My mother has suffered from Alzheimer's for a dozen years. At first, my father covered up her forgetfulness. She 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.
She hid her troubles at family gatherings. I assisted her by using someone's name when I spoke to them so she wouldn't have to ask.
But, as with all Alzheimer's patients, things got worse. We had to take away her credit cards. When I took her shopping, I'd pretend Dad was getting new checks printed and would pay me later. If she noticed, she hid her discomfort well.
She couldn’t remember what she'd bought at the grocery store. One unfortunate summer day, a frozen orange juice canister came loose from her bags, rolled under my car seat, and leaked open to ferment in the heat. Until it was professionally cleaned, my van reeked so badly I drove with the windows rolled down, hanging my head out to gulp fresh air.
Although my father did his best, protecting her in so many ways, he lived in denial at times.
Dad: "Yesterday your mom couldn't remember who Debbie was."
Me: "Yeah, Dad. It's called Alzheimer's."
Dad: "But Debbie is one of her favorite nieces."
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.
My daughter was an infant when Dad died. The phone rang as I battled a messy diaper, Mom's muffled voice in the distance. Not in any real hurry, I cleaned up then hit "play" on the answering machine.
Mom: "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 9-1-1 and raced over to Mom's house. The road was crowded with police cars, fire trucks, and an ambulance. They carried Dad out on a gurney, an oxygen mask over his cement-colored, unconscious face.
"Does your mother have any violent tendencies?" a policeman inquired after someone took her aside.
I laughed, perhaps a bit maniacally. After all, Mom never even killed spiders. She only "rearranged" them while cleaning. But I understood his question all too well.
"My mother has Alzheimer's," I explained. "But she's hasn't reached the angry phase yet and wouldn't have pushed Dad down the stairs. My father was weakened with leukemia and has always been clumsy. He fell on his own."
After appeasing the policeman, we left for St. Mary's hospital. We were taken to a room decorated with crosses and framed supportive messages.
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 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.
We found Mom a nice apartment in an Assisted Living community nearby. 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 craft store on occasion.
The day we moved 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 so little in life left to enjoy. She tired so easily 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 non-nursing home birthday party several years ago, she was so confused and exhausted the next morning that we ended her small escapes from the nursing home.
A few winters ago, 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 ER. 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 I needed to sign to avoid scaring my mother like that ever again.
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.
Two years later, she's still slumped in her wheelchair, sleeping most of the day away. She hasn't known who I am for a very long time—that doesn't bother me like I'm told it should. The last year, she's even lost any glint of slight recognition in her eyes at my arrival. There's just the watery, blank stare.
My family visits once a week. Some may think we should visit more often. To be honest, I can barely endure the time I am present. We take her to church where I play the piano and watch her chest rise and fall. Sometimes she holds her breath, and I think for a moment she's passed. I'm happy because her suffering is over and she went peacefully. I won't have to feel guilty about anything because I'm right there. Then she takes another gulp of air and I wonder if God forgot about her. My grandfather (who also suffered Alzheimer's) died from pneumonia before he got this bad. Grandpa was the reason I knew about the angry phase of Alzheimer's—he'd chase relatives around with a hammer or yell at me for raking his yard, tearing the rake out of my hand and slamming the garage door in my face.
The nurses at my mom's care center are lovely. I don't know how they do their jobs with such sweet smiles, but perhaps it helps that it isn't their own parents they help feed. I rarely feed my mother now. I used to do it more often, but my family requested I stop because I turn into a holy terror afterwards. I should be a bigger, better person but I'm not. I'm so very angry about so many things.
I'm upset my mother has turned into this stranger. I expected her not to recognize me, but now I no longer recognize her. About the only thing she does is sound the same when she sneezes. She's not dressed the same. She'd hate the yoga pants, extra large t-shirts, and zip-up sweatshirts I bought for ease of the nurses dressing her. She no longer wears lipstick or does her hair. She can't even read the missal during mass. She just flips 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 miss how smoothly she could spread frosting on cookies. I miss shopping with her. She'd always insist I needed a white, collared shirt and there's nothing I hate more. I miss delighting her with trips to the local zoo or the apple orchard with the kids. I miss 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 there's nothing left of her now. I haven't seen her smile in ages, and the last one was out of the blue, a gift to my daughter.
I'm sad my daughter only knows Mom through my hand-me-down doll clothes. My own memories are crowded out by these years of deterioration. What if all I end up remembering is this—her blank look, her shaking hands, her slumped shoulders? I'm waiting for her to die so my good memories can come flooding back, as I'm told they will after this painful prolonged mourning period is gone.
I'm baffled it was difficult for me to obtain tramadol pain meds for my mother's arthritis because she was "unable to communicate her pain." She can't communicate anything at this point!
I'm furious at my mom's friend. No, I didn't respond to your hateful letter years ago but now I'm calling you out. How dare you imply that my mother's humiliating disease is due to the fact that I didn't force-feed her coconut milk! Take your Internet-based false Science and shove it where the sun doesn't shine.
I'm amazed at the level of denial in my parents' families and friends. Please don't ask me if my mom is getting better—you don't get better with Alzheimer's. Don't tell me my mom is looking great. She doesn't. Don't freak out when Mom asks where my father is. She doesn't always remember he's dead. Now, of course, she doesn't remember him at all.
I'm annoyed at the media, who blasts the scared public with a "new Alzheimer's breakthrough" on an almost weekly basis. Quit playing off fear. Try publishing something real for once, instead of these half-baked ideas.
I get infuriated over 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 can't help her. Visits from my family bring no joy, no recognition. Bringing her cookies, once her favorite treat, just confuses her. She doesn't even know what a cookie is anymore. I have to tell her to eat it, making hand signals to get her to understand.
The only thing I can do is ensure her access to pain meds. I'm a veterinarian. I treat my patients better than my own mother. I discuss pain and quality of life on a daily basis but it took a long time to realize my mom needed the tramadol for her legs.
As a veterinarian, I appreciate the grace in the act of owners choosing to euthanize their pets to end pain and suffering. But I also 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 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've woken in a cold sweat from a nightmare of myself euthanizing my mother—sometimes by injection, sometimes in a coffee cup. This is not anything I will ever do, but I do pray for her to pass quickly and peacefully—more for her sake than mine, or at least that's what I like to believe.
I'm afraid that human medicine will never find a cure for Alzheimer's. It's a degenerative, progressive brain condition. There's nothing you can cut out, no cells you can kill with chemo. Nursing homes do almost too good a job keeping patients alive, when it would be kinder to let them go.
I fear that instead of ending suffering, human medicine prolongs it. What quality of life does my mom have? The highlight of her entire last year might have been the muskmelon I fed her this past 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.