Anchors, Pillows and the 5:20 Train

Lately talk among my friends has turned to plans for the future. Plans that involve contracts, and pacts, and secret handshakes with friends sealing agreements about how they will lovingly help the other one pass into the Great Beyond when, not if, they get Alzheimer’s Disease or other elderly dementia. It’s not surprising. Alzheimer’s is the second most feared disease in America, second only to cancer. And after the age of 65, it becomes number one. The number of people diagnosed is growing exponentially, with a 70% increase projected in the next 20 years. One of my friends, whose love for the ocean began in childhood in New Hampshire, has a quiet agreement with her husband, that whoever is still thinking clearly, will tie an anchor around the other one’s ankle and will walk them into the sea. Another friend has a Peaceful Pillow Pledge. Whoever is still capable will press a pillow over the one who has forgotten how to swallow and cannot speak. And then there’s the friend with the 5:20-to-New York contract. A simple nudge on a platform would end the hellish existence that is not a life. My own scenario involves below freezing temperatures, deep snowy woods, lots of hydrocodone washed down with a nice Merlot, and if I can get it, a tank of Nitrous Oxide. Redundancy seems like a good idea, and laughing on the way out seems a wonderful way to go. Unfortunately, I haven’t been able to get my husband to agree on this proposal yet.

 But as we laugh about it and plan, the reality is that there are no options for any of us in this position. If we chose to honor our pacts, we would not be as lucky as 86 year-old George Sanders. Mr. Sanders recently received two years unsupervised probation for the mercy killing of his 81-yr old wife who suffered from MS, and who he had cared for lovingly for over 30 years. No, we would certainly be tried for murder, even if our winks and nods were finalized in written form, witnessed, and sealed by a notary public. And the current move in many states in addition to Oregon, Washington, and Montana, to allow physician-assisted suicide, does not touch this issue at all. Why? Because the person requesting the act must be mentally-competent AND must be diagnosed with less than 6 months to live, an insurmountable contradiction in Alzheimer’s. In Vermont, the proposed law would require a person to state their desire to die three times, one of which must be in writing. Writing? What’s writing to a person who does not recognize what a pen is used for?

 As Lisa Genova so painfully described it in “Still Alice”, our best-laid plans will be for naught. Does it matter that we won’t be able to exit this world the way we want? It seems as if it does matter to a growing number of people. Let’s not forget that ours is the generation which is caring for our own ailing parents, as well as our struggling children. The poignancy is not lost on us. We do not want to be a burden, financially, physically, and emotionally, on our offspring when it comes our time. A detailed Advanced Care Directive and even more important, the appointment of a Health Care Proxy is necessary to spell out desired and undesired medical interventions. I highly recommend the wonderful Five Wishes document (http://www.agingwithdignity.org/five-wishes.php) which is a Living Will with a heart. But the fact is that most elderly dementia patients don’t die a quick, peaceful death, even if they have these directives. The large majority will die from choking or aspiration pneumonia caused by food being put in their mouth by caregivers. And there is no form that allows us to reject that. And there should be.