What to do after you or a loved one receives a life limiting diagnosis

Aug 2

4 min read

Receiving a life limiting diagnosis can feel overwhelming. Whether you are the person who has received the diagnosis or the family member who loves them, it is normal to experience a mix of emotions—shock, numbness, disbelief, fear, sadness, deep grief, anger, hope and anxiety. These emotions typically come and go throughout the journey. They are all valid and deserve to be acknowledged and processed when a person is ready.

One of the most important things I tell families is this:

A diagnosis creates two (or more!) clients.

1. The person who has received the diagnosis, whose life is or will be changing in ways they may or may not fully understand.

2. The family member or friend who will be stepping into the role of carer - a role they typically did not anticipate and for which they were not prepared.

Both people need support. Both are experiencing loss. Both deserve to be seen and heard.

While their journeys are different, there are some important first steps that can help everyone feel more prepared and less overwhelmed.

First steps for the person receiving a diagnosis and their closest support network:

1. Take Time to Learn About the Diagnosis

Knowledge reduces fear.

Understanding your illness, how it may progress, and what supports are available allows everyone to make informed decisions rather than reacting in crisis.

Ask questions. Write them down before you attend appointments. Remember that every person's journey with their illness is unique.

2. Put the Important Legal and Financial Plans in Place

Although these conversations can feel awkward, they are one of the greatest gifts you can give your future self and your family.

While the person living with the medical condition still has decision-making capacity, it is important to discuss:

An up-to-date will
Enduring Power of Attorney
Advance Care Planning
Financial arrangements
Banking and important documents
Medical decision-making preferences

Planning early allows the recently diagnosed person living to remain at the centre of decisions about their own life and takes out some of the guesswork down the track.

3. Start Planning for Future Care—Without Rushing It

A diagnosis does not mean life stops. Many people continue to live independently for years. However, early planning provides choice.

Talk together about questions such as:

What would help you stay at home for as long as possible?
Would you accept support workers coming into your home?
What are your thoughts about residential aged care if the time comes?
What matters most to you about your future care?

These conversations are often easier before they become urgent.

4. Connect with Support Services Early

One of the biggest mistakes families make is waiting until they are overwhelmed before seeking help and this just adds more stress to an already stressful situation. Instead, I would encourage you to begin exploring available supports as early as possible.

This may include:

Registering for aged care assessments or the NDIS if eligible
Learning about home care services
Connecting with national organisations such as Dementia Australia or Canteen for example
Joining support groups to share with others who 'get it'
Working with a counsellor to help process the grief, loss and changed relationship dynamics that may arise as a result of the diagnosis
Connecting with professionals who offer specialised support to help you navigate the stages of your illness

Even if support isn't needed immediately, knowing what is available reduces stress later.

5. Make the Most of Each Day

It is all too easy for individuals and families to become hyper- focused on what may happen in the future but any life changing diagnosis, including dementia, is an invitation to slow down, but also appreciate the time we have now. Ultimately it is a delicate balancing act between future planning and living in the present, taking each day as it comes.

This is the time to:

spend meaningful time together
enjoy favourite activities
visit special places
create new memories
laugh together
continue hobbies where possible

The diagnosis should not define every conversation or every day otherwise we move onto a mindset of putting the diagnosis before the person. There is still life to be lived.

6. Capture Stories Before They Are Lost

Every person has a lifetime of memories, wisdom and experiences so while your loved one is still able to share them, consider recording:

family stories
childhood memories
favourite recipes
life lessons
photographs
family history
music that has been meaningful throughout their life

These become treasured gifts for future generations and can also become valuable tools for connection as dementia progresses.

7. Remember That Carers Need Care Too

So much attention is understandably placed on the person living with dementia that carers often forget their own wellbeing. One should never underestimate how deeply carers are grieving too - they are carrying so much, especially as the diagnosis progresses.

They are adjusting to changing roles, increasing responsibility, uncertainty, and often a gradual loss of the relationship they once knew.

Looking after yourself as a caregiver is not selfish—it is essential.

Accept help. Take breaks. Stay connected with friends. Seek counselling if you need it. Join a support group where others understand what you're experiencing.

You cannot pour from an empty cup and you will need support throughout your journey.

8. Keep the Person at the Centre of Their Own Life

A diagnosis of a life changing illness does not take away a person's identity, their need for respect or their need for dignity.

They are still the same person with hopes, fears, preferences, humour, relationships and values. Whenever possible, involve them in conversations. Ask what matters to them. Support their independence. Respect their choices.

Always see the person before the diagnosis.

A Different Way to Think About the Future

Receiving a life limiting diagnosis is undeniably life changing. But it is not the end of living well. With planning, support, meaningful relationships and compassionate conversations, families can continue to experience moments of joy, connection and purpose.

The journey ahead may be different from the one you imagined, but it can still be filled with love, dignity and meaning.

At Ground Zero Counselling, I support both the person living with an illness and the family and friends who walk beside. Everyone deserves support—not just when they reach breaking point, but from the very beginning.