Diane Rehm, whose husband John Rehm lived with Parkinson’s, shares her perspective on why people living with dementia deserves a say in their end of life.
When my late husband, John Rehm, was diagnosed with Parkinson’s Disease in 2005, my grandson, Ben, was just five years old. He saw his grandfather’s decline over the years, and watched as this once vigorous, athletic man evolved steadily into someone who needed care for even the simplest activities.
As the disease progressed, John experienced some of the elements of Lewy body dementia, a cluster of memory losses which often affects those suffering from Parkinson’s. In John’s case, it muddied his ability to think clearly, to recognize close friends, and to draw on his extraordinary intelligence. There is an impact on the brain similar to that which occurs in those who suffer from Alzheimer’s.
John and I talked at length about the kind of death he wanted, one where, when his time came, he could painlessly pass from this life into what he believed was the next, with the aid of medications prescribed by his physician. However, when this physician determined that John had six months or less to live, the law prevented John from receiving any medication to aid his passing. The only choice left for this man—this brilliant attorney and scholar, who could no longer feed himself, stand on his own, or toilet himself—was to stop taking food, medication, and water. For ten long and agonizing days, I stood by and watched him fall into a deep and restless sleep and finally, on the tenth day, achieve the relief he had so long sought. He died on June 23rd, 2014.
Since that time, California, Hawaii, and the District of Columbia have joined with Oregon, Colorado, Washington, Vermont and Montana to pass medical aid in dying laws. With some variations, these laws allow those with terminal illness who are deemed to be within six months of death to end their lives by obtaining medications from participating physicians. Though Oregon’s Death With Dignity Act has been in place for twenty years, there are still challenges being brought by those who oppose a person’s right to make that decision.
The District of Columbia’s Death With Dignity initiative was passed more than a year ago, yet thus far, not one patient has used it. Initially, this was because no physician would agree to participate. Now, with support from two doctors who’ve expressed willingness, those patients who have met the criteria can be assisted. However, D.C.’s law is being challenged by members of Congress who want to deny residents the right to make a choice for themselves.
I strongly believe that all of us deserve to have a say in how we die. If your religious beliefs tell you that God should be the only decider, I support you 100 percent. If you wish to have every option that medical science can provide to prolong your life, I support you 100 percent. However, if, like me, you want control over how and when your life ends, I support you 100 percent.
My belief in my right to self-determination is so strong that I am now working on a documentary titled “When My Time Comes,” directed by the Emmy-nominated documentary filmmaker Joe Fab. My hope is that this film will encourage people to talk more about the kind of death they want, and how medical aid in dying can be a true comfort to those who fear losing control, dignity, and autonomy at the end of life.
As part of that documentary, I asked my now eighteen-year-old grandson, Ben, to video on his cellphone a statement I wish to serve as a direction to my newlywed husband and my children. Our cameraman filmed Ben as he recorded me. In my statement, I say very clearly and without reservation that, should I become physically or mentally unable to care for myself, I would wish to use the Death With Dignity option. Further, should I feel I’ve become a burden to my family and to society, I would wish to end my life. If I am, at some point, diagnosed with Alzheimer’s, I want my decline to be monitored by my family, so that I can make a decision as to when to end my life before I am no longer considered capable of doing so.
I realize that this statement goes further than any law currently in effect allows. But I have heard so many sad stories of those with some form of dementia lingering for years, experiencing no real joy or understanding of what is happening to them, and I do not want my life to end that way.
For the past three years, Ben has had the good fortune to work in the laboratory of Dr. Reisa Sperling, the renowned neuroscientist at Brigham and Women’s Hospital in Boston. Her work is on the cutting edge of Alzheimer’s research, and Ben’s interest in Alzheimer’s has grown steadily because of his work with her. So now, as he prepares to begin college in the fall, I have issued a challenge to Ben: to find a cure for Alzheimer’s Disease. That may seem ridiculous, however, I believe in him, believe that his college and graduate education will prepare him to work productively with others who are focusing on the same daunting goal.
In the meantime, I will continue to work as hard as I can to encourage family members, husbands, wives, neighbors, and friends, to look squarely at death as a reality each of us faces. For too long, death has been a taboo subject in our society, though not one of us will evade it. Let’s talk about it with each other, engage our parents and children in the discussion, let them all know what we want, and so take hold of the fear and hope to work through it. In that way, we’ll be perhaps be more ready to face the inevitable, whenever it comes.