How can you help a loved one maintain their independence in the face of a dementia diagnosis? In three new VOICES essays, caregivers share their wisdom.
Many caregivers struggle with feeling like they need to offer support to their loved one at all times — and still do seemingly the opposite: preserve that person’s sense of independence. It can feel impossible to strike the right balance.
“Yes, my mom has vascular dementia, but she is not a disease, she has a disease,” writes caregiver Janet Campbell. “My mom is still a woman; a human being who wants to be respected, and who wants to age with dignity.”
In three recent VOICES essays, caregivers reflect on ways they centered the dignity and independence of their loved one, from helping a loved one to complete small tasks like writing a grocery list to respecting their boundaries when it comes to taking photos.
“It’s the Little Things That Matter”
Janet Campbell’s mother faced numerous instances of being misdiagnosed by physicians before she received an updated diagnosis of vascular dementia. Physicians and neurologists commonly misdiagnose different types of dementia — and sometimes even dismiss patients’ concerns. But, being misdiagnosed has serious consequences: It can delay proper treatment for a patient and cause their symptoms to progressively worsen.
When Campbell’s mother finally received her vascular dementia diagnosis, Campbell discovered a new and challenging layer of caring for her mother: maintaining her mother’s independence.
“She was a proud single parent who worked diligently to give me the world, so in my mind, receiving a dementia diagnosis meant that my mom’s need for independence would diminish, but boy was I wrong.” Campbell writes.
In an effort to honor her mother’s dignity, Campbell found small ways to involve her in daily activities, from helping with the grocery list, to picking out her own clothes, to chores like putting away grocery items and taking out the trash.
“What I didn’t realize was that by doing everything for her, or stopping her from doing things, I was making it hard for her to remember how to do things,” Campbell writes. “Now I move the outside trash cans closer to the house and I watch from the window to ensure she comes back inside. It’s a win win because mom feels like she’s contributing around the house and it supports her brain in remembering.”
“Capturing Memories of My Father”
Emily was 24 years old when her father was diagnosed with dementia. While caring for him, Emily felt the desire to record some of their moments together to document their relationship and his experience with dementia.
“I dressed him in his big puffy coat, and put my small tablet into the inside pocket, and clipped the microphone onto his scarf, letting him know what I was doing,” she writes. “Knowing I was recording allowed me to just be in the moment with him.”
As Emily documented their journey together, she also came to understand how involving technology can sometimes interfere with natural moments — and at times, make a person living with dementia a bit uncomfortable.
She learned to strike the right balance between preserving their memories and being respectful of his boundaries.
“My dad might not remember the ice cream we had on the beach, but he will remember feeling comfortable and relaxed and safe,” Emily writes. “The last thing you want to do is record these moments for the future and for them to be marred by your loved one feeling uncomfortable in the moment.”
“Moving My Mom”
Despite installing security cameras at her mother’s home, Lauren Andrews couldn’t suppress the feeling that her mother, Charlene, who lives with frontotemporal dementia, was potentially unsafe living on her own.
As Charlene’s dementia progressed, she fell victim to online scams. Forgetting to pay bills became more frequent. Andrews worried how her mother would respond in an emergency at home if one arose.
In a quick decision, Andrews’ and her husband moved Charlene into their 600-square-foot home. Despite challenging moments, Andrews enjoys caring for her mother in close proximity.
“I found joy in her cheery, chatty vibes, and we [Andrews and her husband] had fun with her repetitive nature,” Andrews writes. “We started taking her out on adventures regularly, and seeing her eyes twinkle with excitement brought me immense joy and a sense of purpose.”
While caring for someone with dementia can be incredibly unpredictable, and may even feel turbulent at times, Andrews writes that it has forced her to live in the moment.
“Our decision to have her live with us has helped me realize we can’t always have a plan or a detailed forecast for how life will progress,” Andrews writes. “Understanding this has helped me enjoy my time with Mom and has allowed me to live more in the moment rather than trying to force a plan for the future.”
Get in touch and share your story
VOICES is Being Patient’s series of essays written by people who are or have been a caregiver to a loved one living with Alzheimer’s disease or another form of dementia.
VOICES exists as a collection of caregiver stories that shed light on both the challenging realities and joyful moments of caregiving. If you are interested in sharing your dementia care story, please reach out to lauren@beingpatient.com for details on how to contribute.