This may be one of the most difficult topics to offer suggestions for, given the many variables involved. To begin with, every family is unique, both as a unit and individually. Every family has its own norms for how open they are with each other, with whom they are willing to disclose information and to what degree of comfort they have in sharing personal information—which often excludes anything pertaining to sex or mental impairment.
In reality I didn’t tell my children—they told me. The day after my 70th birthday, my son and daughter told me they were concerned about my memory lapses, my stammering speech, and my growing tendency to misplace things. Although I had recognized these symptoms myself, I resisted and resented their interference. I was embarrassed and ashamed.
I remember well how Keith felt embarrassed and ashamed when he became impotent from prostate cancer surgery…how he, too, resisted and got angry…and how I didn’t understand how he could feel ashamed of a condition he had no control over. Yet at that moment in time, I felt the exact same way—ashamed, embarrassed, angry at my children, afraid, and defensive.
When I attended the Mayo Clinic HABIT (Healthy Action to Benefit Independence & Thinking) program, one of our support group topics was “Telling Others.” I was in a group of twelve who had been diagnosed with MCI, nine men and three women, and I was the only person in the group who said their children knew about their condition. “I had been trying to hide my symptoms, but my children and husband knew,” I confessed, “and they finally confronted me.” The room grew ominously quiet. Our facilitator asked the rest of the group, “Do any of you think your children have noticed changes and just haven’t said anything?” The room remained silent.
Eventually, communication started again. Everyone had reasons why they “couldn’t” tell, not only their children, but their friends and family: They were embarrassed. They would lose respect. People would avoid them. They weren’t ‘bad enough’—yet.
I totally understand each of these responses. I had all of them myself—and still do at various times.
I will never know how ‘disclosure’ would have played out had my children not confronted me, but I do know three positive outcomes that have resulted from no longer trying to hide my symptoms.
The first is, as a family we can now talk about how I’m doing and in what ways my family can help me. At the present time I function quite well and really don’t need much physical help, but I have asked the kids and Keith to tell me if I’m repeating myself—a request I would not have made prior to them knowing. As it turned out, they were trying to be polite and not mention it, but I assured them I wanted to know, and wanted them to tell me so I didn’t embarrass myself. I’ve also asked, “If I say I don’t remember an event or a person, don’t try to give me hints. Just accept that I don’t remember, and either drop the subject or tell me the story anyway.”
The second positive outcome of ‘coming out’ to my family is it’s become easier to tell others. I don’t broadcast my condition, but I do let others know if appropriate. For example, I’ll tell people who I have frequent contact with—those close friends who have likely already noticed something. I’ve also told people with whom I share committee work. While I’ve given up most of my committees, the two I’m still active in ‘know.’ Now that these close circles know, it has become easier to write about my condition on my web site.
The third positive outcome came as a bit of a surprise to me, and that is: I am no longer ashamed about my condition. I remember questioning Keith when he said he felt shame for having cancer, because it seemed so illogical to me. Now I realize that overcoming shame and sharing my story is another part of coming to acceptance.