Two years ago I was rushed to the hospital by ambulance because of an allergic reaction. I was put on a ventilator, feeding tube, multiple tubes and wires, and sedated for 8 days, before being transferred to a regular ward.

Shortly after I got out the ICU my Dad was admitted to hospital. Thus began a year or so of him getting progressively sicker and sicker. A few months ago he was told he dying and there was nothing else the doctor’s could do.

When my Dad was told he was dying, I still wasn’t completely better. I was still in physiotherapy designed to regain the muscle mass and strength I lost when I was in the ICU, I was keeping this blog about being sick, and I was writing my thoughts and feelings in a diary (that I kept since I was 11 almost 12).

When Dad got sick, I thought he’d get better. I let Mom go to his appointments. I stayed home and worked on my blog, because those were my only times to be alone.

I didn’t know that he’d get sicker, nor did I know that his eventual diagnosis would be fatal, but it was.

And then the guilt set in. How could I focus on my own physical and emotional health (that was already suffering), when Dad was dying? He wasn’t going to get better. I wasn’t going to die? Shouldn’t all my attention, thoughts, worries, and focus be on Dad?

I stopped going to physiotherapy appointments and stopped doing my exercises, I stopped writing the “My storey in Chapters” part of this blog, and I stopped writing in my diary, because all of those things were for me. They didn’t help Dad nor focus on Dad.

And in a way, I think I started a death wait. I waited for him to call my name and ask for something. I was afraid to do much of anything with my free time, in case he needed me to do something for him.

____

Yesterday somebody asked me what my Dad would want me to do. Would he want me to quit everything? I said I didn’t know.

Today I asked. I sat down and told him why I quit all those things and asked him, what he wanted me to do.

He looked me in the eye and asked “What is it you think I want most?”

The look in his eye told me the answer “What’s best for your children?” I responded hesitantly.

“Yes. I want what’s best for you and your brother and that means you getting better, physically and emotionally. I want you to focus on you, do your physiotherapy, see a counsellor, work on your writing and do your blog. From what I’ve read on your blog, it’s very good and you’re a very good writer. Take care of you. And if you do that, you’ll be more able to take care of me when the time comes, and you’ll be more able to deal with my death when the time comes.”

Thinking about his death makes me cry. You know all your life, that people die, and that someday you’re parents will die, but you don’t really know it until it happens.

His illness doesn’t suddenly make mine disappear. I am still struggling to regain what I lost. I still get exhausted doing things I used to find easy. I’m still emotionally wounded. I’m still thinking about my possible death, and questioning why I didn’t die. And what purpose my life has.

I still want good to come out of my almost dying. I thought of many things, but then last week I thought… Maybe those things aren’t my thing? Maybe I can make good come out my ICU experience by writing about it, because writing is my thing.

I can tell the story. My story. And maybe that’s enough, because maybe that’s what I’m meant to do.

I started writing about my ICU experience to help others, but through it I’ve helped myself, because telling the storey, is making me emotionally work through and deal with the pain.

And it’s not really taking away from Dad anyway. And it’s helping me. And I hope it’s helping you the reader.

So…. This blog is back. Please help this blog, by sharing, tweeting, retweeting, and commenting and by following the blog itself and or following me on twitter.

Right now, as I sit on the pink polka dot floor of my room, my brother, sister-in-law and nephew are rearranging furniture in our house, and I am crying as I write this, unable to help, or see clearly (through my tears).

My father is dying. He’s getting weaker and weaker, sometimes unable to talk clearly. The man who filled our house with singing his own made up songs about everything from taking pills to brushing teeth, making our lives a musical, sometimes has a speaking voice so weak that we can’t understand him.

I know he is dying. I’ve known for months. Time doesn’t make it any easier. Watching him get sicker, and knowing there is nothing I can do to make it better hurts a lot.

This furniture moving is making it worse. I know we are getting rid of a couch, and moving an old antique radio, and an antique sewing machine downstairs, to make room for a new medical chair we are getting. It will allow him to sit up, stand up and lay down all in the same chair.

But for me, it’s not an improvement, it’s one step closer to death. The part of our family, who doesn’t live here, is in the process of making our house a hospital room, where Dad will eventually die.

In a few weeks…

A month…

A year…

I don’t know. I have no idea, but I can see it getting closer and closer, and it hurts.

