The conversations I wish they’d had with me. The things I wish I had known about becoming my husband’s carer
An article written by Linda Beaver, Health Consumer Representative & former Allied health manager and clinician
In July 2025, my husband was diagnosed with pancreatic cancer.
It was a shock.
It was distressing.
It was confronting. He died four months later.
During that short and intense time, I made the decision to keep him comfortable at home until the last few days, when he was admitted to hospital. The impact of that decision was enormous, emotionally, physically, practically, and financially.
The right services were involved. The clinicians were skilled and caring. Yet, looking back, there were practical conversations that did not happen, conversations that could have reduced uncertainty, distress, and the constant feeling that I was trying to work everything out on my own.
I write this as the end user of the health system.
I was the caregiver.
I was the memory.
I was the question‑asker, the record‑keeper, the organiser, and the person responsible for maintaining a safe and dignified home environment as my husband’s health declined.
My background is in health. I believed I understood how the system worked. I thought I would know what to ask, how to respond, how to manage. I was wrong.
There was no time to gradually adjust or learn. Our experience was driven by immediacy. His life expectancy was short. We were living day to day, sometimes hour to hour. With the benefit of hindsight, there are things health professionals could have said to me upfront. This is not as criticism but written as an opportunity for reflection and continuous improvement.
Things I wish my health care team had said:
1. “This is what being a caregiver will actually mean”
I was unprepared for the true scope of responsibility: monitoring symptoms, managing medications, maintaining comfort and safety, and responding to fear, distress, and grief, my husband’s and my own. This role is exhausting. It is stressful. It is relentless.
It would have helped if someone had said, clearly and early:
“You will not be able to do this alone. You will need help, and it’s important to accept it early.”
2. “There will be financial impacts you may not be expecting”
Unexpected invoices arriving during an end‑of‑life situation add unnecessary distress. When emotions are raw and energy is limited, financial surprises can feel overwhelming. This information is essential for planning and should be routinely discussed, not discovered after the fact.
3. “Your home and daily life will need to change”
I was not prepared for the scale of home adaptations required, particularly living in a rural area with limited access to services.
Ambulance access mattered, from driveways to doorways.
Laundry demands multiplied with incontinence, vomiting, and chemotherapy effects.
Clothing needed to be loose, adjustable, and easy to manage as weight changed rapidly.
Footwear needed to be safe, washable, and adaptable to swelling.
Food planning became a daily challenge as appetite, taste, swallowing, and tolerance changed.
Utility costs increased significantly, particularly heating during winter.
Transport to appointments was physically and emotionally exhausting, managing pain, fatigue, mobility aids, and long travel distances, with the constant concern about how we would get home if he was discharged.
It would have helped if the health team had said:
“Let’s talk through what this might look like in your home, now, in a few weeks, and as things change.”
4. “You are the record‑keeper in two directions”
Someone should have said:
“You will be the observer, recorder, and reporter of daily changes, and the person responsible for remembering and acting on advice from multiple services.”
Caregivers track intake, output, pain, nausea, sleep, activity, mood, behaviour, and function. At the same time, they act as intermediaries between physicians, nurses, GPs, pharmacists, palliative care teams, and emergency services, so making time to note things down was essential.
5. Finally, I wish someone had said:
“This will affect you emotionally, physically, and mentally. What you’re experiencing is normal, and support is available.”
Caregivers are often told to look after themselves, but without practical guidance on how to do that while providing 24‑hour care. Normalising distress and encouraging counselling, debriefing, or reflective practices early matters.
Every caregiving journey is different. Mine unfolded in a small community, but the fundamental experiences apply across metropolitan, regional, and remote settings.
It is okay to feel fragile.
It is okay to feel angry.
It is okay to feel overwhelmed.
If you are a caregiver, take pride in what you are doing. You are contributing to the comfort, safety, and dignity of someone you love at one of life’s most challenging times.
If you are a health professional, I offer these reflections as an invitation to ongoing improvement in how we prepare, support, and partner with family caregivers.
Writing this has helped me. I hope reading it helps someone else, caregiver or clinician, to pause, reflect, and have a different conversation next time.
Where next?
CareSearch including palliAGED offer a number of resources for carers, the person with a life-limiting illness and the health-care team to best support older adults as they navigate palliative care and end-of-life – but we understand you might not have time to go looking for them.
Inspired by this blog, CareSearch introduces a new fact sheet Navigating Caring at Home: 8 practical things it helps to know (pdf) that links you directly from the advice to the support tool or resource, leaving you more time to invest in caring and in your own self-care.
The palliAGED Resources for families (pdf) and CareSearch Palliative Care Support for Patients, Carers, and Families (pdf) are also good places to start on general information and contacts for additional support.
Author
Linda Beaver
Health Consumer Representative
Former Allied health manager and clinician