Skip to main content

Living with ALS: Learning “Patient Patience” and dealing with “Ignorance”

Written By | Nov 18, 2019

CHARLOTTE, NC: At the risk of sounding petty or ungrateful, it has taken me a considerable amount of time to figure out one very important aspect of the ALS learning curve.  That is understanding the essence of caregiving. These are purely personal observations mind you, so as far as others are concerned they may not even be a factor in dealing with their own particular situations.

I sincerely want to emphasize that this is not intended as a criticism, but rather as a means of awareness for both sides of the wheelchair in an effort to make things more comfortable for everyone.

 “Learning Patient Patience and Battling Ignorance.”

To begin, I have come to learn that there are two basic types of caregiving: Professional and Unpaid Volunteers. (5 ways to reduce and manage caregiver resentiment)

The difference, for me at least, is quite significant, but it is also critical to comprehend those differences if sanity is to be maintained for patients and assistants alike. The primary difference is that a professional caregiver is paid to tend to the needs of the patient. On the surface that might sound simplistic, but it is actually quite easy to misconstrue if you don’t pay attention.

Professionals have one, and only one, consideration, the well-being of their client.

Therefore, as a rule, no matter how petty or insignificant a request from a patient may appear to an outsider, the professional stops everything they are doing to alleviate their patient’s problem quickly.

That is not necessarily the case for a volunteer, and here’s where things can get muddy for either side.

Living with ALS: Caregiver awareness and the importance of compromising

Patients must remember, first and foremost, that they no longer live in the same world as their healthy counterparts.

By the same token, caregiving volunteers must also recognize that the person they are assisting is totally dependent upon them for their aide.

Oftentimes it’s easy for both sides to forget these differences and that’s where “patient patience and ignorance” come into play.

Patients must be aware that their helpers live in a world of distractions

Phone calls, personal errands, interaction with other people and the like are all distractions for volunteer caregivers. When a patient’s nose starts to run and calls the professional, the pro comes quickly. The problem is resolved. Not necessarily so with the volunteer who may be in the middle of something else that is important to their own life.

Battling ALS with help from a double-haloed angel

That can create a delay, which now requires “patient patience.”

What may seem, or actually be, a pressing situation for the victim doesn’t always carry the same level of urgency for the healthy volunteer.

Something as simple as an aggravating itch in an unreachable location can be torture for the patient who is anxiously awaiting relief. Often the longer the delay, the greater the discomfort for the patient.

Most ALS victims are aware that their cries for aid seem small in the scheme of a daily routine.

The frustration for them lies in their lost independence which forces them to infringe upon the lives of others for such seemingly minor or unimportant interruptions. As for the “ignorance” part of my observations, I am referring to “being ignored” rather than to the “lack of knowledge.”

In this case, the volunteer may be in the process of assisting the patient and leave the room momentarily to take care of something else. All too often, however, they leave the scene to answer the phone or use the restroom. Unfortunately, their lives interrupt and they forget that they have left the patient sitting alone. Frequently in a less than ideal position, without the ability to alter their position.

Blessed are the meek and those that are caregivers to ALS victims

When a patient is “ignored” it magnifies frustrations on both sides. The victim becomes irritated because two additional minutes prior to the interruption would have saved 20 additional minutes of aggravation and waiting.

When the patient mentions this, however, the volunteer will often snap back because they feel unappreciated.

It’s a delicate balancing act that requires awareness and understanding by both parties.

When possible, the most workable solution has been to try to establish a routine.

During basic training at Parris Island, our Marine Corps drill instructor would often conclude a PT (physical training) session by making us run around the barracks.

The first morning we did three laps. After we finished our second lap the following day, there was a welcome sigh among the troops. It would all be over after one more trip around the building.

On that day, however, the DI decided that maybe three wasn’t enough. So we did seven laps instead. It was all part of a disciplinary mind game to teach us that there is no such thing as a routine in combat.

It works the opposite with ALS. The more routine the better for everyone involved. By establishing a set beginning, middle and end for each daily activity, both sides know what to expect and when.

Such procedures can go a long way toward reducing unintended tensions

All of which will inevitably increase over time anyway. If for no other reason than you are dealing with the erratic nature of ALS.

All it really takes is a little “patient patience.”

As well as doing your best to recognize “ignorance” in order to minimize its presence.

About the Author:

Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club (

Read more of What in the World and Bob Taylor at Communities Digital News

Read more of Bob’s journeys with ALS and his travels around the world

Editors Note: Support Bob’s GoFundMe to give him a hand up

Follow Bob on TwitterFacebook

Bob Taylor

Bob Taylor

Bob Taylor has been travel writer for more than three decades. Following a career as an award winning sports producer/anchor, Taylor’s media production business produced marketing presentations for Switzerland Tourism, Rail Europe, the Finnish Tourist Board, Japan Railways Group, the Swedish Travel & Tourism Council and the Swiss Travel System among others. He is founder of The Magellan Travel Club ( and his goal is to visit 100 countries or more during his lifetime.