Right now a friend is helping cutting down trees in our back yard, our dog is upset she can’t go out to join them, and my mother is exhausted from the work she’s done all day.
Our back yard looks like a forest of miniature trees with branches and leaves littering the yard.
Yesterday there were 5 big trees surrounding the yard’s perimeter.
Today there aren’t many.
Instead they are chopped up into small pieces that cover the yard.
All this because, yesterday a tornado blew through our yard, causing trees to fall down into the fence and our sundeck. Strangely enough the trees blew down, but the fence is intact (except where the trees were beside it).
One big, old maple tree, blew onto our sundeck and roof. It’s the one Dad’s friend is carefully chopping into pieces, to get it removed from the sundeck and roof, without causing damage to each.
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Dad just came in, huffing and puffing. He’s recently gone on oxygen and is having trouble breathing when he exerts himself, but he wants to be apart of the activity.
Mom and I have been rushing around supporting him, getting new oxygen takes to take outside, getting tools, and just generally supporting him and his friend as they work to take the tree down before the weight of it causes any more damage.
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It wasn’t that long ago that I was so sick, that I couldn’t walk from the couch to the bathroom without hyperventilating. I’d just gotten out of the ICU, and I wondered if I’d ever get the energy to do any more than that.
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It wasn’t long before that, that my mother had Normal Pressure Hydrocephalus, and I was her main caregiver. It took a year to diagnose her, and in that year she lost so many abilities.
After her surgery, she spent months regaining all those abilities.
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We aren’t much by the world’s standards. We aren’t millionaires, we don’t have fancy houses. Status wise, well, we are just normal people who struggle with our health.
My father, a once strong man, who I though at 12 belonged in the big and tall club, now looks like an old man, dragging an oxygen tank behind him.
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After my last blog post a discussion about taking medical history’s in appointments took place.
I said that I thought doctor’s were snoopy, asking questions about things that happened years ago. Somebody very nicely told me that medical history’s help, and apologized they seem so intrusive. (Thank you).
The question “What is your occupation”, always annoys me. If I said “I work in the prime minister’s office”, would I get more attention than if I said “I’m unemployed?”
The question “Who do you live with?” also annoys me. If I said “I live with my husband”, would I get more attention than if I said “I’m homeless?”
I always thought those questions were designed to judge a person’s worth, and then decide how hard to try, based on that worth.
If those questions are designed to get at abilities, they don’t work.
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I am unemployed, I live with my parents, and I would be rated a the lowest abilities with those questions.
But….
If you look at what I do….
Before I became too sick to do it, I cooked, cleaned and cared for my parents.
My father had a job that took him on work trips often, my mother had undiagnosed NPH, and I was her main caregiver.
Without me, she would have gone into a home, and I’m not sure she would have gotten diagnosed.
I took her to multiple doctors, and I phoned specialists again and again telling them I needed a more urgent appointment. I pushed for somebody, anybody to diagnose her. Finally she was diagnosed by a neurologist, using an MRI.
Dad couldn’t do it, because at that point, he was home for a long weekend twice a month.
By the end Mom couldn’t take care of herself.
Thankfully Mom had surgery and made a full recovery.
By the time I got sick, Mom was able to take over the cooking and cleaning. There was a role reversal of caregiver, care receiver, that was hard on both of us.
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But the answers of “I live with my parents”, and “I’m unemployed” would have told you nothing.
Instead ask questions like “What do you do during the day?” and “what unpaid work do you do?”
Because paid work, is not all work. It’s not even the most important work a person does. Caring for parents, raising children, taking care of the yard, cooking, cleaning, and all the things a person does at home, are also important.
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Ask about a person’s education or what they do for fun?
Note: I’ve learned that people don’t like hearing I’m good at math. They don’t even like it when I provide the answer to a math question they’ve been struggling with. For this reason I usually pretend to be just as bad at math as everybody else. If you think I’m bragging, I’m not. I just want to illustrate a point.
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I am good at math. I always have been. When I was under sedation, I realized I couldn’t remember the proof for 1+1=2, always equals 2 and never equals anything else.
It is the basis of addition, the reason additions works the way it does, and one of the reasons number theory works the way it does.
I was very upset that I couldn’t remember, because math is how I saw the world until then. I was always doing math in my head, pondering math questions, and relating it to what was happening in my life.
My mother was shocked when I went shopping with her as a child. When we got to the till, she pulled cash of her wallet, and I said a number. She turned to me and said “what”, and I said “that’s the amount of change you will get back”. I was exactly right, and had calculated the price of everything she got, the tax on that, and the change she would get back to the penny, all in my head.
She used that skill, ever after. At any point in the shopping trip, she would ask me “what’s the total now”, and I would tell her.
I lost math after I was in the ICU. I seemed perfectly fine, like I had lost no cognitive function at all. Those stupid questions about “what animal is this”, and “what’s the date”, didn’t access my cognitive loses at all, because those questions didn’t take into consideration of what I knew before.
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A few weeks after I got out of the hospital, my father phoned to say he had seen a long train. He knew how fast he was going, and how long in time the train took to pass him. He wanted to know how long in km the train itself was.
I burst into tears. He asked me questions like that before, and I always answered. Now I couldn’t remember how to calculate it, and when I looked it up on the internet, I couldn’t understand the explanation of how to calculate it.
It hurt me deeply. I felt I had lost a part of who I was. Math was so integral to who I was that I felt like apart of me was gone.
It’s been 18 months, and I am regaining my math and cognitive abilities. My mother says she notices improvements every day. And I am thankful.
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But the cognitive test questions, the occupation questions, the “who do you live with questions”, didn’t at all detect a cognitive problem.
If a problem isn’t detected, it can’t be treated.
I deserved treatment as much as any body else.
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I look at Dad with his oxygen and health problems and I wonder what questions he will get? Will his status from employed to unemployed affect his health? Are those questions really used for judgement? Or are they used to assess ability?
If they are used for assessment, do they work?
They didn’t with me.
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Dad’s friend is back. He went to the store for a new saw blade. He’s going to finish the job of tree cutting now.
And that is another thing that should be taken into account.
Who will miss the person when they die? Who does this person rely on? Who has this person helped? How did they give to those around them?
Because that is what’s important.
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I’m going to end it hear, and see if Dad’s friend needs help.
Christmas in the ICU 