What Does "Probable CTE" Mean?
CTE (Chronic Traumatic Encephalopathy) is a neurodegenerative disease associated with repeated head impacts.
Currently, CTE can only be definitively diagnosed after death through examination of brain tissue.
Because of this, people living with symptoms during life may receive a diagnosis such as:
- Probable CTE
- Suspected CTE
- Traumatic Encephalopathy Syndrome (TES)
This can be incredibly frustrating for families.
You may see significant symptoms but still feel like there are no clear answers.
Common Changes Families Notice
Every person is different.
Not everyone experiences the same symptoms.
However, families commonly report changes involving:
Memory Problems
Examples may include:
- Forgetting conversations
- Repeating questions
- Misplacing items
- Difficulty remembering appointments
These changes can be frustrating for both the individual and their family.
Mood Changes
Families often notice:
- Irritability
- Anxiety
- Depression
- Emotional ups and downs
Sometimes these changes appear very different from the person's previous personality.
Anger and Frustration
Many people become less tolerant of:
- Stress
- Noise
- Frustration
- Unexpected changes
Outbursts may occur more easily than before.
Impulsivity
Some individuals experience difficulties with:
- Decision-making
- Risk-taking
- Financial judgement
- Emotional control
This can create significant stress within relationships.
Reduced Motivation
Many families worry that their loved one has become lazy or stopped caring.
In reality, changes may be linked to:
- Neuro fatigue
- Cognitive difficulties
- Executive dysfunction
- Depression
The desire to do something and the ability to initiate it are not always the same.
Personality Changes
Perhaps the most painful change families report is feeling that their loved one is no longer the same person.
Some people become:
- More withdrawn
- More anxious
- More emotional
- More irritable
- Less socially engaged
These changes can be difficult to process.
The Uncertainty Can Be Difficult
One of the hardest parts of living with probable CTE is uncertainty.
Families often feel caught between:
- Knowing something is wrong
- Not having definitive answers
Many people spend years searching for explanations.
Some are told symptoms are caused by:
- Stress
- Depression
- Anxiety
- PTSD
- Ageing
- Personality issues
While these conditions can sometimes coexist, families often feel that something more is happening.
This uncertainty can be exhausting.
The Grief Nobody Talks About
Many family members experience a type of grief known as:
Ambiguous Loss
This occurs when the person is physically present but seems different emotionally, cognitively, or behaviourally.
Families often describe feeling as though they are grieving someone who is still alive.
This can create:
- Sadness
- Guilt
- Confusion
- Loneliness
These feelings are normal.
Why Family Members Often Feel Isolated
Probable CTE remains poorly understood by many people.
Families often hear:
"Everyone forgets things."
"They're just getting older."
"Maybe they're stressed."
These comments can feel dismissive and invalidating.
Many families report feeling misunderstood by friends, employers, healthcare professionals, and even other family members.
Living With Uncertainty About the Future
One of the biggest challenges is not knowing what lies ahead.
Families often worry about:
- Progression of symptoms
- Independence
- Employment
- Finances
- Relationships
- Long-term care
These concerns are understandable.
The uncertainty can be emotionally exhausting.
It Is Normal to Grieve
Learn About CTE
Understanding symptoms can reduce confusion and improve communication.
Education often helps families separate the person from the condition.
Focus on Communication
Clear, calm communication is often helpful.
Try to:
- Reduce distractions
- Allow extra processing time
- Avoid information overload
Recognise Fatigue
Fatigue often worsens:
- Memory
- Concentration
- Mood
- Emotional regulation
Many behavioural changes become more noticeable when someone is exhausted.
Choose Your Battles
Not every mistake needs correcting.
Not every disagreement needs winning.
Sometimes preserving the relationship is more important than being right.
Encourage Support
Support may come from:
- Healthcare professionals
- Counselling
- Support groups
- Peer networks
Neither the individual nor the family should have to face these challenges alone.
Looking Beyond the Diagnosis
While it is natural to focus on the diagnosis, it is important to remember:
Your loved one is still a person.
They are more than:
- A diagnosis
- A set of symptoms
- A brain scan
- A medical report
Maintaining connection remains important.
Look After Yourself Too
This is one of the most important messages for family members.
Many people become so focused on supporting their loved one that they neglect their own needs.
You may be:
- A partner
- A carer
- An advocate
- A parent
- A financial provider
often all at the same time.
Your wellbeing matters too.
It Is Okay to Ask for Help
Many family members feel they should be able to manage everything alone.
The reality is that supporting someone with probable CTE can be emotionally demanding.
Seeking help is not a sign of weakness.
It is often one of the healthiest things you can do.
It Is Normal to Grieve
Some behavioural changes may be linked to:
- Frustration
- Cognitive difficulties
- Emotional regulation problems
- Fatigue
Understanding this can help reduce blame.
However:
Understanding behaviour does not mean accepting unsafe behaviour.
Healthy boundaries remain important.
Everyone deserves to feel safe and respected.
Finding Others Who Understand
One of the most powerful forms of support can come from people walking a similar path.
Connecting with other families can provide:
- Validation
- Understanding
- Practical advice
- Emotional support
Knowing you are not alone can make a significant difference.
A Message for Partners and Family Members
You may be carrying fears that few people see.
You may be grieving changes that others do not understand.
You may be trying to support someone you love while also managing your own emotions.
Please remember:
Your feelings are valid.
Your exhaustion is understandable.
Your wellbeing matters too.
A Message of Hope
Living with someone who has probable CTE can be challenging, uncertain, and at times heart-breaking.
There may be days when the future feels overwhelming.
There may be moments of frustration, sadness, and grief.
But there can also be connection.
There can still be laughter.
There can still be meaningful relationships.
And there can still be support.
While you may not be able to control every aspect of the journey, you do not have to walk it alone.
Key Takeaways
- Probable CTE can affect memory, mood, behaviour, emotions, and relationships.
- Families often experience uncertainty due to the lack of definitive diagnosis during life.
- Ambiguous loss and grief are common experiences.
- Understanding symptoms can help reduce conflict and confusion.
- Supporting someone with probable CTE can be emotionally exhausting.
- Looking after your own wellbeing is essential.
- Understanding behaviour does not mean accepting unsafe behaviour.
- Support is available for both individuals and families.
Continue Exploring
- What Is CTE?
- Why Has My Loved One Changed?
- Emotional & Personality Changes
- Caregiver Burnout
- Grief & Loss
- Family Support Group
Together We're Stronger
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