CHARLOTTE, NC: November is National Family Caregivers Month. For most people, that designation is not of great significance in the present tense. However, family caregivers will be a part of most peoples future. The ALS Association estimates there are roughly 30,000 Americans currently living with the affliction. That number is only a starting point, however, because the number of people affected by the disease is far greater. On some level family, friends are affected. The ones designated as the family caregivers are all affected by this illness.
As the circle of caregivers broadens, so too, does the extent of involvement from outside sources. Much like a pebble tossed into a pond, ever-widening ripples radiate into larger and larger rings of disruption upon the once quiet surface of the water.
Family Caregiving is not limited to ALS patients
Typically, the initial source of care falls upon the spouse before widening to extended family, friends and, finally, professional assistance. As the holidays approach, the percentage of sharing becomes distorted. ALS patients, for the most part, are limited in their abilities to go shopping or to even do something as simple as secretly purchase a card to thank someone for their help.
In that sense, it becomes increasingly difficult for patients to express their thanks in a personal way that they once took for granted.
There are ways to compensate, small though they may be. However, t it often takes concentrated effort to divorce yourself from self-indulgent behavior in order find ways to make caregiving tasks less stressful.
The ever-changing needs of the ALS patient
Patients with a life-long disability spend a high percentage of their time adapting to their constantly changing progression of the disease and of life. They frequently becoming more demanding of family caregivers without realizing they are doing it.
National Family Caregivers Month gives us, those receiving care, a timely opportunity to pause, and listen.
On the simplest level, the easiest thing to alter is your attitude. Frustrations often ignite emotions that can cause patients and caregivers alike to lash out. It’s easy for ALS sufferers to blame others who are nearby for not being aware they are struggling or dealing with a mishap.
Concentrating on being positive and open to new ideas is one way of relieving stress for others. When it comes to new ideas, believe me, the endless supply of suggestions is sometimes overwhelming. Being gracious and able to adapt and accept the fact that people are only trying to help goes a long way toward demonstrating appreciation for their kindness.
Realizing new limitations and accepting them is another means of assisting a caregiver.
Dropping and spilling things, choking and, perhaps worst of all, falling are constant reminders that the world has changed.
Like the song says, “Slow down, you’re moving too fast.” Being mindful that it is simply going to take longer to eat or to move makes the family caregivers job considerably easier.
ALS is an odd affliction in that there are many times when it is easy to forget your condition. Patients sometimes get lost in thought and fail to pay attention to what they are doing. That’s when trouble looms.
Take a deep breath and slow down. Everyone, including the patient benefits.
Stop doing, start listening
A third suggestion is a good advice for everyone, not just patients. One of the most difficult challenges people face in our contemporary fast-paced world is the ability to listen.
How many times have you been to a restaurant and ordered something that did not come out as you asked? How often do you have to repeat something on the telephone because the voice at the other end cannot get the correct information?
Better yet, how many television interviews have you watched where a reporter asks a question and the interviewee fails to answer it?
It’s all a matter of listening.
So often we tune each other out.
Frequently it’s a difference in personalities between two people. We naturally ignore certain people in our lives because we have come to know that they will drone on and on about nothing of interest.
On the other hand, modern society with cell phones and social media has made us susceptible to self-indulgence and only retaining a fraction of the conversations around us.
That can lead to misunderstanding, confusion and hurt feelings. During National Family Caregivers Month everyone, because we all care for someone, should be mindful of listening.
The solution is to practice listening. It’s a lost art.
Respond to questions and comments with interest and add your own twist to a conversation. Sometimes it’s hard to do, but keep that smile and look directly at the person who is talking.
Years ago, during my travels, I spent an afternoon with a prolific Swiss artist named Hans Erni. Erni died at the age of 106 and I am convinced the secret to his longevity was his work ethic and his positive energy.
At the end of our tour of his museum, he drew a pencil sketch and handed it to me. It was fast and unpolished, but it had my name on it and he signed it. Today it proudly hangs on the wall of my office.
I realized then that the greatest gift someone can give another person is a small piece of themselves. My Hans Erni sketch is proof positive, for it is unique in all the world. It’s one of a kind.
Giving the gift of you
A quote attributed to Pablo Picasso says much the same, only better:
The purpose in life is to discover your gift.
The meaning of life is to give your gift away.’
As the holidays approach, take time to appreciate the caregivers in your life. A simple “thank you” is really the best and most appreciated gift of all.
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 the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up
Lead Image: Photo by rawpixel on Unsplash – https://unsplash.com/photos/n01oLThpdXI