Paul KahnTHE DEEPENING FOG (Part 2)My father sometimes doesn't remember why or how my mother came to live on the nursing floor. "These goons came and took her away!" he asserts angrily. When I remind him that he agreed to the arrangement, he insists that he never did. And he is deeply unhappy about their separation. He tells me often, "Your mother doesn't belong there. That place is a zoo. I can take care of her." Taking care of her is, in fact, his one remaining purpose in life. They have been married 67 years. At times he seems to understand her losses, and at other times he seems to forget them. Then only his desire to be reunited is clear. In response, I reiterate patiently how the nursing floor offers Mama the level of care she needs, how, despite his good intentions, it wouldn't be safe for him to try to take care of her himself. There is, in fact, a considerable danger of them both injuring themselves when he tries, because he is unsteady on his feet and his motor skills have greatly deteriorated. They could both easily fall. But try he continually does, despite the remonstrations of the nursing staff. My mother looks to him for help and emotional comfort. If she has to use the bathroom, she will turn to him first. And if an aide doesn't come immediately, he'll go into clumsy, precarious action. "They get mad at me, but I don't care," he fumes. I hide from him my own dissatisfaction with their living arrangement. After having enjoyed a long, healthy, fulfilling and independent retirement, they have become subject to all the negative characteristics of institutions -- rules that suit the convenience of the staff rather than the residents, dependence on caregivers whose kindness and competence vary widely, condescension and neglect. I'm infuriated that, even though they pay dearly for their care, they can't trust it to be humane. I don't think they should be separated simply because they need different levels of help. I don't think their freedom should be impinged on in the name of safety. I don't think they should be treated like children because they have lost certain abilities. I am particularly wary of institutions because independence is not something I take for granted. Along with thousands of my peers, I fought for it. The disability rights movement that began in the mid-1970s was predicated on the concept that the adverse effects of disability are mostly the result of social conditions and discrimination, not the disability itself. The signature accomplishment of this movement was the creation of the personal care attendant (PCA) program -- self-directed, community-based care. I am lucky to live in Massachusetts, a state that embraced this concept early on and chose to divert public money into one of the most generous PCA programs in the country. This has enabled me, despite the fact that I am far from wealthy, to hire and manage my own staff of caregivers. They are beholden to me for their pay, so I get some respect from them and control of my life. But I am still always one absent PCA away from chaos. The specter of institutionalization always looms. *** One day when I come to visit my parents I notice that my mother is missing the seat cushion from her wheelchair. I don't say anything about it when I am with them, but when I get home I call the manager of the nursing unit and complain vehemently to her. I demand to know: why is my mother not getting such basic care? Doesn't the manager realize that pressure sores can lead to immobility, which can be disastrous for elderly people? How can she allow this neglect to happen? My tirade has the desired effect of sending the apologetic manager scurrying off to replace the seat cushion. And when I hang up the phone I feel good about protecting my sweet and fragile mother. At the same time I feel that I have betrayed my father by usurping his role as my mother's protector. And the fact that I haven't shared my rage and sorrow about her vulnerability feels like a betrayal, too. In an effort to avoid upsetting him, I have infantilized and excluded him. And that is exactly what my parents did to me. They hid their grief about having a child with a disability. They hid their frustration about their inability to cure me or relieve my unhappiness with my condition and the discrimination I suffered. They kept me from knowing them. Now I am doing the same thing to my father, and I regret it. So much in our relationship has become reversed. My father's love and patience enabled my existence and nurtured my creativity. He is the one who stood up for me and demanded I be treated like a "mensch." He is the one who stretched the canvases I painted on, who drove me to the library where I satisfied my passion for reading and learned that there were other kinds of heroes in the world besides the baseball players and movie stars everyone worshiped, intellectual heroes I might emulate. Now he is dependent on me in many ways. Ruth and I manage his finances, sort his medications, buy him the few things he needs, drive him to family get-togethers, and advocate for him with the administrators of his retirement community. I used to admire his independence, discipline and self-sufficiency. Now I pity his helpless discontent, his slow withdrawal into the gray fog of dementia. My heart breaks for how much of him we have lost already. This sense of loss is how I identify with him most deeply. My disability is slowly progressive. Each incremental decline in strength has frightened me ever since my similarly disabled brother died when I was six and he was nine. He succumbed to pneumonia. I also have respiratory insufficiency but survive by using a portable ventilator that sits on a tray on the back of my power wheelchair. I am 62 years old and constantly amazed that I have survived this far. Mine is a pioneering generation of people with severe disabilities who are living longer, thanks to smarter medicine and better technology. We are moving into unknown territory, and the only thing certain is that our bodies degenerate faster than normal. My changes are palpable, undeniable. The usual ways that people defend against a sense of mortality don't work as well for me. I was never able to speak with my parents about this abiding fear. We had a covenant of silence: they never shared their grief about losing a child, and I never revealed my sorrows. Growing up, I felt it was my role to compensate them for their loss by being good and never complaining. I idealized them and considered myself feckless and undisciplined in comparison. It took me a long time to recognize their limitations and my contrasting abilities. To a certain extent our differences were as much generational as they were individual. Part 3 of "The Gathering Fog" will appear in the March 2009 issue of Wordgathering.
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