In the summer of 2017, my husband Paul and I were packing for our move from Chicago to Southern California when he commented that his shoulders felt weak. We assumed it was overwork. We were both eager to start our retirement in the Golden State – me from my career as a licensed clinical social worker, Paul from his own storied career as a helicopter software developer and former air traffic controller, ski patroller and pilot.
In California we were building our dream home, a model called “The Sanctuary.” That’s what the house was going to be – our sanctuary. We had plans to hike, bike and cross-country ski. Paul was extremely physically active, which used to drive me up the wall when we would work out together. We’d go to the health club, where I’d be on the treadmill on a flat incline, going 3.5 miles an hour, and I’d look over and see that he’s at 12 elevation, running at 8 speed, and I’d think, What the hell, how is he doing this? Fortunately, he liked to work out at night and I liked to work out in the morning, so that didn’t happen too often. But that was the kind of stuff he did.
We also chose Southern California for its warm climate. A year earlier, Paul had started complaining about how his hands were always cold, enough so that my daughter gave him a pair of hand warmers as a gift. We just figured it was part of the aging process. He mentioned how he was feeling to one of his doctors, who told him it was probably carpal tunnel.
By Thanksgiving of 2017, Paul had lost a lot of weight, which he and I had attributed to his type one diabetes. But my brother, who’s a doctor, was concerned about the combination of Paul’s weight loss and other symptoms. He said Paul needed to see a neurologist. Having just moved to California made getting in with a neurologist tricky. Paul’s care got delayed a bit, and in January of 2018, Paul was diagnosed with ALS.
Our retirement dream blew up in our faces. Paul had a variant of ALS that meant he didn’t lose his ability to swallow or speak, but he did lose the use of his arms and legs. We wouldn’t be hiking, biking, or skiing together, enjoying our sanctuary in the Southern California climate. We were far from our friends and neighbors back in Chicago, and the very things that had enticed us to California seemed more like teases now.
We began making adaptations to our brand new home – among the changes were automatic faucets, to adjust to Paul’s loss in dexterity to turn the handles, and automatic hand dryers. Paul wanted to stay as independent as possible for as long as possible. The problem was by the time we made these adjustments, the disease had already progressed further, requiring new changes.
In 2019, Paul’s doctor shared that he would likely become a candidate for medical aid in dying, based on the diagnosis. Paul and I supported medical aid in dying as an authorized option before we moved to California, although that wasn’t a consideration when we were looking to move. As it turned out, having this option was a real benefit of living here.
Paul was initially hesitant to use medical aid in dying because he was afraid people would think he had given up, that he was a failure. He had been a marathon runner, someone who had trained himself to keep going no matter what. You get to that mile where you don’t feel like you can go any farther, but you keep saying to yourself, just put one foot in front of the other. He was going to fight this, and beat it. Because that’s how Paul was. He went on newly-approved medication in hopes that it could alleviate his symptoms. But with ALS there is no winning.
I decided to get information about medical aid in dying anyway, in case he decided to go that route. We were told “Just because you make this decision today doesn’t mean it needs to be your decision in two weeks.” And Paul’s line in the sand did shift. Initially, he didn’t want to get to the point of losing the use of his arms and legs. Then, once that happened, he said he didn’t want to be bedridden or dependent on other people for his care. Then, he learned to accept those changes, and pain became the determining factor.
Together, we talked about quality of life and what it meant for him, and he told me, “Every morning that I get to see you is my quality of life.” I knew he didn’t want to leave me. He and I had always spent a lot of time together. We didn’t have to be doing much. We would sit and watch TV or just hang out. We went for walks and held hands. But towards the end of Paul’s life, his loss of use of his hands and arms meant that we couldn’t hug or hold hands like we used to. It was difficult for both of us.
In the end, I think he would have hung on if it weren’t for the pain. Even with constant pain in his neck, I believe he would have tried to go on a little longer if it weren’t for the severe abdominal pain he developed. At this point, he was on hospice and they tried to manage his pain, but Paul didn’t do well on morphine. He couldn’t tolerate a full dose. We tried at least five different muscle relaxants, but the pain got worse.
Our daughter got married on October 17, 2020. I went to Oregon for the wedding, and when I returned, Paul had deteriorated. He had to have 24/7 care at that time. His pain was at a new threshold, and he decided it was the right time for him to go. He insisted on asking both his children and mine for their permission, and all four said, “Absolutely.”
Paul chose to pass at home on November 6, 2020. The pandemic limited who could join, but my daughter came down from Oregon and my son was there as well. It was a wonderful passing. It was calm. He asked that we all hold him. He told us that he loved us, and we told him that we loved him. The nurse was there to help with making sure he got his medications, and as he’s telling each of us that he loves us, he turns to the nurse and says, “I love you, too.” Even in the end, he was still being him.
There comes a point where suffering doesn’t make sense, and it’s cruel. It’s cruel to keep someone suffering. Keeping Paul alive would have been cruel – to him, to me and to the family. It would have been the opposite of everything he believed and who he was.
From the time he ingested the medication to his death was less than an hour. As his muscles relaxed and the medications took over, he just stopped breathing. No more pain. No more hurting. He’s off running marathons somewhere else now.