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Start the most difficult conversation American isn’t having- the conversation about our end of life preferences

Mickey’s Story

Accompanying Essay: What to Wish For, by Barry J. Jacobs, Psy.D.

When he became my step-father when I was 17, he and I never made eye contact.  We resented each other’s presence in the house and tried to avoid one another as much as possible.  He wanted my mother all to himself. I resented the fact that he was taking my deceased father’s place.  We passed each other in the narrow hallways with heads down, barely grunting in recognition.  If I’d never looked at him again after I reached college age and moved out, it would have been all right by me.

Now, 37 years later, each time I visit him in the dementia unit in the nursing home, I find myself staring at him, gawking at his transformation.  His body is now all jutting bones and red sores.  His face is a stiff, gaunt mask covered with flaking skin.  He gazes back at me just as intensely.  I wonder what his blue eyes see as they stare at me, what is going on in the shrunken brain behind them.  But his eyes quickly go vacant—unfocused and uncomprehending—with too-narrow pupils.  It is clear he no longer recognizes me.  In his severely demented and diminished state, I no longer recognize him.

What should I wish for him?  It only embarrasses me a little that I’ve spent most of my life hating him and wishing him dead.  Now that dementia is slowly draining all life from him, I’m ambivalent about what I want to occur.  Part of it has to do with my mother’s feelings.  During her three-times-a-week visits to the dementia unit’s crowded day room, she still takes small pleasure if she can coax him to eat everything on his lunch tray, as if he were some stubborn toddler.  If he also babbles to her—mostly random words and sentence fragments without meaning–she is thrilled for the rest of the day.  Even though she has signed nursing home orders to let nature take its course in the event he becomes seriously ill, rather than having him sent to the hospital, my mother isn’t ready to let him go.  Caring for him still gives her purpose.  Without him, she will feel utterly alone.  In deference to her, I don’t want him to die just yet.

But part of my ambivalence also has to do with my unsettled relationship with him.  How many of us resolve all remaining issues with the dying, especially those with whom we’ve clashed and whom we then demonized?  How many of us are left with regrets?  As a teenager and young adult, my step-father served as the example of all I didn’t want to emulate—the Anti-Mentor.  Where he was jokey and false, I would sanctimoniously try to be straight and true.  Where he was manipulative and self-serving, I would attempt to be above board and serve others.  In my mind, he was my foil, my moral counterpoint.  But using him in this way to help define myself also connected him to me psychically.  It gave him a role of some importance in my development.  Even as an older and supposedly wiser middle-aged adult, I never bothered to get to know him beyond the caricature of rival and villain.

Last week, my mother learned that the nursing home staff members have been unable to heal my step-father’s persistent bed sores.  It’s a sign that dementia is sapping his recuperative powers and that his end isn’t far off.  The nurse who called my mother suggested hospice services for him. My mother asked me what she should do.  I recommended that she agree to hospice.  She was sad but acquiesced.

I’m feeling conflicted.  Part of me regards this matter-of-factly as the right thing to do.  Part of me feels a little sad, too, about his likely death in the next few weeks or months.  Who was this guy?  I’m reluctantly coming to the realization that I wish I knew.

Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA.  He is the author of The Emotional Survival Guide for Caregivers—Looking Out for Yourself and Your Family While Helping an Aging Parent (Guilford, 2006).  Please see the book’s website—