In the early 1990’s, I worked for a man who had a degenerative neuro-muscular disease. The disease eventually progressed to the point that at the time I met him, ( I think he was in his late 50’s?) he was using a manual wheelchair with a large “breathing machine” attached to it, because not only did most of his large muscles fail to work, but even the muscles that help the diaphragm pull air in and push air out of the lungs were barely there. The machine did this for him… pushing air into his lungs because he couldn’t take a breath on his own.
I became one of many personal-care attendants who helped him with every single aspect of daily living. We also were expected to follow house rules and *try* not to tread on the daily lives of other family members who were living there. Imagine having a loved one who requires nearly constant care, essentially having 2-3 strangers in and out of your home all day, every day.
This man and I became great friends. I would suspect that everyone who worked for him would echo this sentiment. He had a wicked sense of humor, an amazing intellect, and an ability to laugh at himself when it became obvious he was taking himself to seriously. He had a “New England” manner of speaking and a dry, dry sense of humor… often difficult to grasp because he had this big, distracting contraption coming out of his nose and over his head helping him to breathe in between his comments.
I worked for him for about 2 years, and toward the end of this stint he and a former worker concocted some whacked-out idea that we should just load up him, his equipment, and a couple more workers, and take off on a 10-day road trip to Yellowstone National Park. I was invited to be one of the attendants on this trip, and reluctantly accepted.
Have you ever noticed that when you feel that certain aspects of your life are out of your control, it becomes of the utmost importance to CONTROL WHAT YOU CAN? We used to poke fun at our friend for the manner in which he insisted that we use *this* coffeemug rather that *that*. Routine tasks had to be completed within a very specific timeline, there were lots and lots of rules.
When we packed for this Yellowstone trip, we were commanded to pack *TWO* of
every single piece of equipment that he required. Okay, we understood the need to an extent, but let me tell you that every item that went into the van, every checkup that went on under the van’s hood, and every detail; lodging, mileage, gas consumption, sightseeing stops, meal-times, etc. were overseen with utmost precision by our friend.
Hell, if you couldn’t even decide when to take a breath, wouldn’t you try to control everything else that you could? Anyway, the trip was a blast. We had an unbelievably good time, despite the fact that we were all crazy enough to load up a man who was essentially on life support into an old Econoline Ford Van and set off on a trip that would send us all through the National Forest, staying at different motels the whole way.
Accessibility and comfort varied greatly at these places, despite the careful checking that our friend had put into all of it, but we managed to work our way around just about every conceivable pitfall, including excessive snoring (wasn’t me) a very strange and vocal dream…(might have been me) an unexpected eruption at Old Faithful geyser, a van break-down in Montana, some bears, a pissed-off biker who didn’t understand why “we” moved his Harley out of the way of the van lift that he had thoughtlessly parked under, making it impossible for us or our friend to leave the scenic overlook we were visiting and yes, of course, the inevitable equipment malfunction of the breathing machine.
My memory of this is very clear in some ways, and cloudy in others, but as I recall we had just had some sort of mountainous adventure that entailed our friend, his wheelchair, breathing machine and backup battery to ride willy-nilly in the back of a pickup truck with the strongest (and certainly the most enthusiastic) of us three attendants. It was a successful maneuver, an excellent adventure, and afterward we had returned to the van and were headed down to some lodge for hot chocolate.
Suddenly something snapped on the tubing of the breathing machine, rendering it ineffective. Attendant #1 pulled the van over to the side of the road and began applying deep pressure to our friend's diaphragm to maintain some airflow. I and the other attendant proceeded to rip apart every bit of equipment in the back of the van to find the replacement hose or valve or whatever it was that had malfunctioned, and to replace it. This entire scene took maybe 30-45 seconds, but was scary as hell… you bet we were SOOO glad to have had the right equipment with us, because there was no way we’d have made it anywhere where appropriate help would have been available. Even an ambulance would not have been equipped, as a regular oxygen mask doesn’t have the force necessary to force air into lungs that are clamped down under such a weakened diaphragm.
The rest of the trip was eventful, but uneventful, thank goodness. What an experience. I moved on to another job and stopped working for this friend in the fall of that year. I often saw him around town and said hello, but I knew that ultimately I was replaced by new people who had so much to do with helping him to function and enjoy his life.
He died a couple of years later. Appropriately, it was another attendant who called me to tell me, and subsequently I called several former attendants myself to pass along the news. Many of us gathered and reflected on the life of our friend and what a strange and rewarding experience it had been to work for him and to be part of his and his families’ lives for whatever length of time each of us had.
Speculation on his “cause of death” abounded during this time and for a long time after. Of course his disease was the cause of his death. But there were questions as to whether or not he chose when to exit. My friend and I, (and many of the other attendants, I assume) had our share of deep and philosophical conversations while assisting him with washing his face or exercising his limbs before bed, or helping him dress in the morning. I recall talks about disability issues, about terminal illness, about end-of-life decisions.
And about death.
I am glad not to know how it all fell into place at the end. I am glad I wasn’t working for him on a day-to-day basis when it did happen. Despite of and because of the trials of his particular long-term illness and subsequent disability, he had lasting impact on many, many people. I told him once that if he had not gotten this illness and needed the extent of care that he did, that I would never have gotten to spend some great times with him, and I really would have missed out. What an odd thing to be grateful for, and he grinned when I told him that.
He probably said something sarcastic after that. He was an activist and advocate for people with disabilities, although it certainly wasn’t his first choice as a career… but circumstances sort of mitigated it. He liked to tell the old joke that some people believe that people who use wheelchairs want the whole damn world to be flat. He said that actually it would be nicer if everything was slightly downhill.
I hope that when his life did end that it was peaceful.
And I hope that he had as much control of it as he wanted.
Kansas Health Ethics Advance Directive Forms: