CHARLOTTE, NC. At first this may sound self-serving or even a bit narcissistic. But when dealing with ALS, there must be a certain amount of self-preservation involved in order to help overcome its disabilities. Young novelist and fellow ALS sufferer Rachel Doboga has come up with a process to boost that sense of self-preservation. She calls it the “Power Hour.”
I’ll get back to the “Power Hour” in just a moment.
On caregivers and assistance
One of my caregivers explained to me the following idea. When you realize there are things you can no longer do or that have a limited success rate, it’s better to turn those tasks over to others who can assist. That way, you can concentrate on things you can actually accomplish.
In that sense, quality of life takes a turn for the better better. In turn, this helps diminish mental burdens that subliminally sneak into your psyche.
While that sounds good on the surface, it is not always possible to meet those challenges. That can build frustration. For example, if I can’t answer my cell phone because it’s slightly out of reach, and if no one around to assist, the call will be lost. Frustration and anger arises at my futile attempts to get to the phone, which is just tantalizing inches away. Yet I still can’t answer the call.
Asking for help is a double-edged sword
One of the toughest adjustments confronting those suffering from ALS is the necessity of asking for help when it’s needed. It’s a double-edged sword. The patient becomes demanding according to his or her needs. But those needs are not always convenient for a caregiver’s schedule.
If my nose runs, under normal circumstances I would wipe it myself. However, not having the use of my arms, I must summon assistance from someone who may be two rooms away doing something else. My need seems immediate to me. But the caregiver is forced to be interrupted to accommodate something as simple as a runny nose. That makes me feel I am now a burden. That’s because I’m forced to make demands that are largely minor in scope.
Caregivers, on the other hand, especially those who provide the bulk of the assistance, sense a loss of freedom, too. That’s because they are perpetually on-call.
Rachel Doboga invents the “Power Hour”
In order to battle this condition, Rachel Doboga has experimented with something called a “Power Hour.” It’s basically a personal program for ALS patients and caregivers alike to look forward to some personal time during the day.
The formula is simple. Select three activities you enjoy such as reading, writing, meditating, watching television. Or anything else you can physically accomplish within the limitations of your infirmity. Then set aside 20 minutes out of an hour at specific times of the day. Use the time to indulge in one of those three pleasures. That’s your “Power Hour.”
The idea is, of course, is to relax by allowing yourself some “me time” without interruption.
Putting “Power Hour” discipline in place
Naturally, the “Power Hour” process requires discipline. That’s because for me at least, no two days are alike. That makes a regular schedule difficult to organize in advance. Another problem: Interruptions from well-meaning friends and/or relatives who check in on your welfare while you are in the middle of your self-care session.
If it is possible to select specific times for your “Power Hour,” the best thing to do is to notify anyone and everyone who might call you. Tell them that each of those 20-minute periods are yours, and you will get back to them when you are finished.
Unfortunately, of course, that still does not eliminate calls from mobile phone scammers, UPS or Fed Ex deliveries, door to door sales people or visits from magazine salesmen. But a “Power Hour” still helps.
Caregivers can put their own “Power Hour” to good use as well
Doboga recommends the “Power Hour” to caregivers as well, in order to avoid burnout. In truth, a caregiver probably requires more time than a 20-minute break. So it would be better to modify their schedule to allow for at least an hour or two of “Power Hour” time.
Part of the burnout process for caregivers is due to the personal quirks of their patients. For example, back when I could still do things independently, I would always take my folding paper money and face the heads on the dollars in the same direction. Not that it mattered really. It was just a personal idiosyncrasy.
However, when someone else fixes my money for me now, they go bonkers when I ask them to do it the way I customarily do it. Over time, such nuances can and do become tiresome little daily burdens that eventually accumulate to cause caregiver weariness.
I am a pepper freak. I love a lot of pepper in soups and on certain foods. No caregiver in the world can season my meals with enough pepper to suit me. Therefore, when I ask for a lot of pepper, one of us must define what we mean by “a lot.” I get frustrated by not having enough seasoning. Meanwhile my helper experiences”shock and awe,” marveling over the overly generous amounts of spice I add to the meal.
This may not sound like much. But the cumulative effect of multiple personal preferences of an ALS patient can become overwhelming at times. That’s why the “Power Hour”idea could just be the ideal solution to the caregiver’s problems, at least with regard to some patients.
Fine-tuning for the “Power Hour” process
If you do attempt this, however, be certain to make modifications in time, schedule and activities that are suitable for your individual lifestyle as well as that of your caregiver. If you don’t modify the plan to suit your needs, it will most certainly become yet another exercise in futility.
Most important, whatever you choose to pursue during your “Power Hour,” make sure it’s something you personally look forward to. That way, you can fill each day with positive thoughts and motivation.
— Headline image: Pepper shakers and salad fixings. Public domain image via Pixabay. CC 0.0 license.
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 (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up