CJD and Me: When a Daughter Loses a Mother

Mom and me on my 5th birthday, 1987

Get through that first year. Get through the first birthday, the first Christmas, the first winter and the first anniversary of the thing. Once you get through that first year, the rest of the years aren’t so bad. It will all be okay.

At least that’s what I tell myself. Results may vary.

Being an only child is practice in preparing for death and knowing that one day you’ll be left alone. It sounds extreme, but I’ve been preparing for the death of my parents since I was a child. I’ve spent my life mentally bracing myself for the inevitable.

Dark? Certainly. But the fact always remained: I didn’t know when and I didn’t know how, but I knew that one day my parents would be gone and it would all be up to me…whatever it is. Like being the next in line for some royal throne. I used to fret over losing my parents. I used to wonder how one gets through such a thing. How do you survive something so life altering?

My mother’s illness started with a whimper in mid-2012. Mom had always been pretty quick on the draw- she knew the most obscure trivia, a skill that was exhibited time and again during games of Trivial Pursuit and Jeopardy. She always had a pithy remark or perfectly timed comment in casual conversation. She remembered . She even had various html codes memorized for different internet message boards that she liked to frequent. But then she began forgetting.

At first it was a struggle for the right word, but then it became bigger. She would forget where she left things, even though they were where she had always put them. She would forget conversations and names and just chalk it up to old age.

Deep down, I think that she knew something was wrong but she just brushed it aside and left it for another day. Deep down, I knew something was wrong too, but I was happy to join mom in sweeping it under the rug.

I first became alarmed when mom not only started forgetting things, but she became confused in other ways. A remote control would find its way into the refrigerator. She would forget that she had eaten or that she had showered. She forgot how to turn on the television. She forgot how to brush her teeth. She would tell me that my father had gone off to the store with my brother, who didn’t exist.

She once told me a story about a friendship she shared with Annette Funicello, after she saw the news that she had passed away. When I showed confusion about her new behaviors, that was mom’s cue to tell me she was just kidding. Inside, I was on fire with worry, not only about what was happening to my mom, but what our future held. Outside, I was keeping a brave face and sticking with our, “let’s take it as it comes” attitude.

For months she refused to go to the doctor. Mom hated doctors to begin with, and she sure as hell wasn’t going to see one now, just to find out that something was wrong. Permanently wrong. So dad and I rallied together and did the best we could and just took care of her in any way she needed.

Months passed and the situation only got worse. Mom began repeating herself; mumbling phrases, words, and number sequences over and over, Rain Man style, as some sort of comfort mechanism. She would pace the house and rarely slept, confused about what time of day it was or what she was supposed to be doing. Getting her to regularly eat became a challenge. Even so, during these instances, I was thankful that mom was still capable of some conversation, even if it was limited and I had to over-explain things before she “got it.” At least I still had that.

In the meantime, I was doing my own research- Googling everything from “brain cancer” to “Alzheimer’s symptoms”, trying to come up with some answers. I would wake up in the middle of the night and search for a list of brain tumor symptoms and how long a person with dementia could live.

Questions like, “What is Lewy Body Dementia?” and “What are the symptoms of a stroke?” lead to hours of reading, trying to find an answer.

“Does lack of sleep trigger dementia?”

Mom was never a great sleeper. Could that be it? I was grasping at straws, drowning in a sea of medical jargon and self-diagnosis.

Mom, age 19

Reality hit me in April, 2013- it was then that the conversations ended. I would try, with all of my might, to explain things to mom, but she just couldn’t follow me. I wanted her to converse with me; I wanted her feedback, but nothing. I was devastated. It was then that the real reality of this entire situation hit me: my mom, as I knew her, was gone.

No more stories about her childhood with my grandmother. No more anecdotes about my own childhood, that only a mother knows. Just like that it was all gone and with it, a part of my history and my life.

It was then that I pep talked myself into preparing for the worst. I spoke to myself, in my own head, like I was six-years-old. I promised that little girl that it was all going to be okay and that we were going to get through this. I knew the only way I was going to mentally survive was by being my own best friend. I knew that nobody else would understand.

