What Is the Caregiver's First Commandment?

“I found a copper penny in the street—roughed up, beaten, and defaced by the traffic. I picked it up and kept it, for there’s still value there. As I dropped it in my pocket, I thought: There’s my life, too. Roughed up, beaten, and defaced, yet God still is the center of my soul, to paraphrase St. John of the Cross from the 16th century.”

This excerpt from my journal is dated October 18, 1998—a year after my wife Martha was diagnosed with Alzheimer’s. As you might suspect, the entries in my 14-volume journal swing wildly from fear and despair to hope, trust, and joy, especially through the early years.

When we got this troubling news, I had a fearful sense that my experience was too shallow and thin for what lay ahead. As much as anything, this desperate sense is what drove me to search for answers in many realms—medical, physical, emotional, mental, relational, and spiritual.

Based on my conversations, readings, and experience since 1997, I finally learned this about caring for Martha: If you’re going to care for a loved one, then you also must take care of yourself.

I call this the ‘Caregiver’s First Commandment.’

This hard-earned principle applies to anyone, not just those dealing with Alzheimer’s. I think most of us have to learn through experience that we must let love, humor, trust, intelligence, and joy filter through our hearts and minds if the brazenness of fear is to be dispelled. I continue to learn this.  

Thomas Merton put it this way: “He who attempts to act and do things for others... without deepening his own self-understanding, freedom, integrity, and capacity to love, will not have anything to give others.” I copied this journal entry from the book Alzheimer’s Disease: Frequently Asked Questions by Frena Gray-Davidson.

A few weeks ago I posted some raw notes from my journal. This was received well enough that I plan to do this more often as we go forward. There’s real value in sharing our reflective thoughts. But there’s also equal value in sharing our feelings in real time. It permits the reader to see that they are not alone in the midst of their crisis. My crisis is not yours, but there can be a shared bonding—a shared community, if you will—if we’re willing to open ourselves to each other and to those raw feelings.

I looked for ways to shore up Martha’s confidence, which had been shattered by her news. I shared last fall the delightful experience she had with water-color painting.

Here are some other journal entries highlighting moments of both confidence and disappointment:

November 23, 1997… This was Martha’s first Sunday to sing in the choir. She looked like a natural and was beautiful in that robe. Singing is one of her great passions.

March 25, 1998… The YWCA recognized Martha as Outstanding Woman in Tampa Bay in the Civic Volunteer category. Great confidence booster! Martha had her buddies and me there to share in the glow—Tedi, Jennie, Nancy, KK, Grace Elizabeth.

Friday, March 27, 1998… Martha was one of the many VIPs invited to open the stadium for the Tampa Bay Devil Rays baseball team. (NOTE: Martha had been the swing vote on the City Council that decided to build what is now Tropicana Field.) We saw them play their very first game there—beat the Atlanta Braves 5-0 in a spring exhibition.

November 26, 1997… Martha began an experimental test program through our neurologist. Don’t know whether she’s taking a placebo or the experimental drug, called Lazabemide. It sounds hopeful.

January 1998… (NOTE: At the time of Martha’s diagnosis, aluminum was thought to be a contributing cause of Alzheimer’s—maybe.) Once I read this, I tossed out all aluminum cookware. And I threw out all deodorants after I found one that didn’t contain aluminum. Do you know how many deodorants have aluminum?! I also ordered a water sample kit to test the local water for aluminum.

(NOTE: A couple of years later, researchers announced that this aluminum warning was a false alarm.)

February 1, 1998… Four months after her diagnosis Martha decided it was time to tell Frank and Grace Elizabeth (her parents), and we did at their house. It went well as could be expected. They were shocked, but very supportive.

A Note to our children...

Thanksgiving 1998

Dearest Rachel, Kathryn, & David…

This day, this year is especially meaningful to Mommie and me. You’ve shared fully in our fears and grief. We want you to share in our joy, too.

Enclosed are some thoughts spinning out of our 12-month visit with Mommie’s doctor. Your love, your warmth, and your prayers have been an incredible healing force in our fight with Mommie’s Alzheimer’s.

Happy Thanksgiving!

Love, Mommie & Daddy

The enclosed is from my journal…

November 24, 1998

12-month review of Martha. Real good news! Her doctor says he detects no change in Martha from 12 months ago, maybe even a slight improvement. Short of a marked or full recovery, stabilization was our goal the past 12 months. Persons Martha’s age (50 at the time of her diagnosis) often decline precipitously, the doctor says. Martha has not. What has stabilized her?

  • Martha’s experimental medication? Or was she on a placebo? (NOTE: Several months later we learned the drug was proved ineffective.)
  • Exercise, especially swimming?
  • Prayers of Father Matthew and Sister Elaine? Lacy’s prayers? Prayers of our friends?
  • Our meditation and prayers for Martha’s healing?
  • Martha’s staying active socially?
  • My increased involvement in Martha’s life?
  • The vitamin supplements heavy on anti-oxidants?
  • Martha’s positive outlook and faith? Mine?
  • The children’s support? Martha’s family’s?
  • The doctor and his staff’s warmth and forthrightness?

Some or all of these things may have helped. Then maybe there’s something we haven’t even identified. I happen to believe all are contributing factors. Seeking God’s heart permits a healing atmosphere to form around us, within which these actions do have influence and within which the healing qualities of Martha’s body and mind emerge.

Thank you for your interest in these notes.


P.S. Congratulations to Susan S., who won Anne Lamott’s book Traveling Mercies.

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