I’ve just read a fascinating book for those of us who may fear Alzheimer’s disease and/or would like to be able to end our own lives if needs be. Three different people referred me to “In Love,” by Amy Bloom – thank you, people!
This is the very intimate story of a writer seeing her good-guy husband slip ever so slowly into Alzheimer’s disease. He retires early, withdraws from close friendships and talks mostly about the past. The detail of the disease’s progression filled me with frustration, angst and acceptance, as it did her. We get to see the annoyance and exasperation Amy felt at the beginning with common things we all go through: losing things, mixing up appointments, etc. The excuses, the doubts, the tears.
Then it moved to Brian showing up at incorrect locations, on incorrect days for certain events. Confusion and inability to sort things out became commonplace. How does a partner of many years even try to cope with this? It was three years until reality set in and they saw a neurologist for the diagnosis.
We all may have to confront the truth of some illness at some point in our later years. This man was determined to “die on his feet, not live on his knees.” Amy researches many options so he can end his life with dignity, none of which work for them. Along the way we get to witness data and details I didn’t know about this cruel disease.
There is the Mini-Mental State Examination, which is now the benchmark for many of us at regular doctor visits, starting in the late 70s. Fascinating to me, as I’ve not yet experienced the test, my brother who is 79 has. It has many items: objects to memorize, numbers to memorize, symbols to copy on paper, directions to follow, a clock face to draw with the time at 10 past 11, sequences to follow, attention, language and orientation tests. Maybe some of you are familiar with this. I read through it and scored OK, but Brian does not – he gets a 23, which is mild dementia.
They live in Connecticut, which is not a state that allows Medical Aid in Dying. Ten states plus Washington, D.C., do have this law on the books, but require that one has a diagnosis of a terminal illness and death within six months. Plus, the patient must be coherent and in their “right mind,” which can eliminate those with dementia and/or Alzheimer’s.
Last year, Colorado had 222 people obtain prescriptions for the lethal doses of medication, and 777 since the law’s inception five years ago. These patients were all within their legal rights as residents of Colorado, with two doctors’ approval and fewer than six months to live.
In addition, a couple of states that now enjoy the Medical Aid in Dying Law are moving forward with even better rules. Oregon has eliminated its requirement of state residency in order to be eligible, but one still must have a six-month diagnosis. California is currently going through a lawsuit that is looking at discrimination for people with disabilities. The statute requires that the patient must self-administer their life-ending medication. No physician or other person may assist. Physically disabled people who cannot grasp, swallow or otherwise function to enable themselves to complete this task are out of luck.
The option of MAID was not viable for Brian. However, he and his wife must not have researched well enough. Final Exit Network is the organization that gives any competent person unbearably suffering an intractable medical condition the option to die legally and peacefully. FEN accepts applications from patients with an array of medical and/or personal circumstances for guide services – one does not have to have a terminal illness. With Alzheimer’s, one must make this decision before the disease completely takes over. But, I digress ...
After many searches and different paths for how to end her husband’s life, Amy finds Dignitas, the organization based in Switzerland that empowers a person to end their own life with dignity and peace. The application process is daunting, with needed records from all kinds of doctors including a psychiatrist, a sequence of when things must be completed, a $10,000 fee, other distressing details and travel to Switzerland with all that entails.
The reality of someone going through this terrible disease, and how they come to terms with it is a story that may affect many of us. Amy and Brian’s outcome is so personal, and many will not agree with their decisions. However, it is a powerful look at a very personal journey.
Martha McClellan has lived in Durango since 1993 and has been an educator, consultant and writer. Reach her at mmm@bresnan.net.
