the caregiver is the advocate. Effective advocacy is not about winning a popularity contest for most compliant patient, but rather always finding out what is in the best interests of the sick person.

Physician loyalty is good, but never put that ahead of the main objective; that is getting the best quality care for your loved one. For example, at one point we consulted a highly regarded professor of gynecologic oncology who gave us advice which, if followed, would have shortened Sandra’s life by 15 months. It was only by seeking a second and third opinion did we learn that he was simply ill informed about the particular therapy. In our situation, the second opinion was from an oncologist 400 miles away and the third from someone 1500 miles away. So, a willingness to go the extra mile, literally and figuratively, is an essential step in getting good care. Illustrative of this is the experience of a friend and neighbor from Florida who had prostate cancer and went for consultations in Miami, Baltimore, Boston and Rochester, Minnesota before deciding that the right place for him was the Mayo Clinic in Minnesota.

In another personal example of assertiveness, I am reminded of a Friday evening, when in response to my wife’s severe pain, the oncologist ordered morphine for her which was later delivered by a home health nurse. Within sixty seconds of arriving at our house, the nurse had placed the box of syringes on the table, told me that I should use them as per the instructions inside the box and “have a nice weekend.” I stopped her as she was reaching for the doorknob and asked if she would show me exactly how to use the preloaded single dose syringes (up until this point, I have been filling syringes from vials). She explained it was very simple: ”Just open the container and use it.” I demanded that we examine the new system more closely and it turned out that it was not all that simple. Indeed, the nurse eventually admitted that she could not understand the instructions in the box. Next she called the home care pharmacist who also had to read the instructions and together they figured out the mechanism for using the system. Finally, over an hour later, the home care nurse was ready to train me on using this new system. If I had been compliant, Sandra would have been frustrated, angry and in needless pain while we waited for yet another house call in the middle of the night.

Assertiveness is also making phone calls to strangers, particularly researchers, who may be working on something you want to know about. I have done this numerous times and always found that a polite and honest conversation about a loved one’s health will be well received.
 

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