We Used to Dance is Debbie Chein Morris' gut-wrenching memoir about life with her severely disabled sister Judy. It is the first of its kind that I have read. Their parents refused to institutionalize their daughter, who only had limited and decreasing arm movement and who could not speak due to cerebral palsy. They cared for her in their home until, when in her 50's, Judy's doctor threatened to report their widowed mother's lessening ability to provide the intensive care she needed to Adult Protective Services if the family did not find an institutional placement for her. Debbie, long married with adult children and a working teacher, shares her agonized thoughts during the entire process until Judy's ultimate death less than two years after her placement in a nursing home that specialized in caring for severely disabled adults. Readers cannot but help emphasizing with Judy and Debbie and their family, but they also cannot help but want to shake the author at times for her self-described shyness that seemed to keep her from being a more persistent and effective advocate for her sister. Nonetheless, Debbie does a good job of articulating her conflicted thoughts and guilt about the challenging situation and the decisions with which she wrestled. .

Thank you to NetGalley and the publisher for providing this book in exchange for an honest review.
What an incredible story. The dedication the author has to her sister was amazing.
The author writes with such honesty and emotion, especially the last few chapters. It may be easier for us on the outside to judge her decisions but putting yourself in her shoes, it really shows the tough, emotional decisions she had to make in the best interest of her sister.

"We used to dance, my sister and I. There we'd go, swirling around the room, both of us laughing with glee. Of course, we were younger then; she, more relaxed and I, more able to hold her in my arms. Oh, how we dipped and glided, so comfortable was she in my arms. Those were happy days when we used to dance." (loc. 34*)

Debbie and Judy were identical twins, the babies of the family, in some ways the best of friends, but Judy's cerebral palsy kept her between wheelchair and bed while Debbie grew up and moved away. Unusually for the time, their parents kept Judy at home—knowing that they would be able to provide a love and care that an institution could not—but as their mother aged and it became harder and harder to care for Judy at home, Judy's doctor gave them an ultimatum: it was time for Judy to go into a nursing home.

"We Used to Dance" is Morris's story of that transition, one neither she nor her mother nor Judy wanted. Morris is clear-eyed in her assessment of the situation: yes, Judy's care at home was no longer the same quality it had been when their father was alive or their mother younger—but she had the benefit of living with a family who loved her whole-heartedly and unconditionally, and from the beginning of the book Morris is asking hard questions about the point at which the importance of happiness supersedes that of longevity. Morris's conclusions won't be for everyone, but it's clear that she and her mother—and, though they were less involved in Judy's care, the rest of the family—wanted what was best for Judy, as did Judy's doctors. It's a terribly hard place when "best" is subjective, and the person cannot be a full participant in that conversation.

Morris doesn't include concrete recommendations for other caregivers (though the final copy might be different), but if you take away one thing from the book I hope it will be this: "I didn't want to rock the boat. What I didn't realize then was that it was my right to rock the boat if I felt things weren't up to par. I forgot that we are the voices for those who cannot speak for themselves." (loc. 746)

Thanks to the author and publisher for providing a review copy through NetGalley.

*I read an ARC, and quotes may not be final.