I am writing a letter to my family before I die. I do not mind sharing it with everyone because I want to encourage everyone to do the same. This pandemic has shaken most of us into an alternate reality. Life as we knew it before the pandemic may never exist again for some of us. I have been asked several questions by friends and family members and I hope this will provide clear answers.
This world has always been a dangerous place and it just keeps getting crazier. The pandemic, civil unrest…. we have learned but so many of us have lost…. that should be enough. But in addition to that we all have our regular issues. Work or unemployment; school; doctor visits, new diagnoses, things to do, things to do!
We never know how our lives will end exactly. Sadly, if you become ill with Covid-19 the end of your life may be suddenly predictable. Someone even made a YouTube video about what a COVID-19 victim sees in a facility as they are intubated…as they are possibly dying. There is no way to tell someone that enters intensive care with such a disease that “it`s all going to be ok” or “you`ll be fine”.
One thing for sure is that people in isolation will die alone.
There may be nurses, maybe doctors, but they may be strangers. Even the folks with the biggest families are not immune to the cold and loneliness in an isolation ward. So….
Write that letter. Make that call. Tell people what you think and how you feel and do it NOW. Anything can happen to any of us and we have no idea how or what.
So, don`t wait.
Sadly, people do not like to talk about death although it needs to be discussed. Yes, it is frightening. Some are cavalier and compare death to “riding off into the sunset” like in an old western movie. For the most part that fear of the unknown is unsettling in more aspects than just death. We often forget that dying is inevitable and we cannot escape or avoid it. On the flip side we also become crippled by our loss or potential loss and forget the experience that the person dying is having! As my mother lay dying of cancer, she said, “Here I am, on my deathbed”. I shushed her and said, “Oh don`t say that…” as if there was hope. There was no hope, and she knew it. The doctors had already ordered hospice. She didn`t say anything else about it. It was years before I realized that she stopped talking to protect me. She didn`t want to upset me, so she had no one to talk to! What a dreadful thought! I left her there in that place and did not allow her to grieve the loss of her own life. I was there with her but in so many ways she was alone. It should have been a time I shared with her and offered her comfort. I just didn`t know how to talk about her death; not even with her. Truthfully, in addition to not knowing when we will die, none of us know how to die either. (There is a really good book “How to Die: An Ancient Guide to the End of Life” by Seneca if you are interested)
So, how do we talk about death? The subject of death is often avoided. Usually, we experience it first-hand. Most people my age have lost a loved one. Our grandparents, our parents, other family members. Most people my age have been to a funeral. Kids today rarely attend a funeral. The family has the body cremated and it may be interred in a mausoleum or it may go to a shelf in the living room. Funerals are expensive and they rarely have a payment plan. Having an entire family take a day off work and school to go to a funeral is hard to pull off in this modern world. I haven`t seen a funeral procession in my hometown in years. Simply put, the way we handled death in the world that I grew up in is gone. There is not enough closure for families nowadays, in my opinion.
I learned about death in the best way. My grandfather was dying and knew it. He explained it to me before he died. He said that the universe was a huge living being and full of energy and he would change shape and I would not be able to see him anymore, but he would still be with me. He said I could hear his voice in the trees when the wind blew and if I was afraid of anything to remember that he was there. He also told me to be patient with Grandma and Mom because they would be sad and would need help doing things around the house. I do not know how he explained it to my brothers; but they were calm also. When his funeral came around, I was nine years old. I didn`t cry and I was not sad. My child`s mind understood.
My adult mind…not so much. I hate every aspect of death now. I am pissed off that I cannot talk to my late family members. I do not want to die; I want to be selfish and stay here. I guess at some point I will accept my fate. But I want to talk about it. I want everyone to talk about it. I would kill to go back to my 9-year-old mind at my grandfather`s funeral and not be afraid of death or losing a loved one. Oddly enough, it was a positive experience. What an amazing person to give me that gift as a child. If only I can figure out how to do that for my family.
Anyway, I have read multiple articles about the “end of life” communications and last words of the dying. It`s a shame that some people will cling to the last words of a dying person as if it were some coded message that defines their future or their past regrets. Delirium is a real thing and I believe, driven by personality types, so please do not consider my final utterance to have much meaning.
I want to make a few things clear to my family about my end-of-life experience.
First, do not tell yourself silly things like, “she would have wanted it that way”. You either know what I said, or you do not. A more appropriate statement would be, “I hope she would have liked our decision”. I would probably say yes, I like your decision, if you are taking each other into consideration.
Let me explain. I have worked in healthcare. End of life care is always going to suck. Dying is not fun and prolonging death can be painful. Quality of life is at stake here. I do not want to be frightened and in pain because someone thinks they are supposed to do everything they can to save me. Please, just stop and let me go if it comes down to this. But losing me is going to be tragic and you are only going to do it one time. You do not get a practice run of this. Let`s all try to relax and feel a bit comfortable in our decisions.
Something you need to know…Doctors and Nurses are paid to save lives and they do not care whether you like it or not. It is more than their code of honor. (blah blah blah) It is about laws and insurance and hospital policy. The procedures they use have more to do with hospital protocol than they have with patient care. If the latest trend is a safety pin through your ear lobe then everyone will get one whether it has anything to do with saving the patient. Do not assume that everything they do is reasonable and necessary. Question everything they do. They may very well be necessary. They may also be an option, like drawing blood. They may only need to do it once a day and not every four hours, but every four hours is standard hospital protocol. They do not advertise that you can refuse some treatments.
Also, Resuscitation efforts are BARBARIC. They break ribs and necks and do all sorts of horrible things for the purpose of “saving a life”. They consider that broken ribs or necks will eventually heal so not a big deal. Nobody deserves to die that way or to live a short-extended period of life with broken bones and in constant pain. I guarantee if you ever watched them “bring someone back” you would reconsider having it done to you. Please think about how I am going to feel with broken ribs before you order me resuscitated. If I have stage 4 cancer or anything similar, please just stop!
