CHARLOTTE, NC: When you have ALS, there is a need for fore-thought. To think ahead of any potential situation. On both the part of the patient and the ALS caregiver.
There’s a wonderful scene in the classic comedy spoof Airplane (1980) when a flight attendant borrows a guitar from a nun. With all good intentions, she starts to sing River of Jordan to Lisa Davis. Davis is a young passenger who is flying with an intravenous tube in her arm.
In the process of doing a good deed, the flight attendant gets carried away with her singing. As do the passengers, including Lisa’s mother. At one point during the song, the stewardess swings the guitar around, accidentally jerking the tube from the young patient’s arm, leaving her gasping for air while frantically pleading with her fingers to re-insert her life-support system.
Everyone, other than Lisa and the viewing audience, is completely oblivious to her plight as Lisa’s eyes roll back in her head and her cheeks suck inwardly in desperation. Of course, how she was getting oxygen intravenously is left to comedic interpretation.
While the description may not sound as humorous as the scene in the film, by this point in the show it has become just another wacky idea played for laughs.
Comedy in real life
At the risk of sounding ungrateful and/or unappreciative, such incidents do occur rather frequently for patients dealing with ALS. At that point, the humor fades and reality takes over.
Lest anyone think this is an indictment or complaint about the overwhelming burdens placed upon non-professional caregivers, that is absolutely the furthest thing from the truth. The care given by spouses, relatives, and friends who voluntarily take it upon themselves to have their own lives disrupted out of their own dedication for the patient is unmeasurable.
What it does mean, however, is that there needs to be some meaningful understanding between both the patient and the amateur caregiver if they want to minimize frustrations and disputes. It is an absolute requirement if you want to retain peace and harmony within your family.
In a world where multi-tasking is the norm, caregivers must understand that quality of care when dealing with ALS is directly proportional to the limits they impose on trying to do too many things at once.
ALS does not lend itself to multitasking. Rather it requires intense focus in order to adjust properly.
If that sounds selfish on the part of the patient, it probably is, but if both patient and caregiver focus on the situation from the outset, most of the other potential problems will either be eliminated or, at the very least, minimized.
For example, any task should be complete before the ALS caregiver leaves the room.
If loose ends remain, chances are good that the caregiver’s routine will be interrupted more than once at a later time, and typically, when it is least convenient.
Coordinating the patient with the caregiver’s schedule
If I am working on a story when my wife needs to run an errand, it is essential that we coordinate an approximation of how long she will be away. Since I am no longer ambulatory, if I estimate that I will finish before she returns, I may want to have easy access to the television remote. Otherwise, I might find myself sitting for a long time with nothing to do.
When a patient calls for assistance to use the bathroom, it is best to respond immediately.
Incontinence is a frequent symptom of ALS. When the ALS caregiver dallies, the time spent on clean-up will be far less pleasant than an immediate response.
Eating can be another major inconvenience for patient and ALS caregiver
As ALS progresses, swallowing will eventually become increasingly difficult. Add in the annoyance of sporadic bouts of coughing, and eating can become an unanticipated challenge for both parties. For starters, if the patient is unable to feed himself, then someone else must assist.
Regardless of how hard you try, either the feeder’s food or the patient’s is going to get cold in the process.
Tips for dining with ALS
If you are in a restaurant, ask your server to bring out the second dish a little later so that one person can finish eating before the other begins.
Over time, patients and ALS caregiver will learn which particular foods are the easiest to consume.
Fried foods, for example, can create problems for some people. Or biscuits or fresh bread. Sometimes crispy toast is a better choice. The keys, however, in eating are timing and, again, focus. This is an area where the healthy caregiver has absolutely no frame of reference whatsoever to the patient.
Some foods require less chewing than others, while other factors can include the size of the bite or the temperature of the food.
Healthy people do not relate because they eat according to their own rhythm.
- If a mouthful of food is too hot, the healthy person can quickly reach a sip of water or tea to alleviate the problem. Not so if you have ALS and require a feeder.
- When the roof of the ALS patient’s mouth is being seared to shreds by hot cheese on a pizza, they can instantly become that young girl in Airplane. First, there is no way for them to reach for a cold drink. And if everyone else is chatting, those few seconds of flaming hell can seem like an eternity.
- When the feeder has no one to distract them, their personal feeding pace tends to quicken. This can lead to distress of the patient who could easily be two or three bites behind.
Left waiting for Godot
The opposite is often the case when the feeder has someone else with whom to converse. Many times they will stab some tempting morsel and begin to guide it to the patient’s mouth. Only to let the food dangle temptingly on the fork in front of the patient until the ALS caregiver attention returns to the task.
Often I have found myself awaiting the completion of a simple task that would never have emerged when I was independent because I would have taken care or it myself right away. The difficulty to react with ALS lies in not knowing how long the interim will be.
With a professional ALS caregiver, such problems are often non-existent because they are paid to provide undistracted care and undivided attention when they are on duty.
In the world of ALS, everything is a compromise. The best advice is to communicate at all costs.
About the Author: Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up