Mom’s Long Goodbye is still on sale for 99 cents in digital format. Her goodbye began with a red photo album and ended fifteen years later in a hospital bed in the Alzheimer’s wing of Southridge Village. This memoir strips away the façade of being the perfect caregiver and gives the reader a look at the denial, the anger, and the fear that come as a loved one loses herself a piece at a time to an insidious disease. Through sharing my own struggles, I try to assure other caregivers that they are not alone, that perfection is not required, and that comfort is real. This is Mom’s story and mine.
Fear and the Red Photo Album
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
Mom was afraid for a long time. I found evidence of her fear in an old, red photo album, the kind with a thick cardboard cover bound with braided cord. It had a rose embossed on the front, and I sat on the floor, wondering what forgotten pictures were inside. Instead of pictures, there were articles. Page after page of neatly clipped and mounted stories about dementia and Alzheimer’s. Stories of symptoms, stories of promising theories, stories with more questions than answers, stories of Mom’s first steps into the darkness.
Mom was always a fearful person, especially when she was alone. Dad worked nights several times during their seventy-year marriage. She sometimes told the story of being a young bride, left alone in an isolated country house while her groom worked at the ice house every night. One evening, she was awakened from a restless sleep by a terrible noise. She later described it as sounding like someone was trying to get into the house straight through the wall of her bedroom. She had no phone and no close neighbors, so she huddled in the center of the bed, trembling with fear and wondering how long she had left to live.
The noise continued for a while, but when the walls didn’t splinter and the threat didn’t seem to increase, she screwed up her courage and crept outside to investigate. She slipped down the front steps and peeked around the corner, and there, she saw it. An old milk cow was chewing on the grass that grew up beside the pier and beam foundation that supported the house. She laughed about it after the fact, but she and I had a replay of sorts years later when I was in my early teens.
We lived in the city by then, and Dad still worked nights, this time at the post office. My older brother, Jim, was away at college, so Mom and I were on our own. I was sound asleep when I was awakened by an urgent whisper.
“Linda! Come in here. Somebody’s trying to get in the window.”
I jumped up and ran into her room. She was sitting up in bed, her back pressed against the headboard with the covers drawn up to her chin.
“There,” she said pointing to the window beside her pillow. “Somebody was scratching on the screen.”
I sat on the side of the bed for a minute, staring at the window. The closed window shade was backlit by a full moon and gave off an eerie glow. Suddenly, a shadow passed across the window, and I scooted under the covers and into Mom’s arms. We sat that way for a few minutes, but when there was no further movement or sound, curiosity overcame fear, and I slid out of bed and tiptoed to the window. I pulled the shade away just far enough to peek out.
“I don’t see anything. I’m going to call Dad.”
Without turning on a light, I went to the phone that sat in its recessed nook in the hallway wall. All the modern houses had them. Like a blind person reading Braille, I slid my fingers over the dial, counted the holes, and dialed the number.
“Dad, I think somebody’s trying to get in. Something was scratching on the screen in your bedroom, and I saw a shadow on the shade.”
“Did you look out?”
“Yes, I peeped out and couldn’t see anyone.”
“Okay. Stay away from the window. I’m going to call the police.”
Within minutes, we heard a car pull up in front of the house and saw the beams of flashlights as Mesquite’s finest investigated. Then, we heard a knock on the door.
“We didn’t find anything, Ma’am, but we’ll have a patrol car drive by here frequently for the rest of the night.”
When Dad got home the next morning, he found us still huddled together under the covers. He immediately went out to investigate; he was laughing when he came back inside.
“I didn’t find any footprints or anything, but I did find some evidence. There were rat droppings on the window sill.”
We took a bit of kidding about being afraid of the dark, but Mom wasn’t just afraid of things that go bump in the night. She was afraid in the daylight, too. She was afraid of making a mistake, afraid of looking foolish in front of others, of being embarrassed, of being looked down on.
She had a beautiful voice and helped lead the singing in her tiny, country church when she was a teenager. That was before air conditioning, when church windows actually opened and congregations cooled themselves with cardboard fans provided by the local funeral home. One Sunday morning, a fly flew in an open window and straight into Mom’s mouth as she sang. She was so embarrassed she became reluctant to lead the singing. Not long after that, she learned that the former song leader had been diagnosed with throat cancer. Fearful that his singing might have contributed to his illness, she retired from her leadership position and rejoined the congregation.
She had other musical talents, too. She learned to play the guitar by watching her uncles when the kinfolks gathered for a songfest, and she also played the piano by ear. We had an old player piano we inherited from one relative or another. The player mechanics had been removed, Dad had refinished it, and Mom spent many happy hours playing honky-tonk tunes and old gospel favorites. When we moved from a small West Texas town into the suburbs of Dallas, though, she feared that city folks would look down on her country origins, so she did her best to cover them up. Her guitar was relegated to the back of her closet, and the piano was made available for me to practice the Old Masters favored by my piano teacher.
Mom also feared illness and physical infirmities of all kinds. She was born with yellow jaundice, as it was known in the country, and she was sickly as a child. As an adult, she endured a tonsillectomy, an appendectomy, a hysterectomy, three spinal fusions, and the removal of a deformed kidney, so she saved her best nightgowns for her next trip to the hospital. She feared falling victim to any epidemic or new disease that made the rounds of the morning talk shows. In spite of her fear, or maybe because of it, she often developed the symptoms of those diseases. What she feared most, though, was Alzheimer’s. I didn’t realize how much until I found that old photo album.
Mom and Dad lived with us for six years before they went into assisted living. By that time, neither of them was capable of making the decisions necessary in downsizing. I went through their personal belongings and made piles: things to pack, things to store, things to donate, things to throw away. I found trash, and I found treasures—and I found the photo album in the bottom of one of Mom’s dresser drawers. I wonder how long she lived alone with her fear before the rest of us suspected.
Buy Link: Mom’s Long Goodbye