Writer and editor Gerri Gallagher recounts the heartbreaking story of her younger sibling’s primary progressive aphasia
No one loved a party more than Constance. As a tiny child she would always reach first for her best dress and patent “Sunday” shoes, even on schooldays. At birthday parties she delighted us all with her rendition of “Hello, Dolly”, dancing exuberantly and prancing around until it was time to go, and then she would cry. I’d scoop her up and tease her by singing “The Party’s Over”, promising that there would be another celebration soon.
When I moved to the UK after my wedding in 1986, no one cried more than Constance. She was inconsolable. In my Filofax, under her name, she had scribbled a note that said, “Best pals always.” In between my quarterly visits back to the States, we spoke regularly and stayed close, regardless of the distance. Often, she would speak of her longing to live my life – to be married and have a career as a magazine editor.
The following year our mother had a stroke, and my trips to New York became more frequent. As a result, Constance and I spent more time together than we had in years. We fell back into our sisterly patterns, and I relished being with her. We walked to and from the hospital in what I initially thought was companionable silence.
The news was cataclysmic, because there is no treatment, no cure. Given her absolute abhorrence of doctors and testing, we guessed that Constance would never agree to participate in the observational and interventional studies at the Mesulam Center for Cognitive Neurology. We were correct. Nor did she agree with the speech therapist’s recommendation to do “voice banking”, which would have involved her recording a series of short statements that could later be used for playback.
More than anything, I long to know if I have been a good sister. Did I give her enough emotional support when she needed it? Did I love her enough? These questions will never be answered. It is too late. Though I accept that I can’t save her or change the situation, it still haunts me.
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