Editor’s note: this article deals with end-of-life care and dying with dignity. Click here for additional material on this sensitive issue.
We sat hip to hip on the family room sofa that day holding hands, my husband and I. Dawn had barely grazed the horizon when our son, almost daughter, and niece joined us. I don’t remember what or if we ate. I do know coffee and tea were made and gulped, and we talked of the distances loved ones had traveled to join us. When my husband (I’ll call him John) got up to put empty cups into the dishwasher, someone said, “You shouldn’t be doing that.” He answered, “I want this day to be as normal as possible.” We were with him because he didn’t want to die alone, and this was the day my husband had chosen to die.
That morning he went on his customary three-and-a-half-mile walk, taken with a cheat sheet in his hand listing the street names and turns so he could return home safely. He would take his own life just hours later, but he insisted on following his routine. His bravery cannot be disputed.
That final day had been a long time coming. John was a scientist—a health physicist who loved to educate others about radiation safety. He was a world traveler, a skydiver, a hiker, a reader, and a man who never passed a museum without going in. Now he had Alzheimer’s. His father, his grandmother, and his uncle had all had it.
One day, approaching his sixty-eighth birthday, John told me he was worried. My modest, kind, and loving husband acknowledged what I had already seen for two years. His short-term memory was going. The disease could eventually lead to loss of speech, an inability to eat or walk unaided, a complete oblivion of the man he had been. In time he would not even recognize me.
The day we both faced the inevitable, we gazed at one another with tears in our eyes. He took a deep breath and then told me that when he could no longer follow his intellectual pursuits, when he could no longer drive legally, when he was not yet incontinent or blaming me for his own inabilities, he would take his own life.
It was a blatant fact, not to be disputed. As long as I could recall, taking one’s own life was considered wrong. People were routinely persuaded, prevented, coerced, or prohibited from taking charge of their own demise.
“How?” I asked. I’d heard of people who gulped an overdose of pills who became sick or even comatose but didn’t die.
“I’m not sure yet, but I’ll find out,” John said, explaining that he didn’t want to disintegrate so far that he was no longer himself. He also didn’t want to become a burden to me. I understood his logic.
Luckily, Alzheimer’s is a slow-developing disease, and we’d had several years that were only occasionally interrupted by his behaving in ways unacceptable to both of us. In the meantime I’d been putting out feelers to family and selected friends. What did they think of suicide as an eventual answer to our problem? Some couldn’t believe there was a problem. John was far too intelligent and logical for that, they said. Others talked vaguely of getting in trouble with the law. Few knew anything about death with dignity. They’d seen news and television shows about Jack Kevorkian who helped terminally ill people die. We certainly didn’t want anything to do with Dr. Death, did we? Wasn’t it sort of sleazy, they asked, and didn’t Kevorkian go to jail? They talked about doctors in Oregon giving cancer-ridden patients lethal drugs. Was that what John was thinking of doing? Taking an overdose of something?
By now we were members of an organization called the Final Exit Network, a member of the World Federation of Right to Die Societies. John was approaching the average number of years when Alzheimer’s patients begin a serious decline. I wrote to Final Exit to ask if he was a candidate. They said he came under the parameters of people they counseled about self-delivery. With Alzheimer’s disease, brain cells die and connections between brain cells are lost. All of a human being’s important functions are slowly killed off until the patient dies.
The year 2013 stomped into our lives a full ten years after I’d first noticed what I considered illogical thinking by my very logical husband. Now, John told me he was making too many errors, even forgetting important events. It was time for the end.
With Alzheimer’s there is a small window of opportunity, so to speak. A patient who admits their problem, although memory-impaired, can still understand his or her difficulties. A month or two later, the same person might not understand. He or she might even think there’s nothing wrong. At one point John and I had gone to the movies. John left after the beginning to go to the men’s room, but he couldn’t find his way back. He couldn’t remember the name of the movie nor the number of the theater in the complex. He tried unsuccessfully to find me. But he still understood what was happening. Consequently, he waited in the lobby until I found him. A little later in the progression of his disease, he would not have understood.
Shortly after a few similar episodes, the Final Exit Network gave me the name of a volunteer in my home state to contact. This person had me put the particulars in writing. I also had to include a copy of John’s last appointment with a neurologist. All that took time. Afterward someone else from Final Exit called John and asked multiple questions about his ability to understand and carry out his own demise. He had to show verbally that it was his decision and that he was capable of doing it. He also had to write a letter to the Final Exit Network stating exactly why he wanted to end his life. He agreed, but day after day he forgot about doing it. His forgetfulness had grown. I had to remind him. It wasn’t easy and gave me temporary feelings of guilt.
Eventually he wrote a most beautiful letter stating his family history, his own desire not to become what he called a vegetable, and his heartfelt desire to avoid becoming a burden to me. He worried that he might turn abusive or that I would be pauperized by his final care. He said nothing about the letter, just handed it to me and asked if I would send it. Reading it, I cried—the wonder of our well-lived life so encapsulated in his words.
Clinically depressed persons or others in like circumstances are screened out by Final Exit. John passed Final Exit’s scrutiny, and a guide, one of the volunteers who give their time to help others, contacted us. Again we had to state suicide was John’s decision, but that I agreed. Still, the questioning continued. Did we have any relatives or friends who might—for religious or other reasons—want to stop us? Did we have neighbors who would suddenly “drop in?” We had to be sure we would not be interrupted on the final day. We assured him nothing like that would happen. He explained he would have to visit us and go through the arrangements before the final date, make sure we had all the materials and understood the procedure. Because of his personal commitments, the first date he could see us would be a month in the future. The final day would be approximately a week later.
