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.
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.