You cannot take on her pain. She has to go through this on her own.
The voice sliced through my frenzied thoughts as I sat alone at the traffic light. It was commanding, leaving no room for argument.
I silently cried as jolts of fear coursed through my body. I knew that was true. But I had to do something! I have to help her! I shut my eyes and prayed harder than I ever have in my life. God, what can I do?
My mother was dying of Alzheimer’s Disease. A disease that descends like a storm upon the unsuspecting mind, creeping creeping creeping until finally the cruel thunderclouds swallow the personality whole, leaving the soul exposed and drowning in the void. As if gasping for air, she was desperately grasping for her identity. And despite my best efforts, I was unable to throw her a lifeline.
Last winter 2020, this was my mom’s reality day in and day out for torturous weeks. She was frantically trying to hang onto any shred of her life and personality. Seemingly overnight, the aspects that made her HER disappeared: her boundless love of reading, knitting, and shopping. Her passion for country music and the Patriots. None of this mattered any longer.
All of her senses began betraying her. Her mind was unraveling at astonishing speed. The world suddenly twisted into a bizarre Alice in Wonderland where the gentlest sounds pierced her skull, furniture grew three times larger, and the words on the page of a familiar book jumbled into nonsense. It’s almost as if all of her basic bodily functions suddenly decided to give up and scream: Abort! Abort! Abort! Her ability to eat, use the bathroom, and understand reality vanished into thin air. Yet, the subtle signs something was brewing in her brain came long before.
A few years ago, my mom noticed strange things. Things I knew embarrassed her, so she would slip these incidents into our daily chatter like she was commenting on the weather.
“Your brother was in my kitchen last night while I was asleep. It was 2 a.m. and he was whispering for me to wake up.”
“I got lost in my closet last week. I couldn’t find my way out. Then I started to panic and fell down.”
“I didn’t make it to the bathroom the other day.”
My mother was a true Maine woman: solid, strong, and stubborn as hell. She was widowed for almost 30 years and did almost everything on her own: balancing checkbooks, moving furniture, killing spiders. She was independent, yet as the only daughter with five sons, the bulk of her care fell on me. We had lived together in a duplex for almost 14 years, and I took care of her years before that as she never had a driver’s license. She was a smart woman and opinionated–often yelling her opinions at anyone within earshot. She read voraciously and followed politics and current events.
The day she couldn’t remember the woman on TV was when I knew her dementia was worsening.
“Darla, what is her name again?” she asked, pointing toward the TV.
“Who?” I asked.
“That woman! Right there! Who is that?” she asked, clearly agitated.
“That’s Oprah, Mom.” My mother practically worshipped Oprah. Years ago she religiously watched her daytime talk show and read all of her magazines and books.
The next month she burst into my living room with a scowl on her face. She told me the delivery men from Home Depot (who delivered a stove to her weeks earlier) were dumping their trash on our front lawn. “How could they?! They must be mad at us!” she cried. Next she told me she thought the neighbors were stealing our mail.
Her delusions and hallucinations were absolutely one hundred percent real to her. She had only a few minor memory lapses. Thankfully, she still knew who I was and who her grandkids were, up until her very last breath. I learned later from a memory care nurse that dementia is different for everyone; certain symptoms crop up depending on which section of the brain is dying. My mom found herself spiraling into this bizarre world of delusions mixed with reality. I’m certain she knew she wasn’t right and that surely must have been terrifying, so she clung to the familiar and faked being okay. But the delusions were only getting worse and more frequent.
Right before Thanksgiving at our local grocery store she had a complete meltdown at the register. She couldn’t remember how to use her bank card. This was nothing new, so I tried to discreetly help her. Suddenly her face turned purple with rage. “LEAVE ME ALONE! I CAN DO IT! LEAVE ME ALONE!” she screamed, ripping the card out of the machine.
The store fell silent and I could feel everyone’s eyes on me. With shaky hands she inserted her card back into the machine and the transaction finally went through. Suddenly, her eyes grew dark and she loudly declared the store just stole her money. The clerk looked at me for guidance. I grabbed the bags of groceries and silently ushered my mom toward the exit. She continued screaming at the top of her lungs that the store was taking her money. “THEY ARE TAKING MY MONEY OUT!” she ranted as I attempted to corral her to the car in the parking lot.
“Mom!” I pleaded with her in the car. “You just bought groceries. They aren’t stealing your money.” Reasoning with someone with dementia is pointless.
“YOU DON’T KNOW THAT DARLA! THEY DID! THEY STOLE IT! I HATE YOU! I HATE YOU!” she screamed as we drove back home, tears running down her face.
As unsettling as these outbursts were, she would drift back to her normal mildly cranky self, often apologizing to me, something she rarely did during my lifetime. She was smart enough to know she was losing her mind. This revelation brought much sadness to both of us.
One night my cell phone rang at 2 a.m. Half-asleep, I answered and the voice on the other end was one of sheer panic.
“Darla, I can’t take this anymore! You have to help me! I can’t live like this! I feel like I’m dying! JUST KILL ME!”
