The complexity of grief and dementia

Maria’s main goal during the final stages of her mother Antonia's life was to ensure that her death, after nine years of living with dementia, was a peaceful one.

“While I’m grieving the loss because she’s no longer here I know that she was happy and peaceful,” Maria said. “All the things that needed to be said were said so, in some ways, there was also a joy for both of us.”

Maria worked closely and collaboratively with those caring for her mother Antonia at the aged care facility in which she spent her final years.

While it enabled her to advocate for her mum, the ongoing stress took a toll on her own health.

“Dementia takes you to places you never thought you’d go,” Maria said.

Navigating the aged care system

She described being on edge every time the phone rang because it would often be the aged care facility ringing about her mother.

Some of Maria’s helplessness was compounded by having to navigate the health and aged care systems and, while she said the staff and specialists she dealt with were wonderful, it was complex.

Maria had sessions with a Dementia Australia counsellor and the support of the Nightingale Nurses (dementia palliative care nurses who operate in South Australia and some areas of New South Wales), both of which helped her through such a difficult period.

“Counselling gave me the forum to have those difficult conversations and to deal with the feelings of helplessness and defeat,” she said. “To have those feelings validated was helpful.”

It has taken Maria some time to work through the emotions and, while the grief is ongoing, she has found some peace with it.

“I’m grateful for my mother’s life – it taught me some very valuable things about how to live my life … and how to die.”

“With her death came a whole new phase of grief”

Dementia Australia Ambassador Jess Redmayne describes the gradual grief of losing someone with dementia.

“When you gradually lose a loved one you also gradually grieve them,” Jess said.

“When my Mum passed away, I naively expected to overcome her passing quickly for I had already spent a decade watching her go and experienced the seven stages of grief over such an extended period. 

“However, with her death came a whole new phase of grief. And that is not to say that all grief is built with immense sadness. 

“The grief I experienced at the end was one of reflection – reflection not only on her life but mine and how she impacted who I had become.”

Jess said it was important to never judge grief or the stage of grief you were experiencing. 

“I don’t think we ever truly complete our grieving,” she said. 

“It will forever live with us and I sincerely believe it is because grief stems from great love, and I am grateful to have loved so deeply and to have been so loved.”

Finding hope amidst grief

In the book “Loving Someone Who Has Dementia”, Dr Pauline Boss outlines various ways to stay resilient while caring for someone who lives with dementia, as well as how to find hope amidst feelings of grief.

The book is available from the Dementia Australia Library where you can also access a wide a range of resources on grief, loss and dementia. Click here to find these resources. 

Support and more information

If you or someone you know would like support please contact the National Dementia Helpline on 1800 100 500 or visit our website.

The Helpline is a free service that operates 24 hours a day, seven days a week, 365 days a year.