Death With Dignity – A Personal Choice

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/

Dr. Patricia Bay
Patricia Leigh Bay, Psy.D. is a licensed Marriage, Family Therapist with a private practice in Redding, California. Since 1979 she has loved working with children, adolescents, adults, families and relationships.
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36 Responses

  1. Beverly Stafford says:

    Oh Dr. Patty, how good of you to share Rich’s story in words and video. It must have been such comfort to him, knowing he was loved by you, your daughters, his sister and family, and your dog. I’m a supporter of the Focused Ultrasound Foundation and hope that strides in that field will eventually conquer brain diseases. Please understand that I’m not making light of Rich’s death when I ask, did his beloved dog grieve along with the rest of you? Animals can be so perceptive.

    Yesterday was not only the anniversary of losing your cherished husband but also of freeing him of a terrible disease.

  2. Patricia Bay says:

    Thank you for your kind words, Beverly. When Rich died, I let our dog, Harley, lay by his body until Harley got up and left. It took about a hour. I knew then that Harley realized Rich had died. From that moment on, Harley stayed by my side and became my constant companion. A true comfort. A beautiful blessing. As recent as 3:00 am this morning, Harley sat up in his bed next to mine and whined as he stared into the room. This is something he does occasionally. I said, “Hi Honey,” to the energy that was there. I said to Harley, “It’s just Daddy.” Harley looked at me as if to say, “Phhhhh, I knew that. I was just letting you know he is here.” I am still smiling. 🙂

    • Beverly Stafford says:

      And you made me smile. Beautiful.

    • craig wickham says:

      Patty, your strength and Rich’s strength and Harley’s strength are pure evidence that everlasting love exists and is more powerful than anyone can imagine. Your story about 3:am this morning made me sad and happy at the same time. LOVE

  3. Eleanor says:

    Thank you for writing this, and for the photographs, too, which tell their own story. Best wishes to you.

  4. James Montgomery James Montgomery says:

    Thank you for your courage in sharing this.
    I spent the last 15 years of my working career in nonprofit senior services, and saw a great deal of the various forms of dementia. It is clear to me that there are far worse things than death.
    I knew Richard only very slightly, but I now admire his foresight and planning a great deal. If you wait too long, the law prohibits anyone helping you avoid suffering thru the full course of a horrible disease. The legal issues concerning dying before full degeneration may be complex, but one thing is clear- we treat our pets more kindly than we do our loved ones.

  5. conservative says:

    If you are researching thanatology, search “how doctors die”.

    The private sector has incentives to overtreat. The VA has incentives to undertreat. “Terminal sedation”, (synonyms “palliative sedation” and “continuous deep sedation”) is common at VA hospitals. I overheard two residents at a VA hospital, saying “all the patients on my service are ‘no code'”. There was also talk about “slow code”.

    A not uncommon scenario is a patient who is “no code” getting coded and winding up in the ICU on a ventilator. The nurse floated to the unit on the night shift may not know the patient well. It is awful for the family to get the patient off the ventilator when the advance directive said the patient did not want artificial ventilation.

    • Steve Towers Steve Towers says:

      My dad died in a Kaiser hospital at 80 from an aggressive form of leukemia. It was so aggressive that he’d run a half-marathon about a week prior to his death and went to the doctor because he’d struggled to finish, which was unlike him. I was told his blood was so thick at that point that the his doctor couldn’t believe he hadn’t had a stroke during the run.

      I’d been unaware of the practice of “terminal sedation” until I witnessed it—it’s not just VA hospitals that do it. It was pretty obvious what was going on with each increase in the morphine drip.

      • conservative says:

        Thank you for your account. Most people are unaware of this option. When there is no hope of cure, the goal shifts to elimination of suffering. Some physicians, nurses and families have a hard time making the shift.

        I mentioned the VA because most of the medical literature on terminal sedation comes from VA hospitals. The VA Central Office has published protocols and regulations. In community hospitals, there are hospitalists and some other specialties who offer it to patients and next of kin. Terminal sedation is regarded by ethicists almost active euthanasia, but not.

        There are still far too many patients who die suffering fruitless interventions. My grandmother died a horrible in hospital death from emphysema with weeks of air hunger and fruitless painful radial artery sticks for blood gasses.

        Many, if not most, people will need to make end of life decisions for themselves or family. They sometimes need to be assertive to put the dying person in hospice.

        • conservative says:

          Terminal sedation involves a cocktail of drugs. A benzodiazepine makes them so sleepy they “die in their sleep” for practical purposes. It also causes amnesia, so one does not remember the suffering of the recent past. Anti-anxiety and anti-psychotic agents prevent agitation. Opioids are in the cocktail if needed to prevent air hunger or pain.

          The patient’s temperature is not taken, because it would be a bad idea to investigate or treat the source of fever. A pulse oximeter is not put on the patient’s finger, because the doctor does not want to investigate the cause or treat falling oxygen saturation.

  6. Gary Solberg says:

    Powerful video. Very moving. Thanks you for sharing the story and the video. Rich was a good man. He lived a good life, with very difficult but brave ending.

  7. Patty, I admire the courage it took you to write and share such a personal story with us. Rich’s spirit, strength, tenacity, generosity and humor come through loud and clear in this piece.
    I’m grateful for you, Rich and your entire family. Thank you!

