Let’s Get A Little Uncomfortable

Let’s talk about death. Not grief. Not what comes after death. But what comes immediately before and during. Yeah…the really uncomfortable stuff.

The first death I experienced was my little box turtle when I was four years old. My mother and I had just moved away from my dad because his alcoholism was out of control. According to her, our new apartment was rather cold. So before bed one night, she put the turtle tank, just a bowl really, on the radiator to keep him warm for the night. In the morning she woke to a dead turtle. Obviously it wasn’t intentional, but after just moving away from my father I’m sure she didn’t look forward to telling me she inadvertently killed my turtle. So she didn’t. She told me he was getting too big for his tank and we were going to release him into the ocean to grow and swim with the big turtles…via the toilet. My big, innocent, animal-loving heart was spared the pain of death.

The next death was my paternal grandfather when I was five. I have no memory of anything related to it, or to him for that matter. I just remember him from pictures.

The next death was a big one. It was June 14, 1975, a Saturday evening. My mother and I were eating KFC chicken and the phone rang at 6 p.m. It was my paternal grandmother calling to tell my mom that my dad had died. I was ten years old at the time. My dad was forty-five when the booze finally killed him. My mother answered the phone and only a moment later cried out, “Oh my God” as she slid down the wall. As I ran over to her asking what was wrong, she shouted, “Daddy’s dead.” I ran into my bedroom and pulled out every picture I had of my father. Polaroid’s were popular back in the ‘70s and I had scads of them. The one thing I did understand about death was that it was final. I would never see my father again.

I had one week left of fifth grade when dad died. My mother pulled me out of school, and I spent the next week at my grandparent’s house swimming in their pool. My grandmother (mom’s mom) told me, “Daddy’s date was written in a book when he was born. Nothing would change his death date. But it was only his body that died. His soul went to heaven.” Grandma was a spiritual woman and had a strong sense of God.

That was the end of the discussion. My mother took Valium for about three months, and I moseyed into the summer before sixth grade with a million questions and a complete disbelief I would never see my daddy again. At the funeral the casket was closed since my dad was found at least three days after he died. The last time I saw him we had an argument. He was trying to go sober and had the DT’s, which made him ornery. He wouldn’t kiss me goodbye, and my mother said, “God will punish you for that.” Her last words to him. And that was the end.

The following year, Dad’s mother died. I was sad, but we weren’t extremely close. And death was becoming something that happened with some regularity and then you didn’t talk about it and moved on with your life. About six years after that, mom’s mother died. And the following year we had to put our dog down.

By the time I was seventeen I had experienced six significant deaths, if you include Myrtle the turtle. And we never talked about any of them before or after they happened. One day you’re here…the next you’re not.

About forty years after that was the event that would change my life forever. Dave, my husband of twenty-one years, would take his last breath after coping with cancer for three years. As I write this, it’s just about seventeen months after that day and I’m only starting to get a grasp on my life. But that’s a topic for another blog.

The one thing in life that is definite from the day you are born is that you will die. It is also the one thing that we know nothing about. Man goes into space, he goes to depths in the ocean that are incomprehensible, but the one thing he can’t answer is, “What happens after we die?” And because we know nothing about it and it makes us so uncomfortable, we choose to not think about it. Let me make this really clear: I have no idea what happens after-after we are dead-dead. That’s not a typo. That’s what I call it.

Since I was about seven years old, I lay in bed with my brain wandering, questioning what happens after we die. I couldn’t comprehend what it means to not be here. If you’re not here, where are you? How could I comprehend this? I was seven! Some of the greatest philosophers of all time have no comprehension of what happens when we are dead-dead.

But let’s go a little before that. Let’s talk about dying, not dead. There’s pretty much four ways you’re going to lose someone. Three of them are sudden, one is not. The sudden deaths are a medical crisis, such as a massive heart attack or a brain aneurysm. The second is suicide. The third is homicide. Each one of them has an onslaught of issues for the loved ones left behind. The only thing they have in common—as with my dad—is one minute they are here and the next you are getting the phone call 

No one is ever prepared for a sudden death. How could you be? But most are not prepared for the not-so-sudden death either. The deaths from illnesses, such as cancer, Alzheimer’s, ALS, Parkinson’s, or the slew of other diseases and conditions that gradually steal a person’s life, are also surprisingly hard to deal with even though you can see it’s going to happen.

How many of you have read Elizabeth Kübler-Ross’ On Death and Dying? I had heard of this book over the years. I knew it as, “The book that deals with the stages of grief.” But I thought it dealt with the stages of grief the survivor goes through. No-no, my friend.

