Caregiving by Men:
A Husband's Perspective

STEP #3 UNDERSTAND THE THEORY OF DIFFUSION OF INNOVATION

The concept of diffusion of innovation is that new clinical treatments are not uniformly adapted throughout the health system. Typically, there are centers of innovation, early adopters of innovation, mid-term adopters and eventually late adopters of innovation. Some of this has to do with economics and some of it has to do with the pace of information being transmitted through professional channels via the literature and meetings.

Since time is both your best friend and worst enemy, it is imperative that caregivers be knowledgeable about what is being developed. Often years elapse between the first stages of research and the time of publication of research results. Consider the history of Taxol. Today Taxol is a first line drug for breast and ovarian cancer. Its long and complicated history began in 1962 when the first samples of the pacific yew tree bark and needles were collected. Twenty-two years later, in 1984, after an enormous amount of research, it began its first Phase I clinical trials to see if it was a useful drug. It took another nine years, until January 1993, before it was generally available for other than experimental purposes. It then took another period before it found its way out of the academic medical centers to the corner oncologist.

 It is imperative to know that it may take several years merely to prepare an article for professional publication, have it go through the peer review process and then have it published. For the proactive caregiver, knowing what is on the horizon provides a leg up if it is necessary to go for some new medications or procedures that are not available in your community. For example, in my wife’s case, we had been following the saga of Taxol and were ready to jump on it as soon as it was released. In fact, thanks to the hard work of Dr. Donald Higby at Baystate Medical Center in Springfield, Massachusetts, a teaching hospital associated with Tufts Medical School, Sandra was the first person in Western Massachusetts to take the drug one day after its release.

STEP #4 RECOGNIZE FEAR, ANGER AND FRUSTRATION

Anyone who has a diagnosis of cancer is fearful and often angry. Why me? is a common question. Some people with cancer also blame others; “If there wasn’t so much stress in my life, I wouldn’t now be sick.” My experiences suggest that all you can do is validate that fear or anger. Trying to be logical or scientific does nothing but add fuel to the fear or anger. If possible, some type of therapy, particularly support groups for the entire family, should be considered.
In most instances, the caregiver is equally fearful and angry. While it is clearly useful to share these emotions with therapists and in a caregiver support group, one should be more circumspect in sharing it with the victim. Frankly, they have enough on their plate dealing with their own issues. As another friend put it simply, “The caregiver has to be the rock, the foundation of the family, and who needs a crumbling foundation?”

STEP #5 FORGET STATISTICS

There is only one statistic that counts, whether you are alive or dead! Articles and physicians like to talk of survival rates, but these numbers are not relevant since one’s only concern is not the cohort’s survival but rather the individual’s survival. So even if the five-year survival rate for ovarian cancer is 15 percent, what difference does it make if you are not one of the survivors?

STEP #6 STAY STRONG EMOTIONALLY AND PHYSICALLY

Being a caregiver is tough work. Most of us find that we still have to do our outside jobs and we’ve picked up a full-time inside job. Obviously when Sandra was feeling well, the job was fairly undemanding. On the other hand there were times, particularly in the last 18 months, when being a caregiver was exhausting and frustrating work. My days and nights seemed to be endless with oxygen equipment that needed filling, suction pumps that needed tending and total parenteral nutrition (TPN) gear that needed injections, hooking up, cleaning, and computers that forever needed programming. Even when we went to the hospital, I found myself part of the care team, often being involved in the changing of TPN equipment from our home care computer system to the hospital’s system. It is also hard work to be someone else’s advocate, but we have to always remember that our advocacy may indeed make the difference between life and death!

Under no circumstances should you be a hermit. For me, as for many men, work became an important social outlet. Initially I was afraid to tell people what I was going through, but as I opened up to a few colleagues, I found them to be an enormous source of support for which I will be eternally grateful.
Finally, being physically healthy is as important as emotional health. I don’t need to spend much time on what we all know: eating right and exercise. Unfortunately for me, I would find solace in “comfort food” and be too tired to exercise. My only advice is fight for your own health—it is definitely critical for you and your family.
 

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