Memoir from an Honest Caregiver

Each skit, play, and book needs a beginning, middle, and end. That’s how I divide my memoir about caregiving. These divisions were not equal in length. The early stage of Bill’s dementia was about five years. The messy middle, the longest stage, started before we left Terre Haute and moved to Indianapolis, lasting about seven years. The advanced stage amounted to less than a year with in-home hospice care for only two weeks.

I’ve finished listening to a computer voice read my memoir of a little over 50,000 words. That way I could hear and see mistakes needing correction. To let you engage in my memoir, understand that it’s about me as caregiver as well as about Bill and dementia. Below are a few paragraphs from each stage: early, moderate, and advanced.

We notice the first sign of dementia involves word associations. “Thing” becomes the word when specifics escape Bill. For example, he asks our son John to take a “thing” from the kitchen cupboard, meaning a cup for coffee.

When it’s the forgotten name of a person, Bill gets creative. Before a visit from our triplet great-grandchildren, he repeatedly asks me their names. Several times I say Ethan, Naomi, and Levi. He devises names of his own: Ike, Mike, and Mustard. The kids like and choose their names. Of course, Bill doesn’t recall who is who; he just groups them. They don’t mind.

While preaching for a friend, Bill tells about a famous revival of the past. It’s known as the “haystack revival.” Not able to think of the right words, Bill calls it a revival started on “a pile of straw.” I explain the mistake to our granddaughter, Chrissa. She replies with compassion, “Grandpa’s vast knowledge of words gives him a good substitute.”

I resolve to be more attuned to Bill’s needs, for I want to reflect in word and deed the true picture of a biblical wife. That begins at home by pleasing my husband. . . .

Our future, though uncertain, will see an increase in Bill’s dementia and my continuous learning how to handle our disagreements. A few aspects of Bill’s progress show the disease is no longer in slow motion.

For what am I thankful? Two are at the top of my list: Bill’s constant affection which includes blowing kisses and wanting hugs, and his sense of humor. I’m thankful for Bill’s kind disposition, even when I’m abrasive toward him. One good thing about memory loss: he’s quick to forget whatever offense takes place.

In a blog post I write about the term ambiguous loss. Our daughter, Becky, wrote about this on her Facebook page, saying her dad is here but not here. While Bill is present, what he used to be is now absent. In his frequent talks, we hear what’s not present anymore.

One evening Bill enters the kitchen as Paul, Becky’s husband, and I prepare supper. Bill started with his usual theme of doing what’s right and good. We could clearly understand that much as he continues to talk at length. His serious expression shows it’s important to him.

A few mornings later at two o’clock, I awake to see Bill standing by the bed and talking, again about what’s right. As I stand by his side of the bed, he points a finger at me and says, “It would be good for you to do what’s right.” At breakfast I tell Bill he preached during the night, but he gives no response. . . .

One night is a combination of not letting go of my rigid routine for Bill, his dealing with my demands, and an instant answer to prayer. We start getting ready for bed. Mistakenly I already laid out clothes for the next day. At first he wants to wear the corduroy pants, pointing his finger at me and shouting “No! This is what I want!” I kiss him. He calms down.

Next he holds his nightshirt and shoves his leg in at the neckline. My explaining it’s the wrong way does not compute. He gets it up past his belly but no further. After I leave for a minute and return, I find the nightshirt is off. He holds it, but won’t pull it over his head.

I close my eyes and briefly pray out loud. I ask God to help each of us get ready for bed, be calm, and do what is right. When I open my eyes, Bill is pulling the nightshirt over his head. Now why didn’t I pray earlier when the conversation was more heated? Yes, “the one who is patient calms a quarrel” (Proverbs 15:18). The rest of the routine goes well. One more decision: do not lay out Bill’s clothes for the next day.

If you are interested in knowing more––about my being in touch with you when my memoir will be published, send me a note via email. al2.coker@gmail.com  Thanks.

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