New Adventures with ALS

by Jeff Lester on Tue, 2008-07-01 11:53

Expect the unexpected when your regular caregiver isn’t there

Jeff Lester
Author Jeff Lester’s daughter, Kelsey, is shown here helping out with his trach care. The family discovered communicating this and other vital procedures to the temporary nurses was not an easy task.

When you’ve been dealing with ALS for nearly 15 years, you assume you’ve dealt with everything new but, as with everything associated with this disease, you can be thrown a curve any time.

This particular curve was self inflicted, coming as a result of my nominating my wife, Lisa, for the “CVS Pharmacy/Good Morning America for All the Ways You Care” contest. Lisa was selected as a finalist in the contest, which meant she got to spend a weekend in New York City with our 12-year-old daughter, Kelsey.

National media/public relations firms don’t understand the planning involved in caring for someone in my condition (a quadriplegic on trach ventilation). We were notified that Lisa was a finalist less than a week before the trip, leaving us scrambling to cover the 24/7 nursing care that Lisa does everyday.

Further complicating matters was that the weekend of the trip was the same weekend we’d planned to move to a new town. Most of our stuff was moved or in boxes. And finally, this would be the first time, outside of hospitalizations, I would be alone with just a nurse for more than four hours — over 64 hours in all.

I learned some invaluable lessons. First and foremost, when you’re putting together a set of care instructions, you can’t be too detailed. The smallest oversight can make even the simplest task much more difficult than it normally would — or should — be.

For example, I need to take pills with sweet tea or juice, but definitely not water because of the swallowing issues caused by ALS and thin liquids. Even though this was stated specifically in the instructions, we didn’t define why this is important. Nurses still tried to give me pills with water, putting me in the position of having to purse my lips to avoid taking the pill. This in turn was misinterpreted by nurses who tried to force the pill in my mouth — which leads to the next critical point: communication.

I know some of you are thinking right about now: OK Jeff, there have been countless articles about communication methods and devices. Yes, there have been, so don’t become overconfident like I did and end up wishing you’d printed out a basic letter/yes-and-no chart (you’ve now been warned!!!).

But the communication I’m talking about here are physical cues.

It should be fully explained that people with ALS are cognitively aware and have their mental faculties, so if they do something like purse their lips, they’re not being obstinate, but rather sending a cue that something is wrong. Another physical cue I use is to smack my lips a couple of times to get someone’s attention. But if I continuously smack my lips, then I have a serious breathing issue. It’s important for new caregivers to understand this communication distinction, which can be life threatening if misinterpreted.

Misinterpretation of written instructions is something that surprised me (you wouldn’t think after all these years I would be, but I was). In my case, the situation involved draining water from my ventilator tubing. I use a heated-water ventilator humidifier, which has the drawback of allowing water to build up and slosh around in the vent tubing. The biggest concern when emptying the tubing is keeping water from getting into the lungs, which can cause serious problems. This was the viewpoint from which Lisa wrote the vent tube instructions to the nurses.

There was no way either of us could have anticipated that the nurses would misinterpret this to mean they should empty the tubing whenever they saw the slightest amount of humidity. The result of this frequent emptying — at least hourly as opposed to the normal once-or-twice-a-day-as-needed schedule — was that I began drying out, which can cause a whole host of other problems such as thickened secretions, necessitating more suctioning and causing more coughing and discomfort, and in the worst case, causing mucus plugs which can cut off your airway.

The moral here is: Try to read your instructions with an uninitiated eye for items that can be misinterpreted. Better yet, if time permits, have someone not familiar with your routine read and interpret the set of instructions.

The final tidbit that I learned from my weekend was “categorize!"

Lisa and I had come up with over four pages of written instructions for my care, but in our haste we failed to recognize a simple fact: It was over FOUR pages of instructions! For expediency’s sake, we should have inserted major headings, in order to eliminate problems like the nurses overlooking the essential information “only give pills with sweet tea or juice.”

I survived my weekend alone to tell this tale, but it would have been much better if we’d known these lessons beforehand. People with ALS and their caregiver(s) have developed a combination of personal shortcuts and language that can’t be easily translated by outsiders. For example, I prefer to sit in my recliner with one foot put about mid-thigh of my other leg. Occasionally I need to switch to the mirror position, which can be accomplished in seconds by either my wife or children when I say the word “switch.” This task at times took 15 to 30 minutes during my weekend with new nurses, and never achieved my normal level of comfort.

The simplest of things can make the difference between comfort and pain when you’re under the care of someone other than a loving and dedicated caregiver like my wife, Lisa, who’s been doing it for nearly 15 years. That’s why I nominated her for the Good Morning America caregiver honor, and how I ended up learning some new ALS life lessons. Hopefully my experience will help you avoid these potential pitfalls in the future. It’s funny how things happen when you’re living with ALS.

Jeff Lester, 41, of Lebanon, Mo., is a graduate student at the University of Michigan-Dearborn. He received an ALS diagnosis in 1993 and has used trach ventilation since 1997. He and Lisa have three daughters born after his ALS diagnosis. To learn more about Jeff visit To learn more about the caregiver contest, visit

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