Angels on Her Team
Westchester organizations work together to help a woman with ALS
Susan had been diagnosed with Lou Gehrig’s disease (ALS) two years earlier and was now bed bound. The disease, which progressively robs people of the ability to control any muscles – including those involved in breathing and swallowing – had rendered Susan nearly unable to move and completely dependent on her family and aides paid for by Medicaid for everything other than thinking or speaking. Her husband worked two jobs and was exhausted when he came home. He and her three adult children were struggling to come to terms with Susan’s debilitating and terminal illness. Because they did not have the money for renovations to make their house handicap accessible, Susan was unable to go outside her home except to go to the doctor, when medical transport carried her out on a stretcher.
Susan’s ALS medical team at a major New York City medical center referred her to the MAC Angels Foundation, which is based in Larchmont and supports families with ALS in the tri-state area. MAC Angels proved to be angels indeed, providing funds and arranging for a ramp to be built so Susan could leave her home in a wheelchair rather than a stretcher. MAC Angels staff connected the family with Pathways To Care, a program of Westchester Jewish Community Services (WJCS), serving people of all religious denominations. The counselor at Pathways to Care helped Susan and her entire family heal many of the emotional wounds caused by her illness.
Therapeutic massage was not covered by Medicaid but made Susan significantly more comfortable, so MAC Angels arranged for and paid for weekly massages. As Susan grew weaker, she enrolled in Jansen Hospice and Palliative Care. The support she received in hospice over six months stabilized Susan to the point that hospice care was no longer the most appropriate care for her. MAC Angels then helped Susan transfer to a home-based palliative care program offered by Hospice Care in Westchester & Putnam. This service provides Susan with many similar benefits of hospice (regular nurse visits, some medical equipment, family support, et al) and will transition her back onto a hospice program when she becomes eligible again (when her life expectancy is six months or less). Most importantly, MAC Angels’ staff help all of the organizations involved in Susan’s care coordinate with each other, help support her family as well as Susan, and will remain involved with the family throughout Susan’s illness journey.
Story provided by staff of MAC Angels.