It was election day, November 6, 2018 when my mother suffered a stroke at home.
She was sitting on the sofa, watching the election returns start to come in on TV. I had just come home from my last class of the day, Yoga, and I was cooking my dinner while sitting and talking to her. She said that she was not feeling well, and she wanted to go lie down. When she stood up, she fell nearly face-first into the entertainment center. I tried to catch her, but I was a few feet away, and at a weird angle. I only deflected her a little.
From there, she tried to come back to standing, but couldn’t quite make it. She tried to pull herself up on furniture, including a swivel chair that kept turning. I encouraged her to just sit still for a few minutes, but she was determined. She asked me to go get her walker, which she hadn’t used for years and that typically sat in a back closet.
I brought it out and put my weight on it for counter-balance, but it still wasn’t working as an assist for her to pull up. Next, she asked me to drag her back to her room. I know a little about body mechanics, and I didn’t see dragging 150lbs of mom as being a great experience for either one of us, mechanically speaking.
So she started scooting herself down the hall toward her room. Once she got there, I was able to help her stand, and she successfully made it into the bed, with some challenges.
I thought I had her safely in the bed, so after talking to her for a few minutes, I went back to the kitchen to try to eat my dinner. I took a few bites, came back and talked to her, went back to the kitchen and took a few more bites.
At some point when I was in the kitchen, she decided she had to go to the bathroom, and decided to get there by herself. Attempting to use the walker for help, she tried to get out of bed on her own and fell into her bedside table, landing on the floor. It was a pretty hard fall that brought me running back from the kitchen. I found her sprawled on the floor, her left leg was somehow wound up in the middle of the walker supports and it had to be unwound. It was very difficult getting her to bend and move her left leg to get it untangled from the walker. I couldn’t see it yet, but she would have an enormous bruise on her left hip from falling into the bedside table. The bruises would be so pronounced that in a few hours, people would ask if anyone ever hit her.
My mom had colon cancer a few years ago, and will use a colostomy bag for the rest of her life. The fall caused a bag fault, which meant the bag would need to be replaced. This is something she had been independently doing for the past several years. Once I got her back in the bed, we started trying to work on fixing the bag. A rather nonsensical conversation ensued.
“I can’t see the stoma,” she said. “Where did it go?” she said.
If you don’t know about colostomies, this question is a lot like asking, “Where did my belly button go?”
It was right there, on the left side, like it had been for years.
This was the point at which I called 9-1-1.
My mom worried about things like the EMTs having to walk all the way down the hallway to her room, and not being able to bring a gurney back, and not having her shoes on. In the process of falling and dealing with the bag, and not feeling well, she had also removed some of her clothes, so we found a nightgown and some shoes to slip on, and I helped her get to a chair in her bedroom.
Meanwhile, she massaged her neck with her left hand and said, “It’s so weird, I feel these ghostly fingers on me. Like someone is touching me. It’s like someone’s rubbing my neck. Is that you?” she asked.
“No, mom, I’m standing over here,” I said. I was about four feet away, out of reaching distance. It was clearly her own left hand rubbing her neck.
Once the ambulance arrived, the paramedics conducted a short interview. They talked to me and to her. They asked her a series of questions, about what had happened, about current events, the election, what year and day it was. They asked what medications she took. She showed them her high blood pressure medication and said she didn’t think that had caused the problem, because she hadn’t taken it for four days.
Based on this interview, the paramedics felt that she was lucid and in no immediate danger, and they did not want to take her to the hospital.
“But, she can’t see her stoma,” I told them. “She has been maintaining her own colostomy for four years, and she can’t even see it now. Isn’t that a problem?”
Based on this, they rather reluctantly agreed to take her to the emergency room.
In the ER, the doctor ordered a series of tests: urinalysis, X-rays, blood panel, etc. The first test that came back indicated she had a urinary tract infection, and the ER doc was satisfied with that as the source of all of her problems. He started intravenous antibiotics, and was ready to let her go as soon as the meds finished.
Meanwhile, she was still flailing her left arm and leg about uncontrollably. Every time hospital staff tried to take her blood pressure, they would ask her to hold her arm still, and she kept flailing it.
“Can you hold your arm still?” they would ask.
“I am,” she would say, and look at her right arm, which was quite still. She seemed unaware that she had a left arm, and certainly unaware that it was fidgeting wildly.
As she waited, her left leg would also flail about, finding its way in between the metal supports in the bed rail. Then she would complain about sudden, sharp pain in her leg.
“Well, your leg is kind of wedged into the bed rail,” I would say.
And she would look to her right leg, which was fine. And I would work to move her left leg out of the bed rail, but it was a real struggle to get her to bend her knee or move her leg, and once she moved it, it would flail right back into some other awkward position.
This was all still very concerning, but the ER doc was still willing to let us go as soon as her IV antibiotics finished, and they would have sent her home, if the blood panel hadn’t come back in time. The next round of tests that came in showed an elevated troponin level, which is a heart enzyme that indicates you might have had, or be about to have, a heart attack. That elevated troponin level in an 87 year-old, warranted being admitted for a few days’ observation. Thank God.
