Wellness for the Long Run

A favorite metaphor of caregiver experts is that taking care of a loved one is a marathon, not a sprint. And just as in running a marathon, when it’s essential to drink fluids early in the race, before you even feel thirsty, so it is with long-term caregiving. We caregivers need to re-energize ourselves early and often, even if we don’t think so. For mothers (who tend to be the primary caregivers) of children, teens and adults with disabilities or other severe chronic illness, “running” in this unplanned race without the necessary breaks is exhausting, lonely and can leave us without enough energy to take care of ourselves, either mentally or physically.

This point was hammered home as I read a summary of a recent study in The Journals of Gerontology that compared the data on 128 parents of those with childhood-onset disabilities with 512 parents of typically developing kids. The parents completed an interview, a mail-in survey and a battery of cognitive tests and concluded, “Mothers of those with disabilities are at increased risk of cognitive aging compared to those with only typically-developing children.” Mothers who reported the greatest difficulty handling their children suffered the greatest memory decline. Fathers, however, were not impacted in the same way.

Some methods suggested by the lead researcher to ward off this cognitive decline were for moms to keep strong friendships, “a sense of control of life” and to keep physically active. I know personally how hard these three goals are to achieve while also juggling all the other roles in my life. Forget “having it all” — moms of special needs children are just trying to “have one thing crossed off the list” by the end of each day.

I participated recently in one day of a three-day Women’s WellNess Retreat held at the Friendship Circle of Pacific Palisades, what was termed, “Soul-Centered Healing for Miracle Moms of children with special needs, ADD and other differences.” (In Hebrew, ness means miracle, and is most often associated with the miracle of the long-lived oil during Chanukah.) Jointly sponsored by the Westside Regional Center, the wellness retreat was the brainchild of Navah Paskowitz, who, along with her husband, Matt Asner of Autism Speaks, has six children, including three with autism.

The retreat was designed to engage the whole body, mind and soul. The morning learning session I attended was taught by Rabbi Zushe Cunin and focused on the topic “Unconditional Love: Replacing Expectations With Acceptance.” He shared with the group of 12 moms Rabbi Hillel’s famous one-line summary of the entire Torah: “Love your neighbor as yourself; the rest is the explanation — go and study it!” From there, we talked about how self-love is the necessary first step to loving others. In order for us to love others and accept them for who they are in all dimensions, we must first accept ourselves, both the good and the bad characteristics.

In a very mystical sense, Cunin said, we all have a part of us that is part of the Almighty, and that part can never be diminished. Most relevant for all the moms at the retreat were his next words: “Each person is given a challenge in life; the main goal is emerge from that darkness into the light.”

Turning from our more ethereal souls to our corporal bodies, the next presenter, Maddy Wolf (a friend, but not a relative), talked about eating the right mix of foods to keep our energy levels high and all of our systems working most efficiently. She encouraged us to always eat a good breakfast filled with lean, clean protein and to keep our blood sugar levels stable by eating frequently, and to avoid sugar and processed food. She also advised us to stop eating at least three hours before bedtime in order to give our bodies time to digest dinner. We sampled seed-based crackers, green gazpacho and a variety of other healthy, fiber-rich food.

Then, last week, I was treated by my sister to a four-night cruise to Baja California on which the toughest decision was whether to order one or two desserts at dinner. Reading by the pool, relaxing in the steam room and just watching the waves lap into the horizon from high atop the ship were all peace-inducing, and a few of those drinks with the little paper umbrellas didn’t hurt either.

Now, it’s back to reality. No more 24-hour buffets, free evening entertainment and ridiculous towel animals. I’m rescheduling an appointment with the Social Security Administration and talking to our 20-year-old son’s new service coordinator at the regional center to figure out what services he will need in the next 12 months as we look ahead to life after high school. It’s going to be a long run, but I’m feeling up to it.

Michelle K. Wolf writes a monthly column for the Jewish Journal. Visit her Jews and Special Needs blog at jewishjournal.com/jews_and_special_needs.