It hurts so deeply, I can’t express it.

I felt this pain before, when other’s died. My grandfather’s death at age 11, was the first death. I never knew there was a pain that was so unimaginable until then. He was alive in my dreams, but when I woke up, he was dead again.

And then my other grandparents, and an uncle died.

To help me deal with the death of one of grandmother, I read almost every book Elizabeth Kubler Ross wrote. I knew about death, and the stages of dying, and I was reassured that I was going through all the right stages.

I’ve almost died myself, not once but many times. The first was when I was a baby, and my parents were told I would died in infancy. I didn’t.

The second was when I turned blue, and wasn’t crying as a baby. My mother shook me until I gasped a breath of air, and started to cry.

The other’s included escaping a house fire in only my pajamas, and a car accident that involved a semitrailer, among other things.

The last was when I crashed in the ICU on Christmas Day, two years ago. I saw my grandparents walk by. I wanted to follow, but my Grampa turned around and said “where we are going, you can not come.”

That has haunted me ever since. Why couldn’t I go? Why didn’t I have more time to visit?

But all of that, doesn’t make my father’s death any easier. It doesn’t make the guilt of focusing on myself, through this blog, through my physiotherapy (I waited 18 months to see a physiotherapist after being in the ICU), through my writing, through the countless other things I do for myself, any less.

It doesn’t make the pain of knowing that I will be there for my father’s last breath, and then…

nothing.

He will be gone and he will never come back.

——

I fought so hard to make my mother healthy, when she had untreated Normal Pressure Hydrocephalus, but I can’t fix this.

I don’t know how. I want to be super daughter, like I was for my mother. I want to get a cure, the right doctor, anything, but I can’t because I just don’t know what to do.

And emotionally, I am falling apart. I cry everyday. I hurt. I feel guilty. I’m overwhelmed. I’m paralyzed with fear. I can’t make decisions (even the simplest), and I burst into tears at the smallest provocation.

I don’t know what I’ll do when Dad is dead, but if he lingers for years, and everyday is like this day for years, I don’t know if I’ll survive. I might completely fall apart.

But… I think he might die soon anyway. Everyday gets worse and worse. He’s not sleeping well, but he sleeps often. He’s talking softly. He’s saying his good byes to friends and family.

And through I it all, I am losing more and more places that I can be comfortable and that I can just sit and heal, and be calm, because the house is being taken over by medical chairs, and equipment, and my favourite places to sit and be are being encroached on.

Ironically when it’s all done and over with, I’ll probably cry just as hard, about the furniture being rearranged into a better and more livable space for Mom and I…

I sat on the sundeck, with my feet on the top step of the stairs, staring out into the snow covered night, thinking about life, death, and family.

My family were inside, laughing, talking, running around and having fun. Some were cleaning up after super, some were visiting, and teenagers ran up and down the stairs of the three story, open concept, home.

I sat outside. On one side was the house, on the other side was a house of a man who had died only a month before, and before me lay the stairs, leading down to the driveway, a snow covered street and a silent town.

I was cold. Sitting on the sundeck was cold, like sitting in a hockey rink watching small town hockey, but still I didn’t want to go in.

What made me flee into the cold?

10 minutes before, I was gathering dishes from the table, watching my nephew and my cousins children play, and seeing my family from a distance away. I grew up in this family. At one time I was in the youngest generation, but somehow as time passed, I became part of the middle generation, and my parents and aunts and uncles became the older generation that couldn’t hear, see, or walk as well. How did that happen?

Watching my cousin’s daughter was like watching my cousin at that age. Where had the time gone?

As I went to the table for more stuff, I realized I was breathing heavily. My chest rose and feel with exertion, and my breathing was shallow. Was I hyperventilating? Was I tired? Was I sick? Was it stress? Whatever it was I needed to sit down.

I felt too week to climb stairs without a railing to any of the bedrooms upstairs or downstairs, but the main floor was full of people.

I found the church bench, that sits below a wall of coat hooks at the back door, and laid down on my back. I may have been slightly hidden, but I wasn’t alone, because I could still hear my uncle talking to my parents, the children laughing as they talked, and other people. I had to get out, but I was too week (and slightly dizzy) to climb stairs.

