(Joel Adamson is an American Christian author, licensed professional engineer, and former international business consultant. He holds engineering degrees from UC Irvine and the California Institute of Technology. He also completed substantial graduate coursework in theology at Fuller Theological Seminary and social work at the University of Washington.
Joel worked for ExxonMobil as an engineer and later founded Kitsap Homes of Compassion, a nonprofit providing permanent supportive housing for people experiencing homelessness. He also founded and led Kazakhstan Consulting Solutions. He is author of A New Option for Dying with Dementia: Christian Conscience, Terminal Illness, and the Freedom to Choose.)
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My journey to Final Exit Network (FEN) began with a diagnosis I never expected to receive: frontotemporal dementia, or FTD.
I am a husband, father, grandfather, Christian, and professional engineer. My wife, Anne, and I have spent much of our adult lives together, including many years living and working overseas. We have raised a family, built a life together, experienced suffering, and seen God answer prayers in ways I never expected.
Serious illness is not new to me. For thirty-three years, I lived with ankylosing spondylitis, a chronic inflammatory disease that at times caused extreme pain and disability. For more than ten years, I was unable to work and received Social Security Disability Insurance. For about two years, I used a wheelchair.
There were times when the pain became so severe and seemed so unending that I experienced suicidal thoughts. When my doctors prescribed stronger pain medication and brought the pain under better control, those thoughts subsided. That experience taught me that even overwhelming suffering can sometimes change when the underlying problem is treated more effectively. My illness was also not terminal, so there was always the possibility that my condition could improve—and eventually it did. In 2021, after decades of illness, my symptoms unexpectedly went into complete remission. That remission gave me years of life without the pain that had once dominated my days.
It taught me never to assume that suffering today means there can be no better tomorrow.
FTD, however, confronted me with a very different problem. Dementia does not simply threaten the body. It progressively threatens memory, judgment, language, empathy, personality, independence, and ultimately the ability to understand what is happening. It can also impose enormous psychological, physical, and financial burdens on a spouse and family.
Anne has already cared for me through decades of illness. When I began seriously studying what advanced FTD can do not only to the patient but also to the caregiving spouse, I realized that I needed to think about the future while I was still able to do so clearly.
That realization eventually led me to Final Exit Network.
For me, having an end-of-life option does not mean that I want to die. I want to live. I continue to hope for more good years and better treatments, and I continue to pray that God may heal me. Having a contingency plan simply means that I do not want dementia to make every decision for me.
People do not buy life insurance because they hope to die. They buy it to protect the people they love if the worst happens. I think of my contingency plan in much the same way: having an option available does not mean I have decided to use it.
There is tremendous peace in knowing that I am not alone as I think through these questions.
This broader journey also led me to write a book, A New Option for Dying with Dementia: Christian Conscience, Terminal Illness, and the Freedom to Choose. I wrote the book particularly for Christians because suicide remains one of the strongest taboos in Christian culture. The book asks a narrow but difficult question: Could a Christian facing an incurable and ultimately fatal dementia diagnosis, in rare circumstances and after prayer, counsel, and careful reflection, morally choose to hasten death rather than live through the most devastating stages of the disease?
I do not argue that everyone should reach the same conclusion. One of the book’s central themes is humility. People of sincere faith and conscience may reach different conclusions about death and suffering.
But they should at least be allowed to ask the questions.
That willingness to ask difficult questions is one of the things I appreciate most about Final Exit Network. FEN is willing to have conversations that much of our society still avoids. Terminally ill people deserve honest information. They deserve compassion. They deserve to understand their choices. And they deserve to be treated as human beings rather than as problems to be managed.
For people facing dementia, these conversations are especially urgent because the disease itself gradually takes away the abilities needed to understand the situation, remember earlier wishes, make plans, and act on them.
I am deeply grateful that Final Exit Network exists and that I found it while I still have the opportunity to think, prepare, talk openly with my family, pray, and make decisions consistent with my values.
Whatever lies ahead, FEN has given me something deeply valuable: people willing to walk beside me as I face one of life’s most difficult questions.
For that, I am profoundly thankful.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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