Thinking about life and death 

I recently read a book about a year in the life of a medieval woman.

It was very interesting to contemplate what life was like for people back then. The woman’s family lived on a feudal lord’s property. Death of babies and children was so commonplace, it was a wonder why some siblings survived and others didn’t. The town shepherd got a splinter from a split rake handle and it got infected and he was dead within a day. Neighbors of the main character’s family had a mother who didn’t speak clearly  “one could never talk to her for no one could understand what she said, only a gobbledy noise came from her” and she just sat idle in their cottage caring for nothing. Her kids were ragamuffins who begged for food from neighbors. I thought, what if she had ALS? Their neighbors looked upon her family with disdain.

This book made me think about a few different things. One, that I am lucky with technology helping me communicate, suction stuff I can’t swallow , and helping me do therapies to improve my life quality. Also with antibiotics, anti-inflammatories, ALS slowing, and other drugs greatly increasing my quality of life and potentially prolonging my life. Let alone a feeding tube and formula giving me complete nutrition. These are things that weren’t available for most of history. So now we are able to live longer even when sick.

With so many babies and children dying in medieval times, it made me wonder, what is life? My own daughter Anna only lived a moment after birth. What did her life mean?

My older brother died in an accident when he was 19. Why did he get less than two decades when I have had more than five and a half?

These questions can’t be answered. Some religious faiths may give people guidance on these questions, but for people like me with nebulous spirituality, there will be no clarity.

And now we can make decisions about our own deaths. When Stan and I did estate planning about 12 years ago, we both decided our end of life plan would be “no tubes”, imagining us old like our grandparents and intubation prolonging a fairly low quality life. Home health gave me a Physicians Order for Life-Sustaining Treatment form.

My POLST form folded to protect personal information

Obviously I need to update my Living Will because I can still have a high quality life with a feeding tube. I assumed I would be like 95% of ALS patients, and option to not have a tracheotomy to prolong my life. My husband and I had a candid discussion with my nurse practitioner about the implications of signing the form. If I say no endotracheal intubation,  she suggested I might want to look into hospice because I am already having breathing problems and diaphragm spasms. She has a long history of hospital work and was able to explain how patients are weaned off endotracheal intubation – it is turned off to see if the patient can breathe on their own. She worried that I would never be able to wean off it. And it is extremely uncomfortable for conscious patients.

I know that ALS patients are usually able to make the decision to go to a full tracheotomy without having to go through the endotracheal intubation process. I have been worried about the amount of care that will be required to keep me alive in the later stages of my disease. I don’t want to burn through our savings paying for 24 hours care for several years, nor do I want to be a burden to my caregivets.

Some states, including California and Oregon  (I have a sister in each state) have right to die laws. I heard a beautiful story about a woman with ALS in Ojai, California who hosted a 4 day party, culminating with her physician assisted death at sunset on the 4th night.

There are so many profound decisions to be made as humans today. Perhaps it would be easier to live with death much more common as it was in medieval times. You wouldn’t be faced with  moral decisions on the end of life as we are. I have not yet decided and can now see what a difficult decision it will be.

It is sobering to be thinking about these things only 2 months since diagnosis.