So…this one might seem a little morbid, so I’m going to TRY to make it a little shorter than the essays I usually write (right @msshaybunny?)
When I was in undergrad (and even when I was in high school) I used to tell people what I wanted them to wear to my funeral. I used to ask people to wear stuff like hula skirts with spurs, ass-less chaps and rainbow afro-wigs. In part it was because I- like most young people- felt like death was something that was way beyond me. It happened to other people, OLD people. In larger part, it was my way of making something that was scary LESS so. I had been to a number of funerals at that point. I’d seen people my age go and people who were older than me go. I knew I didn’t want my funeral to be a solemn occasion, and I wanted to do my best to make sure that happened. I figured if people came in those outfits and other people ASKED about why they came in those outfits I could give everyone who REALLY knew me one more smile.
Fastforward to today. I still hope people remember what I wanted them to wear, because I still want that, but I have also started thinking about getting my affairs in order. Before you think I’m thinking about walking out in the middle of traffic, let me remind you I’m in health care. Everyday I get to see how ugly people are to each other -either accidentally or purposefully- and how ugly people can be to themselves. I have seen people’s lives change forever or change for right now. I have seen medical treatment withdrawn because of the hopelessness of any kind of recovery and I’ve seen care continued at the request of family who won’t accept the death of a family member.
All of that makes me think of what I want for myself, under what conditions I’d want life-sustaining measures and under what conditions I’d rather have my loved ones pull the plug. While I know that some people are medical miracles, I don’t know that’d want my family to place their bets on me being one.
Honestly, I’d want my family to think about the burden to them (in terms of my care) as much as I’d want them to think about how I’d want to live. Like, if something happened to me now and I got a brain injury and I was never going to be the me they’d known and loved again I wonder if my family could bear it. I think about all they have going on now and I think about how all of our lives would change. Would they give up my care and have the state take over my guardianship? Would my parents take me home, only to have my guardianship become an issue later in life?
Outside of thinking about things that could change life as I know it right now, I think about things that might change the lives of my loved ones as I get older. As far as I know, I don’t have any family members with dementia, but that doesn’t mean I couldn’t get it. I can’t imagine my mental status changing to the point where I can’t communicate my needs, where I forget my family and friends, and where it almost seems as if I am locked in my own mind. I think about how hard it would be on my spouse and my children to watch me change that way and to provide my care. I think about ways I could make it easier for them, especially knowing what I do know about that particular disease process.
I’ve started telling people little things about that too. I tell them to make sure I’m clean, to make sure my hair is combed, to make sure I get plenty of napkins at meal times (just in case I have to eat with my hands, because I HATE having stuff on my hands).
I still have a list of requests, it’s just changing as I get older.