I slipped on my sister-in-law’s slippers, put on my own coat and opened the back door. My sister-in-law appeared beside me and asked if I was leaving.

“No I just want to be alone on the sundeck”, I replied.

“The sundeck is nice, when the stars are out”, she said, before walking away.

I didn’t notice the stars, although they were most likely there.

I wanted to be alone to calm my breathing, lower my stress and think about life and death and family. My family. The one I grew up in. The one I thought would stay the same forever, and never change. The one I thought, would always spend christmases in my grandparents house.

Now that same family was gathering in a different house. All of my grandparents are dead. They are not the old ones in the family anymore. My parents generation are the old ones.

And my father is dying.

Death is hard. Very very hard.

Elizabeth Kubler Ross writes about death in her series of books. I read almost all of them when my grandmother died, and knowing the stages of grief, and knowing I was normal in following these stages, helped a lot.

I know about death. I’ve read about it. I’ve experienced it. I’ve helped plan funerals. I’ve spoken at funerals.

I almost died myself. I came as close to death as one can go without dying. And part of me wonders if when I saw my grandparents walk by, that maybe for a while I was dead.

And it wasn’t easy. I’ve cried about that moment multiple times.

But all that knowledge and those experiences don’t make my father’s impending death easy. It’s still hard. Very very hard.

It doesn’t make my falling kidney function any less confusing. What do I do? How do I fix it?

This is what I was thinking about as I stood on that step.

How could I survive when Dad dies? It’s hard now. It will be harder then? Will I have the strength to do all that is needed?

How can I take care of my own health, and maintain kidney function? Maintain the health I have now? Or even improve it? Can that even be done?

My brother and cousins all have children. I don’t. I’ve known I’m not healthy enough to be a mother for years, and yet I really really want to be a mother. I see these kids as they lean close and hug their parents, as my cousin is developing not just a mother daughter relationship her daughter, but a friendship.

I don’t have that. And I may never.

And that hurts.

I see how not just Dad is getting old, my uncle is showing his age too, reminding me of my grandmother when she was the same age.

And I think of the moment my grandparents walked by me as I lay in the ICU under sedation, and said “where we go, you can not come”, and how much that still hurts.

But if I had gone with them, I wouldn’t be here. I’d be dead.

And I just needed a moment to think, reflect, and deal with my own emotions and the weakness and tiredness of my body.

Eventually the step got even colder than a bench in a small town hockey rink, and I realized I’m going to get sick if I stayed outside any longer.

I got up and went inside.

A game of charades was starting, and I joined in.

Am I glad I went to the christmas party I didn’t want to go to?

Yes. I had fun.

Connections that were almost lost were remade. I realized I missed a cousin I didn’t know I missed.

We left when it’s almost midnight. The next day my father was too sick and week to go back, as previously planned. The entire group of people at my brother’s house, packed up lunch and came to our house. They even did the dishes before they left, and ignored the mess in our house. We’ve just been too stressed to clean up the things that have piled up over the last few months since dad was told he was dying. It just seems like too much work, and none of us really care anymore.

Sometimes it’s all I can do it brush my teeth, wash my face, have breakfast and get dressed in the morning.

But they didn’t care. They didn’t even mention it. (Not that I heard anyway).

I will end this blog post here because I have to go light the water heater that is constantly going out (at least once a week).

I just wanted to tell you about the christmas party I mentioned in my last blog post. It wasn’t as bad as a feared. It was actually good.

When the ICU staff save a life, they don’t see the life they save.

I’m not even sure I see it. What would that party have been like without me? Would they even have had a party? Would my name be mentioned? How would my father’s life been affected? My mother’s?

I can’t play Scrooge, from the book “A Christmas Carol”. He was able to see what people did in Christmas Future, without him.

I can a little bit. But I am glad I was at that party and not dead. Thankfully I know people won’t celebrate my death, as they might have Scrooge’s.

Thank you for saving lives, you don’t understand, and people you don’t know. Thank you for not asking questions about worth, before securing airways.

Merry Christmas.

____

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Two years ago today, at this time, I was in the ICU, with a child sized breathing tube, a feeding tube, and one other tube down my throat. I had a tube in my neck, and multiple tubes an wires in multiple other places in my body.

My father was driving home from work in another country (he travelled for work), and my mother, and other family burst into tears when they saw me, sedated, unresponsive and swollen in my ICU room.

