By Joanne Tubbs Kelly
Decades before my husband, Alan, was diagnosed with Multiple System Atrophy, he told anyone who would listen that we treat our pets better than we treat our elders because we help them die when their suffering becomes too much to bear.
In 2016, we both voted for Colorado’s End-of-Life Options Act and were delighted when it passed. The act allows mentally-capable people whose death is inevitable within six months to receive a prescription for a life-ending drug. But here’s the rub: the person must be able to ingest the drug on his or her own, either by drinking the cocktail directly or by pouring it by themselves into their feeding tube. That can be difficult for someone in the end stages of MSA, but it didn’t stymie Alan.
Always ready to laugh or make a joke, Alan was an amazingly good sport through all of the indignities MSA delivered – the incontinence that forced him to catheterize himself each time he needed to empty his bladder, and later to be permanently catheterized, the orthostatic hypotension that left him lightheaded and dizzy, the problems with balance that ultimately confined him to a wheelchair, the REM sleep behavior disorder that forced us to sleep in separate rooms. He took it all in stride, except for two things – he hated not being able to take care of his own body, his own needs. And most of all he hated that his illness made him sound like he was falling-down drunk when he tried to talk. Many people had trouble understanding him. It became increasingly difficult for Alan to ask someone a simple question about their grandchildren or to tell a silly joke. It took away the thing that gave Alan the most joy in life.
Early in Alan’s illness, our Google research led us to suspect he had MSA. But the doctors wanted to eliminate all the other illnesses that look similar, so they didn’t give him an official MSA diagnosis until August of 2017, and from there, Alan’s downhill path was steep and his descent was swift. Alan asked me to make an appointment with our healthcare organization’s palliative care team in January 2019 so he could make sure he understood the rules for using the End-of-Life Options Act. He wanted to be prepared when the time came. Our conversation with the team led me to believe Alan probably wouldn’t be able to qualify to use the act for two reasons: he would have to prove he had decisional capacity (the ability to make good decisions on his own behalf), and he was already showing signs of problems with executive functioning; and his shakiness would make it hard for him to ingest the medication without help.
In August of 2019, Alan’s doctor referred him to hospice, which was open only to people who are likely to die within six months. So, Alan met the first criteria for using medical aid in dying. Because I could no longer take care of Alan safely at home, we were in the process of moving him into a nursing home. As soon as he moved in, all the nurses and aides fell in love with Alan. At the end of the first week in October, his first week at the nursing home, he had his first appointment to be officially evaluated by the palliative care team. They asked questions to evaluate his mental competence and asked him to demonstrate that he could drink a half cup of liquid without help. Alan was having a good day, and he breezed through the evaluation. I filled out the paperwork for him and made the other required appointments, and by the end of October, Alan got his answer – he was approved for medical aid in dying. Alan was relieved, knowing that he had the option of ending his life if he decided he couldn’t go on.
In early December, Alan told me he was “out of juice” and ready to call it quits. I convinced him to wait until after the holidays so his daughters, granddaughters and I would not be mourning him every year at Christmas. Alan agreed to wait until January, and we picked a date that would work for all the people he wanted in attendance. Alan wanted to go home to die in his own bed, surrounded by people who loved him. So, I did the most loving thing I could think of; I arranged it for him, just the way he wanted it. He died a tender, gentle death on his own terms.
She Writes Press will publish my memoir, Walking Him Home: Helping My Husband Die with Dignity, on August 9, 2022. If you have MSA or are a care partner of someone with MSA, you will relate to the struggles and challenges in this memoir, the small triumphs and joys. And most of all, the love.
Death with Dignity is only available in a select few U.S. states, and The MSA Coalition seeks to share experiences like this with the MSA community to provide options. We encourage our community members to discuss all options with a healthcare team, family, and close friends before making a decision. Find more resources on medical aid in dying here.
