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My husband and I returned to the United States in June of 1998, after an absence of some years during which we had worked and lived in Hong Kong. While living abroad, we had already learned the meaning of the term "long distance caregiving" from concrete experience. When the call came from Connecticut in January of that year, to inform us that at its 1998 national convention, my mother Roberta would be awarded the American Guild of Organists' President's Award, our lives began inevitably to change course.

At first, we hoped attending the convention with Roberta would become a special event during an otherwise routine trip home, but as the date of the convention approached, our awareness of the possible changes to come became ever more insistent. How could Roberta pack for a convention without the help of someone who understood what kind of event a national convention could be? How would she face her younger colleagues in the national organization she had led some twenty years before? And, no less important, who would substitute for her at the local Sunday service she normally would play? We arranged for Roberta to fly from Connecticut to Denver, Colorado, where the 101st annual convention was to be held, accompanied by a close friend and local AGO colleague, and booked our own travel for the 20-odd-hour trek by air from Hong Kong.

As we came through the revolving door of the convention hotel, I heard, through the echoing din of a crowded lobby, my own mother's distinctive voice cut away the noise: "Is that Grace?" From that moment, my experience of family life was turned upside-down, as I learned the ultimate value of seeing things from another person's perspective.

Scrabble with Roberta
Scrabble with Roberta, ca. 2000.

After the Denver convention, our sudden relocation to New England became a fait accomplis, followed by a five-year period of hands-on engagement in caregiving from very close range, regularly sharing tasks with Roberta's helpers not only in order to make ends meet, but to the extent possible, also to create a seamless experience of daily life for her.

If you are interested, you can learn a bit more about Roberta's plan of care, and about some of the people and organizations who helped us to implement it, by following the links below. Or, if you are in the U.S. and simply need help with the care of a parent with dementia, you might prefer to contact your nearest chapter of the Alzheimers' Association.

Among the most important things I learned from acting as Roberta's "carer" is that there's no substitute for intimate knowledge about the person who suffers from dementia (whether or not there's a diagnosis of Alzheimers'—which we did not have). Realizing this kept me going through a long period of hands-on involvement, despite fatigue and ambiguity. Our sources of inspiration were many, from friends we met through implementing her care, to members of Roberta's own circle of professional associates, who sought to maintain contact with the person they admired, even as she became more remote.

But the most compelling inspiration came to me from Roberta herself, who innocently confessed in the aftermath of her AGO President's Award: "I guess you're the only person who knows what's important." Fast-forward to 2024, I have found this seemingly intuitive perspective echoed in many expert accounts of "being in relation to" dementia sufferers in the recent literature.

Whatever has brought you to the Roberta Bitgood Commons, I wish you well in your quest for inspiration, and thank you for visiting here!

Grace Wiersma


Caring for Roberta



Last revised January 15, 2024

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Contact: gwiersma [at] eclectronics [dot] net

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