At first, my father covered up her forgetfulness. Mom always hated driving and handed over the keys without regrets, a blessing for our family. We didn’t have to worry about her harming anyone or us hurting her feelings by taking the keys away.
AlLZHEIMER’S TAKES EVERYTHING AWAY
Mom hid her troubles at family gatherings. I assisted her by using people’s names in conversations so she wouldn’t have to ask. As with all Alzheimer’s patients, things got worse. We had to take away her checks and credit cards, then make excuses why I had to pay every time we went shopping.
Although my father did his best, protecting her in so many ways, he lived in denial at times. “Yesterday your mom couldn’t remember who Debbie was,” my dad told me.
“Yeah Dad, it’s called Alzheimer’s,” I responded.
“But Debbie is one of her favorite nieces,” he contended. The truth is Alzheimer’s doesn’t let anyone keep their “favorites.” It takes everything away, piece by piece, until you’re left with nothing.
WHEN MY DAD DIED
The phone rang as I battled my infant daughter’s messy diaper, Mom’s muffled voice on the recorder. Not in any real hurry, I cleaned up then hit “play” on the answering machine. “Ann, your father’s at the bottom of the stairs. There’s blood everywhere, and he won’t talk to me. Why won’t he talk to me?”
I dialed 911 and raced over to my mom’s house. The road was crowded with police cars, fire trucks and an ambulance. They carried my dad out on a gurney, an oxygen mask over his cement-colored, unconscious face.
I knew what was coming. Mom did not. I tried to prepare her. “Listen, Dad was so weak already from the cancer. I’m not sure he can survive this.”
Mom gasped, “Dad has cancer?”
When they led us to his body, I balked at his caved-in, bruised face. Mom prayed with the priest near Dad’s head while I hovered at the end of the bed, unable to take my eyes off his wrinkled, gray feet.
Being the only child, I took care of the funeral arrangements. I brought my mom along, pretending she made all the decisions every time she turned to me with a blank smile. The funeral brought distraught relatives and lifelong friends, each one with a Peace Lily—a plant I used to love and now detest.
I found a nice Assisted Living apartment nearby for my mom. Things weren’t too bad for about a year, except for her wandering. She loved to walk and had to be rescued from Hobby Lobby on occasion.
The day we moved my mom to the locked-down memory care section, she was tearful and confused. I hated leaving her there despite the friendly staff. I hated shrinking my mom’s life even further.
I despised myself for the lies I told her that day—how she’d be happy with so many planned activities, her own personal (gated) garden and new people to meet (none of whom could hold a normal conversation). Mom had very little in life left to enjoy. She tired so easily that we could no longer bring her to the apple orchard for an afternoon. When we took her home for dinner, she’d head for the door after an hour. After her last birthday party, she was so confused and exhausted the next morning that we ended her small escapes from the nursing home.
One winter she got sick with a respiratory infection, was put on antibiotics and started to fail. We weren’t allowed to visit at first. Then I received a phone call begging me to rush her to the emergency room. The blood draws, x-rays, poking and prodding terrified my mother. When the medical staff arrived to gather a catheterized urine sample, I panicked, knowing how that burns. I asked if this was truly necessary, since my mother was already in tears. They insisted, which is probably standard protocol. I gripped my mom’s hands as she cried some more, gasping as they took the sample. I questioned my honesty as I told her everything would be all right.
They diagnosed my mom with an adverse reaction to the antibiotic and sent her home on a topical cream. On our return to memory care, I asked what forms to sign to avoid scaring my mother like that ever again.
My mom lost even more cognition, was transferred to nursing care and confined to a wheelchair. During all this, she began to “improve”—and by that, I mean not die. She gained weight instead of losing it, so hospice care was no longer an option.
THE FINAL SEASON
Two years passed. She slept most of the day slumped in her wheelchair. She hadn’t known who I was for a very long time. A blank, watery stare replaced any glint of slight recognition in her eyes at my arrival.
My family visited once a week. Some may think we should’ve visited more often. To be honest, I could barely endure the time I was present. We took her to church where I played the piano and watched her chest rise and fall. Sometimes she held her breath, and I’d hold mine hoping she’d passed. Then she would take another gulp of air.
I don’t know how the nurses caring for my mother performed their jobs with such sweet smiles, but perhaps it helped that it wasn’t their own parents they helped feed. I used to feed my mom, but my family requested I stop because I turned into a holy terror afterwards, unable to control my anger.
ARE YOU MY MOTHER?
My mother turned into a stranger. I expected her not to recognize me, not that I would no longer recognize her. About the only thing she did the same was sneeze. She didn’t dress the same. She no longer wore lipstick or did her hair. She couldn’t even read the missal during mass. She just flipped pages, trying to figure her way out of the confusion in her head.
Perhaps these things are superficial, but they made my mother who she was. I missed how smoothly she spread frosting on cookies. I missed shopping with her. She’d always insist I needed a white, collared shirt and there’s nothing I hate more. I missed delighting her with trips to the local zoo or the apple orchard with the kids. I missed taking pictures of her holding my children’s hands.
She made magical dolly clothes and the most perfect baked chicken. She loved irises, marigolds and cookies. But toward the end there was nothing left of her. She would smile once every few months, a gift, usually aimed at
I COULDN’T HELP MOM
I’m amazed at the level of denial in my parents’ families and friends. Don’t ask someone if their family member is getting better—you don’t get better with Alzheimer’s. I didn’t want to hear that my mom was looking great when she looked miserable. I didn’t want people to freak out when my mom asked where my father is. She didn’t always remember he was dead. Then after a while, she didn’t remember him at all.
I got annoyed with studies “proving” patients got Alzheimer’s because they didn’t read, exercise or do Sudoku. Stop implying that somehow these patients deserved this disease because they were lazy. They suffer enough, and no one deserves to get Alzheimer’s.
Most of all, I’m disappointed that I couldn’t help her. The only thing I could do is fight for her access to pain meds. I’m a veterinarian and I discuss pain and quality of life on a daily basis, but it took a long time to access appropriate pain medication for my mom.
As a veterinarian, I appreciate the grace in the act of owners choosing to euthanize their pets to end pain and suffering. I recognize that the issue in humans is fraught with selfish concerns—made clear in an Alzheimer’s support group meeting I attended years ago, filled with people desperate to steal their sick relatives’ money and let the state pay for their care. I stormed out of that meeting in silence; although, now I’d love to go back and tell them all to go to hell.
Multiple times I woke in a cold sweat from a nightmare of myself euthanizing my mother—sometimes by injection, sometimes in a coffee cup. All I could do was pray for her to pass quickly and peacefully—more for her sake than mine, or at least that’s what I chose to believe.
I fear that instead of ending suffering, human medicine prolongs it. What quality of life did my mom have? The highlight of her entire last year might have been the muskmelon I fed her last Mother’s Day. Her eyes were open, eager. She wanted as much as I could feed her. Somehow she remembered her love for muskmelon even if she forgot her love for cookies—and her love for me.
Ann Noser is a freelance writer from Rochester, MN.