I felt as if a stone had hit me in the chest. Would we be passing the window of opportunity? John was obviously concerned, shaking his head. I understood and asked the guide if there was anyone who could help us sooner? In a month would it be too late? The guide said he would do what he could to find someone else.
The few days that followed felt like years but before the week passed, another person called us. Again we had to state all the reasons for our decision. Satisfied, the new person gave us a list of things John had to purchase, things he would need for his “final exit.” She also gave us two dates when she could come for a preliminary meeting in person, and she gave us two dates when she would be available for his exit. We had time to change our minds, but the dates were soon enough that I felt John could handle the preparations and execution. He chose April 20, the earliest of the two dates she gave, for his final day.
I called my son. “Please come as soon as possible. We need you.” He arrived a week before the final day, and we spent those seven days going places, doing things, making John’s last days as sweet as possible. Once we went to an expensive restaurant and blew the budget. Another time when we were out for dinner John ordered something omitted from his heart-healthy diet for years. Until Alzheimer’s made it difficult, he had worked out at the local gym daily, watched his diet “religiously.” We all smiled when he told the waiter, “I’ll have the liver and onions.”
That week I suggested John leave a suicide note. I wanted it clear that I wasn’t in any way coercing or giving him the kind of assistance that would be against the law. Again, he kept forgetting, but mid-week he typed a short, concise, and perfectly lucid note.
On the long-awaited morning, the four of us buoying up one another, John set the tone. No one was maudlin; no one was angry. There was only a quiet acceptance; this was what life had dealt us, and we would face it squarely. Although John had grown up in a Polish-American, Roman Catholic family, had been an altar boy and attended all Catholic schools, he had become a humanist. At twenty, when he’d graduated from Loyola University, he liked to say the Jesuits made him think, and in no time he thought himself out of religion. In 1979 we discovered and joined the American Humanist Association.
I don’t remember whether it was fair or freezing John’s final morning. I do know I felt incredibly close to him, and he to me. At nine o’clock the guide and her assistant arrived. Once again we went through the procedure we would all follow. Once again they asked if this was what John really wanted to do. Once again John’s voice rang without hesitation, “It is.” They looked at me and the others. I nodded my agreement. The others followed suit. The guide proposed we all go into the bedroom where John would recline on the bed. Ahead of time he had placed two helium tanks, connected by a hose, at the bedside. Two tanks were necessary because of the possibility one might be empty. It had never happened, but we couldn’t take any chances.
John made his goodbyes to everyone. There were hugs and teary eyes, but no one cried, no one protested. I sat next to him on one side of the bed, my son on the other. The others sat in chairs at the foot of the bed. John followed the routine he’d practiced, pulling down the clear plastic and making sure it was securely in place before reaching down and turning on the valve. Then he turned to me and said, “I love you.” I told him I loved him. We exchanged a look and within seconds he was unconscious. There was no pain, no problems. He would never suffer the indignities that he so abhorred. I would never have to see my very intelligent husband become a gibbering idiot.
Within twenty minutes or perhaps a half hour, he breathed his last. I don’t remember the exact time, but the Final Exit team said a half hour is average. When John had no pulse, they left the room. My family saw them out and John and I were together for the last time. I said goodbye and came out of the room. Following the advice of the Final Exit team, I went with the others to the local mall. We purchased something and then sat in the food court and tried to appear as if it were any other day. Two hours after we left home, we were back. My son “discovered” my husband and called the local police. In a normal voice he said we had just come home and he discovered his stepfather had taken his own life.
Eight minutes later the first of a parade of police, emergency medical technicians, and the county sheriff appeared. It was too late for resuscitation. Too late for anything except a report and notifying the coroner. It was clear John had taken his own life. In addition to his suicide note, he had a copy of the book Final Exit by Derek Humphry on his nightstand. He was still hooked to the helium tanks.
The police treated us with the utmost respect and kindness. We were all exhausted and I was crying now. They had to ask many questions; they had to take pictures. I told them John had left his body to a medical center’s teaching school. He wanted science to benefit from his problems. Unfortunately the school rejected the body because he had taken his own life. The coroner called several other universities trying to get one who would take John’s body. They all refused on similar grounds. This hurt me tremendously. How could I make it up to John? The thought of helping society meant so much to him. I had his body cremated and a few weeks later my son and I distributed his ashes in a lovely spot in the mountains John had loved. He made and executed a very brave and loving decision, and I thoroughly agreed with it. He will be missed more than he could ever know.
ADDENDUM: Why am I sharing this most personal account? I want the world to know how much I admire John’s courage and selflessness and I want people to know there are alternatives to suffering and pain during one’s final days. One can take charge of one’s own life and death. It is not against the law to commit suicide.
As the Final Exit Network website states, there were times when civil rights, women’s rights, and disabled people’s rights were causes everyone was talking about. While we still must safeguard those rights, it is time to spotlight another. That is the right to control one’s own death. We—not society—should decide when the pain and suffering is no longer bearable. I often think of the title of a Jane Fonda movie, They Shoot Horses, Don’t They? Why is it that animals are put out of their misery, but humanity is left to suffer? Too many have bought into the God myth that the Lord giveth and the Lord taketh away. If there were a father-like god, like most fathers, he wouldn’t want his children to suffer. The opposite type of father is the aberration. Today more and more people dismiss that biblical kind of thinking, but nevertheless a cultural bias exists.
Most of the people I spoke to about John’s decision didn’t even know the Final Exit Network existed. They didn’t know that suicide is not against the law. Some reacted in ways that revealed many still believe the subject shouldn’t be discussed. Unless we speak up, more and more of our loved ones will endure needless mental and physical suffering. Alternatively, everyone should be entitled to a peaceful, dignified death.