This month’s story reminds us that behaviours we observe in people living with dementia are not random or meaningless. Often, they are attempts to communicate something important when words are no longer available.
When a Simple Task Becomes Difficult
“Thelma” had been living with dementia for several years when she moved into long-term care about a year and a half ago. Her daughter, “Helene,” continued to stay closely involved in her care and attended our support group regularly.
Over time, Thelma experienced several falls. Eventually, for her safety, the healthcare staff made the decision for Thelma to start using a wheelchair.
Staff at the care home noticed another change in her behaviour: she seemed reluctant, even resistant, when it was time to sit on the toilet. Assisting her became increasingly challenging.
Because Thelma had a history of falls, the explanation seemed straightforward. Everyone believed that the reason for Thelma’s apparent “resistance” was that she was afraid of falling from the toilet.
To everyone around her, this seemed like the most logical conclusion.
When Behaviour Has a Different Meaning
As caregivers, we often look for explanations that fit the information we have available at the moment. When someone has fallen repeatedly, fear of falling is a reasonable assumption.
But behaviour can sometimes be a messenger for something we cannot immediately see.
Not long before Thelma passed away, an X-ray revealed that she had a hairline fracture in her hip. This type of fracture can cause significant pain, especially when a person shifts their weight, sits down, or changes position.
Suddenly, her reluctance to sit made sense in a different way.
What had appeared to be fear may actually have been pain.
Thelma may not have been able to say, “This hurts.” Instead, her body communicated the only way it could: by resisting the movement that caused discomfort.
When Communication Changes
Pain is one of the most common unmet needs in people living with dementia.
As the disease progresses, the ability to clearly describe discomfort often declines. A person may no longer have the words to say where something hurts, how intense the pain is, or when it began.
Instead, the message appears through behaviour:
- Resisting care
- Pulling away from movement
- Increased agitation
- Facial expressions or body tension
- Changes in mobility
Coping with Caregiver Guilt
After learning about the fracture, Helene shared that she struggled with feelings of guilt. She wondered if she should have pushed harder for more testing after her mother’s falls. Perhaps, she thought, the fracture might have been discovered sooner.
These feelings are incredibly common among caregivers.
When we look back with new information, it is easy to question past decisions. But caregiving rarely provides perfect clarity in the moment. We make decisions based on what we know at the time, often while juggling exhaustion, emotions, and complex medical systems.
What matters most is that Thelma was not alone.
Her daughter remained present, involved, and deeply committed to her care.
And that matters more than any missed clue.
The Importance of Staying Curious
Thelma’s story highlights two important lessons for caregivers.
First, while we often say there is always a reason behind the behaviour, sometimes our first explanation may not be the correct one. This is why it is so important to keep asking “why,” to stay curious, and to approach behaviours like detectives looking for clues.
Second, caregivers must learn to release the heavy burden of guilt.
Both family caregivers and professional caregivers do the best they can with the information they have at the time. Compassion must extend not only to the person living with dementia, but also to those who care for them.
Carrying Thelma and Helene’s Story Forward
We are deeply grateful to Helene for sharing Thelma’s story with us.
Stories like this are not easy to tell. They require courage, vulnerability, and love.
Helene allowed us to share this experience to help other caregivers see something she wishes she had known sooner: sometimes behaviour is the only language left when the body is hurting.
But there is something even more important to remember.
Thelma was never defined by a fracture, a diagnosis, or a moment of misunderstanding. She was a mother, a person with a lifetime of memories, relationships, and experiences that existed long before dementia entered her life.
Let us honour their life and legacy by remembering the fullness of how they lived and not by their diagnosis. This is how they live forever in our hearts.
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DISCLAIMER:
This article is based on a true story; however, names, locations, and certain events have been altered to protect the privacy and confidentiality of the individuals involved. Any resemblance to actual persons, living or dead, or actual events is purely coincidental.
The contents of this blog are provided for information purposes only. They are not intended to replace clinical diagnosis or medical advice from a health professional.
