Grief and dementia – ‘a rollercoaster of emotions’

Debbie's grief began when her husband Warwick was diagnosed with dementia, leading to a ‘rollercoaster of emotions’ over many years.

“Getting that diagnosis on paper was a massive grief,” Debbie said. “But throughout it there were lots of losses – when his signature deteriorated, not being able to dress himself, having to give up his licence – they were all difficult times.”

Debbie’s 40-year career as a registered nurse and nursing manager in aged care, gave her insight into dementia and palliative care best practice, so she was determined that Warwick would have the best care possible.

Her husband had always been a quiet and polite man but as his dementia progressed Warwick’s behaviour changed, which was when she made the difficult decision to admit him into the secure dementia unit at an aged care facility.

It happened during the COVID lockdown period making an already difficult decision particularly challenging.

“It was one of the hardest decisions of my life,” she said.

One of the consolations was that Debbie was able to spend a couple of hours every day providing personal care to Warwick during the times when he was most unsettled – the late afternoon.

“I was so grateful for that time with him,” she said. “His behaviour was because he was frightened which was heartbreaking to see.”

Six months after being admitted to the aged care facility Warwick died and Debbie faced the next stage of her grief.

It was only when she started speaking with a counsellor that she realised that she was not only dealing with the long-term grief associated with her husband’s dementia but also the unresolved grief of losing both her parents when she was a teenager.

“My grief basket was overflowing,” she said.

The counselling helped her work through the complex emotions and find the light in the dark.

“I’m grateful that Warwick never forgot me,” she said. “I can now think of the beautiful times we had and how lucky I was to have had that marriage.”

Debbie is now a volunteer Peer Leader with the Connecting Peers Program and provides telephone support to other women who are facing the challenges that she went through.

“I really enjoy this role and hope that through my lived experience, I can support others in similar situations,” she said. 

“You’re in denial for a long time”

Jim, who co-hosts Dementia Australia’s podcast Hold the Moment, has also experienced the emotional rollercoaster of life with dementia. 

In Episode 2 – Future planning of the podcast, Jim and his husband Tyler talk about how confronting it was to think about the future and the difficult decisions they had to make following Jim’s diagnosis of younger onset Alzheimer’s disease.

“I think it was very emotional because it just felt very real,” Jim said. “I think the worst thing for me was thinking about what stage I would go into care.

“These confronting discussions just felt a bit of an out-of-body-experience, as though it wasn’t real and I think you’re in denial for a long time.”

Jim said that while the conversations he had with Tyler and his adult children were very emotional, his focus was now on the present.

“I feel really good and I'm doing everything I possibly can to try and stay good, so we're just trying to enjoy the now,” he said.

Support and more information

You can contact the National Dementia Helpline for information and advice, support or help to connect you with services. Phone 1800 100 500 or visit the website.

Visit the Dementia Australia website to find out more about Connecting Peers Program.

You can listen to the Future planning episode of Dementia Australia’s Hold the Moment podcast on our website or wherever you listen to podcasts.