The Long, Slow Train to Crazytown

The Long, Slow Train to Crazytown

It begins not with a bang…     but a whisper

Clara began to deteriorate shortly before her 80th birthday.  Living on her own was no longer possible and she went to live with her youngest daughter. When she attacked my uncle with a telephone.. well, that was that, and decisions had to be made for more consistent care capable in dealing with dementia.

Evelyn was diabetic, and Evelyn loved sugar. There was never a time that I visited that there wasn’t a freshly baked cake.. or a fridge full of Dr. Pepper’s.  Throughout her later years, Jane constantly worked on her diet, delivered healthy meals, removed the stashed Ho Ho’s and Little Debbies, and replaced the sugar laden soft drinks with diet versions. The dementia set in anyway and worsened throughout her journey into more specialized care facilities. Her life ended in an Alzheimer’s ward at a nursing home even though her diagnosis was diabetic dementia.

At 70, Charles developed a toxic reaction to corn. Corn, corn starch, corn by-products and additives, corn sugars and protein extenders – minute amounts created a minefield of confusion and disorientation. It screwed with his equilibrium and thought processes; taking up to 3 days to clear the fog from his mind. It became commonplace to scour the ingredient lists to find offending compounds, and to recognize the beginnings of symptoms when we missed something.

Three years ago, Jane had her second heart attack and, as a bonus, a stroke as a result of the procedure. It left her needing some assistance and I stepped in to help.

I’m going to stop for a moment and say – I am not a medical professional and I have no training in the field other than first aid. I have nutritional and culinary training, but I am not a registered dietitian. What follows are our own tests and trials, and should not be construed as the gospel in anyone else’s case. Every individual has different medical,  dietary needs and concerns. If you feel you may fall into what comes next, have a frank conversation with your healthcare provider.

I expected a certain amount of convalescing after her final procedure. But 6 months after her last stent, she was still sleeping 18 hours a day… and I knew that couldn’t be normal. Her doctors listened and nodded when I expressed my worries, but offered no real suggestions. Jane was listless, fatigued and depressed.

Frustrated, I sat down and poured through the medications she was on: Of the 6 prescribed medications, 5 had listlessness, fatigue, depression, (one had uncontrolled weight gain) as documented side effects. And after a long discussion with her primary care physician, we weaned her off everything except her main blood pressure medication. Jane began to improve rapidly.

Two months later, the narcolepsy began. It started quietly with her dropping off to sleep when a commercial came on, but quickly progressed to her falling asleep whenever conversation lagged or if someone changed the subject, or if she stopped talking to think of a word. She was tested for oxygen deprivation and sleep apnea, but she was perfectly healthy there. Within 6 months the narcolepsy faded, and once again we were on the road to recovery.

Buy your tickets and get on board.

With an alert, awake Jane came something much, much worse.  She began to mumble. What I initially thought was some simple addle-mindedness from weaning her off her meds was quickly put to rest – the mumbling was beginning to coalesce into words. We’d be watching something on tv, Jane would look over and say,


“A wolf?”

“No… not wolf” she’d think a moment, compose her thoughts, gesture with her hands and say, “Du-Woof!!” emphatically. This exchange would go back and forth until I’d step over to her and touch her arm. She’d come to and there would be no recollection of du-woof, or our conversation.

Du-Woof lived with us for about a month with increasing frequency. Towards the end, I was getting up and touching her ever 5 minutes or so – so I devised a trick to snap her out of it without getting out of my chair – I’d make her laugh. I’d position my hands like goggles over my eyes and wiggle my fingers…. it worked. I don’t know why it did… or why I even decided that would work… but it did. and for a month it made our lives easier.

Upgrading to 1st Class

For brevity’s sake, for Jane’s dignity, and for my own sanity I won’t give you a day-by-day retelling… although I could, and you would sit slack-jawed in disbelief.

It was bad.

It was scary.

And, even though I had dealt with mental illness in someone I cared about for several years, I was completely unprepared for what came next.

Jane appeared to  develop Dissociative Identity Disorder (a split personality). She was Jane… at about 3 years old. She didn’t like me very much, she absolutely hated “the Other One” (adult Jane), and she whines…. constantly.. when she’s in an episode.