I had entered my 8 day nightmare of sedation, and thought that an old school bully was now and adult and was trying to kill me with a man I called Frank. You can read about it in this blog, under the “chapters” category.

Right now, my parents are discussing what they are wearing to the family Christmas party that’s happening later today. Family is driving in from a city hours away. My sister-in-law is making last minute preparations for everybody descending on their newly constructed, and still being constructed house.

__

I thought today would be a hard day. Last year on this day, it was hard. I warned my family that if I feel like I’m going to explode or burst into tears I’m going to get into the car and leave without warning. My sister in law offered her and my brother’s bedroom as a safe place to go and deal with my feelings.

___

Everybody is gathering. Some of the relatives I’ll see, I haven’t seen for two years or more.

Two years ago today, my life was on the line, and two years ago on Christmas Day, I crashed in the ICU. I was almost not here right now on this day.

My family would have met, and celebrated without me. My nephew would have known death way too young and my parents would have known what it was like to lose a child.

What would their lives be like without me? Would they be gathering? Would christmas just be a painful moment they didn’t feel like celebrating, like it is for me?

____

These last few weeks have been so terribly hard. I’ve been told my kidney function has lowered even more, and I have kidney stones. I have research to do, but I haven’t done it yet.

I asked my family doctor to print off my blood tests results, and I want to research what they mean myself, and how to keep my kidney function from lowering.

My father said I could have his kidney’s when he dies, which unfortunately might be within the year, because he has heart and lung failure right now.

I suggested we could do a trade, a kidney for a lung, but I can’t give him my heart without dying.

I wonder why they haven’t offered him a heart and lung transplant. They just said he’s dying. No offer of any treatment. I asked about a palliative care doctor or nurse, and was told “that’s a good idea phone his family doctor”, but the family doctor hasn’t gotten back to us.

This might be his last christmas.

Family and friends have been making a pilgrimage to visit him one last time.

I am dealing with my own private torment. I feel like I am falling apart. Yesterday I asked my family doctor to refer me to a psychiatrist and a counsellor. I feel like I should be the strong one, who takes care of Dad, and acts like the superhero daughter like I did when Mom was sick, but I am falling apart. Emotionally I get angry, I cry, and I get despondent, all in the same day. Sometimes all in the same hour.

Maybe if it wasn’t all happening at once? If I didn’t have to smile, and visit with cousins, aunts and uncles, make small talk and talk about the past, think about my father’s death, deal with my own ICU anniversary, and deal with my own failing health all at once? Maybe just one at a time?

Honestly it’s been 8 years of emotional turmoil without a break. In the last 8 years, my father had a heart attack, we escaped our own house fire, with nothing by our pajamas, my grandmother died, her house was sold (which was in the family from the time my mother was born), our dog died, mom got Normal pressure hydrocephalus, I was in a car accident, I got sick, I was told my kidneys function was falling quickly, my father got sick, and we were told my father is dying. It’s been one thing after another, without a break to emotionally get over one thing before the next thing starts.

And through all that, my nephew has grown from a child to an teen, I’ve written a few books that I don’t have the courage to send to publishers, and time passed very rapidly.

___

And that is where we are. I’d like to end this blog post on a high note, but I can’t. There doesn’t seem to be a high note.

___

I will say, to those doctors, nurses and ICU staff, who work during christmas. Thank you for giving up time with family, to save the life’s of strangers.

Please remember that for you, it’s a missed family christmas. To your patients and their family, it’s one of the worst times of their lives. If they are a bit grumpy, it’s not because they hate you.

And please don’t lean over a patient with a candy cane in your mouth because your patient will smell it, and wish they had a candy cane too. I vividly remember being upset that somebody wasn’t sharing the candy cane I could smell.

___

Really I don’t know why I’m posting this, but maybe it will be of some use to you.

If you liked it, please share it, retweet it, and like it on twitter.

You can follow me on twitter or on this blog itself if you like.

Thank you for reading this.

Two neurological residents stood at the side of my mother’s bed. One said “everybody leave we are going to do a lumbar tap”. We all stood up to leave, before the resident added “except the daughter”.

I stayed.

When everyone left, I asked “Why should I stay?”, he replied “Because you calm your mother down.”

