A Grim Fairytale

No matter your role in someone's life, it's difficult to watch that person begin to decline. Often, in my personal trials, optimism has been the secret ingredient that flavors an otherwise bland or bitter situation, making it easier to swallow. As an SLP, it's difficult to be optimistic with a chronic or degenerative course of treatment. Some patients can recover nearly full capacity, others will maintain, while others decline. I suppose it's like anybody else in this world. We really are all terminal. But, our rate and level of capacity is as individual as our fingerprint. I've been working with a Dementia patient who we recently determined is slipping more decidedly into a more acute phase. Sometimes, it's like watching a child trapped in some unsettling fairytale. A grim divergence from the reality of family, friends, familiar routines. Losing independence.

Alzheimer's in Wonderland

Some days, the illogical ramblings reveal a mind that fell down a rabbit hole. She knows that there is reality, where order and reason govern. This nonsensical existence is in fact nonsense, but still remains reality. To her, my supervisor and I might as well be the Mad Hatter or the Catepillar, sitting there spouting ideas and notions, giving her exercises and memory aids. We might as well spread our pocket watches with jam and dip our saucers in tea. Or turn into butterflies.

Most days, at meal times, we find our Alice wandering the halls of the facility. Lost. She doesn't know where she's been, where she was going, or why she's even there. We stand at the nursing station, the crossroads of the facility, and debate about which path she was on to determine her destination. I point or escort her in the right direction for a short while, then with a Cheshire grin and a schedule to keep, I leave her to navigate the rest alone. Twenty minutes later, we meet, again. She's lost and confused, wants to go back to her room where it's familiar and secure, but doesn't know how to get there.


Oldie-locks and the Three Beverages

What would happen if Goldie was indecisive, not because she was a spoiled little girl, but because she suffered from some sort of amnesia? What if it were the same bowl of porridge three times, or the same bed three times? What if she simply didn't remember she liked it the first two times? That seems to be the case with my patient. Bring her a cup of cranberry juice. This one's too sour. This one's too sweet. Ooo, That's good. Same cup. Same juice. Three different responses. Offer her a plate of eggs and toast and it's like a meal time with a three year old. I don't think I'll liiike it. Oh, why don't you try a little and make sure you don't like it. Bite. Mmm. That's good stuff. Not to mention, as soon as she decides it's "good stuff," she's always trying to feed me, always wanting me to taste her food or drink. I decline with Oh, this one's yours. I've already had breakfast. You eat it first. I usually get called a chicken. Five minutes later, we rinse, lather, repeat.

Magic Porridge Pot of Ensure

One of the most critical safety concerns with dementia is not only getting lost, confused with medication, or leaving the stove on, it's forgetting about food. The first day I sat with my patient at breakfast, I noticed that she wasn't recognizing her food. Sure wish I knew what that was. Pancake. This stuff, well, it's just...bleh. Sausage and egg. Why don't you try some of your pancake? Oh--where've I got some of that? Try this stuff...that's your sausage. Well, I guess....mmm I like meat.

With a lack of orientation to meal schedules or being unable to recognize food on the plate, the risk of inadequate nutrition increases. My supervisor and I have developed the routine of stopping at the nurse's station and getting a cup of cranberry juice and a cup of Ensure to take to our patient. Especially when she's having a particularly strong dementia day. We employ different strategies to encourage her to drink. Hydration and calories are critical. The advantage of poor short term memory is that she doesn't remember that she thinks she doesn't like the drinks, can't recall that we've already given her two cups worth, and doesn't register that she was refusing to eat today. So, we keep topping off the cup. It's like the magic porridge pot--it keeps refilling because she doesn't know the magic words to make it stop. Everyday, no matter what she's feeling like, we bring drinks, the nurses send a calorie enhanced snack, and the CNA's bring juice and water. Our little magic porridge pot plot is just one way we're optimistically trying to keep her healthy and safe.

Each of these tales has a moral that can describe the harsh realities and the rewards of being an SLP. Maybe it will make you afraid of old age. Perhaps the moral is to make you appreciate the circumstances you enjoy now. Whatever moral you come away with, it's still hard to watch someone living through circumstances you can't change or control. Sometimes the hardest part is realizing that as much as you can do, it won't be enough. Sometimes you can really only do so much and then you, as the giver have reached the max potential of what you have to offer to that situation. But, no matter how long or short the plot, the moral of every story should show your character as unwavering, unfailing in fulfilling your role in someone else's life.