Changing Roles: Shining the Spotlight on Male Caregivers

My experience as a Hosparus Health chaplain has significantly reinforced something I have known for quite a while. Men can be very able and competent caregivers, professionally, and as family members. Recently, I have witnessed the caregiving by two different men, each husbands of patients that I worked with. The husbands, whom I will call Joe and Bill, moved me by their love, and in the way their love translated into caring for the needs of their wives.

Both of the women had a diagnosis of Alzheimer’s Disease. They had each reached a point where they were more childlike, which is common in the course of the disease progression. If an adult son or daughter is caring for a parent with Alzheimer’s, at some point they find that the roles have reversed and they have become the parent. It is a transition that is difficult to make for all involved.

When the caregiver is the spouse, the same role shift can happen but often in a different and more complicated way. I have had a number of wives of Alzheimer’s patients say, “I want my husband back.” A few husbands make similar comments. Their love may not necessarily diminish, but any sense of spousal love often does. One wife actually told me that she could not feel intimate about her husband because he was like a child to her. In my experience, this is very common and I have often normalized the feelings for spouses.

Joe and Bill stand out from the norm. They possibly felt some of the parent-child dynamics, but they did not allow these feelings to negatively impact their caregiving. Each one always spoke about their wives and to their wives as adults. They treated their wives with the utmost dignity. Neither man was “too big” to recognize and ask for help.

Whether the help came from family, or the Hosparus Health team, it was always clear that they were the primary caregivers. Neither man asked for help to get someone to do something he did not want to do. Each one took care of their wives’ personal care needs. These husbands asked for help because they recognized their limits.

Joe’s wife could still converse, from the first time I saw her until a couple of days before she died. Joe was very observant of his wife’s behaviors and symptoms. When he saw changes, he was proactive by giving the appropriate medication, giving her food, or whatever it was that might need to be done.

What impressed me most about Joe was that he was so intentional to include her in conversations. He used the word “we” when speaking to and with her. This clearly gave his wife a sense of their togetherness and their bond of love. They were a team. Even husbands and wives without health issues can resort to “parent-child banter.” I never witnessed this from Joe. No matter how many people were present he would include her in the conversation.

Bill’s wife could only speak a word or two, and only rarely. She slept most of the time. Bill always talked about his wife as if he were still completely in love with her. Until the last week of her life, he would say to me “she still knows how to kiss.” Like Joe, Bill never talked in a condescending way to his wife. I never heard him say anything about her that he could not have said to her if she still had full awareness. He believed she was a gift from God, and he always treated her that way.

Joe and Bill are two of the best examples not only of male caregivers, but of caregivers period. They are shining lights in a role that for too long has been assigned to women much more often than to men. Caregiving roles are changing and as that happens, it is for the benefit of all.