The Last Word
About a year or two ago I wrote a letter to my family letting them know what I want when I die. I did this because I work in hospice and my experience has shown me that having plans in place is not only beneficial for you, but for your family as well because if you do not have something in place, they will be put in a position to make decisions on your behalf.
I started with a letter, which was brief, basically saying I wanted to be cremated and listing all of my passwords in the event they needed to access my personal files. I completed an Advance Directive, that I downloaded from Google, and I change it often. Your needs and wishes change as time goes on, which allows for this document to evolve as you do. My main focus of having this document in place, is that I want to make sure everyone knew that I do not want to be hooked up to machines in order to keep me alive; I do not want feeding tubes, life support or any type of machine that would be one button away from my life ending. That is not the way I intend to play out my last few days, weeks or months.
Often when I sit at the bedside with patients and family members, I witness the struggle loved ones have when left to make decisions like what funeral home to use, whether or not they want to be cremated or buried, or did they want a green burial. And the expression of fear they have when they see the cost of it all is difficult to watch. They already have so much to work through seeing someone they love die, but then minutes after those last breaths are taken, they have to put their emotions on hold to decide on a funeral home to call. What if that was already in place, and someone else could make that call allowing the loved ones to take the time they need to say their goodbyes. Wouldn't that make things just a little easier for everyone?
Finding a funeral home is just the start though, there is so much more than that. As a hospice nurse, still at the bedside after someone dies, I often offer to bathe or dress them as that is a ritual I find to be very beautiful, but what if they would not have wanted that. What if they are shy or private and having people bathe them would really upset them. How would we know? We wouldn’t, unless those wants and wishes were written down.
Humans tend to project their own interests onto someone else when they are not in a position to make their wishes known. I have been taking a course to become an End of Life Doula and a recent assignment called for us to interview a few different people to ask them how they saw their end of life play out. These interviews were very helpful to me because what I realized, was that my own “letter” was clearly not as detailed as I wanted it to be and of absolutely no help to those I love, who would be left to make the decisions.
I am a believer that even when someone is unable to verbalize their needs and lay in that bed without a voice, they do hear everything. I am very sensitive to sounds – even whispering triggers my nerves. I cannot stand it when people whisper to other people when I am nearby. I have added that to my letter; no one is to whisper at my bedside. I am right there. I hear you. Talk to me, not at me. And I don’t want the TV on, and I don’t want you playing or texting or watching some video on your cell phone while I am dying. That too is in my letter. Because this gets to be my choice.
My letter has evolved to where I want my ashes scattered, what music I want being played, I have even created a play list with all of my favorites. I have listed who I want there, who I would like to speak for and about me and I have promised myself to look into cremation costs and start making payments so that my family is not burdened with that either.
My “When I die” letter evolves as I do. COVID has certainly heightened my awareness of the fragility and unpredictability of life, which makes me want to be even more sure that my wishes are known. I have wavered back and forth about machines keeping me alive if I was to get COVID, knowing that a machine might possibly bring me back to life allowing me more time with the people I love. At that time, would my decision be to say yes to being hooked up to machines? I have added something about that as well in my letter.
When I die there are some very important things I want to be sure of; I want my kids and my grandkids to know how much I love them, how proud of them I am and to always reach for the stars and believe in themselves that they are truly destined to do great things. This is in my letter. I want to make sure that no one is forced to make decisions for or about me when I no longer have a voice. This too is in my letter.
The beauty of choice is that if we make it known, if we are clear about what we want, events in our lifetime, and at the end of our life, can be choreographed as we design them to be… down to the last Tom Petty song that plays at your celebration of life.
Write the letter, for yourself and for those you love. Think about all the things that would matter to you and write them down. Do you want to be at home, or in a facility, do you want lots of pillows or no pillows? Imagine yourself not having a voice and someone caring for you that can say, “move the fan away from her face, she doesn’t like that”. No one else knows that you don’t like to sleep in socks, and that the pressure of the blankets tucked tightly at the end of the bed makes you feel smothered, and they don’t know that while roses are pretty the smell bothers you and please, please don’t let my lips or mouth dry out, I absolutely hate that.
You can decide how people treat you when you don’t have a voice, but they need your help. Write the letter, tell the people you love what you would like when you are dying and afterwards. And while you are in the writing mood, write a personal letter to the special people in your life, leaving them a take-away of your feelings, something they can hold onto after you are gone. This gets to be your chance to have the last word, and have it be heard.