The day I was diagnosed with Alzheimer’s, I decided I would not let the disease slowly kill me. Instead, I would choose the day of my death.
I will not let Alzheimer’s completely take my mind. Or warehouse me in a nursing home. Or set me in conflict with my wife or other loved ones.
I’m going to Switzerland instead. Several organizations there help people end their lives, legally, peacefully.
My Alzheimer’s journey will end this month. With my wife and my two sons, I will travel to a suburb of Zurich to die.
Dying is not something I “want” to do. I wish I could die at home at the time of my choosing. My state will not let me.
I’m 66 years old, retired, and having a wonderful time. I have an amazing wife, family, and friends. I enjoy travel and being outdoors.
Kay Meyer, my wife of 28 years, is primary reason my life is so good. She does almost everything. She handles the money, the doctor visits, makes sure I take my medicine, manages my daily schedule, and so much more.
Signs of my decline
I didn’t used to be like this. I was born and raised on a farm in northwest Iowa and have lived in the state most of my life. My last job was at the Iowa Statehouse. For 24 years, I was the communications director for Democratic senators.
To help them communicate with their constituents, I wrote news releases, recorded audio and video clips, built mailing lists, learned new technologies, and managed an extensive library of digital documents. I’m especially proud of and thankful for the dozens of interns I recruited, trained and managed.
I was miserable during my last couple of years in the Legislature. The systems I had built were falling apart. I was missing meetings and making lots of mistakes. I responded by doubling down and trying harder. It didn’t work.
The people I worked with knew I was struggling. So did I. I saw my doctor. I saw counselors. I took antidepressants. I made lots of to-do lists. Things just kept getting worse.
Finally, I gave up and retired.
I found the reason for my struggles once I was referred to Dr. Yogi Shah, medical director of the Broadlawns Memory Center in Des Moines. Dr. Shah ordered the test that discovered that I had early-onset Alzheimer’s, a progressive, fatal disease that destroys your brain and body.
There is no cure. My treatment options are limited. I’m on two Alzheimer’s-specific medications. I’ve declined the new blood platelet treatments, which help many people. But due to my own genetic predisposition, they increase risks for me.
My diagnosis was devastating news. I went to my home office, shut the door, sat down, and shed a few tears.
Then something unexpected happened. Despite learning I had a fatal, incurable disease, I felt a wave of relief.
Finally, I knew why life had gotten so difficult, why I couldn’t sleep, the cause of all this anxiety. And it was not my fault.
Movement helps my mind
I’m lucky that I’ve always enjoyed being physically active, because that’s one way to temporarily clear my Alzheimer’s-related brain fog. Twice a day, I run, bike, or lift weights intensely to get my heart rate up.
I can’t keep this up forever. I fear the flu, injury, and anything else that could keep me from exercising. In June, I fell off my mountain bike and smacked my leg. I was back on the bike the next day, but would I get up the next time?
Working on my final exit now takes up much of my “quality” time. None of this is cheap or easy. When I travel to Switzerland, Dignitas, an organization that helps terminally ill people die, will require that I be examined by two doctors to ensure that I still have the capacity to make this decision. That’s why I need to go sooner than I would prefer.
This is my choice
Despite all the hassles, I take great comfort in knowing how my life will end. Other people with Alzheimer’s make different choices. That’s their choice, and I should have mine.
Why am I forced to travel to a foreign country, far away from my family and friends, to exercise this right? I would rather stick around longer and take physician-prescribed medication to end my life in Iowa. Surely we can do better.
More states, including Illinois, are giving their residents more end-of-life autonomy.
Even those laws, however, require a doctor to declare that the person seeking to end their life has six months or less to live. That requirement fails Alzheimer’s patients. My body could live on for years after my mind is gone.
In Canada, competent individuals with Alzheimer’s can get assistance in dying. With adequate safeguards, such laws prevent needless suffering for patients and their families.
More: Death with dignity is about freedom for Iowans
We Iowans are on our own. The Iowa Legislature has repeatedly rejected, with little debate, death with dignity legislation. Republicans talk a good game about personal freedom, but have done nothing to advance this important topic. No bills, no committee meetings, nothing.
In early August, more than 30 members of my large family ― including my six siblings ― gathered at our annual reunion at the Root River Valley in Minnesota. I told them that, even if I seem healthy, good times like these will soon vanish from my memory. They were all understanding and supportive.
Choosing to end my life in this way is a rational, reasonable response to a terrible disease ― one that all Iowans should have the right to make. If you agree, let your legislator know.
Rusty Martin of Des Moines is a retired communications professional and educator.
This article originally appeared on Des Moines Register: I’m deciding to die before Alzheimer’s takes my mind | Opinion
Reporting by Rusty Martin, Guest columnist / Des Moines Register
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By Rusty Martin, Guest columnist | USA TODAY Network
