Posted 17 February 2003

Installment 2: This is the second of several installments in Sarah Goodwin's "Chronicle of Caregiver." Names have been fictionalized to protect confidentiality. We welcome your comments.

See additional installments: |1|2|3|4|5|6

Each day was a surprise as to whether it would be a good or a bad one. That's the way it goes. By Sunday morning, I would pray in church that God would get me through another week without a major argument. I no longer felt supercilious when I realized that Fred's mood swings were not his fault. One must continually be aware that "it is the disease!"

When a really good day occurred, I reveled in it, as the next could be entirely different. One such night in May of 2001, when I couldn't get to sleep because of a lot on my mind, I got up to write things down, This disturbed Fred so much that he complained of a restless night that was obviously my fault. Once again, my balloon was burst, but more importantly, it deprived me of an opportunity to be alone with my thoughts in the quiet hours of night. This was one instance where a choice had to be made—whether to give in to Fred's demand or recognize a need of my own. In this situation, I chose the latter, and that is how my journal began.

While ours was a second marriage, I did not regret having married Fred, and believed at the time that, having lost one husband suddenly, the odds were that I would be caring for the second one through a long illness, like cancer. Fortunately, Alzheimer's disease carries with it no physical pain, but it does cause extreme frustration, like not being able to cut up one's food, tie a tie, or zip a zipper. The pain is emotional and mental for both patient and caregiver. The physical part of caregiving involves the many services that must be done for the other one. Somehow, one takes it in stride and accepts it as the status quo. It is amazing how God gives us the ability to gradually slide into this plodding yet frustrating mode of life. While reading during that time, I came upon this quotation by Soren Kierkegaard: "Life can only be understood backwards. But it must be lived forward."

May 26 of that year was my granddaughter Kathy's wedding day and supposedly an occasion of happiness, but it started out with a disagreement. Knowing that Fred tired easily, I suggested that we stay overnight at a hotel near the reception hall so he could leave early and I could stay as long as I wished. He refused to do that, which also necessitated my driving us home at night. I was depressed all day, expecting to be summoned to leave the reception early. To my surprise, however, he lasted until 11:00. He said later, "I knew you were determined to stay late." Little did he know! That was another lesson for me, never to anticipate the outcome of any social event. On previous occasions, he invariably insisted upon leaving early, and I had no choice, in order to avoid a scene.

My daughter Ginny was very sympathetic, and I told her that with all the daily annoyances and extra work waiting on Fred, it was a thing like having to leave a wedding early that would bother me the most! I also said that he was my responsibility, and I must face it with courage. I married him for better or for worse, and told myself to "grow up" and accept whatever happens. My father used to say, "Hope for the best, expect the worst, and take what you get." That applied here as well as anywhere.

The mere act of writing those things down helped me to realize that, and I offered a fervent prayer to God that He would back me up. I knew I couldn't pray that a day would turn out to my liking, but I needed to know how to deal with my feelings when it did not. When it did, I offered a million thanks to God, Who not only helped me to deal with some very difficult situations, but sometimes made them feel easy.

Positive statements were appreciated. Fred habitually complained about food at restaurants, and our friends were very understanding. One Sunday morning when he said his eggs were good, we all cheered!

At his son Doug's home in Wyoming, Fred managed to play UNO, to the edification of all. Doug's mother-in-law Ethel was there during this visit, and as her husband had suffered from Alzheimer's, she was helpful. I also had an unexpected crying spell with Doug and Bonnie while talking about his dad, but it had been coming on for a long time and was a blessed relief.

My friend Pat, whose husband had died from Parkinson's disease, was another confidante. After I complained on the phone to her and said I felt guilty about it, Pat said, "Well, you don't have to LIKE it." That was the best comment I had ever received.

As for clinical advice, I got that from my own brother Ben, who is a psychologist. On a visit from Texas, he drove Fred and me to our sister Lillian's house to talk and joke with her and her husband Brad about old times. That was therapeutic, of course, and he also offered me some helpful advice later while we were alone.

Reading, also, was not only an escape but the source of appropriate philosophy. I received comfort when reading Icebound by Dr. Jerri Nielsen, the doctor who worked at the South Pole and performed her own biopsy when she discovered a lump in her breast that turned out to be malignant. She had a disastrous marriage and two children who would not communicate with her, which prompted her to quote this poem by Veronica Shaffstadl, titled "After a While":

After a while
you learn the subtle difference
between holding a hand and chaining a soul
and you learn that love doesn't mean leaning,
and company doesn't always mean security.
And you begin to learn
that kisses aren't contracts
and presents aren't promises
and you begin to accept your defeats
with your head up and your eyes ahead
with the grace of a woman,
not the grief of a child,
and you learn
to build all your roads on today
because tomorrow's ground is
too uncertain for plans
and futures have a way of falling down
in mid-flight.
After a while
you learn that even sunshine burns
if you get too much
so you plant your own garden
and decorate your own soul
instead of waiting for someone to bring you flowers.
And you learn that you really can endure,
you really are strong
and you really do have worth
and you learn
and you learn
with every goodbye,
you learn...

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