I rushed her to the local ER thinking she was possibly having another heart attack (she nearly died of congestive heart failure 17 years ago). During the ride to the ER, my mother’s near constant anxiety had reached a fever pitch. She was barely able to speak and simply shook and gasped, “You have to help me! I’m going to die!”
Because of the pandemic, I was banished to wait alone in my car in the parking lot. My mom was almost 87 years old, so I braced myself for this to be it, her final goodbye. Hours went by, they ran some tests, and the ER doctor discharged her with nothing more than a form that read “severe anxiety and dementia” at the top.
My mother’s 2 a.m. phone calls became more frequent and she began calling all of my brothers as well. She was crying out for help, totally desperate and despondent. To this day, I have pangs of guilt I couldn’t help her. Working a full time job, having my own family and taking care of my mom was quickly becoming impossible. She started coming over to my place all hours of the day, often in sheer panic. Because I’m working remotely at home for a local university, often I would be forced to conduct zoom meetings with the entire faculty while she was sitting mere feet away from me, crying softly in a chair while I rubbed her hands to try and soothe her.
In-home nursing or companion care was my only possible lifeline. I had several agencies and nurses visit with my mom to assess her needs. One of the hallmarks of dementia is the patient is able to cleverly disguise their illness by dialing it down when needed. She was on her best behavior whenever these agencies stopped by. She was sweet and talkative and completely faked it to appear normal. Pride and embarrassment won. One nurse declared that my mom wasn’t suited for help as she was too independent. Another said even if she needed help, it would be close to 8 months before a nurse would be available to help due to the pandemic.
My brothers started calling her to check in on her. For about 15 minutes she would pretend she was fine, talking about politics or the weather. As soon as she hung up she’d wail and throw herself on the living room floor in front of my kids, banging her fists, her face twisted in agony. She told me her head was blowing up. I found myself playing nurse and tried to manage her symptoms, but no pain medicine could touch them.
Thankfully, there were times she truly was fine. Her personality would come and go like a gust of wind. Right before my eyes, she’d transform into the mother I knew for 50 years. Cranky, of course, but also witty and funny. When she came back, it was all I could do not to hold my breath. Relief washed over me. Mom! You ARE in there after all! You didn’t disappear! Maybe you’ll be alright! Inevitably, as soon as I dared believe she was “back”, she would disappear again for longer and longer periods of time.
On one of her better, more lucid days, she told me that even though she wanted to die, she wouldn’t die just yet because she “didn’t want to ruin our Christmas”.
She was true to her word.
After Christmas, life had blurred into a terrifying whirlwind of confusion, anxiety and anger. Mom was declining rapidly, almost as if she had dropped off a cliff into the abyss. Her primary physician was useless at offering any real tangible help to ease her suffering. During the entire few months she was really sick, Mom saw a doctor exactly one time in-person to take a memory test, which she actually managed to score well enough to be deemed as having “mild dementia”. The rest of her countless doctor appointments were via Zoom–a horrible way to try to heal patients at the end of their lives.
Frequently, the doctor would say to me, “We’d see her in person, but we’re in a pandemic.” As if the pandemic trumped my mom’s illness and her horrible pain and suffering! Meanwhile, her anxiety meds were changed almost weekly. It was almost as if the doctors and nurses were throwing pills at a wall to see if they would stick. In my sleep deprived mind, not a single medical professional gave two shits about my mom’s care or making her feel better.
I spent countless hours trying to navigate our pathetic healthcare system, only to find dead ends and the constant excuse, “we’re in a pandemic, sorry.” This virus has not only stolen thousands of lives directly, but indirectly thousands more are suffering needlessly, pawned off because they “only” have dementia. This was my mother. She was a human being. She deserved to have her pain and suffering eased.
Meanwhile, she was telling me she wanted to kill herself several times each day and night. I felt myself cracking under the strain. Being her sole caregiver even a short time had slowly destroyed my own mental health. I was having panic attacks daily. Every time my cell rang I would brace myself to hear her anguished cry, “I want to die! You have to help me!”
One night, I had a nervous breakdown at 3 a.m. I woke up with unbearable weight crushing my chest, my heart bursting, my body convulsing. I thought I was dying. I managed to stand up and started hyperventilating. My husband held me for hours to calm me down. I needed help. My mom needed help. She needed intensive round-the-clock care.
The next day, the doctor sighed over the phone, “It’s time for your mother to move to assisted living. She’s 87. She’s lived a long time. This is just a part of life.”
I wanted to smash the phone against the wall.
But I knew she was right. Ahead of me stretched a lonely path of pain, grief, and tears. But little did I know at the time, the most powerful force in the universe waited patiently in the wings to save both of us.
My mom died from Alzheimer’s Disease on February 4, 2021, two weeks after her 87th birthday.
Her story will be continued in Part 2.
In Honor of Mom
I’ve written about my mom in many humorous posts here on this blog as well. I owe my Mainah in-your-face sense of humor to her. Thanks, Mom. Love you.