Here is a list of my personal requests if I am incapacitated:
1. Do NOT tie me down. Especially not my hands. I have anxiety and if I feel trapped, I will literally implode. This is the worst possible thing to do in all cases. My anxiety will bring on a heart attack or stroke. If I am fighting with a nurse/doctor it is because they are doing something frightening so make them stop. I have anxiety so I will have overwhelming fear. If you need to keep my hand still, then simply hold it. Talk softly and tell me stories. That would be great! Telling me to calm down is useless.
2. Be aware that I may not be able to deal with a face mask. They have some that they tie on unnecessarily tight that force air into your lungs. I cannot handle that…see rule #1. Ask me! If I can calm down and chill, then some masks are ok. Treat it like a dog collar and make sure you can get a finger under the strap. If you cannot then it is too tight. If I am trying to take it off, then I am NOT ok so get it off me and get it off me NOW!
3. I am not afraid of needles or IV’s at all. But…the saline solution they use to clean the port can burn so if I am jumping or whining when then inject saline then they need to remove that IV and replace it somewhere else. This is significant because I have had this happen to me before and know how it feels. More than once I have seen nurses argue with patients that complained about the pain. “I know it’s uncomfortable, but we have to clean it” when the nurse just does not want to or does not have the time to replace the IV. Again, terribly painful. Do not believe them when they tell you that every pain is necessary.
*Keep in mind that Nurses are not usually cold and uncaring, even if they are tough. They are generally doing the best they can, and they really do care about their patients*
4. Get me some food if I can eat. Soup or something through a straw. Prepackaged milk. I have anxiety. I will have issues eating food from the hospital. I will trust something you give me, but I may not eat food from the hospital.
5. Bring rum. Who cares? If I am going to die anyway then turn off the machines, let`s get a shot glass and a soda and smile and drink until I drift off to sleep that last time. If you bring me rum on my deathbed, I will die thinking happy thoughts about how silly we are together. *smiling* That would be cool.
But most of all if I am in ICU or hospice and it truly is my deathbed then I hope you are playing Dave Matthews and Andre Bocelli songs for me. What would I want most? How would I feel? Would I want to hear that it is ok for me to let go? Not really…. I would probably be terrified. Maybe sick, and weak, and in pain. Nobody wants to die. I want comfort. I want to hold your hand. I want everyone to know how much I love them. I am proud of everyone`s accomplishments! I want Jamie to know that he was a good husband, my hero, and I want to hear that his life with me was happy. I want my brother Phil to know that I remember everything he ever did for me, from walking us to church as children as well as fixing my truck years later. I want my brother Robert to know that I remember the stories he told me when he came home from school and that he was a good big brother. I want Wendy to know that thoughts of her helped me when I needed strength. I want to hear about my kids` favorite memories and favorite foods…. that the clothes you kids wore were nice; that I provided for you well and that my hard work was appreciated. I want to hear that you kids had a good life and that you are going to be ok without me.
Most important, I want to hear that if I die; you will still be a family. I do not want to face death in a fearful and frightened way. I want to think happy thoughts and to have your laughter be the last thing I hear.
Yet, if something happens, and I am ALONE, and my family is not with me for any reason; then rest assured these are the things that I will be thinking. I will comfort myself with the millions of memories that we have made together. What joyful thoughts! You will all be with me.
That will be enough.
No regrets. I forgive all of you for anything you ever did wrong. I, too, apologize for anything I may have done wrong. Cry a little for sure, and then move on. When I think of my family and friends, I think of smiles, not tears! You guys were the best time I ever had! Just remember that the universe is a huge living being and full of energy and I will change shape and you will not be able to see me anymore. But I will still be with you. You can hear my voice in the trees when the wind blows and if you are afraid of anything… remember I am always there with you. Together we can do anything.
On that note:
This is from an article by Aaron Freeman:
You want a physicist to speak at your funeral. You want the physicist to talk to your grieving family about the conservation of energy, so they will understand that your energy has not died. You want the physicist to remind your sobbing mother about the first law of thermodynamics; that no energy gets created in the universe, and none is destroyed. You want your mother to know that all your energy, every vibration, every Btu of heat, every wave of every particle that was her beloved child remains with her in this world. You want the physicist to tell your weeping father that amid energies of the cosmos, you gave as good as you got.
And at one point you’d hope that the physicist would step down from the pulpit and walk to your brokenhearted spouse there in the pew and tell him that all the photons that ever bounced off your face, all the particles whose paths were interrupted by your smile, by the touch of your hair, hundreds of trillions of particles, have raced off like children, their ways forever changed by you. And as your widow rocks in the arms of a loving family, may the physicist let her know that all the photons that bounced from you were gathered in the particle detectors that are her eyes, that those photons created within her constellations of electromagnetically charged neurons whose energy will go on forever.
And the physicist will remind the congregation of how much of all our energy is given off as heat. There may be a few fanning themselves with their programs as he says it. And he will tell them that the warmth that flowed through you in life is still here, still part of all that we are, even as we who mourn continue the heat of our own lives.
And you’ll want the physicist to explain to those who loved you that they need not have faith; indeed, they should not have faith. Let them know that they can measure, that scientists have measured precisely the conservation of energy and found it accurate, verifiable and consistent across space and time. You can hope your family will examine the evidence and satisfy themselves that the science is sound and that they’ll be comforted to know your energy’s still around. According to the law of the conservation of energy, not a bit of you is gone; you’re just less orderly. Amen.
There it is.
I love you all. You will be in my heart even after it stops beating.