TOOLKIT
Palliative and End-of-Life Care for Carers
Supporting your loved one while caring for yourself
Caring for someone with a brain tumour and navigating changing care needs can be challenging.
There can be difficult conversations, uncertainty about the future and a wide range of emotions, all while trying to support the person you love or in your care.
At Peace of Mind Foundation, we understand that carers need support too. Whether you are feeling overwhelmed, exhausted, frightened or simply unsure what comes next, you do not have to face this journey alone.
This topic can be incredibly heavy for families, loved ones and carers, so take your time or mark this page to come back another time.
You may be feeling a myriad of emotions ever since diagnosis and the change to palliative care can bring a new set of emotions.
Take care of yourself during this time, there is no right or wrong way to feel.
Palliative Care
Palliative care focuses on improving quality of life, managing symptoms and supporting emotional, practical and spiritual wellbeing.
It can be provided alongside treatment and is not only for the final days of life.
Palliative care teams may include doctors, nurses, social workers, allied health professionals and other support services working together to support both the person living with a brain tumour and their family.
As a carer, you are an important part of that team.
The Emotional Impact on Carers
Palliative care focuses on improving quality of life, managing symptoms and supporting emotional, practical and spiritual wellbeing.
It can be provided alongside treatment and is not only for the final days of life.
Palliative care teams may include doctors, nurses, social workers, allied health professionals and other support services working together to support both the person living with a brain tumour and their family.
As a carer, you are an important part of that team.
The Emotional Impact on Carers
Many carers tell us that this stage of the journey can bring complex and conflicting emotions.
You may feel:
Fear about what lies ahead
Sadness and grief
Anxiety and uncertainty
Exhaustion and burnout
Guilt when taking time for yourself
Guilt for the person being moved from active or palliative care
A desire to stay strong for your loved one
There is no right or wrong way to feel.
Many carers experience several of these emotions at the same time.
When Grief Begins Before Loss
It is common for carers to experience grief before their loved one has died.
You may be grieving:
Changes in your loved one's health
Loss of independence
Changes in your relationship
Those plans made that may no longer be possible
The uncertainty of what comes next
This is sometimes called anticipatory grief, and it is a normal response to a difficult situation.
You do not need to carry these feelings alone.
Having Important Conversations
As difficult as they may be, conversations about wishes, preferences and what matters most can help bring clarity and comfort.
Conversations can start with:
Care preferences
Where your loved one would like to receive care
Important people they would like involved
Cultural, spiritual or personal wishes
Advance care planning and creating a Will
Creating legacies
Understanding how your loved one wants to be involved with future care decisions
Caring for your loved one at home, in hospice, or hospital
These conversations are not about giving up hope. They are about ensuring that your loved one's wishes are understood and respected.
Looking After Yourself
Carers often put their own needs aside throughout the course.
Your wellbeing matters.
Try to:
Accept offers of help.
Take breaks when possible.
Stay connected to supportive people.
Speak openly about how you are coping.
Access professional support if needed.
Prioritise rest and nutrition where possible.
Caring for yourself is not selfish, and we are here to help you