So the next step was coordinating with her insurance to find a hospital they would let her be admitted to, and finding an available bed. The place insurance accepted was in Arlington, an hour’s drive away. And although the decision to keep her was made around 11pm, the actual transfer didn’t happen until about 9:30am the next morning, which meant that she napped on the ER bed and I parked uncomfortably on a plastic ER chair, waiting. Looking at it from hindsight, it’s easy to think hey, you had like 10 hours, you could have gone home and gotten a good night’s sleep and then met her at the new hospital in the morning. But, if you’ve ever been in a hospital, you know how this thing goes…ten more minutes...just a while longer…we’ll be right back…and they stretch it out and the next thing you know, you are bleary eyed and running on fumes and speaking incoherent nonsensical almost-sentences.
Once morning arrived, I found subs for all my Wednesday classes and watched the professionals load mom on the gurney to send her to Virginia Hospital Center in Arlington. I went home and took a nap, knowing that my sister was on her way from her home in Maryland, and would meet my mom at the new hospital.
After napping for a few hours, showering and eating some food, I eventually met everyone up at the hospital in Arlington that evening (Wednesday). At this point, mom’s hand and leg were still moving rather spastically. She still required a two-person assist to go to the bedside commode, which was only two steps away. The doctors were talking about letting her go home the next day or so.
And late that evening, more than 24 hours after her initial episode, the nurses started catching on to some of the neurological symptoms. Like the spastic movement of her left arm and leg, and the fact that she didn’t seem to be connecting the things her left arm was doing with her own actions. And at some point, someone asked her who the president was, and she said, “Donald Duck.”
Okay, in all honesty, my mom has always called Donald Trump Donald Duck, but the nurses didn’t know that, and it was enough for them to start to take things seriously. At this point, they were really thinking more about a concussion because she fell twice, but finally, someone asked to do an MRI. And at last, about 30 hours after her initial episode, the medical team discovered that she had had a stroke.
The disability that she is left with now is called left paresis/left neglect. It’s like her brain forgets the left side of her body exists. She has a hard time seeing out of her left eye or feeling anything going on on the left side, or controlling left arm and leg. They still move, but spastically and seemingly of their own volition. It’s a little bit like the Terminator’s robot arm, or Cousin It from the Addams Family.
She also suffers from a marked attention deficit disorder that she did not have before, and a short-term memory loss. Which means that if I explain some new information, it may not all get inside her head. And if it does, three out of five parts of it may fall right back out. In real world terms, this can mean that I might relay a simple story like, “I will be back on Tuesday at 7pm,” but she might forget which day I said I’d be back, which day it is today, and at what time I said I would be back. She also has a hard time with telling time. So the 7pm is rather irrelevant.
Many members of my family, myself included, suffer from anxiety and depression from time to time. Dealing with short-term memory loss and a sudden new disability really don’t improve your stress and mood levels, and neither does the lack of sleep that she is currently experiencing.
Three weeks have passed since her stroke. She has made great physical improvements. She can walk very short distances with assistance. She needs help to do many activities of daily living (ever tried opening a wrapper or putting on a sock with one hand?), but she delights in guests and telling stories, and loves to talk and visit with people.
She will be released from the actue rehab where she has been staying on Nov. 28 (tomorrow, as I write this). She will require 24-hour care and supervision. She can’t move from one location to another without help at this point. Initially, I felt that the hospital and the insurance gave us zero assistance in either planning for her return home or helping us find another alternative that would work with her insurance.
My one previous conversation with the case manager went something like this
Case manager: We understand that you live with Mrs. Cox, is that correct?
Me: Yes, that’s correct.
Case manager: Ok, so there is someone in the house. She will need 24-hour care when she is released, so we need to know that there’s someone there.
Me: Well, I live there, but…
Case manager: Ok, great. Thanks.
I live there, but I work, and I own a small business, and I am supposed to be trying to promote that business, and I travel from time to time, and I also have to sleep now and again, and maybe I might want to take a shower every so often myself…how do I get help? These were all questions that went unanswered.
That is, until Monday (yesterday), when I had a mini-meltdown during my family training session. Family training is when I was supposed to learn how to take her to the bathroom, give her a shower, and help her up and down stairs. Never underestimate the power of a good nervous breakdown. I shed tears in Occupational Therapy. By the end of the day, the case manager had come in to visit with us. By morning, we had a list of sub-acute rehabs, and within 12 hours of my meltdown, we had selected a sub-acute facility.
I hope things go well at the new place. In the meantime, the point of my writing this is just to share a little more information with my friends about what’s been going on in my life for the past three weeks. If you haven’t seen me, I’ve pretty much been at the hospital, working, or sleeping. I try to get out and dance when I can, because I feel so much better when I do, but the hospital drains the energy out of me. Once I convince myself to actually get out and into a dance space, I draw energy off of the music and the other people, so I know I really should get out more often.
My other purpose in writing is like a public service announcement. If you’ve ever done CPR/First Aid training, and learned about strokes or heart attacks, and you have learned all those signs and symptoms, then you have learned that the essence of first aid these days is to call 9-1-1 as soon as possible when something is wrong. Yes, do that. But in addition to that, when you know something is wrong with someone you love, don’t just let it go. I could have let the EMTs go, and just leave mom at home after she fell twice and couldn’t see her left side. The ER doc would have been happy to just let her go with a diagnosis of a urinary tract infection. If we hadn’t kept pointing out weird neuro symptoms, no one would have tried to do an MRI. It is infuriating that no medical professional thought to do it when we first came into the ER—I mean, 87 year old with high blood pressure who said she hadn’t taken blood pressure medication for four days…big tip-off…but the point is, when you know something is wrong, keep telling others and make them listen. If it’s a stroke, every moment can make a difference.