After she laid down on the bed, the senior resident instructed the junior resident to hold Mom’s legs in a certain way. The senior resident, positioned the needle, slid it in, got nothing, and then looked at the junior resident, and said “no you’re holding her wrong, let’s try again.”

He instructed the junior resident again, the junior resident held her legs, the senior resident tried with the needle, and got no fluid again.

Again he looked at the junior resident and said “no you’re holding her wrong, let’s try again.”

And again they tried.

I lost count of the times they tried. I wanted the lumber tap to work. I knew it was happening, and I knew it was an important diagnostic test to see if Mom had Normal Pressure Hydrocephalus. I knew that if she regained abilities for the week it was in, that she would be diagnosed with NPH, and if she didn’t regain any abilities, she would have something else. I knew we wanted her to have NPH because NPH was treatable. Other differentials… not so much.

I knew that I had the power to say “no you can’t keep hurting my mother”, but I also knew without this test, she’d never be diagnosed and therefor never be treated.

So I watched, while my mother was repeatedly put in pain, and I prayed about what to do. How do I advocate for my mother and work with the resident as a team? How do I not make this a “fight”.

After several tries I asked “Isn’t there another way? Can we make this easier”.

The resident looked at me, and said he wanted to try again. The junior resident again quit doing his job before he should have.

Finally, between tries, I raised my hand and said “stop”. Both residents looked at me. “I’m going to go get someone else, don’t do anything while I’m gone.”

I marched out of the room, introduced myself to somebody I thought was a nurse and asked if she could help with the procedure. She said she’d be glad to.

The new person followed me into Mom’s hospital room. When we got there I turned to the junior resident and said “You can go now. I got somebody else who will do your job.” He said nothing, but looked to the senior resident.

The senior resident said “You heard her, she doesn’t want you here.”

He looked at the new person, and she said “When a patient or family member says you have to go, you have to go, so go.”

I told him to leave and never come back. I did not want him making mistakes on my mother again.

He turned and left the room.

I turned to the new person and introduced her to the senior resident. She said “We know each other. We’re in the same residents program.” I apologized for thinking she was a nurse. She was understanding. The senior resident explained what he was trying to do. The new resident, and the senior resident did it together. It took one try.

Mom’s lumbar tap was in. It stayed in for 7 days. During that time, she was able to sit up, have conversations beyond basic bodily functions, look out the window without getting a headache, and walk down the hall with assistance from a physiotherapist. These were all things she couldn’t do before.

And then the lumbar tap was taken out. Very quickly she lost all the function she had regained.

___

I felt like I was in the movie Awakenings with Robert De Niro and Robin Williams. In that movie, a comatose patient is given a drug that restores all functions. When it is taken away, he becomes comatose again. His mother is informed that he will never get the drug again, because it is not approved.

I felt like that. My mother had returned to us. For one short week, she regained all of her abilities. And then she lost them. Her ventricles had expanded because of excess cerebral spinal fluid, and she was right back to where she was before the spinal tap.

It was obvious. She had normal pressure hydrocephalus. She needed shunt surgery.

But… The neurosurgeon wasn’t ready to do it. He wanted to “wait and see how bad she would get”. I wasn’t a brain surgeon, but I knew that the more damage to her brain, the less it would recover. I knew that he had to do the surgery now. But he wouldn’t. I argued. I told them I felt like I was in the movie awakenings. I learned everything I could about NPH. I asked questions, I listened, I read, I did everything I could. But the answer was “wait and see”. Wait and see what? To see if she will die?

Then I demanded she be moved to another hospital.

Once she got to the next hospital, the doctor took one look at her, and said “Why hasn’t she had surgery?”.

“I don’t know.”

“I know a doctor who can do this surgery. He’s very good, and he likes to do shunts. Can I contact him?”

“Yes”.

Within a week it was decided she would have the surgery.

___

100 days after Mom entered the first hospital, she left the second hospital able to walk, and resume the life she had left a year before.

The fight to get her better was over.

____

The fight may have been over, but she will still have regular shunt adjustments with the second neurosurgeon. She will need to see him all her life, but she’s not bedridden. And that is so much better.

_

Why am I telling you this very shortened version of one of my mother’s medical stories?

Because last week I realized that in many of my blog posts I talk about “fighting” with doctors and being an “advocate” for patients (myself and family).

