My mother is 72 years old. She was diagnosed with Alzheimer disease, frontal lobe type, several years ago. She has been living at Emerson Village in Watertown, Massachusetts for over a year and a half now, where she was placed due to hospital malpractice and misinformation by and elder service called Springwell. My mother has a history of being unable to adapt to institutionalized care because, clinically speaking, institutionalized care does not respond to her needs. She is also an artist and has never liked the idea of institutionalized care. When her own mother was diagnosed with Alzheimer’s disease and placed in a nursing home, she was against it, but caved under the pressure of siblings who were better advocates than her, due to her life long disabilities. My mother needs a lot of 1/1 attention to meet her complex needs, she responds only to music and dance therapy but Medicaid/Medicare do not cover these services in institutionalized care, the degeneration of her frontal lobe make it increasingly difficult to block out sounds and stimulation (nursing homes are very loud and busy), she requires a lot of patience but staff are abrupt and always rotating, and staff is task-centered not patient-centered due to corporate medical culture. My mother is non-verbal and requires staff specialized in non-verbal communication but staff is not trained to do this, and her great vulnerability make her a target for neglect and abuse. When my mother's needs are not being met, she exhibits behaviors that staff blame her and me for, vilifying her instead of linking their neglect and abuse to how she responds to their care. She has been abused and treated in the most dehumanizing ways, at Emerson Village and in prior institutions, and now Springwell, and elder service agency in Watertown Massachusetts is denying her the right to go home because they will not pay for home care.

Tell Springwell to stop making reckless clinical decisions against elders, and tell them to stop getting in the way of families and elders living together, let us be together and live in the community according to our own values. Let us exercise our human and legal rights to choose how and where to live at the end of our lives. My mother was a teacher and a Peace Corp volunteer, she deserves to be well cared for and live safely. We all do. This could be you or someone you love.

Spread the word!