Them’s Fighting Words… and I am Sorry.

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.

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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.

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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.

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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.

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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.

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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.

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

Does this blog help you?

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?

ICU Doctor Burnout.

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.

Caregivers are patients and patients are caregivers.

There is an oxygen tank in the hall, and a wheelchair in the kitchen. These new things, just came this year, but we’ve gotten used to them. Just as we got used to the wheelchair, the sask polls, and the bathchair when my mom was sick.

About 4 years ago I knew Mom was sick, when she forgot her way home from the store. I was concerned when she fiddled with the car door, trying to turn the car lights on, but I became increasingly alarmed as she drove around the area the house was in, but never turned down our street. When I asked “You do know where our house is?”, she yelled “Of course I do. I was just testing to see if you knew where it was.”

After we got home, I left Mom, with Dad at the house and drove around rural roads, until I found a tree. I parked under it, and cried, and prayed.

Thus began a year of trying to find somebody, anybody who could tell us what was wrong. By the time she was diagnosed with Normal Pressure Hydrocephalus, she couldn’t walk, or sit up, or talk about more than bodily needs like going to the bathroom, or being hungry.

After a year of searching for an answer, she spent 100 days in hospital, having brain surgery, and learning to walk again.

When Mom came home from the hospital, she still wasn’t all the way better. It took her another year to get to the point of resuming daily activities, not using a walker or wheelchair on any days, and well, being who my Mom is again.

And then I got sick.

I had a severe allergic reaction for a prescribed medication, spent 8 days under sedation, with multiple tubes and wires in me, followed by weeks in the first ward that would take me, and then almost two years of recovery at home.

And then just after I got out the hospital, Dad got sick. He was in the hospital for lung and heart problems just a few months after I got out of the hospital.

We thought it was just temporary, but he got sicker and sicker. That summer, he had trouble breathing during exertion. Mom started helping him at work.

He fell down the stairs, one day. I thought of calling an ambulance, but he wanted to finish watching the hockey game.

The year went by, as the years before. I was still struggling to regain my abilities, and Dad was losing his abilities. Mom was so healthy, one of her doctors commented on it.

And now…

I’m still dealing with the ICU. Sometimes, like right now, I feel so week it hurts to breath, and my chest hurts. There are things I can’t remember that I knew before, and memories I can’t recall.

Mom is not as good as she was either. She makes mistakes. Today she went to the store, got the wrong things, and went immediately back. Because of memory problems she went to the store three consecutive times and still didn’t get what we needed for super. We choose another recipe. It worries me that maybe her Normal Pressure Hydrocephalus is coming back. Maybe she needs a shunt adjustment.

I used to be on top of these things. I made the appointments to get her shunt adjusted and I told the doctor exactly why I thought so. But after my ICU experience, I couldn’t. The neurosurgeon would look at me, to explain how she was doing, and I couldn’t remember. I couldn’t’ explain how she was doing, or recount the little instances that backed up what I was saying.

Mom, who was feeling better, took over, but then one day I realized she’s not making as much sense as she used to, she’s leaving burners on the stove after cooking, and she’s needing something, but I didn’t notice until now. I would have noticed much sooner before. I would have been able to help her. Now I can’t even guarantee that my brain will be working when we do have the appointment with the neurosurgeon or if it will be one of those days that I struggle to remember basic things like words.

Dad, is now on oxygen. Mom’s old wheelchair sits in the kitchen, because sometimes Dad gets too tired going from the kitchen to the bedroom that he needs to sit down. He doesn’t get his own drinks or anything anymore. We get it for him.

Sometimes I am afraid he will die.

And I can’t give him all the attention I gave Mom when she was sick because I’m just not able to. I’m not as healthy as I once was. I don’t remember or notice things like I once did.

Sure I can get things like water and medicine for him. I can carry oxygen tanks up and down the stairs. But making all the doctors appointments, doing research on what all the terms the doctors use and what everything is… Mom does that, and now… Dad told her to take care of herself, because he needs her to be healthy to take care of him. He knew it was selfish, but… He has a point.

And I feel like a bad daughter at times.

I can’t do it, because I’m not as cognitively able. I also can’t do it, because I’m not as emotionally able. I have PTSD (actually diagnosed by a psychiatrist after being in the ICU), and I’m often dealing with my own emotions, and can’t pay attention to what the medical people say.

After Dad’s last angiogram, Mom asked me what some nurse said. I couldn’t remember. Before the ICU I would have remembered. I would have asked questions. Instead I was in my own little world, trying to not fall apart.

I don’t even go to Dad’s appointments. Mom does. Because I crave the time alone. I’ve always needed alone time, but now I really need it, to deal with what’s happened to me, and to write in this blog.

It’s for people like Dad that I am doing it. Because if he ends up in the ICU, I want to have made doctor’s understand what the experience of the patient under sedation is, before he gets there.

So now… There is an oxygen tank in the hall, a wheelchair in the kitchen, and it sometimes breaks my heart, because I’m not ready for my Dad to die, and I’m not fighting for him as much as I fought for my mother, because I’m just not able to.

I’ve seen tweets about “should we offer palliative care, or live saving care to elderly patients?” Really it’s questioning the worth of the patient.

Is this patient, worth all the money, time and effort to solve this problem, if there isn’t much time left anyway?

But… The person you see there in that ICU bed, is not the entire person. You don’t see the people who will be devastated by the death. You don’t see all that person does for others when they are well. You don’t see what that person did in the past. And asking about profession doesn’t tell you much beyond how much money the person likely makes, because there is so much more to a person than money.

I don’t have much money. I don’t have a valued profession. I don’t even have a house or home of my own. I live with my parents. Questions like “who do you live with” don’t tell the whole storey either.

When I say “I live with my parents”, I know people think ‘and you’re mother washes the clothes and cooks your meals’. They don’t see that my parents want me to live with them, and until I went to the ICU I did all the cooking and cleaning, and I was a caregiver for my mother, because my Dad couldn’t. He had to work.

If from those questions: “what is your profession”, and “who do you life with”, the ICU doctors had decided my life wasn’t worth saving, where would my parents be? Would the death of a child have already killed them? Where would my nephew be? He’s only a teen, and he shouldn’t have to deal with death yet.

Family’s are a unit, caregivers are also patients, and patients are also caregivers.

Please never judge somebody as unworthy of all the care you can give.