Those are adversarial words, and I realized that with those words, I might be pushing away the very people I want to read this blog.

I’m sorry. I’m sorry to anybody who has read those words and statements and have been offended. I’m sorry for anybody who read them and thought “I’m doing the best I can.”

I know there is doctor burnout, and I know that when you are dealing with a patient, you might be thinking about what goes on at home, or you might be so drained from something unrelated to the patient, that you just can’t think. You might need to go away and think or cry or vent to somebody else.

I get that. As I said in one of my previous posts, I understand, just a tiny bit of what it’s like to work with dying patients.

And I’m sorry, that sometimes it seems those very patients are fighting against you.

I’m sorry and I don’t know what to do about it, because if I had to go back in time, I would do that very same thing again. I would change just one thing: I would evict the junior resident sooner.

____

My Dad is dying. The tears are so close to my eyes now, and it seems it doesn’t take much to make me cry. I love my father, and I don’t want him to die.

I don’t want fight with any doctors or medical personal. I want to work with them.

And right now, as I write this I don’t have the answers. I’m hurt and in pain.

And I don’t know what else to say or do.

———

If you want to see an animation I made about my mother’s medical story, see this link: https://youtu.be/uRox_Wnv6zQ

I don’t know what to write.

It seems so selfish to be focusing on my story when my Dad might die soon, or in 18 months.

But my story is important too. As I said before I knew I wanted to write my story almost as soon as I woke up from sedation. I knew that few people knew what it was like to be under sedation. And I knew I had to tell people that.

I wrote on scrap paper the nurse gave me, about sedation, I wrote my my diary when my parents brought it to me, I wrote in my diary at home, I tweeted and I started this blog.

My Dad is gasping for breath in the next room. He gasps in pain every so often. He’s slowly losing his energy and his health.

This isn’t the first person I’ve seen die. As I said in my previous blog post, I worked with palliative care. I was 22 years old. I wanted to help people, the more they needed help the better.

I didn’t realize how hard it would be.

I do now. Unfortunately I do now.

Mom and I were sitting on the bed in her room, when she asked me if I wanted Dad to die at home or in a hospital. Apparently he was given the choice.

For Dad I want him to die at home. Although I actually wasn’t with anybody the moment they died, I spent 4 hours a day with a woman that was dying. We visited. She told me about her young adulthood, and showed me pictures taken after things she had accomplished, like graduations, and weddings and things.

I listened, got to know her and her family, and did those things that needed to be done, like bathroom assistance, and answering the families questions about services available.

I went to the library, and tried to sign her up for large print book service because her vision was going, but I wasn’t a family member and the person at the desk wouldn’t let me even collect forms for the family.

It was hard watching her get sicker and sicker.

But it as hard as it was for me, it was harder for her family, because they loved her. I was just an observer.

Four hours a day became eight hours a day, became 0 hours a day because she went to a private hospice.

And then she died.

I know how difficult it can be to watch somebody die. I don’t know what it is like to lose a parent, because right now, both my parents are alive.

For Dad’s sake I want him to live at home until death. I want to afford him that ability.

When my mother was in the hospital, my brother asked why I visited her every day. “The nurses can take care of her.”

“But they don’t love her like we do”, I responded.

He said nothing.

I know what it’s like to be in the hospital, and I know how important visitors are, because I spent a lot of time in the hospital as a child.

So the question is: what is this blog to become? Is it selfish to continue it, writing about me, and only me, throughout Dad’s illness? And honestly you’re going to have to tell me that. You the reader. I need your feedback.

I have always wanted to help people, and that has been demonstrated through the post secondary courses and degrees I’ve perused, the jobs I’ve had, the caregiving I’ve done for family (unpaid) and strangers (paid), and this blog.

I want to make life better for other people.

Is this blog doing that? As a reader of this blog, does it help you in your work, or in your personal life? Does it help you understand and treat your patients?

I’m being brutally honest here. Life might get harder for my family. And there will be times that I will give my all, and feel very very guilty for focusing on myself and my story.

But if it’s going to help you and your patients, I won’t feel so guilty for focusing on me and my storey, and not Dad and Dad’s story, in the writing of this blog.

Or maybe you might want to hear about Dad and his storey too. Maybe I can write about both?

