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Caregiving by Men:
A Husband's Perspective

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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