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Ady and I had close relationships with his caregivers, many of whom worked with us for years. They allowed Ady to continue to live in our home, surrounded by his family, even after his paralysis had progressed to the point where I could not care for him on my own.

It’s likely that most A.L.S. patients do not have access to this kind of support — or to adequate caregiving in general. Health insurance plans cover little, if any, in-home caregiving to assist with the tasks of daily life (as opposed to skilled nursing services, which administer medicines and change bandages, for example). Medicare also does not cover assistance with activities like bathing and dressing. To qualify for Medicaid — which varies state by state and has lengthy wait lists for home care — patients and their families usually must exhaust almost all of their assets first, which would have left me, as a now 39-year-old widow, with almost no savings. We were fortunate to arrive at an ad hoc arrangement with our health insurance company that reimbursed most of Ady’s caregiving costs, which totaled about $40,000 a month for round-the-clock care.

You read that right — by the end of his life, we paid nearly half a million dollars a year for Ady’s care.

Early in Ady’s illness, he and I had resisted hiring caregivers, wanting to hold on to our normal life and fearing that having strangers in our home would be too intrusive. But once we reached the stage when we needed additional help, it turned out that having it allowed a little normalcy back into our lives. He and I could be partners again, rather than patient and caregiver. We could relax, chat and watch TV in the evenings, instead of my going through an hourslong routine — after putting our children to sleep first — to get him ready for bed. To be candid, hiring caregivers saved our marriage.

Read more in the New York Times.

Written by External Article
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