7. Autonomy

Several years ago, in the summer of 2018, pre-Alzheimer’s but post-TIA (and post the beginnings of brain fog), Wendy and I went to Yellowstone National Park. We had bought an RV, and this was our inaugural trip. Not a bad way to start! We had booked a few nights inside the park, and elected to rent a car for our game drives rather than pack up the camper each day. The rental place in West Yellowstone shall forever be my heroes because, without me asking, they upgraded us to a Mustang convertible. Now, I’m not a car guy, but after fifteen minutes of driving this beast, I totally got why people were. None of this is relevant - I just wanted to boast! The relevant part of the story is this: We were at the Upper Yellowstone Falls overlook. 

It had been a snowy winter, and a rainy spring. The waters were flowing like mad! It was stunning. We were wandering around the viewing area, while the river pounded around us and Wendy approached me and told me I looked really pensive, and wondered (as she often does) what I was thinking about. I responded that I was wondering that, if I jumped into the pool at the top of the falls, would I immediately be swept up in the current, and if so, would the drop be enough to guarantee to kill me. She was aghast, as this was really my initial foray into what I would do with myself if I started to lose my mind. Now trust me - I have no intention of launching myself off of the top of Yellowstone Falls. I don’t want to traumatize anyone. I’m not going to kill myself  - this is not a cry for help. Don’t call social services on me! 

I will, however, want to make the choice about when and how to die when this disease starts to take over. Today’s post is going to talk a bit about that, and what options are out there for those of us suffering from brain decline. I expect I will offend a few folks. Get over yourselves. This isn’t about you - it’s about me, and the thousands of other folks in America who have no safe, legal options for ourselves. Someone else’s autonomy is never about you. Whether it’s religious, gender, sexual, medical or anything else, it’s only about the person who is forced (or just desires) to make a sometimes terrible decision. (Sometimes, as relates to personal religious, sexual and gender issues, it’s not terrible at all, but just will make a person happy and fulfilled. It’s still not about you!) Your choices for yourself are fine with me. I will never stand in your way. So get out of mine! Practice your religion any way you want as long as it’s not imposing on the free will and autonomy of anyone else. However, certain religious groups, with a lot of power, have co-opted our medical and legal systems due to their irrational beliefs about what happens to you when you decide to take your own life (and lots of other stuff). This leads people like me with no other option but to stand in one of the most beautiful places on the planet and spin off into thoughts about swimming over the falls. Seriously. Don’t like the thought of two people of the same gender making love? Don’t do it! (or watch the videos!) Don’t think those same two people should get married? Don’t marry someone of the same gender. Think you’ll go to hell if you take your own life? Don’t take your own life. Don’t think kids should go to a library to see someone in drag reading a story? Don’t take your kids there. (I don’t think kids should be groomed into your religious institutions, but I’d never think to try to stop you from doing it for your own family.) Think someone else's religion is an affront to yours? Shut the hell up about it - or engage in civil discourse to learn their process. Think a fourteen year old girl or thirty year old woman should be forced to carry a child of rape, incest or even just inexperienced exploration to term? Examine your priorities, and examine yourself, your god and your book. Thoroughly. Sincerely and genuinely believe that someone else is going to spend the rest of their life in eternal torment for their choices in religion, sexuality, method of death, or anything else? You have a couple of options here: Deeply explore yourself for your own sins and decide if you’re worthy, truly worthy of the lofty status you aspire to - and then shut the hell up about it, or... shut the hell up about it and respect the choices and beliefs of others, as you demand they respect yours. See how easy accepting autonomy is? 

The reason for all this vitriol? Well, I’ve been thinking about this for a long time, obviously. And I’ve done a bunch of web research since getting officially diagnosed, and so I’m pretty in tune with my options. It’s bleak. There are a few states in the USA that have bucked the church and instituted the ability to choose your own demise in the case of terminal illness, but it does not work for dementia patients. In all states, you must be within six months of death and able to administer the shot to yourself. Clearly, if one is lost to the haze that is dementia, that’s not possible. Also, you can live for years in that state, so again, no go. In our great country, the land of the (alleged) free, we have no freedom to choose our own method and time of passing. Now, one could travel to Switzerland where you can make free, informed choices about your own life - but that’s not dying surrounded by loved ones in your own home, the way I think most of us would choose to go. Possible, but not optimal.

