Excerpted from “True Confessions of an Ambivalent Caregiver” by Cindy Eastman
“Life is God's novel. Let God write it.”
—Isaac Bashevis Singer
Lately it feels like everyone is dying except for my dad. If that sounds cruel and heartless, trust me, it is. It is. I hate myself for feeling this way.
The mid-career actors, the young athletes, the kids with cancer. It's not fair to them, it's not their time. They have so many reasons to live. Why them? And the next line is implicit: Why not dads?
To me, it seems so unfair that children die while those with dementia live on. It saddens me to hear of healthy, active adults whose lives are cut short by cancer while men who can't even put their shoes on properly hang on. Wives lose their beloved husbands, babies lose their mothers, and fathers mourn the loss of their sons. And in homes and care facilities across the country, millions of people with dementia spend the rest of their lives completely incapacitated, unable not only to communicate their suffering, but also to find relief from it.
This is probably the most uncomfortable emotion I feel as a caregiver. I hate feeling like it's unfair that my dad lives and others die. Do I think he doesn't deserve it? I don't, but he seems so unhappy. I certainly don't want that for myself or my children. I've already forbidden all three of them from taking me in and living with me. Why would a person live beyond their ability to experience joy? That's where God kind of screwed up. He should have set the expiration date of the ability to experience joy to exactly coincide with the time of death.
But that's not really my decision to make, is it? In fact, there are times when I think my son can still feel joy and experience life. I believe that capacity is there in him, but it's not always available. Although he doesn't contribute to the daily responsibilities of the household, work, or social life, he gets ecstatic when our children or grandchildren come to visit. When we plan visits with family and friends back home, he's full of energy, and when it's mealtime, don't leave him out! He claims to be “not much of a eater,” but he's the first to finish off a (small) plate of cinnamon scones, chocolate ice cream, or fettuccine Alfredo.
When we die is not anyone’s decision, not even our loved ones’. How many times have I passed a woman sitting quietly in her wheelchair in the lobby of the nursing home in the building where my parents lived in Florida, wondering what she was talking about? My parents’ living quarters included the facility as a “welfare” to the residents, euphemistically called “Second Floor.” My parents’ apartment was one floor above, so I usually went down the stairs to visit my parents, who were receiving treatment at the time. At the end of my mother’s life, they were there together for a short time. The stairs led directly to the reception area on the floor, and the woman (whose name I never heard, never even asked) sat there every day. She sat just to the right of an upholstered visitor’s chair, next to a tall potted palm tree, as if camouflaged. She was in her loungewear; she wasn’t “dressed up,” but she wasn’t in pajamas either, and she was leaning slightly to the left in her chair. Sometimes she seemed to be talking to herself, other times she was silent. When I was younger, I would pass her on my way somewhere and I would smile, but I don't think she ever noticed. At least she didn't notice me. She might have been the first person to make me think, “Why is she still here? What's her life like?”
And the answer, of course, is that it's none of their business. It's not even a legitimate question, is it? Even if any of us could answer the question, “How long do I have left to live?”, would we want the answer? As much as I've been frustrated at the mortality rate of seemingly healthy, deserving people, there have been many times when I wished my father felt loved and cared for. Yes, he is a burden, but it is my burden. 
I have to keep in mind that the way I feel now is different than the way I felt when my father died. I will miss him. I will wish we had more time together. I will love him. Now, I wake up every morning wondering if he feels the same way. And I'm not sad that he doesn't. I long for freedom in my life, freedom I didn't even know I had before. And the irony is that knowing I'll be lonely and sad when he passes away doesn't ease the frustration of having to continue caring for him, meeting his ever-increasing, humiliating demands.
God, help me.
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This article, “Playing God,” first appeared on Spiritual Media Blog.
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