After Dave died I had a thirst for knowledge. Yes, he had cancer. Yes, it was terminal. Yes, short of being hit by a bus I knew the cancer would kill him. But I still couldn’t comprehend that he actually died and how I was going to live with that. I read three books by Kübler-Ross and one of them was On Death and Dying. Geez, I wished I read that a year ago. She discusses the stages the terminal patient goes through knowing their death is imminent. How could I not know this? I wish I read that book while Dave was still alive. I did the best I could helping Dave face his own death, but I would have had the inside playbook on dying if I had read that book. I would have had a better idea of what he needed.

I asked our oncologist if he ever read it. Side note—if you haven’t read Something More Than Love yet, you don’t know how much I adore and respect our doctors. Dave and I formed a lasting relationship with “our” oncologist and “our” surgeon. Anyway, I thought maybe it was required reading for someone who would become a doctor and have to deal with the slow death of their patients on a regular basis. After all, isn’t terminal cancer a slow death? Nope, he never read it. I asked my favorite hospice nurse and friend if she read it. She did, but it was never required during her training. What?! How could all these people that deal with imminent death not have read the book that discusses the way a terminal patient is feeling? Are we all just so focused on the physical that we forget to deal with the emotional aspects of death and dying?

Dave and I knew about six months after his initial diagnosis that he would never again live without cancer and that it would take his life. Dave started preparing for this way before I did. I was too busy trying to cure him to spend time thinking about his death and what that meant. And I certainly had no idea what the last two weeks would look like. Hospice tries to prepare you with a pamphlet about “transitioning.” But there was so much more. So. Much. More.

I’m not going to go into all the raw details here as I did in my book, but suffice to say I think this is something we all need to get on board with. When a body is dying, it goes through dramatic changes. No one should be embarrassed that their body is returning to a state of infancy. Ultimately it is no longer self-sufficient, and diapers, drool and pressure sores become part of a normal day. Can we please accept this is not a reflection on the person who is dying? Can we distinguish the difference between a person’s dignity and the fact their body is going through an inevitable process? And if we do that, then the caregiver won’t have to bottle up all the painful details nor be afraid to share them with a society that cringes over bodily functions.

In my book I do detail the very raw and unabridged version of my experience with the changes to Dave’s body. Here is a snippet of a recent review of my book.

“This being said I didn't honestly know this was the book I needed in my life at this moment in time. My mom is almost 90 and has cancer. I don't know if it will be the cancer that takes her from me or something else. My mother in law has early onset Alzheimer's and is late stage. Patty's book has enlightened me on what to expect when the time comes and I appreciate the knowledge more than words can say. I'm so grateful for how she has shared her story and gone into the finer details of the inevitable.” Kathleen R

Knowledge is power. I understand societies in other parts of the world have very different feelings about the whole process of dying and death. And I believe that an individual’s beliefs about what happens after-after are extremely significant to how we survive this process. Certainly if you believe there is an afterlife and you will be reunited with your loved ones that have crossed before you, there is some level of comfort. 

What I’m asking is that we start discussing within our families the normalcy of death. Maybe my mom should have told me that Myrtle died. I’m not finding fault with her, but maybe that’s when the learning starts. Maybe we need to learn about the changes that will occur in the body at the end-of-life many, many years before it happens. If our friend at work says, “I was late this morning because my mom had a BM during the night. I had to clean her and the bed before the day nurse arrived,” what is going to be your first reaction? Are you silently going to think, Ew. That’s gross. I hope I die before that ever happens to me?

If we realize this is normal, yes…it is normal, we could be supportive to our friend and empathize with how exhausted, frustrated, scared and sad they are. “Geez, you must be so exhausted. What a hard way to start the day” is such a supportive way to help your friend.

If we all grew up realizing the process of dying is not shameful and there’s nothing to be embarrassed about, maybe we could all comfort one another a little better. And maybe we would be prepared and not so shocked about all the changes. We could share this with our friends and family and they wouldn’t be frozen not knowing what to say. They would be able to comfort you just as if you said you were recovering from shoulder surgery and you feel awful. And if you were able to be comforted and not feel so alone, you could focus on the love you have for the person that is leaving and make sure they feel loved.

There are so many uncertainties to deal with when your person is dying. Let’s try to control what we can control by getting a little more comfortable with our bodies. Our bodies change throughout our entire life, it’s no surprise the changes continue when it ends. Your body doesn’t just stop.

So when your cousin says her mother-in-law’s cancer is advancing and she needs to stay with her to be her caregiver, don’t just say, “I’m sorry to hear that.” Ask her if she wants to talk about it. Ask her if she needs help contacting any services that can be of assistance. Maybe say, “You’ve always spoken so highly of her, you must love her dearly and you must be hurting now.”

Open the door for real conversation and you will learn how to truly help someone who is suffering. When it’s your time to be the caregiver you will realize how valuable this type of conversation is.