Dad was diagnosed with dementia in 2018, at the age of 81.  In September 2023, I published a book about the life lessons our family learned as we walked alongside Dad, post diagnosis. As well as creating a legacy for him, the book was an attempt to reframe his diagnosis, from an ‘absolute’ negative to a ‘potential’ positive, and reduce fear, stigma and misunderstanding in the wider community about the suite of diseases which fall under the dementia umbrella.

Dad died peacefully at home, in November 2023, surrounded by his family who loved him dearly. A little over two weeks before he died, our family changed the ‘where’ in Dad’s end of life plan, moving him out of the nursing home he had lived in for just over two years and back into our family home to die. It was an unconventional step; nevertheless, a step we remain very glad we took. A home death for Dad delivered us immediate peace and I’d like to share a bit of our story with you - a story that is, ultimately, about exercising choice at the end of life.

Dad had a fall in August 2023 and, as we witnessed a deterioration in his health and mobility over the next couple of months, it became clear Dad was ‘on the downhill slide’ and rapidly approaching the terminal phase of his disease.  Mum and I began to feel increasingly anxious about the possibility of Dad dying at the nursing home without family present, or even worse, alone in the middle of the night. I left him one evening, bawling and berating myself for having ever put him into a nursing home. It had effectively been me who had “called time” on Dad living at home with us, due to the immense stress and ongoing emotional impact on Mum. Why? I asked myself. Why hadn’t I just somehow made all of that work? Then we wouldn’t be in this situation.

Amidst the guilt and self-blame, a random thought forced it’s way into my head - “maybe we could take Dad home?” Perhaps it wasn’t too late? Surely there would be a way to do it.

I didn’t want to let that ‘planted seed’ go without seeking advice from those in the field as to whether it would, indeed, be possible to do such a thing and, if so, what we would need.  The whole family were on board with the idea of facilitating Dad’s death at home - we were all of the opinion that his first preference, if he had been able to convey it to us verbally by that time, would be to spend his final days at home. 

So, we set the intention of providing Dad with ‘a good death’ and put our minds to (a) developing a ‘contingency plan’ across all areas of our lives and; (b) gathering the equipment and supplies we needed to safely make it happen.

Then, when the clinical indicators suggested the timing was right, we transferred Dad home – motivated by our love for him to ‘get it right’. He died peacefully six days later, comfortable and pain-free, surrounded by familiar, reassuring voices.

People die at home every year, supported by private nursing staff, family carers, community services, doulas and specialist palliative care teams and, in that sense, we are no different to thousands of other families who have chosen a home death for their loved one. For us, these were the key things which ensured the choices we made delivered a positive outcome for all of us:

• We engaged with the advanced care planning process soon after Dad’s diagnosis, so we had a clear idea of his wishes, his beliefs and his value base;
• We always maintained an open dialogue and good relationship with his nursing home, which proved invaluable when it came to a discussion about transferring Dad home, and getting the timing right to do so;
• We were a proactive family who kept a close clinical eye on where Dad was at, and sought advice about his life expectancy as his condition deteriorated;
• We felt confident changing the end-of-life plan when it no longer felt like the right one;
• We were well prepared, both practically and emotionally, and accessed palliative-specific (private) support to oversee the care at home process;
• We had a willingness to do whatever it took to provide Dad with what we were certain would be his preference for his final days;
• We had capacity, with my husband using long service leave and me taking time off work and, finally;
• We created time, shutting off other areas of our lives to prioritise Dad; be in the moment with him; and allow space for the end of his life to play out.

Dying at home with dementia is not for everyone and it would be farcical to suggest all families should feel compelled to make death at home a reality for their loved one.  But, by sharing our family experience, maybe I have opened up options for your loved one - if their choice is to remain at, or return, home to die - you did not realise were available. With support, the pathway our family took is one which could be reproduced by others, if that was the wish and preferred choice of the person dying.  And that is the key theme here – choice. We simply realised we had a choice to change the assumed end of life plan for Dad and decided to exercise that choice at the end of his life. For that, we will always be grateful. 

Lisa Twigg  daughter, Social Worker, guest speaker, Author

Books  1. “80 years without Dementia. Diagnosis Doesn’t Define Life”

2. (coming soon) “The Gift of a Good Death. Our Palliative Dementia Story”

FB  Eighty Years Without Dementia