Dying Well

What does it mean to die well? How something lives is how it will die, I've often heard it said. I can see that this is true in a way. So what does it mean to die well? 

Living Well and Dying Faithfully by John Swinton and Richard Payne says "Pain, anguish, alienation, and brokenness remain profoundly important, and we continue to do all we can to alleviate them. However, we strive to alleviate them not only because people do not want to experience such things, but because suffering can serve a deeper negativity as it functions to separate us from the love of God, self, and others" (p. xix, Introduction).

I certainly struggle to worship God as creator, healer, sustainer and redeemer as I watch my mother-in-law and grandmother-in-law slowly deteriorate with Alzheimer's disease. We celebrated Grandma Lolly's 98th birthday, which consisted of her reading two birthday cards over and over again. Her mind is completely gone. Her memories are all but gone. She has to be bathed, toileted, fed, medicated and cared for in every possible way. When offered a piece of her birthday cake, she said, "A girl like me doesn't eat things like that." And we laughed it off. We tried again and she said, "I can't have that. I'm not good." Her filters are stripped away. We see her deep beliefs about herself as clearly as we can read a child. It's heart-breaking to hear such sad, negative beliefs as "I'm not good." But what can you do?

Most of us want to die quickly, painlessly, in our sleep and without being a burden to anyone. As I interact with more hospice patients, I'm realizing that is a far cry from reality most of the time. Unlike the movies and TV portrayals, death is often a slow process that can take months or even years. Families often bear the burden of a dying parent or grandparent for years, with careers put on hold, and relationships altered. Grandma Lolly has had Alzheimer's for 15 years or so; she has been dying for as long if you ask me. And now her daughter, Amy, is on the same path. 

Amy said to me on multiple occasions, "If I ever get to be like my mom, just kill me. Please, kill me. I don't want to be like that." I heard her at the time but did not really think it would get to the place where I would actually feel the weight of that request. I feel it now. She has been in a skilled nursing facility for the past month, fighting an infection, and recovering from a surgery. We have spent many nights after work, and weekend hours, with Amy, who barely seems to know us. I wonder if she remembers who I am. She doesn't have the light of recognition in her eyes that she used to have when I walked into her room. 

What does it mean to die well when you don't even know where you are, who your children are, who you are?

I met a new patient this week. She slept the entire time I sat with her so I don't really know much about her personality. She is semi-responsive. She's full code which means she should be revived and all attempts should be made to save her life. The opposite of full code is DNR, Do Not Resuscitate. I wonder why the patient wants to be revived at all possible costs. If I knew my body was shutting down, and if the doctors had written the order for hospice, I would work on accepting the end of my life. Heroic efforts to save a dying body seem to lead only to comas, life-support machines and the strange gray no-man's land between life and death that so many families struggle with. 

But this patient is full code, which for me as the hospice volunteer means that I must call 9-1-1 if anything dramatic changes on my shift. It's important to know this detail as I begin each shift. It is literally a matter of life-and-death. The difference for me is that I would choose death, as far as I can tell from this vantage point.