It’s August. Whether you have family members getting ready to head back to school or not, you see the signs all around you. Literally, there are so many signs:
- Tax-free weekend
- Hiring Bus Drivers!
- Blinking school zones preparing you for the exit from summer
- New backpacks loaded up with grade-appropriate school supplies
- Sales on Kleenex and hand sanitizer
- First-day of school outfit laying out and ready to go
- No more staying up late for kiddos
- Getting back into the routine of early to bed and early to rise- all of these reminders of…
a sequence of actions regularly followed; a fixed program.
What about personal and unique routines-those that allow us to focus on self-care, caring for those we love, and the little things that add up to BIG things that really matter. What do we practice every day so that it becomes odd when we miss it?
Aristotle is credited with having said: “We are what we repeatedly do. Excellence, then, is not an act, but a habit.”
He is talking, far more eloquently than I ever could, about the value of repetition. Repetition in our thinking and choice of perspective. Repetition in thinking and speaking words of gratitude to ourselves- and to others. Repetition in pushing back against negativity and instead inviting positivity into our lives; the space is ours to protect. Repetition in using our unique gifts, in some way-every day.
Recently, I was reading a column by Juliet Taylor in ALS News Today. The title was The Best Cup of Coffee I’ve Ever Had
In part, Juliet shared this impactful insight regarding our gifts, how we connect with those we love, and the importance of even the smallest of routines:
Throughout our relationship, my late husband, Jeff, was the partner who most enjoyed taking care of people and things. He built wooden furniture and personal gifts, tended to flowers, and prepared meals from scratch. He got a great deal of satisfaction from going above and beyond for people. Jeff was a born nurturer. He was never happier than when he was caring for others.
A perfect example was coffee. We’d start our mornings by drinking coffee in bed together while watching the news. Jeff would wake up first, in the dark, then amble to our kitchen and make two perfect cups of black coffee while I slowly came to life. He’d come back to bed with them, and we’d spend the first 30 minutes of the day together. It was something we could count on, no matter how busy our respective workdays promised to be.
We had an ideal balance until Jeff’s ALS diagnosis in October 2018 tipped the scales. Jeff’s hallmark physical strength, which had provided him the means to care for things, began to dissipate…Our shared tradition devolved to just me swigging coffee during our morning caregiving routine. ALS brings loss after loss, and we knew that losing that quiet time together was seemingly small, but actually significant.
Jeff was using a power wheelchair full time by October 2019, just a year after his ALS diagnosis. He could no longer walk and had limited use of his arms. He drove the wheelchair with his finger using a joystick. One morning not long after, Jeff asked me to get him up and prepared for the day. Generally, this routine took us about 90 minutes, as I used a Hoyer lift to move him from bed to shower chair to toilet, dressed him, and then used the lift again to move him back to his power wheelchair for the day…
On this particular morning, Jeff asked only to move to his wheelchair and for me to go back to sleep. This request was a departure from his needs, and also from our usual routine. But caregiving is exhausting, and I was OK to oblige. After some time, perhaps an hour — I had nodded back off to sleep — Jeff came back into the room. From his text-to-speech app, his voice filled the room. “I made you coffee. I just can’t pick it up. Will you go get it?”
At that moment, I realized, too, how much caregiving and nurturing was a central part of who he was as a person, and how important it was to him still. I mourned the losses ALS brought to him, to me, and to us together. But ALS couldn’t dim his loving character or our shared commitment, clearly still in evidence, to keep our relationship and life as happy and balanced as possible.
What routines do you have? What new routines will you create? I’d love to hear from you! Tonya.Hitschmann@als.org
-Tonya Hitschmann- Managing Director, Care Services