Baby Steps toward Life
By Dawn Jones-Baer
Daughter of Former Patient & Grief Support Group Member Casa Grande, Arizona
26
M
y mother did not raise me to be what she thought I had become. She raised me to be loving and devoted—at least, that’s what she told me day after day. I was not raised to be a heartless, poisoning beast that had turned my back on all that was good, true, and compassionate. But through the glasses of her confusion, she saw me as profoundly damaged; and worse, she believed I meant to harm her until she died of whatever mischief I could sneak upon her. She watched me like a hawk, unless my father was in the room; then she watched him like an eagle eying a snake sneaking up to get her eggs. It was hard for her to decide which of us was trying to break her heart more. Every waking moment of every day she used all her wiles to fend off whatever scheme she imagined we had in mind. She slipped across the floor, listening to conversations and peeking around corners. She collected car keys so she wouldn’t be stranded, even though she was no longer able to drive. She accused us of changing the phone number of every single person she had ever known. Daily I was called to leave work and jump through hoops to try to meet her demands, and no one in the family was getting any sleep. We begged our family doctor for assistance, and he wanted her to be thoroughly evaluated one last time. So we took her to the hospital; and when she came home, she wondered why we had not brought her back to her own house and why we let strangers and Boy Scouts live in the marital bedroom. There were long
stretches of yelling, glaring, and sheer visceral fear. We walked on egg shells, but it didn’t matter. Our words always hurt her; and when we did not speak, she sat in silence—wounded, bereft, and thoroughly terrified. My friends saw dark circles form under my eyes and came forward with well-intentioned though unsolicited advice; but they simply created irritation that was fed by fatigue. Once in a blue moon, my mother would briefly return to an undamaged part of her brain and we’d glimpse the dynamo we’d known all our lives. We could take a breath; and even less frequently we’d have a moment of laughter or a sliver of a shared memory, a brief interval of belief in miracles. Then the darkness would fall again, and in contrast life would feel even muddier, colder, more hopeless. The hospital called with the evaluation results the day after Thanksgiving 2010: she had rapidly progressing dementia and the prognosis was poor, usually months to a year. She didn’t seem different; but the word dementia brought to my father to tears, and he seemed to wither before my eyes. He lay down and cried, and I think he was tempted to just pull the cover over his head and hunker down in bed for the rest of his days. He couldn’t tell Mother what he had learned, feeling it would destroy whatever sense of purpose and self-preservation she had left. So we sat and talked about what the next year with her would be like, how we could handle her care and make her life worth living. What a confusing time it was that first day. We secretly hoped she’d go on longer, yet secretly feared she’d suffer for a much longer time than that. As in Macbeth, we had to screw up our courage to the everyday COMPASSION