When your memory fails

August 11, 2017

My grandfather cracks open his bedroom door and pushes his face carefully into the thin crease between the door and the frame.

My mother is in the hallway.

“Hi, Dad,” she says to his eye, backlit against a slice of bedroom light. “Come on out, Dad. It’s okay.”

The crease collapses as my grandfather shuts the door. Then, it slowly opens again, just enough to see his eye peering into the crease. His eye hits my mother’s once again, a dart to a bullseye. 

“Come out, Dad. It’s okay.”

The door shuts. 

My mother walks into the living room of her childhood home and sits in my grandfather’s armchair—the one identical to my grandmother’s just a few feet away, the one he used to jump up from to greet her when she walked through the door for a visit. She waits for my grandfather to come out of his bedroom.

What my mother feels at this moment, she says, is despair. She knows he can no longer stay there. For more than six years he has been living with Alzheimer’s, and with each passing year the strings of his memory become more delicate.

A few years ago, she found him on the neighbor’s stoop, knocking on the door. During a nephew’s birthday party in the backyard of my sister’s home, in the throes of games and cake and passing the baby around like a breadbasket, my grandfather wandered into the front yard and couldn’t find his way back. 

Last year, when his youngest brother, Bobby, died, my grandfather sat a few rows back from the casket. I sat behind him, so I could hear when he asked my grandmother whether that was his brother. And I could see the side of his face, contorting in fits and spurts of confusion and then awareness and then confusion again, the phases moving like the tide across his forehead and through his eyes and to the corners of his mouth before receding to do it all over again. Eventually, my grandfather hung his head and cried. 

The curious attack of Alzheimer’s on the brain leaves memory in various stages of disarray—a messiness that is different for each of its victims. Sometimes there is a fragment of a memory that elicits fear, sadness, anger. It floats like a buoy on the pool of their minds.

My mother thinks this is what is happening to my grandfather in this moment of barricading himself in the bedroom. At some point, there was talk among family of a nursing home. Since then, he’s become suspicious—disappearing during visits, hiding out behind doors, surveilling through cracks as my mother and grandmother talked.

This time, my mother is certain my grandfather won’t come out of the bedroom because he is afraid she’s going to take him away. 

The truth that haunts my mother is that she is going to take him away. She has a plan she’s been hiding from him. And telling him that he has to leave his home is perhaps the most difficult thing she’s ever done. 

My parents are unable to care for my grandparents. On top of my grandfather’s Alzheimer’s, my grandmother has congestive heart failure, chronic lung disease, and dementia, and she is increasingly difficult to reason with. The home-health aide my mother hired, a nursing student who made pancakes for breakfast and drove my grandparents around town, isn’t coming back. Fiercely independent even as her body fails her, my grandmother told her they didn’t need help.  

Every time my mother visits, it becomes obvious they do. They have difficulty getting dressed. He forgets to eat. She doesn’t take her medicines. Some days are more dire than others. Every now and then, my grandfather mistakenly turns off the twenty-four-hour oxygen tank my grandmother uses to breathe because it’s making noise.

Just out of the hospital a few weeks ago, my grandmother struck a deal with my mother: She would go to a nursing home if my grandparents could stay together.

But the reality is, my grandparents can’t afford to stay together—and my parents can’t afford their request, either. 

Estimates from nursing homes are up to $12,000 a month for their collective care. My grandparents, who owned a gas station and worked in a sock mill, saved pennies for the first and only home they owned but not for a life event like this. Selling their home would barely pay half of their nursing home costs for a year.

The one flicker of hope has come through the Department of Veterans Affairs. My grandfather was a medic during the Korean War, and his pension would cover some of the costs of his care at a respectable state veteran’s home. My grandmother would have to go to a home somewhere else, however, because civilian spouses typically aren’t admitted.

My mother has come to accept that finding my grandparents separate nursing homes is the best way she can care for them.  

She wrestled with the decision for many months, knowing their closeness. They share the same birthday, five years apart. They have been married for sixty-four years. Since my grandfather’s return from his deployment to South Korea in 1951, they’ve spent few days separated. At restaurants, she orders for him because she knows what he likes. It is a sweet and sour reminder of both the tenderness that comes from six decades together and the pending difficulty of uncoiling their lives. Complicated by Alzheimer’s brutal and deeper swipe of my grandfather’s memory each day, the separation from my grandmother may break his heart over and over again.

This thought is agonizing for my mother. She can’t imagine causing her parents pain, much less having that pain repeated as my grandfather’s memory continually resets. She wants to please the gentle man with smiley eyes she calls Dad, the man who used his savings to send her to business college, who always made sure she had a car to drive. The man who doesn’t hold a grudge, talks to animals as if they were his children, comes to a conversation looking for a laugh. She is his only daughter. She doesn’t want to make him leave his home. 

That she is about to break his heart breaks hers, too.

As my mother sits in my grandfather’s armchair listening for signs that he has followed her into the living room, this thought rotates in her mind. She waits. After about an hour, the bedroom door cracks open wide and my grandfather comes out—slipping into the living room like nothing is wrong. 

“Hi, Dad, are you doing okay?” my mother asks. “Why don’t we go outside and sit on the swing. It’s such a pretty day.”

  • Christina Holder M.Div.'13 the DAA's assistant director of communications.