Sunday, December 13, 2015

"There's something wrong with your mother."

On Thursday of this week I received an Amazon notification about the delivery of one of my christmas gifts. The notice mentioned it was delivered Wednesday. I called my mother to ask if it had arrived, and she said yes, and that she wrapped it and I can't have it until Christmas. I reminded her that people often steal Amazon boxes so that in the future she should confirm with me that we got what we ordered.

Around 2:30 pm I see that I missed a call on my cell phone, from the house (our house) and that my mother had left a message. I took the message and it was my mother's friend Linda. She said to call her at the house, and she was with my mother and something was wrong. I immediately called her, my mother answered and sounded fine, and I asked what was going on, and she said she didn't know. Linda took the phone and she said my mother was repeating herself, confused, and that she thought something was wrong. I left work immediately.

I got home about 45 minutes later. Taking public transport while crying is always a joy. But when you're crying in public the reality that you're crying in public is usually the least of your worries.

My initial reaction was devastation, and the immediate assumption was that she had had a stroke. So, my initial conclusion was that my mother, as I knew her, was gone. I tried to stay calm, to avoid having a panic attack, but it was work. My mind would race to worst-case-scenarios and possible ways things would change. Will she recognize me? Will she be frightened? Is my mother gone? Will I have to sell her house? I don't want this responsibility... All of this while staring out the window of a city bus.

I would be omitting the most primal reaction I had if I didn't mention the initial gasp and sob, while thinking "I don't want to be alone." It's difficult to touch back on now - since it's passed - but I felt like a child. I felt helpless and afraid and could barely think.

I got home and Linda explained to me that my mother didn't remember plans they had made for lunch, and then when Linda called her to make new plans, she forgot those as well. When they spoke on the phone, Linda said something was wrong and came over. That's when she called me. When I walked in, I was distraught and trying my best not to cry.

I told her I was going to take her to the hospital, she seemed slightly worried, and almost childlike, but she recognized me and trusted me. She went upstairs to get a sweater, I got her purse, and as we left the house she noticed a sold sign and asked which of our neighbours had sold their house, and where he was moving. It was my first experience with seeing her amnesia / memory loss. Our neighbour had sold months ago and was moving in with his girlfriend. She knew this, and it has been months in the making, so this pointed me to thinking she had lost months of short-term memory.

The drive was traumatizing. It was around 4 pm, traffic hour and I just wanted to get to a hospital as fast as I could.  The nearly 30-minute drive was spend answering my mother's questions on loop:

"Where are we going?"
"The hospital."
"Who called you?"
"Linda."
"Linda called you? How did she get your number?"
"You gave have it to her, she called from the house."
"Linda was at the house?"
"Yes."
"How did she know to call you?"
"You guys had lunch plans you didn't go to."
"We did?"
"Yes."
"And I didn't show up?" "No, and she called you, and you forgot a second time."
"I did?" "Yes, so she came over."
"I don't remember any of that." "I know, that's why we're going to the hospital."
"I must have scared the shit out of Linda."
"Well, she was worried."
"Oh okay, good for her then."
"We just want to make sure everything is okay."
"The last thing you need is a loopy mother."
"You're not loopy - you're fine, you just don't remember."

I was just focused on answering her questions, that seemed to be on a minute-or-so loop. I was trying not to sob, and trying to be as present as possible since I was also driving.We got into a patterned dialogue, where my answers soothed her and being able to comfort my mother helped me calm down.

Once we got to the hospital, I parked, and we waked into the emergency room. Triage asked a list of questions directly to my mother, she was unable to name the month or year, she said November, and "the 1990's." She wasn't able to tell us what she had done that day, or the night before (dinner with friends) or earlier in that week (she was at my brother's house, babysitting). Triage gave us a priority 3, on 5. Once passed through triage, I texted my brother.








He showed up about an hour later. Things changed a little when he got there. He doesn't like hospitals. He spent the first month of my nephew Nathan's life in the hospital due to some type of intestinal necrosis. And he was with my mother in the hospital when my father died - so he had trouble being in the E.R and would often go outside or go take a walk. 

My mom was often distracted by her worry for him. She often said, "poor Nick" and would fidget around. 




I also felt a weird type of comfort by just answering her questions. She was nervous and when I answered her questions, it reassured her. We got into an almost song-like loop. Repetition. She'd loop around every minute or so, and start asking the same questions. Concerned E.R. neighbours would give me knowing looks, and my brother would often get irritated and leave. I think he found it difficult.

After answering the same questions a few times, I came to know which answers reassured her the most, and so I stuck to those ones. 