  8. Shelly Shively says:

    Patty, thank-you for the courage it takes to share such a painful, poignant, horrifying, yet beautiful account of Richard’s story, and with it, that you and your loved ones were tandem in his experience, every step of the way.
    I’d never met your husband, but had heard about his valiant service in his profession. His legacy carries on, in each life he touched.
    Bless you and your family as you continue to carry on, in love and remembrance of such an extraordinary man.

  9. Patricia Bay says:

    Thank you everyone for your kind and thoughtful messages. They each touched my heart.

  10. Barbara Cross says:

    What a powerful story you have told. It is heartbreaking to realize what Richard, You and your family and friends went through. What courage for you to beautifully tell your story and make the beautiful video.
    I have a nurse friend Edna Chambers,in Oregon who just published a book called “Leaving — My Way” which fits into the Dying with Dignity philosophy. The book also is written with clear suggestions on how to approach and prepare for aging and the medical choices we all may need to face someday.
    Thank you for sharing such a personal painful part of your family life.

  11. Kendyl says:

    This is so beautiful and so important. Thank you for finding the strength to write this and share part of his legacy with all of us. Through you, he continues his life work of helping others.

    • Theresa Flynn Gasman says:

      I echo what Kendyl said so well. Thank you, Patty, for sharing Rich’s legacy with us. With much admiration and gratitude to you.

  12. Steve Towers Steve Towers says:

    The pictures of Rich, distraught while in the company of his cherished granddaughter, left me choked up. (I’m being less than forthcoming about what I mean by being choked up.)

    I trust his family will help her remember him from the time before he started to lose control of his emotions.

  13. Margy Wenham says:

    I have wonderful memories of Rich – the two of you were amazing together. You are amazing! Sending you lots of love.

  14. Patricia Bay says:

    All of your comments are so important to me. They touch me deeply. Thank you.

  15. Patty, what a beautiful video, but it breaks my heart. I love you!

  16. AJ says:

    What a painful, important, treasured chapter in all our lives and I so appreciate the beyond imagination, the difficulty you shouldered not only in living this part of your and Rich’s life but also the cathartic pain it must have been to articulate on paper. Deep-down love and compassion on you for sharing such a profound part of your lives.
    I willl forever remember Rich (and you) tap/clogging your way across the Civic Auditorium stage. Oh how I loved to watch you dance. In my memory, Rich will always dance.

  17. Kathi Hibner says:

    Thank you. My husband died of esophageal cancer, metastasized. We found out he had it April 30, 2017 and he was gone on May 19, 2017, 20 days. We were in denial, then shock and grief. My 2 kids were with me and the grand-kids got to say goodbye. He was able to walk around and take care of himself until I found him on the bathroom floor and he couldn’t move. I told him I needed to call an ambulance and he agreed. It is still hard but you story and they others here have help me. He was a retired Marine.

  18. Patricia Bay says:

    AJ, clogging was a huge part of our life for 25 years. I will always see Rich dancing, as well.

  19. Patricia Bay says:

    Kathi, I’m so sorry for the loss of your husband. Profound grief is so difficult. You might be assisted some by my article on Loss and Resiliency on this same website.

  20. Terrie says:

    Your family is so brave. Thank you for sharing your story.

  21. Joe H says:

    Dear Patty,
    Tragically we are now members of the same unenviable club. Your grace, courage and wisdom are a true comfort to me. Thank you from the bottom of my broken heart.

  22. Pamela Knowles says:

    Thank you? The anniversary must be hard, but joyous in that he had the control he wanted. And needed.
    Missing a life partner is excruciating at time

  23. I am 58 years old and still healthy enough to entertain suicide fantasies in case some despicable illness should afflict me. These fantasies involve jumping my motorcycle off a cliff in an accident that would not endanger anyone else. I once knew a woman, named Big Red, in Sonoma County. That was the way she checked out around age 40. She never told anyone a thing, just one day she ran her sport bike right off Highway 1 into the ocean. I hope I never get that sick.

  24. Toni C. Perkins says:

    Patty, you have been so courageous and caring to record this beautiful moving video. Richard was so blessed to have you and your beautiful family to care for him. I spoke at length with Rich one day in December of 2016. I was doing one of my dog walks and Rich and Harley were out front of the house. Rich told me his story that day. I marveled at his ability to be so clear and straight forward in describing the torture of this disease. I was so saddened to see this wonderful man who lived to love life and serve others be destroyed by FTD. He professed his love for all of you, for the support and understanding. We hugged good-by that day. Though he told me he had a plan, I never thought that would be the last time we spoke. I admire your courage in sharing this experience and educating us in FTD and Death with Dignity. I am sorry for your loss. Rich was one man in a million.

  25. Thank you for sharing this most intimate story of Richards illness and struggle. Thank you for sharing the video and writing, for sharing part of your pain. Our granddaughter was one of the many abused children that Richard fought for. He is a forever hero in my heart. I still recently mentioned him in conversation in the telling of our story. He was a man of excellent character, intelligence and compassion, that the children needed. My heart aches for the loss your family has had, as a person like him REALLY has no replacement. The passion he carried, lit up so many avenues of life, and sectors of the Shasta county, a position only he could’ve filled. Thank you again.
    Sincerely,
    Mary

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