CHARLOTTE, NC, March 19, 2017 – The most difficult part of fighting ALS is not dealing with the disease, but caring for the person who has it. Caretakers are angels with double-halos who must not only remain calm but also fight the desire to lash out when the patient goes into frustration overdrive.
As days and weeks pass, victims learn to cope with the drip, drip, drip of daily disabilities. There are times when no matter how positive or how independent you are determined to be, the cumulative effect of doing the simplest of tasks can quickly turn into anger.
And that’s when those double-haloed angels step in.
Often the problem is purely a matter of lack of strength such as not being able to reach a car door to close it or the inability to reach a slot at a mailbox to drop off a letter.
Perhaps more frustrating is the loss of agility. Lifting a glass of water off a table often lead to spills. Eating without a bib can turn a plain blue shirt into some sort of odd Batik pattern. Papers drop on the floor as do pills, and picking them up presents a new set of challenges.
One thing is the fear of falling out of the chair and onto your head because there is no way to break the fall. That can often lead to a half-hour to 45-minutes of laying on the floor trying to figure out how to get to your feet.
The exercise is as mentally exhausting mentally as it is physically difficult.
So when there are shouts of anxiety from the potential of a looming incident, the caretaker must be at the ready to provide muscle, strength, and calmness all in the same brief span of time. The victim is not seeking sympathy so much as he just wants life to be normal again, knowing full well that that can no longer be an option.
Comedian Redd Foxx once said he had a friend who only had two regrets in his whole life, “One that he had to wake up to eat, and the other that he had to stop eating to sleep.” In a sense, ALS is much like that.
The best parts of the day, for me at least, are when I don’t have to attempt to lift anything or to move my arms. When I do not have to struggle with a glass or a knife, fork or spoon to get food to my mouth.
And my wife, that double-haloed angel, takes it all in stride. She prepares half-meals since I now get hungry but quickly lose my appetite at the hassle of eating.
Housework has doubled for her. Not that I was ever much help anyway, but now I am totally useless. No longer can I cut the grass, do the dishes, make a sandwich or any number of other minimal household tasks.
And yet, she greets each challenge with a smile and understanding. She rises early in the morning in case I need help getting dressed. She combs my hair to an acceptable level until I climb into the car and mess it up again. She anticipates my every move and needs like a great second baseman or shortstop preparing to turn an instantaneous double play.
I have never been a pill person. In fact, I have never spent a single night in a hospital. The thought of an overnight in a medical facility terrifies me more than ALS itself. Today, however, I take eight pills in the morning and six at night. About half the time several wind up on the floor due to lack of dexterity.
That’s when the angel appears at the door and picks them up.
Recent weeks have produced no dramatic changes of which I am aware. Most of the disability is confined to my arms though my hands remain strong. I am able to type and to grip things, but my reach is limited as is my range of motion.
I have become the ultimate “television clicker” with a newly discovered skill at changing channels in record time. The difficult part, of course, is finding something to watch.
Next Wednesday, I have an appointment at the Veteran’s Administration. Sometimes circumstances become a great ally as is the case with my service in the United States Marines in the mid-1960s.
As it turns out there was some sort of water contamination problem at Camp LeJeune during the time I was there, which may mean I qualify for some sort of disability compensation.
Given the current struggles that would be a godsend. In the meantime, however, I will continue to count on the angel who has been my partner for nearly 50 years, because she is handles everything better than anyone and always with a loving, caring smile.
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Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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