Years before my kind and funny husband Alan was diagnosed with multiple system atrophy (MSA), he exhibited symptoms of the rare and fatal neurodegenerative disease.
The first inkling we had that something strange was happening in Alan’s brain was in 2011 – although we didn’t realize the significance of the problem at the time – when he started acting out in the middle of the night while he slept. He might flail his arms and yell, or grunt and groan and kick the mattress repeatedly. Not every night and certainly not all night long. As his episodes increased in frequency, duration and intensity, I became more concerned. Five years later he would be diagnosed with REM sleep behavior disorder, an early sign of several neurodegenerative illnesses.
Soon afterwards, Alan’s bladder stopped working. When he stood up, his already-low blood pressure dropped another 30 points, leaving him dizzy, light headed and disoriented – a condition known as orthostatic hypotension. What’s more, his ears rang, the bottoms of his feet burned, his fingers turned purple and felt like icicles when everyone else’s hands were toasty warm.
Year after year, test after test, we lacked a proper diagnosis.
In the summer of 2015, at Alan’s first appointment with a neurologist who specialized in movement disorders, I marched into the office and proclaimed, “I believe my husband has multiple system atrophy.” My conclusion was based not on any extensive medical background – because I don’t have one – but on my compulsive Googling of Alan’s symptoms, of all possible illnesses that might fit his history. It was probably the first time in my life I really didn’t want to be right.
I knew from my research that MSA was a nasty illness, but I didn’t know it in my bones.
After asking lots of questions and putting Alan through a series of exercises, the neurologist could only suspect but could not confirm a diagnosis.
Alan continued seeing his neurologist every six months. The physician ordered a variety of brain scans and tests and requested a second opinion from one of his colleagues. As input accumulated, the verdict evolved. Two years after we first met Alan’s neurologist, he finally confirmed, “There doesn’t appear to be anything else it could be besides MSA.”
According to some experts, MSA sufferers live for six to nine years after symptoms start. We didn’t know when to start counting down from: Do we start counting when Alan’s REM sleep behavior disorder symptoms erupted – nearly seven years ago?
Alan was beside himself with grief that he was going to die way too soon.
Over the course of Alan’s illness, he retained his great sense of humor and was amazingly resilient. Having been a staunch supporter of medical aid in dying who was overjoyed when Colorado voters approved legislation in 2016, it was no surprise that he hoped to take advantage of the law. Along with this, a woman in our support group and another close friend had ended their suffering using medical aid in dying. Because of these experiences, the option did not feel foreign to us.
As he became less able to participate in activities that gave him joy and more distraught that he had to rely on others to take care of his basic needs, Alan decided it was time to talk to his medical providers. While Alan didn’t yet meet the eligibility requirements for accessing Colorado’s law, in January of 2019, we connected with Kaiser’s palliative care team and we discussed Alan’s prospects for being approved for medical aid in dying.
Throughout the year, Alan endured several hospitalizations. We probably went to the ER once a month. Twice he suffered blood clots in his lungs, and twice he had urinary tract infections that turned to sepsis. It was one thing after another. It was too much, and Alan grew tired of the unrelenting hospital visits. He did not want to do it anymore.
In August, Alan’s doctor agreed to place him on hospice. Once Alan was enrolled, he was anxious to jump through all the figurative hoops of accessing aid in dying.
In early October, Alan’s needs escalated beyond my capabilities to care for him at home. Together we chose a nursing home where he could live comfortably with 24-hour support. All the while, that month, Alan was proceeding with the necessary doctor visits to obtain an aid-in-dying prescription. He felt such relief and peace of mind when he was approved in late October.
I, however, was very torn the whole time. Of course I didn’t want him to suffer, but I also didn’t want him gone any earlier than need be. I had spent more than two decades married to him, and we enjoyed many adventures together. Even when Alan was limited to his wheelchair, we found wheelchair-accessible trails to hike. We also discovered a state park that offered track chairs (wheelchairs outfitted with tank tracks) to individuals with limited mobility so we could still enjoy exploring nature. He brought so much joy to my life – so much joy to every person whose life he touched. Everyone loved Alan. He was a kind, generous man who loved making friends, making people laugh and delighted in helping people with home maintenance and repair.
Throughout the fall, he was in pain so much of the time and was relying more and more on morphine to make it through each day, each night. If he had enough morphine in his system to control his pain, it further muddled his speech. He was frustrated by his constant pain and his body’s increasing debilitation, but not being able to talk clearly and without struggle was the worst insult. Not to be able to make people smile, not to be able to offer a kind word or ask how someone was doing, that was the ultimate hardship for him.
In early December, Alan declared, “I’ve been thinking. It’s time. I am out of juice.”
I pleaded with Alan to wait until after the holidays. I didn’t want his daughters, granddaughters nor me mourning him through the holidays. Alan obliged and we picked a date when those he wanted in attendance would be available: January 11, 2020.
As the date approached, Alan shared his plans with friends. Once we finally told the world, everyone wanted to come visit and it was really exhausting for him. Close friends were scheduled for short visits. Dozens of others – former clients, people from church, neighbors – wanted to say their goodbyes so we scheduled a gathering where people could bring a memory to share with Alan. An hour is all Alan could handle before pain and exhaustion overwhelmed him.
On the morning of January 11, Alan had breakfast with a close friend and one of his daughters. Hospice then helped transfer him from the nursing home, where he had lived since October, back home to spend his last hours surrounded by people and things that provided him comfort and joy.
We had excellent support and guidance from Kaiser and Alan’s hospice team. The day of, the hospice nurse walked through the plan one last time with me and Beverly, a friend and retired nurse that would help with mixing the medications, and reviewed the contents of the hospice comfort kit – a collection of medications we could use to keep Alan calm and pain-free.
We – Alan’s daughters, his two oldest granddaughters, two close friends, our minister, and myself – told stories throughout the day. Beverly played her cello and our minister led us in a prayer as we all held hands around Alan’s bed. Then we went around the circle taking turns expressing thanks for Alan and blessing him on his journey.
An hour after Alan took the preliminary medications, I took my position next to Alan’s bed. He grabbed my hand, squeezing hard, and did not let go. My fingers promptly fell asleep. I don’t think Alan was afraid. I suspect the firm grip was intended to reassure me that all was well. It would be in keeping with Alan’s character to be worrying about me, not himself, as he prepared to die.
Someone started the Willie Nelson playlist we had set up on an iPad in my office, which was next to Alan’s room. Alan took a sip of his medication, which had been mixed with apple juice, and immediately spit out the straw. The concoction tasted bitter and metallic. After the initial shock, Alan, determined to end his suffering, continued to drink it until the mug was empty.
Within twenty minutes, Alan fell asleep. He was already starting to nod off when his eyes fluttered open, and he looked directly at me. “I love you,” I whispered, my eyes riveted to his. “I love you,” Alan mouthed back, his last words.
We were blessed to send Alan off in such a peaceful way, in a manner that honored who he was. He had a very sweet, intentional passing. He died exactly the way he wanted to: at home, surrounded by people who loved him.