Love and Hope - A Brigid Guest Post

This is a work of fiction but will resonate with anyone who has had a family member with Alzheimer's.  The main character is a young LEO in rural America, a place she never planned on moving, but did after losing her parents.

From "Small Town Roads" by L.B. Johnson Xulon Press 2016

Chapter 21

Dear Journal: I’ve never written about it before, I’m just now learning about how to talk about such things. Mom was diagnosed with Alzheimer’s in her fifties. Since my dad didn’t have the best heart in the world, the two of them had long-term care insurance. It covered assisting living and nursing home care, but Dad steadfastly refused to put her in a home, caring for her at home, even in his declining years with my helping as I could.

Initially, she had her little moments of forgetfulness, like any person her age, but she was such a bundle of energy, still active in church and volunteering, taking dance classes, working in the garden. Then one morning, out of the blue, she came into the kitchen and sat down, looked at me and I realized she did not have a clue as to who I was.

What struck me was not that but the look on her face as she realized this, realized she should know. I obviously wasn’t a bugler or a neighbor over for coffee, I was a girl with red hair like everyone else in the family, wearing a fuzzy robe that she had washed and put in my closet the night before. I will never forget the look of her at that moment. It was the most starkly exposed face I’d ever seen, a face in which unknown terrors haunted the edges; the face of a fledgling dove about to tumble from the nest.

It came into our lives quickly, one moment she was laughing, engaging in board games and puns with us, her face bright, and her wit, razor sharp. Then came those moments where everything just went sort of dim. The doctor only confirmed what Dad had suspected and kept from us for some months until he knew for sure. Alzheimer’s.

It’s a terrible disease for all involved. We read what we could about it, we planned as a family, and we prayed. There wasn’t more we could do.

As the next two years passed, there were a few moments she was quite lucid and happy. Those moments were the hardest for all of us. In those brief minutes, she was fully aware that her mind was going, what was happening to her and how helpless she was to do anything about it.

The disease’s progression was as predictable as its course was certain. Mood swings and aggression, words that made no sense, dropping to the floor like marbles, tears as she tried to mentally gather them up, anger at the very air around her. She always was gentle with my dad, though. Only with him would she remain calm, the reasoning that was blind and deaf somehow responding to something in him that her mind could still see.

Dad cared for her patiently, no matter how bad it got. Friends couldn’t visit, for they were strangers to her, and she’d go into a furious rage if anyone but us tried to enter the home. Dad was her calm and her constant. I was able to help with the housework and the cooking, but he refused to let anyone else care for “his girl” or to send her to skilled nursing care. When she passed, it was quite sudden, after she contracted pneumonia. From her sudden coughing to her collapse, it was just days.

Sometimes when you get to the far edge, the edge just breaks away.

We laid her to rest on a tree-covered hilltop in a little cemetery. My brother and my dad are on either side of her. I visit; I bring flowers. Sometimes Evelyn goes with me, and we hug and shed some tears, neither of us immune to having our hearts broken. Then we smile through the tears, sharing our stories as we make the long trip home to photos and a small stuffed bear that Mom had sewn.

One of those photos is one of her and Dad on their first date, and you could see something in their smiles that would be lost on so many people. Not many people could have cared for her by themselves as my dad did, for so long, but I understand. Love is a story that tells itself.

On my couch is the form of a little black dog. I do not know why Clyde was a stray. He responds with great plaintive urgency to the sound of small children laughing, looking around for them as to say “my kids, my kids,” only to get this look of pure sadness when he sees they are strangers. The first time I witnessed it, I cried.

I was so happy to get him, a saving grace in a house that had a gaping hole in it. What we hold close to us and what we let go is as telling as the words we say. It took me years to understand it, but the words of Henry David Thoreau make perfect sense to me now.

“The price of anything is the amount of life you exchange for it.”

I realized that there were certain things and in the past even certain people, that simply violated my sense of thrift, exacting things out of me well beyond their worth. That concept was lost to me when I was a teen, but as I got older, with truth stripped of its cloak of immortality, it was clear.

As I take out some things to be picked up by a charitable group, I look around me. Shadows move like ghosts over the sun, deepening the grass to the color of jewels. The snow is long gone, the dark earth trembling to release spring’s flowers. At the side of the house is an old trellis that needs repair work before new life grabs onto it yet again. I gather it close to my chest to take it inside to be mended, rather than tossed away. This is my home, I think as I bend my face down to it, breathing in the scent of old wood, holding the weight securely as I move inside. I could bury my face in it, this small thing to be salvaged from this place that I had always been seeking.

As I type these final words tonight, all I can think is that home and love, love and desire, can be what propels us silently onward. Hope and love, love and desire, can also be merely sound that people who have never hoped or loved or desired have for what they never possessed and will not until they forget the words. - Brigid