I thought that my self-pep talks were working but, at the same time, I was spiraling into my own depression- trying to cope with losing my mother and not knowing what each day would hold. I internalized much of it, not wanting to burden others with my worrying thoughts, and pushed anyone away who tried to help. For better or worse, I was determined to wallow in my own misery and drown myself in sadness, if need be. It wasn’t until the smoke had cleared that I realized I had been distancing myself from the inevitable, rather than facing the truth of what was.

It all progressed, as these things do. By late summer 2013, Mom had lost who she was completely and depended on my father day and night. There were times that I feared losing the both of them- my mother to oblivion of a mystery disease and my father to pure stress.

We were finally able to get mom to some doctors and, after meeting with a few of them, we finally got a diagnosis- Creutzfeldt-Jakob Disease (CJD); a nasty little prion disease that changes the brain and makes you not you. According to the National Institute of Neurological Disorders and Stroke, CJD is a rare, degenerative, fatal brain disorder. It affects about one person in every one million per year worldwide; in the United States there are about 350 cases per year.

An internet search produces results that reiterate over and over how rare it is. Most people have never even heard of it and likely never will, but it’s very much become a part of my reality. Long story short: it’s a fatal disease and there’s no cure. All they could do for mom was make her comfortable. She went into hospice soon after her diagnosis, and passed away on February 23, 2014.

CJD can’t be definitively diagnosed until after death, and mom’s autopsy told us that she had the sporadic CJD. This means that it wasn’t passed down through her genes and she didn’t acquire it through a medical procedure or something she ate. In layman’s terms: it just happened and there’s no real explanation as to why.

Even though mom had the sporadic version of the disease, CJD still remains a mystery. So much so that I can’t be a blood or organ donor. My children probably won’t be able to be donors, either. Research is being done to find some sort of treatment, or even a cure, but these things take time. Anyone who has ever suffered from a chronic ailment, or loved someone who has, could tell you how frustrating it can be waiting on the scientists to discover the magic elixir (for lack of a better description) that will make it all better.

Throughout this process, the CJD foundation was amazing, sending us as much information as possible about the disease and offering constant support. They are working hard and making strides in their research, so maybe one day there will be treatment for this nightmare of a disease.

Mom, age 6

In the years since, I’ve learned to live with the pain of the loss of my mother, even though there are moments that are so unbearable I can barely look them in the eye. I’m good at putting on a brave face, but nights are sometimes hard. The void that my mother has left inside of me lurks. I have a bad habit of lamenting the moments that I’ll never get to share with mom, even though I know that it doesn’t do any good to dwell on things of that nature. Instead of wallowing in sorrow, I try to focus on the things we shared.

She liked to write and I think she would get a kick out of the fact that I do a lot more writing now. She would have turned 70 two years ago, and I wish we could have done something big to celebrate, even though big celebrations weren’t her style.

Being an only child is a practice in isolation and losing a parent to a rare disease is isolating even further, but you aren’t alone. I had spent my entire existence preparing for the life-defining, earth-shattering moment of parental loss and I survived. I managed to build up enough of a fortress so that, when I was hit with the “mom death” bomb, it left me a little cracked, but not broken. My foundation shook, but it didn’t collapse.

I’m not the same person I was before my mom died. I’m not the kid who skated through life somehow avoiding tragedy at every turn. Most would say “blessed”; I would say “more blessed than should be allowed”. I never knew true anguish before I was 31 years old. I never knew what it meant to wander.

When mom went into the hospital for the last time, she was in a holding room, waiting for an actual room to open up, where she would be staying. My father had gone to tend to my grandmother, who was also gravely ill at the time, and it was just me and mom together. Hit with the gravity of what was in front of me, I started to cry.

Concerned, mom asked, “What’s wrong?” I immediately felt guilty for crying in front of my extremely sick mother and said, “I’m just worried.”

Then she said, “It’s all going to be okay.” Just like that- clear as a bell.

It was the first real back and forth I had had with my mother in 7 months. It was a gift. It was the last conversation I had with the woman who gave me life and raised me the best way she knew. It was her goodbye.

The saying goes, “You can never go home again.” There should be a “but” in there…

“You can never go home again, but you’ll find a new home. You’ll put down roots and you’ll flourish and you’ll survive. You’re stronger than you realize and it’s all going to be okay.”

Marielle Songy is a writer and journalist living in New Orleans. More of her work can be found at www.mariellesongy.com

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