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What to Wish For

Posted By Barry Jacobs, Wednesday, June 26, 2013

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.
How many of us resolve all remaining issues with the dying? How many of us are left with regrets?

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—

Tags:  caregiving  dementia 

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It Took A Long Time, But She Did It Her Way

Posted By David Ziobro, Tuesday, March 12, 2013

This blog post is a reprint of an article from the February/March 2013 (No.105) issue of Mainstay, a regular newsletter produced by the Well Spouse Association ( Reprinted with permission.

"Well, at least they went quickly and didn’t suffer.” That’s what people say when someone dies. I understand what they mean. But she didn’t go quickly. No, it was a long slow steady decline. Did she suffer? No, with the pain meds, and her loss of memory, she didn’t suffer, but I did.

When we were told that the cancer had spread to her brain, the clock started to tick. Life went on as much as it could. She was able to do some of the things she enjoyed like reading, crafts, and needlepoint. In time, those activities became impossible, and TV and the two hours a day with her aide became her life. Our aide was a friendly young woman; they would sit and talk about all kinds of things, and they liked to look at our photo albums. Our aide was planning a trip to Disney World, and my wife really enjoyed helping her plan it. The trip ended up being scheduled the week after my wife passed away. Her aide was not able to attend the viewing or the funeral. It was almost like my wife planned it that way.

As time passed, we entered the beginning-of-the-end dates. When we were given the diagnosis, the doctor simply would not give us a time frame. The internet however gives you lots of information--we were looking at a 16 month time frame, give or take. I was finally able to get the doctors and the hospice nurses to give me a better idea after many conversations. They were all given with reluctance, and usually accompanied by "everyone’s situation is different.” When we hit the beginning of the possible time frame, it got interesting. By this point I had taken the 90 day FMLA leave from work, and I ended up taking another 90 day leave of absence as well.

As with most everything in her life, my wife exceeded expectations: she lasted 23 months. During the final 6 months of her life, we were in the "anytime” zone. Every morning was difficult for me. Was today the day? Remember when you had your first child and, inexperienced and fearful, you would walk into their room at night and listen for them breathing? Well there I was, going into her room in the morning wondering if this would be the day. I would hope upon opening the door she would move in some way so I would know right away. When she didn't I would walk up slowly and listen, a mixture of fear and then relief, followed by disappointment and then guilt. I had six months of that.

In the last year, my wife’s mental capacity diminished to the point where we could no longer really converse. We still talked, but I understood that she was not there, and our conversation would be forgotten as quickly as it started.

The good part was that she was totally unaware of her situation. She knew she was sick, but figured she’d get better and return to work soon. My wife had retired from her position as an elementary music teacher four years earlier. She began to ask about school and I would explain that she had retired. "Oh really, when did that happen…I don’t remember.” We would talk and it would be forgotten. Every night we would go through the routine about how she was retired. Each morning, we were up early and would go through the same conversation. I had to move her car to her mother’s house around the corner for fear that she would just jump in and drive away. She had not driven since her diagnosis in 2009. Then we had to hide the car keys for all our other cars. Notes on the mirror, on the door, nothing seemed to help. Sometimes she would call the school and arrange to get a sub. The administrative assistant, who knew my wife well, would handle these phone calls with patient understanding. It turns out she enjoyed just talking to her. The rest of the staff were also amazing; they understood and dealt with it.
Every morning was difficult for me. Was today the day?

So when someone says, "well, at least they went quickly and didn't suffer,” understand what suffering is. There are all kinds of suffering. My wife passed away 23 years after her diagnosis of breast cancer. She did better than expected, and did things her way. She once told me "I’m a difficult patient, I know that. It’s my life and I want to know what is going on. I don’t care if they think I’m a bad patient.” In reality, according to her doctor, she was a good patient. He understood why she was the way she was. When she passed, her doctor told me what a strong person she was. He also told me what a fantastic job I did in taking care of her. I tried the best I could. It was difficult. Her doctor gave me a big hug when he told me that. Men don’t hug usually. It was so special because it gave me the feeling that I did good. The patient is the one being treated; the well spouse is often forgotten. He was telling me I was not forgotten. That was special.

Dave Ziobro, Former Well Spouse

Tags:  caregiving  chronic illness 

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