We eventually made it to a doctor, who was surprisingly an anglophone, and who ordered a scan and an x-ray, and who did some blood and urine tests. 

We got to the E.R around 4 or 4:30, and my brother showed up around 6. Progressively, around 8 or 9 she started remembering bits and pieces she didn't remember earlier in the night. It was encouraging, and it dulled some of the panic my brother and I were feeling.

We saw the attending doctor around 11:30 pm, and he said all of her tests looked good, and that it seemed, to him, like Transient Global Amnesia, and that we'd need to confirm with the neurologist the following morning. He said to go home, and get some sleep, and that, in all likelihood my mother would wake up with additional memories the next morning. 

We got home around 12:30 am and my brother and I were totally bushed. My brother looked like a zombie and I had lost my voice from talking on loop / repeating all the answers to the questions my mother had been asking. 

We kept asking her to go to bed, and she kept saying, "I want to watch TV!" and then "Holy shit it's 12:30!" so after a few rounds of that she made her way to bed. My brother said his head hit the pillow and he passed out. I did the same. 

The following morning I could hear pitter-patter feet and came upstairs (I'm a basement dweller) to my brother sitting in the living room. He said he woke up my mom and she remembered his being here. She made her way downstairs and we all sat around and asked her questions to see what she remembered. She remembered being in the hospital, and had fuzzy bits, with a large whole of about 6 to 8 hours. BUT, she did remember the hospital, and driving home, and did have bits of memory she did not have the previous day. It was an encouraging start to the day. She said she only fell asleep around 4 am, and was significantly more nervous, now that she was fully aware of her memory loss and of her need for medical care. 

We made our way to the hospital for a 9 am appointment with the neurologist. We were called in around 11 and met with a junior resident (maybe?), I'm not sure what his medical standing was, but he wasn't the guy. He was the student guy. He did a slew of visual tests, muscle tests, tested her reflexes and her ability to snap her fingers and stuff like that. He told us he'd call us in 30 minutes with the other doctor to go over their assessment, so we made our way to the cafeteria to eat a grilled cheese (my mother couldn't tell us what she'd eaten or drank for the last 24 hours so we wanted to make sure she ate something) and my brother and I weren't eating due to nerves. 

We went back up to the E.R and waited for 2 hours. So I made my way to the nurse's station and said the doctor said it would be 30 minutes. The nurses thought this was funny/infuriating and asked what ass of a doctor said that (I added the ass part, but it was implied). Turns out the doctor called us in the 20 minutes we were in the cafeteria. 

My brother, mother and I met with the junior doctor and the head of neurology and the doctor did his own little testing and poking and then asked us our accounts of the last 24 hours. We then talked about Transient Global Amnesia as a group - and my brother said that nearly everything mentioned in the Wikipedia article is spot-on to my mother's experience.
Transient global amnesia (TGA) is a neurological disorder whose key defining characteristic is a temporary but almost total disruption of short-term memory with a range of problems accessing older memories. A person in a state of TGA exhibits no other signs of impaired cognitive functioning but recalls only the last few moments of consciousness, as well as deeply encoded facts of the individual’s past, such as his or her own name. 
A person having an attack of TGA has almost no capacity to establish new memories, but generally appears otherwise mentally alert and lucid, possessing full knowledge of self-identity and identity of close family, and maintaining intact perceptual skills and a wide repertoire of complex learned behaviour. The individual simply cannot recall anything that happened outside the last few minutes, while memory for more temporally distant events may or may not be largely intact. The degree of amnesia is profound, and, in the interval during which the individual is aware of his or her condition, is often accompanied by anxiety. 
This onset of TGA is generally fairly rapid, and its duration varies but generally lasts between 2 to 8 hours. A person experiencing TGA typically has memory only of the past few minutes or less, and cannot retain new information beyond that period of time. One of its bizarre features is perseveration, in which the victim of an attack faithfully and methodically repeats statements or questions, complete with profoundly identical intonation and gestures "as if a fragment of a sound track is being repeatedly rerun."
The prognosis of "pure" TGA is very good. It does not affect mortality or morbidity and unlike earlier understanding of the condition, TGA is not a risk factor for stroke or ischemic disease. Rates of recurrence are variously reported, with one systematic calculation suggesting the rate is under 6% per year. TGA “is universally felt to be a benign condition which requires no further treatment other than reassurance to the patient and his or her family.” 
The doctor said that in most cases, the biggest "issue" is accepting that it's a freak, temporary condition, and that we can just go on "living our lives." We headed home, around 2:30 pm on Friday. It has been roughly 24 hours of total upset. 

