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Caregiving by Men:
A Husband's Perspective

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.
STEP #7 EXPLORE ALTERNATIVE AND COMPLEMENTARY APPROACHESThe history of Taxol is truly a story of alternative medicine. After all, what was the search that found Taxol about but examining thousands of plants to see if one of them might yield a possible answer? So there is much we do not yet know and a great deal of alternative and complementary medicine that may be helpful or at least comforting.

In our personal journey, we never stopped the traditional medical treatments, but did go regularly to a Chinese physician who specialized in herbal medicines. Additionally, Sandra spent a week at Deepak Chopra’s Ayurveda Medicine center, regularly meditated and periodically had massages. Obviously, it is impossible to know whether any of this helped her physiologically, but I can attest to the fact that she felt it was emotionally important to her. 

STEP #8 TAKE CARE OF THE PAPERWORK, WILLS, FUNERALS, ETC.

 This is heavy lifting. Perhaps this is the attorney in me, but I urge all families to put their “business” houses in order. This means preparing wills and trusts if necessary and arranging all manner of end stage issues such as deciding who will be the health care proxy, what are the requests for heroic interventions and DNR orders, decisions on custody of children (in worst case scenarios) and finally funeral arrangements.

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