Surviving a Perfect Storm

Tomorrow, my live-in aide, Jimmy, will be starting a well deserved ten day vacation. Knowing how difficult it can be to find an acceptable replacement, he gave me plenty of advance notice. About six weeks ago, I was lucky enough to secure the services of a former aide who was familiar with my condition and routine. Unfortunately, he backed out on me three days before Thanksgiving, leaving me with less than two weeks wrapped around the holiday weekend to find a replacement.

We pulled out all the stops and put together a variety of coverage plans. My first step was to call my care manager, Bonnie, to find candidates for the position that I could interview as soon as possible. I also put out emails to my friends and congregation looking for people who could fill in some hours, so that I could put together a schedule of potential care givers. This second option of using friends was also dependent on being able to move Lloyd’s (my afternoon aide) hours to the morning in order to have someone available who was able to move me out of bed and through my toileting and dressing routine. The third option was to temporarily move me into a nursing home, a last resort that I really hoped to avoid.

After interviewing three aides, I was unable to find one that was capable of performing both of the two most critical tasks – transferring me and understanding my “ALS accent”. Offers from friends began to pour in to cover multiple four hour shifts. Unfortunately, there were not enough people available to cover the daytime hours. To make matters worse, my good friend, Gil, who is often available to assist me in situations like this was recovering from surgery and unable to help. It is my wife’s busiest time of the year with her high school choir concerts keeping her out until late at night multiple times per week, and my children’s schedules would be keeping them out of state during the time Jimmy would be away. As if this wasn’t enough of a challenge, it turned out that there was no room for me in the nursing homes.

On the day before Thanksgiving, I was down to my last, although best option, and had one more health aide to interview. My last hope was a 19 year old Lithuanian, named Will, with only a year of experience. As it turned out, that year of experience included a client with physical limitations similar to mine, and Will was able to transfer me with ease, and understand me better than most people. I was saved, and Jimmy was able to continue with his vacation plans with peace of mind.

The most remarkable part of this experience for me was that I was able to remain fairly calm and focused throughout the ordeal, while those close to me were displaying higher levels of concern about how the situation might not work out in my favor. By staying in the moment, remaining calm, feeling grateful for the groundswell of support coming from my friends, and doing what was necessary, I weathered the storm, found the resource I needed, and averted a crisis. Living with ALS has taught me time and again how being in the moment, gratitude, and focusing on what you can control or influence can contribute to transforming difficult challenges from nightmares to miracles.

Have you had similar experiences? Please share them.