End-of-Life Care at Home
- Michelle Peat
- Jul 17
- 5 min read
Updated: Aug 7
Caring for a dying family member at home is a journey that we as a family have been on with Mum and with Dad over the last two years.
It was not easy, but it's a privilege. And like anything, there is a lot of learning that happens along the way. There is no perfect way or formula, and all of our stories will be different.
Caring for a dying family member at home is something that many families here in Aotearoa do. But it's not something I would have been able to do alone.
For both Mum and Dad, there was a team. A small team, but a team nevertheless.
Knowing how to care for your loved one at home with compassion and practical support makes the time more peaceful for everyone involved.
If this is something you and your family are considering, currently going through, or have already experienced, I hope you find my blog helpful and encouraging.
Building a Support Team
One of the first steps is gathering a support team. Being part of the team, uncertainties can be shared and discussed among yourselves. And believe me, we needed team support on a daily!
Your team can include family members, close friends, and professional caregivers. Here in Aotearoa, the dying person's general practitioner (G.P.) and hospice services can play key roles in providing guidance and emotional support.
Hospice works with the G.P., and the G.P is the one who will fill in the death certificate.
Listening to and respecting the wishes of your dying family member is not always easy to do. In the case of our dad, who refused hospice until the last two weeks, it was tough going!
Watching him struggle was incredibly sad and stressful, as in my mind, he did not have to be doing it so hard. But Dad died as he lived, on his own terms. And that was important to him, and at the end of the day, we had to respect him for this.
Thankfully, during the last couple of weeks, he agreed to receive the pain support he needed. And honestly, when he finally agreed to have hospice support, it felt like we also got the medication! The relief was incredible.
Tips for building your team:
Who will be the key family members or friends who can share caregiving duties?
Contact your local hospice early (if agreed to!) to understand available services.
You will need to include the G.P.
Having a team reduces the pressure on any one person and ensures your loved one receives consistent care. We had a rotating core of three for Dad. And with Mum, we had a rotating core of four, with family and friends coming to visit and swap out the core for short periods of time. Providing full-time care is tiring and ongoing; learning to say yes is important.
Taking Care of Yourself
Caring can be physically and emotionally draining. It’s essential to look after yourself and each other.
Ensure you all take time out, even if it is just to go for a walk, take a trip to the grocery shop, or the chemist. We took turns at night watch, morning watch, day watch, etc.
Get creative and build a roster of care, not only for your dying one, but for the care team too. Remember, caring for yourself enables you to continue to care for your loved one.
Respecting the Voice of our Loved One
Ensuring our loved one still has a voice and taking the lead from the dying person is a very important aspect of support. They still have autonomy. And I know that can be hard when we see them in pain, especially when or if they are refusing medication or even hospice involvement.
Mum was lovely in the way she welcomed help; she talked freely about dying and what she would like after her death. She welcomed hospice early in the journey, and included friends, family, and the care we gave her. She was thankful and gracious. We listened to her voice.
Dad, on the other hand, fought death tooth and nail; he did not want or accept the limitations of his illness and dying. He was not gracious or thankful. We still listened to his voice.
Coming back to the belief that Dad needed to maintain his autonomy over and during his own dying process was what helped us not feel totally overwhelmed.
It was hard to watch him in so much pain. Even so, we encouraged each other to continue in our foundational belief that he needed to be listened to, and it was what he wanted: to die at home on his own terms.
Some ways to have conversations that matter:
Ask gentle questions about their wishes and feelings.
Create a calm environment where they feel safe to express themselves.
Include cultural or spiritual leaders if desired.
Adapt care routines to reflect their preferences.
Speak openly if needed, but watch for their response for how far to go.
This time will not last forever, even if it feels like it will.
They will be dealing with their own grief at being at the end of their life.
It can be hard for them to see your grief, so try to contain it around them.
Use your support persons to cry with.
Remember to take breaks and care for yourself, too
Listening closely helped Mum and Dad to feel respected, valued, and supported.
Medication and Symptom Relief
Once medication is agreed to, managing medication becomes a big part of caring for your person at home. Pain relief, nausea control, and other symptom management require careful monitoring and administration.
If and when hospice becomes involved in the at-home care, the nurses will teach you how to handle medications safely and recognise side effects. They also helped us to adjust doses as the illness progressed.
Keeping a medication diary will help track what has been given and when. The nurse will ask you to carefully document this so they can see if any changes are needed. Discuss any concerns you have with your hospice nurse, and they will support you in whatever way they can. Hospice support was incredible for both Mum and Dad.
Spending Time Together
Beyond physical care, spending time is special. This can include sharing stories, listening, or simply sitting quietly together.
Ideas for quality time:
Schedule regular visits or quiet moments during the day.
Encourage family members to share stories or memories.
Use sensory activities like gentle hand massages or favourite scents.
Respect moments when your loved one needs rest or solitude.
You'll understand the times and rhythms that start to get established.
You can say no to visitors if it's getting too much.
At the very end, take the cues from your dying one as to who they want around them.
Summary
End days spent together are sacred. I know we don't always get the choice or luxury of having that time. If you have read this article because you have been given the luxury of time, I hope you found something useful here. If you have read this and are thinking about setting up care at home or have been through supporting at home, I would love to hear from you and your story. To those who have read this and did not have the luxury to spend time with your loved one either at home, in the hospital, or in hospice, my heart goes out to you.
Aroha nui Michelle
Some useful NZ links:
My previous blog on natural burial
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