Journals from 2004 — Part 2

A tad more backstory…

At this point in time I was going through this blind as was most of the family and my mom’s doctors. I can’t emphasize enough that none of the doctors treating my mother at this point in October of 2004 had ever seen a case of CJD before. One family member was aware of my mom’s uncle’s death by “mad cow disease” — a misnomer — and our only reference point. But that person hadn’t come forward with the information yet. I also need to emphasize that my family of origin was quite dysfunctional, self included. I have always had a “do no harm but take no shit” personality, but it came roaring out at this point in time. I should also add that I am an only child and had no siblings to “share the burden” with in 2004.

Tuesday, October 5, 2004

I don’t know much more at this point. But it seems pretty certain my mom has multiple sclerosis (M.S.). I do know for sure that I’m not ready to take care of another person — period. Especially not an elderly parent. I’m working 46 hours a week plus college.

2020 Edit:

I go into detail here about working as managing editor at the college paper, trying to balance education, an internship, and work…I was spread thin but prioritized exercise and nutrition, so I did have some aspect of self-care happening. But I was terrified at having to fit “nurse” into the picture, an eventuality that actually didn’t happen. I was committed to my own success and didn’t want to be derailed from breaking the family cycle of poverty and dysfunction. I also lamented that I didn’t have much to give my struggling parents monetarily and didn’t have cooking skills to offer either. I was trying to figure out how to take care of myself and others — but coming up short. I specifically wrote, “I am not a better person than this.” I don’t want to include too much that isn’t specific to CJD, but I think it’s important to show how the experience turns lives upside down. It’s critical to show how family members are thrown into uncharted territory and caregiver roles, forced to make important decisions with little warning… But we’ll get into that later…

Sunday, October 10, 2004

My mom has been in the hospital since Friday night. Doctors are trying to find out what’s wrong with her, but they seem almost certain it’s multiple sclerosis. I’m calm. I’ve done this hospital thing recently with my best friend. (A cancer survivor).

My poor mom. She’s so tired, so weak. The shakes… She has no motor skills. She’s not allowed to get out of bed. (She was a fall risk). She doesn’t follow what’s going on. She doesn’t remember things so well. It’s so sad to watch and so strange.

2020 Edit:

I want to tell you about the night she went to the hospital. It was October 8, 2004. While I felt relieved someone had finally gotten her to the ER, it had been a very long day. I was getting up at 2:00 a.m. for work back then (an East Coast morning drive news wire shift). I would take a midday nap, hit the books, and then Arabic class — yes, on a Friday night.

But on that day, the midday nap didn’t happen. It was the last day I saw my mother in her home. She was unable to walk and carried a plastic bag around with her as she complained of nausea and dizziness. We were long past the E200K hallmark of persistent dry cough at this point. I estimate that cough lasted several weeks or maybe two months and I truly don’t believe that she was even aware she was coughing.

Back to 10/8/04… My mother had called me frantic at work that morning and asked me to take her to her doctor for an appointment at noon. So I did. We got there and they informed us her appoint was at noon — NEXT Friday. In that moment, I realized how much my mother had lost it. She didn’t know what day it was. She was off by a whole week. So they wouldn’t see her and I took her home.

I did try to lay down and snooze, but the phone rang and it was my mother’s doctor. They were concerned she was going to try and harm herself or take her own life; they had received a strange phone call from her that had led them to believe she was experiencing suicidal ideation (S.I.).

I had no idea when she had managed to make that phone call. Since they were so concerned, and since my mother had never had shown signs of S.I. in her life, they said they could fit her in and asked me to bring her right back to the office for the MRI she had wanted so badly.

By then, I was weirded out. She could hardly walk safely and I somehow managed to get her in and out of the MRI place. Our roles had flipped. I took her back home and she was anxious and angry. I don’t remember what she was going on about, but I do remember she was talking about it in circles and getting angrier with each telling of it. Between that and getting her appointment day wrong, I was beginning to wonder if we were dealing with Alzheimer’s Disease.

When I say she couldn’t walk, I didn’t know at the time how to describe her jerky muscle movements. I know now what I was witnessing was cerebellar ataxia. I also understand now that this was due to the fact that prions (misfolding proteins) were attacking her cerebellum. I was also witnessing myclonus — the wild jerking of her legs as she tried to walk is something I will never forget.

I couldn’t witness anyone having a seizure for years — whether in real life or in the movies. I had a full-blown panic attack watching the film “Hilary & Jackie,” in which a main character has M.S.

I eventually got past this and worked in a detox and sobering unit where I safely helped many clients through their detox-induced seizures. Witnessing CJD in my mom primed me to observe suffering without freaking out. These are skills you can’t teach and this did help me save some lives. I think this is worth mentioning because not everything is without purpose. Yes, it all may be horrendous. I get that. But the suffering wasn’t wasted.