How I’m Keeping the Memory of My Mom Alive in the Face of Alzheimer’s

If you’d met my mother in the prime of her life, you’d have been intimidated. She was a classic beauty, with curly dark hair, dark eyes highlighted by perfectly applied mascara and liner, and a mysterious smile. She was a smart dresser with an artsy flair, always pairing patterns and textures and accessories in inventive ways. Her humor was sharp and unforgiving. She was also an anxious driver, a picky under-eater, and a stickler for cleanliness. She liked our dogs, but only from a distance, and it seemed to me she felt the same way about her three children. 

This Was My Mom… And This Is My Mom With Alzheimer’s

And then, in her 90s, she developed Alzheimer’s, and the mother who’d always held me at arm’s length professed her love for me whenever I called or visited. The anxious driver was replaced with a childlike passenger who exclaimed joyfully when the car took a corner too fast. The lifelong strict eater dove into pizza with abandon, and the neatnik didn’t seem to notice the leaky roof or the roaches in her house. The woman who cared deeply about clothes now wears the same pilled sweatsuit days at a time. 

Still, in some ways, my mother at 96 seems happier than she was in her younger days. She’s still interested in the news and still surprises me and my siblings often with witty responses. There are isolated moments when she’ll get a fleeting grasp of what she’s lost. “What has happened to my memory?” she will ask, her brow furrowed in concern, and then the moment passes, and she is smiling again. 

My Mom Is Disappearing. How Do I Keep My Connection to Her? 

According to the World Health Organization (WHO), more than 55 million people worldwide suffer from dementia; every year, 10 million more join their ranks. Alzheimer’s accounts for approximately 60–70% of overall cases.

I live a hundred miles from the memory care unit where my mother is a resident and drive to see her every two weeks. I won’t lie: knowing how to engage is getting harder. I used to take her out to lunch, and to a small boutique where she would peruse, sometimes for an hour, the few items on offer. But lately, she doesn’t want to go anywhere.

Recently, I brought a projector and showed her family photos on her wall, but her vision is so poor, they were still hard for her to see. I often bring her new clothes, which thrills her, but she rarely wears them. 

My brother sees her almost daily. He plays music, tells her jokes, and walks with her around the tiny courtyard. My sister calls from her home halfway across the country and reads to her; when she’s able to visit, she brings art supplies and draws with her. But my mother is increasingly tired, and it’s getting harder for her to focus. 

For help, I reached out to Jessica Corona-Irwin, a registered nurse, certified dementia practitioner, and certified dementia support group facilitator at Remo Health, a company that provides comprehensive care and guidance to people with dementia and their caregivers.

For starters, she says, it’s important to remember that the behavioral changes are symptoms of the disease. 

“By accepting this new reality, we can approach our relationship with compassion and realistic expectations.” We must adapt to their (and our) new reality, Corona-Irwin says, and “accept and embrace the changes that come with the journey.”

Lean Into Activities She’s Always Enjoyed

Corona-Irwin says it’s good to continue to engage in the same kinds of activities with our loved one that they’ve always enjoyed, even if they can’t be as fully present or involved as they once were. She recommends adapting our activities and offerings to their abilities, so that they’re as accessible and enjoyable as possible. 

For the person who loved clothes, she suggests giving them comfortable lounging outfits that reflect their taste and preferences, and allowing them to choose what they want to wear each day.  

For the art-loving person, simple art supplies like a small easel with washable paints or finger paints, and glitter or sand to add texture, can be stimulating and fun. Large tablets with bold markers are an alternative. Nicely scented ones can add a sensory experience beyond just seeing the colors, as can bringing in a selection of fabrics with interesting textures. Paint, draw, and touch the material along with them for shared engagement, says Corona-Irwin, and talk about what you, and they, are experiencing. 

For my mother, who never missed her three-mile-a-day walk, walking around her tiny courtyard makes her happy. Sometimes we talk about her old walking buddy and people she remembers from the neighborhood.   

If your loved one liked to garden (my mom loved plants), Corona-Irwin suggests bringing small, pots with soil and seeds; simply touching the soil and smelling the plants can bring back pleasant memories and provide physical stimulation. My brother brings a rotating assortment of live flowers to my mom, which she loves.  

Corona-Irwin also suggests sharing a favorite snack (fruit for my mom), listening to music, or playing a simple game can be engaging. Turn off the TV or competing noise so that you can focus on each other. 

“Offering your undivided attention, a warm smile, or a gentle touch can speak volumes when words fail. Pay attention to their non-verbal cues, as these subtle signals can reveal a wealth of emotions and needs.” 

In short, connection is connection. 

How Do You Connect When Your Loved One No Longer Recognizes You?

First off, avoid putting them on the spot. When I walk into my mother’s room, I always call out, “Hey Mom, it’s your favorite daughter, Dana!” This does several things: it circumvents a possibly uncomfortable moment when my mother might not remember my name, or what our relationship is. And “favorite daughter” makes us both laugh. 

If your loved one does not recognize you, simply be with them in the present moment. It’s not necessary that they know exactly who you are or what your relationship is for them to enjoy looking at old photos or hearing a story. My sister reading to our mother requires only that my mother listen; there’s no pressure for her to respond. In this way, they are able to share comfortable, companionable moments without expectations. 

Lastly, shift the emphasis from memory to emotion, says Corona-Irwin; sometimes the best way to connect with someone is to reassure them: “It’s okay, I’m here to spend time with you.” 

Things to Remember When Communicating

Following a few simple guidelines when communicating with someone with dementia will make connecting with them much easier.

• Simplify your language.
• Avoid jargon or insinuation, and give your loved one time to process what you’ve said or asked.
• Simple yes or no questions are better than questions that require elaboration. 
• Pay attention to your (and their) nonverbal cues.
• Always make good eye contact; a warm smile or a reassuring touch on the arm can be more comforting than words.
• Even if what they are saying doesn’t make sense, respond with empathy and validation. My mother often gets anxious when she realizes she doesn’t have her purse. I always reassure her it’s safely stored in her room, and that lunch (or whatever we are doing) is on me.

“Embrace the Alchemy of Letting Go”

Alzheimer’s can slowly rob our loved ones of their identity, and ours as well, creating anxiety, heartbreak, and confusion for all involved. But if we know what to expect, we will have a better chance of maintaining our connection with our loved one. 

“Navigating the complexities of Alzheimer’s disease requires caregivers to embrace the ‘alchemy of letting go,'” says Corona-Irwin. “This means transforming the pain and grief into acceptance and peace, recognizing that while the disease alters your loved one, it also presents a unique opportunity for personal growth and a deeper understanding of your relationship.”

“Equally important is the process of releasing expectations of what once was, creating space for new experiences, and fostering resilience. Families and family dynamics will undergo shifts throughout this journey, while it is challenging, embracing the unknown can lead to unexpected growth and connection.”

“Ultimately, maintaining a strong bond throughout the dementia journey requires a shift in perspective – one that focuses on the enduring love, shared history, and the essence of the person that remains, even as the disease progresses.”