Alzheimers – From Daughter To Caregiver

By Shana Moore

For all the times I didn’t cry.

Oof. This is hard enough to carry in my heart and in my bones without contemplating its specificities enough to define it with words. But I’m hoping that my expression of this particular heartache can help other daughters-turned-caregivers tap into their own unexpressed emotion and, eventually, their own healing, too.

My mom was sunshine. She was the bubbling, playful, cuddling, crafting, crouch-down-on-your-knees-so-you-can-greet-your-granddaughters-at-eye-level kind of human that always makes me think of the question posed by Toni Morrison: “Whose eyes light up when you walk into the room?”

Marcia’s, that’s whose.

As a woman who was looking to add good cheer wherever she went, she shaped my brother’s and my childhood in the very same way. This meant we were loved on by plenty of aunties since her friends were plentiful. It meant creativity with craft fair submissions and a team mom designing logos for our caps. It meant having a mom who stepped up to take my troop to the Girl Scout Camporee even though she wasn’t exactly “at one” with nature. She was more like “at 999,” which was made clear to an entire campground when she discovered a grasshopper in her sleeping bag and screamed like Freddy Krueger had her by the hair. It meant hosting disco parties for her friends, and Christmas tea and clever birthday celebrations for ours. It meant encouragement at every turn and the utterly priceless feeling of being loved and supported without condition.

She was both the sturdiest support and the softest landing we could have, and it feels like a betrayal of biblical proportions to write this in the past tense when she is still alive.

But this is what Alzheimer’s does. 

Diagnosis

Four years ago, after some questionable driving encounters, she was diagnosed with the disease. Since she had buried her own mom due to the same diagnosis only six years prior, we both knew what horrors and indignities would come. I remember exactly which red light we were at when she said the words that are high in my throat as I type, “I just thought I’d be here for the girls’ weddings.”

Because her early symptoms were limited to spacial processing issues and a sense of overwhelm with what had always been simple tasks, she was able to question and process and deny and eventually accept that she had “it”. The disease whose name is hard to say out loud when she could still remember how it impacted her relationship with her mother. The exasperation over trying to reason with someone unable to use logic, the outbursts of paranoia, and even missing person calls to 911.

The first two years after her diagnosis are a bit of a blur. There were challenges, for sure. There were behaviors that didn’t make sense then but do now as we manage the progression. We were exasperated that it could take her a full three days to pack a suitcase for a trip, or three hours to grocery shop for two people. Her go-to answer for any invitation became an emphatic “No!” even though she would light up a room for any gathering she eventually – and with great family discord – conceded to attend. 

Our social butterfly was defying all laws of nature by crawling back into her self-made cocoon. 

Progression

The last two years have brought more agitation and pain than I often let myself acknowledge. Today was one of the days I let it all pour down my cheeks. The physical release of expressing how hard it all is to my husband as I sobbed brought such a lightening to my physical self, immeasurable on a scale somehow, but with such a weight removed on my spirit that I’m shocked it doesn’t reflect instantly in my pant size.

Today, what I needed to process – after an 18-month delay – was the day my brother and I dropped Mom off at the front of El Camino Hospital, two weeks into the global pandemic. This meant that we were met at the curb by hospital administrators who had set up tents out front and greeted us dressed in hazmat suits. She was experiencing severe pain due to a vertebral collapse, to the point that she requested us to overdose her. The doctors initially denied her surgery because of the risk of death to Covid because of her many comorbidities but eventually acquiesced. To drop off a loved one who can in no way advocate for themselves during this time is nothing short of traumatic. 

I then spent the next six weeks rehabilitating her at home so we could keep her out of the care facilities that were rampant with Covid deaths. During that time, as the effects of anesthesia brought havoc to her already compromised brain, I had to help Mom accept, again, the death of her parents, as she was sure they were still alive. I also tried – and continue to try – to assure her she was safe in the home she’d spent the last 50 years in, even though it felt and feels foreign to her.

In hindsight, I’m not entirely sure that fighting for her to get that surgery was the most merciful choice we could have made. 

You simply must laugh when you can

In the days since, there have, in fact, been plenty of good times, mostly because my mom’s spirit pokes through, despite all the many things that ail her.

One day, we visited with her neurologist and explained the latest symptom of her believing that there are two men now living in her home, one who goes by Bill and the other, coincidentally, Billy. Despite the fact that this causes her great confusion and agitation most days, she still managed to flash her charm and wit when the doctor said, “Say hello to your husband,” and she replied, “Which one?” with a great laugh. 

Other days she laughs with me when I have a funny take on her behavior. I can’t tell you how many times I’ve witnessed a mysterious bulge down under, much like Mikhail Baryshnikov’s as he takes to the stage. Inside her pants is cash or cherished ribbons which she then removes with a flourish like a magician pulling scarves from her sleeve.

You simply must laugh when you can.

Some days are harder than others

Other days are brutal. One such day, I thought I’d share with her a piece of writing I had created for my life coaching practice. It was meant to be inspiring, and I thought it might make her feel proud of me, as my writing always had before. Instead, as I fished for a compliment and asked, “What do you think?” her reply was like a baseball bat to the gut: “Sounds like a bunch of shit to me. You’re preaching, and I’m just lucky if I can find my glasses when I need them.” If you knew my mom, you would understand just how shocking that response was. 

This kind of darkness is present in her most days now. I feel as though I am on the cusp of accepting that despite our best efforts to allow her to stay at home – whatever that even means to her when she doesn’t really feel like it’s her home anyway – it is time to explore memory care options. I help five hours per day, but that leaves my dad with her the other nineteen. It’s too much suffering. Too much heartache.

The journey from memories to memory care

There is deep anguish in all of this and, yet, also a deep sense of pride in showing up for so long to make all the challenges less lonely, less serious (since our dynamic is so playful), and more delicious (the highlight of Mom’s days is a slice of pumpkin bread and a vanilla latte from Starbucks).

I will forever carry with me the love and good cheer she has shown me throughout my life, and I’m honored to be giving it back as she navigates this long dark journey home. 

Mom, I will carry the sunshine for the next generation (or two), as you have, but I will also need to accept the clouds as they come… mostly on the days when I ache for your presence.