My brother stayed with my mom while I did some groceries, and then he had to go back to his family since my nephews and sister-in-law were freaking out themselves. I stayed with my mom, and we were both exhausted and in shock. I made my mother a big dinner, and we ate and showered and went to bed. We both slept for 10-11 hours.

Saturday when I woke up I made my way to her room and crawled into her bed. I hugged her and took a selfie of us, with her hiding her face under her sheet, and me looking like a toddler who'd aged a million years. I sent the photo to my brother, who facetimed us with the grand-kids. We stayed in bed for a while. 

Once we got up, we went for breakfast and ran some errands, she asked me a few questions here and there, trying to fill in certain blanks, bit she was 90% normal. I had a dinner party with some of my best friends that night, so the plan was I'd go and update everyone, all at once. My mom and I were both still exhausted, so we took it easy and watched a movie. My dinner was only at 5pm, so we were able to rest most of the day. 

At one point when we were in her room, laying in her bed, I just kept saying how exhausted I was, but how weird I felt. I felt traumatized and unsure. It just doesn't make any sense to me, that she's back to normal. It was a 6-8 hour period where she didn't know the year, or what was going on, and it just scared the shit out of us, and now everything is fine. It just doesn't compute.

As mentioned in the Wikipedia article:
"The most important part of management after diagnosis is looking after the psychological needs of the patient and his or her relatives. Seeing a once competent and healthy partner, sibling or parent become incapable of remembering what was said only a minute ago is very distressing, and hence it is often the relatives who will require reassurance."
Yes.  

It's an absurd, fake-sounding happening. In the long trek back home (via public transit) I just felt like my life, as I knew it, was over, and that everything was about to get awful. 

The car ride was me internally catatonic, outwardly sobbing and answering questions, and just void of myself. I was doing the best to reassure my mother, and I was just doing my best to keep breathing. To keep my head straight. To try and make the right decisions in something that would no doubt come to define me life, and the life of mother and family. 

It's now Sunday. I'm exhausted. I spent most of the day sleeping and lazing around. At one point my
mother and I watched YouTube videos of baby orangutans for about 45 minutes. I fell sleep in her bed, and she came downstairs to watch television and eat the leftovers I brought her from the dinner party.

There were many moments of absurd levity throughout the 24 hour period. But those came when we were out of the woods. My mother often said "The last thing you need is a loopy Nan," and "If I'm a loopy Nan, I hope I'm a nice one and not a mean one." 

My father's mother has Alzheimer's, and lived with us when I was a child. My memories of her are sweet. I would go down into her room in my nightgown and sit on her in the rocking chair and she'd rock me. My mom tells me she'd steal my halloween candy and I'd get pissed. My brother remembers the darker, more traumatic side of Alzheimer's, as does my mother, so both of them had strong fears in that regard. My brother at one point said if it was Alzheimer's, to "shoot him in the head." 

At one point I jabbed that she was doing this "so I wouldn't move out," and she laughed. And a little bit later she made that joke back to me. Her recycling of my joke was one of the first examples of her remembering little bits and pieces. 

When we went for breakfast yesterday I said I still had Christmas gifts to get, and she asked for whom. 
"For you, mainly. And little things for my friends."
"Oh, you don't have to get me anything."
"For crying-out-loud Karen, you were just hospitalized. You think this is a good time to be cheap?"
"Well you don't have to."
"Well you like when I take you out on day-trips. So the E.R. counts then."
We laughed at that. She and I were able to laugh more so than my brother was. He'd get upset. 

Now it's 9:13 pm Sunday. It took two days to write this since I'm just so tired. I need to shower and get to bed so I can get through this week at work. 

I feel uneasy. I feel unsettled. I feel hazy. It feels too fucking lucky that my mom is fine. It feels like I'm waiting for the other shoe to drop - a weird fucking expression to use to describe how I feel this is too good a resolution for something I thought would leave me alone and devastated. 

I am grateful for the luck of it. I'm still in shock. I'm just confused by it. I feel like an orangutan 
who just watched a magic trick. I keep trying to make sense of it, but there is no sense to be made. No matter the illusion I'm still just a fucking ape trying to get the basics. 

This whole experience has thrown me. 

I've been thinking about my own health. Nothing stokes that more than visiting an Emergency Room. 

I've been thinking about the power of kindness. I was in such an empathetic space with my mother I was as kind and as helpful as I could be with the people in the hospital, and I felt it just changed the entire experience for my family and I. The energy changed. The people changed. 

I will try and be as healthy as I can, and as kind as I can, and then, it's fucking luck. 

Yes, it's fucking luck. But kindness matters. It matters in the in between. 

I'm totally disoriented, but I know kindness helps. 

And I know I'm very, very lucky.

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