Growing old together is not going to happen as we thought it would
Living with dementia can bring about various emotions, including grief.
But it’s not just grieving about what was, it can also be grief about what the future will bring.
The dreams that Jonathan and his wife Sophie shared about their future have dramatically changed since he was diagnosed with younger onset frontotemporal dementia last year.
“We’ve always talked about growing old together and I now know that it’s not going to happen the way we thought it would,” Sophie said.
Instead, Sophie is now focused on keeping Jonathan living well in the present and the time to come.
"He's got the right to have a fulfilling life,” Sophie said.
“As his family, we have to make adjustments to ensure he can still be independent, be respected, have friendships."
While Sophie understands that the future looks different, it’s not always easy to cope when someone you love experiences these changes, which is why the couple reached out to the National Dementia Helpline after Jonathan’s diagnosis.
“I was directed to online events and I found webinars,” Sophie said.
“I also started downloading books and the Dementia Australia website has got a whole lot of facts sheets about mild cognitive impairment, so I just literally read everything I possibly could.
“It didn’t stop me crying but it helped me understand how I could be better at coping.”
Grief when things change
Grief can also arise when loved ones living with dementia express themselves in different ways or through thought patterns than they’ve previously had.
Sophie used a recent incident of attending a medical appointment as an example.
"Jonathan just got out of the car, crossed the road and kept walking,” Sophie said.
“Never in 30 years has he ever left me to walk by myself."
But it’s not just carers or loved ones who experience grief. Noticing these changes in yourself can also trigger these feelings.
Jonathan says he has come to terms with various changes including only being able to follow one topic and conversation at a time.
"Even if I was sitting there having a conversation with one person and there were another two people next to me having another conversation, I couldn't follow," Jonathan said.
Ambiguous Grief
National Dementia Helpline Advisor Andrea explains that grief can start much sooner than people expect.
“Often it’s thought that grief happens at the end of life for someone, but what we know and hear is that the grieving period can start from the point of diagnosis,” Andrea said.
“It’s a term called ambiguous loss because your loved one is still here but there are losses that are related to the diagnosis and the condition.”
Those losses can come in the form of many life aspects and uncertainty about what living with dementia means going forward.
“Changes in their relationship, losses around the future and future plans they once had,” Andrea said.
“For someone experiencing that, it’s hard to share those losses because they aren’t obvious to anyone else nor is the anticipation of further losses along the way.”
Jonathan is grateful his family has support and services from Dementia Australia that they can access when they are struggling.
“The knowledge that Dementia Australia is supporting them is fantastic and having the services that they have, has just made every difference,” Jonathan said.
For support with grief
If you are experiencing grief or loss, or need any type of dementia-related information or advice, contact the National Dementia Helpline 24 hours a day, seven days a week, 365 days a year on 1800 100 500 or via our live chat function to find out how we can support you.
The holiday season can be particularly difficult, but a donation to Dementia Australia this Christmas can make a real difference to those people in the community who live with dementia every day.