I’ve been stuck with the blog. I’ve been stuck because I don’t remember what exactly happened next in the storey, and I don’t know how to tell it in a coherent way. I know what happened next, but sometimes things are out of order.

Maybe I should just write what I remember, and not try to put it in any order.

I don’t know. I’m really making myself vulnerable here, because maybe it’s not helping you, and maybe it is helping you and as things go on in my family, I will be unable to continue a blog I feel obligated to do.

I need your thoughts and comments.

Please share your thoughts and comments in tweets, or on this blog in the comments section.

And just a note about tweets and retweets. I saw this ridicules discussion on a talk show. They said if you like somebody’s tweets, and posts too often, you are “cheating on your spouse.” Balderdash. If I like your tweet or post, it’s because I liked what you have to say. If I retweet it, it’s because I like it enough I want other people to read it. If you like or retweet my stuff, I assume the same thing. Tweeting has nothing to do with romance. I just wanted to get that nonsense out of the way, in case anybody else saw the same talk show and hesitates to likes or retweet myself or thinks that my likes or retweets are romantic. Feel free to like and retweet all of my tweets and blogposts. I will not take it in a romantic or stalking way. That’s just pure balderdash.

Note: I did not spell check this either. It’s being posted 2 seconds after it’s being written. I just wanted to ask, and post it before I run out of courage.

Conclusion: What do you want this blog to be about? Is this blog helping you?

Being an ICU doctor is an important job. And I imagine it’s a difficult job.

I’ve been reading about ICU doctor burnout on twitter, from the people I follow.

In a small, small way I understand.

Many many moons ago, I took a course at a technical school about how to take care of children and adults with special needs and illnesses.

A year after I completed the course, I moved away from home with a group of friends. We got an apartment, and looked for jobs in a new city.

It was a scary and exciting time.

I got a job as a palliative care aid. I spent everyday with dying clients.

I will never forget one woman, who did die by the end of my first four months there. She seemed fine, in the beginning of the summer, but by the end of the summer, she was in a hospice. I was notified by her family that she had died.

When the summer was over, despite being offered a raise if I stayed, I went home and decided I didn’t want to spend my time with the dying anymore.

Note: There was more to that decision than I’m saying, but I don’t want to get into it all now.

I have spent time with only a handful of dying people.

ICU doctors and staff, spend everyday for years around dying people. That is the nature of their jobs, and I can understand why burnout happens. I was hard enough to watch just one person get so sick so quickly. How does anybody do it everyday, for years?

My father is sick. He was told by his cardiologist that he has 3 to 18 months to live.

When my mother was sick, my brother told me it seemed like my whole life was leading up to taking care of my mother. That was hard. Very very difficult. But I knew she was going to get better. I didn’t know what was wrong, and I had to fight to get her to see doctors sooner than waiting lists provided, but I knew I’d find somebody to diagnose and treat her.

Dad… He doesn’t actually have a diagnosis, but he’s already had 2 heart attacks, and now his heart is so damaged, that the cardiologist says nothing can be done.

And my heart is breaking. I don’t know what to do. There is nothing I can do to fix this.

I don’t want to watch somebody else die. I don’t want to watch my father die. I just don’t.

There might be a time that my father ends up in CCU (Cardiac Intensive Care Unit), that’s in the same hallway my ICU is in. I’m shaking just thinking about it.

If he does I want the staff there to not be burned out. I want them emotionally able to do whatever they need to do for Dad. I don’t want them to be thinking of their own depression, anxiety and burnout.

But how? How can I help with the burnout?

Everybody needs a good work environment. It should be considered a human right. And every patient needs a doctor who is emotionally able to do the job. Burnout affects doctors, family’s, patients, and family’s of patients. It needs addressing.

As someone who left after one death. I don’t know how you do it. Burnout is so understandable.

How can the problem be fixed? How can I help? How can anybody help?

And thank you for doing what you do, despite the burnout.

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Note: I have done a lot of things in my life time. If it seems I mention some thing else at some other time, it’s because I’ve done more than just what I mention.

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Note #2: Please forgive any spelling mistakes. I usually write rough drafts of these things, let them sit for a few days and then go over the again. This is the rough draft. I just needed to say it, while I was thinking and feeling it.

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Note #3: Thank you for reading this. If you liked it please share it, retweeted it, like it, or whatever.