Last night I went to a talk entitled Winter’s End: Dementia and Dying Well in Northampton, MA - near where I live. The panel consisted of two doctors - Lewis Cohen, who wrote the book of the same name, and Jeffrey Zesiger, who runs the Fisher Home hospice in Amherst MA. Also presenting was a lady named Fran (don’t know her last name, sorry) who had, in the past year, helped her partner, Joan,  pass on and was there to share that heart wrenching story. (As an aside, Joan was the sister of an old high school friend from NYC. Small world!) The focus of the talk was about options for dementia patients. It, for the most part, stayed away from horror stories - which is good as I’m still not ready to listen to those. It talked about Joan’s bravery in accepting her illness, and how she - in some cases - had to guide her loved ones towards acceptance. It also spoke of the titular Winter of the book, and how he had to overcome the intense condemnation of his more religious extended family when making his terrible choice. Joan’s family was never condemning - and nor do I expect my family to be. So that’s good. 

Dr. Zesiger talked about his organization, and how they offered palliative care for those with cognitive impairment and I will be examining their options fully (as I will other organizations like theirs). Dr. Cohen read passages from his book which is culled from conversations with Dan Winter, as he contemplated and planned for his demise. Drs. Cohen & Zesiger are clearly men with great empathy and it was great to hear them speak. They both spoke of the bravery of the very few who are able to make public their diagnosis, and the urgent need for more folks to educate others on this dreadful illness (which is what I’m trying to do with this blog). Fran spoke of Joan’s bravery, her own loss, and of the choices that Joan made, and the process she went through - and I’m going to expand a little on that now.

Joan eventually made the ONLY SAFE AND LEGAL choice for death by choice (when one has dementia) in America. It’s called VSED. That stands for Voluntarily Stopping Eating and Drinking. Let me just say that again in case you missed it. The only way the dementia patients can choose to end their own suffering (loss of self, memory, place, control and bodily functions - you tell me that’s not suffering for the patient and their loved ones!) is to make the choice to no longer eat and drink and to slowly die. It has a freaking NAME for crying out loud! How awful is that? So, once you, while lucid, make that choice - it is presumed that you have less than six months to live and you qualify for hospice - and then folks like Dr. Zesiger can step in and make that process as pain free as possible. That includes swabbing the mouth so it doesn’t dry out, pain killers, rotating in bed, etc. This can take seven days to two weeks. Or thereabouts. But I can’t take one of the myriad pills or shots that will work in minutes? Fran said that after doing all the research they could, this was the least terrible option. She said Joan was at peace with her choice, and went out surrounded by a team of the loved ones who had helped her usher in this change. And again, this choice must be made while one is still all there! I’ll quote Fran here: “You must be prepared to give up some good days so you don’t have a lot of bad ones”. 

Now, don’t get me wrong -  I know that any process of ending life has to happen while things are still good, whether it be a pill, gun, waterfall or VSED. But how ingracious are those options? The only one that has a modicum of empathy is not an option at all. Because why? But they’ll let me starve myself to death. That’s OK. What kind of autonomy is that which is not autonomous at all, but doled out in tiny bits of unpleasant options as dictated by an industry that is governed by money and religious excess?

Now, on another note, Wendy took this picture of me while I was hypnotized by my lights this morning, while bundled up in my new LL Bean fleece hooded wrap!

I was listening, if you are interested (and I know you are), to “Po Black Maddie/Skinny Woman” By the North Mississippi Allstars. Live on the “Do It Like We Used To Do” album.

Thanks for reading! (And thanks for bearing with yesterday’s video experiment - your comments were great and helpful. I’ll get around to direct responses shortly)

Sean