The Dining Car

Jane and I had been looking for the causes of the episodes since they first began. MRI / CAT scan showed nothing. Her heart was healthy, and although she’s a little high on the sugar scale, she isn’t diabetic. So I started with her intake of food.

You have to understand, Jane loves chocolate – but she’s severely allergic to chocolate – as in call the ambulance and maybe they’d get to her in time. Acute respiratory failure – so I’m sensitive to helping her stem the cravings for it when they hit. Peanuts were my go-to for those times when she really had to have chocolate. Peanut butter calmed the cravings, fresh roasted peanuts were an easy- healthy snack, and a PayDay  caramel bar was a treat for her.

When we began looking at triggers – and remembering that CORN would give my dad near Alzheimer symptoms, I dropped off the peanuts from her diet.  It was a marked improvement. we were elated that the every 15 minute episodes had stopped. Even if we were having sporadic episodes, we finally felt that we had a handle on what was causing the splits.

As of date, I have a numbing list of things and places Jane can’t eat. Here’s the list:

Peanuts – Peanut Butter / Flour / Nuts / Oil (and that means no Chik Fila)

Sunflower – Nut and Oil

Safflower Oil

Flaxseed – Nut/ Flour/Oil

Soybean – Oil (so far this is the only item we have tested. Sadly, the only way to check something is to give her increasing portions of it until it causes a reaction.) Mayonnaise / Most Salad Dressings / All Chips, Crackers, Cookies / Most (99%) Prepared Foods

Tree Nuts – Walnuts (Black & English), Pecans, Almonds, Pistachios, Hazel Nuts

Food Establishments – All, except Captain D’s (they use Beef Fat) As for full service restaurants, it requires me to make a trip to the kitchen and physically read the ingredients of their “Vegetable Oil” in order to be certain.

Currently, we’re cooking with less oil. But when it’s needed we use Canola Oil, Cultured Butter or Lard.

The Observation Deck

So, what exactly is happening to her? We’re not sure and my endless hours on the internet talking to professionals, or meetings with her primary physician are even less concrete. What we do know is that when a episode hits –  her blood pressure crashes and she gets mind-numbing headaches… this triggers the episode.

Sinus pressure can cause an episode, so can anything connected to ears, eyes, or nose.

Some Vitamin supplements have adverse effects; Vitamin D causes her to forget how to form words or speak.

Over exertion can cause minute episodes until she can get rested.

Miles and miles of track…

So… is she 100%? No, we’re still on that train, but we’re getting better at recognizing the symptoms. We’re better at managing the episodes and we’ve both have accepted that we’ll always find some new trigger to add to the list. But the good days are getting more frequent. And it’s days, like today  when there are no episodes, that we can breathe a little easier and the train ride doesn’t seem so bad at all.

I find myself looking out the window and hoping to see that sign

“Leaving Crazytown, Rest Stop Next Junction”

8 thoughts on “The Long, Slow Train to Crazytown

  1. What a ride, Toby and a challenging one at that. Your sharing here has highlighted the difficulties and frustrations faced by a care giver. You are doing a great job though and it is my hope that you and Jane can finally get off that train even for a little while. As always, I enjoy what you write.

  2. Make certain you have someplace to unload your own stress, or you’ll be buying your own ticket to an unwanted destination, as well. I’m glad to know things are improving. With my Mom, there was never any improvement, just faster or slower decline. At least Jane has you, and gets to live in her own house.

  3. Hey, Toby — I’d heard some of this story but didn’t realize how pervasive the episodes were. You are as fine a human being as I’d always suspected. Good luck to you and Jane with this miserable mystery.

  4. Toby, You are one of the most creative writers! I hope you’re working on a book so we can read more of your creativeness. As for Jane, she is extremely lucky to have you conducting her train ride! Blessings to you both for a healthy Christmas and New Year. Kimberly

  5. Wow. It’s always hard to find words to say – so much is cliche. What a hard road you’re walking, and how lucky Jane is to have you with her…and that you have each other. Blessing, best of luck. I’m sure there’s a rest stop ahead somewhere.

  6. Wow. It’s so hard to know where to turn and what is and isn’t safe to eat as it is, and then add all the allergens to the mix. You are doing a great thing, helping Jane as you do. I hope the answers start to become more clear and life eases for you both.

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