I’m not going out that way. I will not slowly lose control of myself and take my family down with me. I will die with my dignity intact.
These are words my husband, Rich, said loudly and clearly to anyone who would listen -- brave, hollow words for many people. For Rich it was a personal vendetta against his horrid brain disease, Frontotemporal Degeneration – Behavioral Variant Type (bvFTD). A vendetta he would carry out with dignity.
In my 30+ years in private practice as a psychotherapist, I have heard “death with dignity” proclamations many times. Different from the escapism of suicidal ideation, death with dignity is not for people who WANT to die. It is the wish of people who feel they must take control of HOW they will exit their life on their own terms. They do not accept the death cards they have been dealt and instead create a personal exit plan that is not desired nor wanted, but more palatable. Actually executing their plan is more challenging than anyone knows.
Rich, in true attorney fashion, researched every aspect of Death With Dignity. When he was diagnosed with bvFTD, the “right to die” (how a terminally ill person chooses), had not yet been made legal in California. It was finally approved in October 2015. Rich would discover that this law could not help him as he did not fit the criteria.
To qualify for Death with Dignity in California, and now many other states as well, one must meet the following requirements:
- Request from a medical physician, under their own volition, the means to take their own life. (Note: It needs to by an MD willing to hear the request. Some are not willing to participate in Death with Dignity.)
- Be able to repeat this request 15 days later and in writing
- Have two medical physicians deem that he or she is within six months of death from whatever terminal disease is present
- Be of sound mind in making this request
- Be able to carry out the death plan entirely under their own volition
This plan does not work for those suffering with degenerative brain diseases. When someone with Alzheimer’s, Lewy Body Disease, Frontotemporal Degeneration, ALS or many other types of these slow, insidious, brain-destroying illnesses is ready to die, long gone is the mental capacity to choose or carry out the plan.
Rich was well aware of this issue as he had watched my father die from complications of Alzheimer’s in 2009. My dad had his own Death with Dignity plan, but blew right by the beginning stages of the disease where he was capable of carrying out his desires. He was ill for 10 years, declining into the abyss of this nasty brain deterioration. My mother, my brother and I were happy to care for him. Rich was determined that he would not miss his “window of opportunity” to carry out his own plan.
In the beginning, Rich’s exit plan involved committing an act of violence against himself with a weapon. I was extremely opposed to this for many reasons. I have treated many First Responders who have been traumatized and I did not want our family to contribute to anyone’s trauma. I also did not want to be traumatized by finding him gone like that. I explained to Rich, hundreds of times until he gave up this violent plan, that he was a wonderful man who deserved to die peacefully in my arms. He deserved to go out with love, as he had lived his life.
When Rich gave up what he called “the easy method,” he began researching his death plan. It became a huge challenge and not as simple as he thought it would be. He talked to any medical professional who would give him feedback. Hours were spent on the internet determining exactly how different methods worked. He read books such as Final Exit by Derek Humphry and anything else he could find. When he finalized his plan, he wrote out his exit strategy step-by-step. His greatest fear was that he would “botch it” and create more of a problem for himself and possibly for me.
Rich also sought legal advice from fellow attorneys. He was adamant that I would never be blamed for helping him carry out his plan. With meticulous detail, so characteristic of him, he thought of every possible outcome and provided a preventative measure for that complication. Once his plan, that had only his fingerprints on all components, was stored in a separate safe that no one was to touch, Rich relaxed. It was amazing to see him stop agonizing about how he was going to die. The very act of having his plan ready to go whenever his “window” of ability to carry it out began to close, gave him tremendous peace. It allowed him to enjoy those few moments of mental calm he could find.
As bvFTD took more and more of Rich’s ability to control his emotions and he descended into a mentally tortuous and dangerous place, he knew his “window” was closing. He told me he was ready to execute his plan. Literally hundreds of times over the eight years that Rich was ill, I talked him out of wanting to die. Sometimes I would talk him out of it many times per day. In the beginning of his illness, I could “buy” months by saying things such as “you need to wait until after the holidays” or “the kids’ birthdays are coming up.” As his illness progressed I could get him to wait for shorter and shorter periods. By the end, I could only get him to wait for hours. I would say, “Let’s put you in bed to rest and see how you feel when you wake up.” The day he told me he was truly ready, I could not get him to agree to any more time. We both knew his window was closing.
We waited 24 hours before we called our adult children to come over. We sat on the floor of Rich’s den. The room he called “The Section Eight Ward.” He explained to Tara and Ashley that his window was closing but more than that, he could no longer suffer with the tortuous emotional roller coaster of bvFTD. He was also deeply afraid that he would hurt me in one of his emotional rages. Many times per day, Rich’s brain disease had him cycling through horrendous emotional swings such as rocking and sobbing on the closet floor, severe anxiety, instantaneous rages, hysteria and paranoia. He had become extremely fearful of even going outside in the backyard.
Tara and Ashley had listened to their father talk about Death with Dignity for years and were prepared for his wishes. Intellectually understanding the concept and wrapping your heart around it are two very different issues. Together we grieved as a family. Everything was about to change and we knew it. Life without Rich would be excruciating. Life without bvFTD would be a relief for all of us, especially for Rich.
All four of us were very clear that we would not miss the horridness of bvFTD. We were all extremely clear that our love for each other would live on and that my husband, their father, would be hugely missed. We all agreed that it was time for the torture to end. At the time, these were the hardest hours I had ever experienced. Watching the three people I loved the most in this world (besides Tara’s daughter, our grand-daughter, whom we did not include in this conversation), be ripped with grief, is beyond my ability to describe in words. Sitting on the floor of “the Ward” will forever be emblazoned on my brain.
The five days after that conversation with the girls was pure torture. Rich and I barely slept. We cried together about his plan. We had all agreed he would wait until the following weekend. I could not sleep knowing every minute left was measured. The girls, Tara, Ashley, Ally and I needed some time to say goodbye. We included Rich’s beloved sister, Claire, in his plan and she needed time with him, as well. There were other people Rich needed to say goodbye to. All of this takes time. These are not simple conversations.
Rich and I wanted time to make sure that he was ready. For years I had always told him that we could “ride this train to the end of the line” and that I would always make sure he was never alone and afraid. He knew I would take care of him until FTD, or some complication, took his life naturally. Rich was always extremely clear that he was not going out that way. Every time we discussed NOT doing his Death with Dignity plan, he was adamant that he was NOT going to let FTD take him “one brain cell at a time.”
The final five days, as they later became to be called in my head, were excruciating. The chaotic, emotional extremes ranged from frightening to beautiful. We were exhausted from lack of sleep and every nerve was on edge. I wish I could say that I was my absolute best self every minute of those “final five,” but I ranged from peaceful to panicked about Rich’s decision. His emotional roller coaster was, understandable so, in full swing as only bvFTD can create. My emotions were wrecked, as well. So were the kids’ and his sister, Claire.
In the final hour, Rich’s Death with Dignity was amazing. He was calm, centered, peaceful and very ready. He was incredibly brave and very stoic. He executed his plan with deft precision. He would not allow me near him as he carried out all the steps he had planned. When he was finished, we lay down on the bed and I wrapped him in my arms. His sister lay at his feet and held on tightly. Rich slipped gently and gracefully into God’s arms while lying safely and tremendously loved in mine.
Rich Bay died on Jan. 8, 2016.
For more complete information about California’s Death with Dignity: https://www.deathwithdignity.org/states/california/
A beautiful video is available free: http://www.howtodieinoregon.com/