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Family Caregiving:
Experiences that Live on in the Heart

By Martha A. Eastman, RN, PhD

Before the gerontologist diagnosed my father with Alzheimer’s Disease, my mother already understood a lot about dementia. The police had found her neighbor wandering on U.S. Route 201 one night clad only in her nightgown, and after this episode the whole neighborhood became involved in her care. My parents and others had brought her meals over many months and offered her rides in hopes that she would not drive. One day she set off in her car with Bert, her dog, in a huge rainstorm that resulted in the Flood of 1987. My mother tells of getting a call from the Piscataquis County Sheriff after her neighbor had had an accident and the police realized she could not remember how to get home. The next day my mother drove a couple counties over to pick up her neighbor. The sheriff brought her and the dog in a boat because the river had risen and flooded the town. Her neighbor, unaware of the danger, greeted her with, “Well, hello, what are you doing here?” Now my mother reflects on all those difficult and amusing experiences with her neighbor and believes that God was preparing her to be a family caregiver.

image_car_1 In August 1998 my father was diagnosed with Alzheimer’s disease; this began a 5-year caregiving stint that led both to many rich memories for my family and to my decision to begin my care management practice. Fortunately, my mother was healthy and energetic. As a nurse, I had professional knowledge and caregiving skills. My twin sister had what David Troxel and Virginia Bell in A Dignified Life call “knack,” learned quickly, and was a natural caregiver. My mother had known for some time that something was wrong and that my father had become more forgetful. A few weeks before his evaluation with the gerontologist, he drove to town to get a haircut, but came home without it, because he could not find the barbershop. After the dementia diagnosis he did not drive, but helped keep the car clean in the summer and sometimes moved it in the driveway so the plowman could plow after a snowstorm.

Between September of 1998 and September 2002 my parents kept up a busy routine and my mother became an expert in caring for a person with dementia. Everything became an activity, whether she was cooking, cleaning, or participating in a community event, my mother found ways to include my father. Before this time his attendance at church had been sporadic for many years, but once he relied on my mother for care, he went along willingly. He had always had a beautiful bass voice, and even when he did not recognize all the members of the church or remember what to do when the offering plate passed by, he sang out when they played familiar hymns.

In August 2001 my parents visited the Historical Society in their town to deliver some items they wanted to donate. Here they are on that day.

Quite early after his diagnosis he developed aphasia and had difficulty finding words. Sometimes a French word would come out instead of English. Once I remember arriving at my parents’ home and he had just seen a raccoon in the yard. He said, “That one with the mask!” when he could not remember its name. My mother, sister, and I kept a running conversation with him just the same. Before I talked with him on the phone, I usually gathered details about his day from my mother and then mentioned things that I knew he had done or seen. He would respond with “Yes” or just chuckle, but he would always respond in some way to my voice.

At first my mother could leave him a note by the phone when she went out, saying where she was and when she’d be back. He liked things to be organized into neat rows. One day he organized her jewelry box, matching up all the earrings and putting like things together. She found he was very good at dropping cookie dough into neat little rows on a cookie sheet, and he earned the affectionate nickname “cookie monster” as he frequently raided the cookie jar.

Dancing remained a favorite activity. Here he is dancing with his younger sister, Ruth, at a family gathering.

dancing_50thIn May 2000 we celebrated my parents’ 50th wedding anniversary. They had both graduated from high school in the 1930s and were good ballroom dancers. At their 50th wedding anniversary party they danced more than any other couple there! Even though he could not remember many of the guests, he could still lead my mother around the dance floor.

Many people asked us about “wandering” and since we lived in a rural town, we always paid close attention. We kept a bell on the front door, but sometimes my father could open and close the door without making it ring. We always walked along the road that ran by my parents’ house, rather than walking in the woods or along wooded trails, because we did not want my father to wander into the woods. Whenever he left the house, we just went out and walked with him. We all got a lot of exercise! I’d always assess his balance and stamina. In the fall, he’d stand on one foot and kick leaves or acorns with the other. Knowing that he did this wanderingfrequently whenever he walked, I was never surprised when he was able to stand on one foot to pull on a pant leg. We also participated in the Safe Return program through the Alzheimer’s Association.

brother As his dementia progressed we helped my father maintain his relationships. One of his favorite people was his brother George, and we have many pictures of the two of them together. Here he is welcoming George to our home on Thanksgiving Day 2003. By this time my father also had a diagnosis of lung cancer and a few days before this picture was taken he began receiving hospice services.

Here are my parents on Thanksgiving Day 2003, a memorable occasion for our family. My Uncle George played his accordion and I played my tuba. My mother and my sister and I all danced with my father. Although he had become quite frail, he even danced the tango and was very affectionate. We all knew he was saying goodbye and we savored every moment.parents

My father died at home a couple weeks later on December 10, 2003. In the program for his memorial service we quoted an article published in the December 15, 2003 People Magazine, by Patti Davis, daughter of Ronald Reagan. In the piece Davis shared her love for her father in anticipation of his death after living so long with Alzheimer’s Disease. She wrote: “My father will leave; we all know that. . . . We will walk past an empty room. We will be assaulted by the silence, the emptiness, and we will, I think, try hard to listen—to echoes, whispers, all those things that don’t vanish when a person dies. That is, if you believe in such things. My father did. And that might be his most important legacy for us—what lives on in the heart.” (p.123)

We continue to remember my father often, especially when dancing, playing music, or sharing with others about our caregiving experiences.

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