Dementia is now the #1 cause of death for women and men in Australia. It’s terminal with no known cure for its various form of which there are over 100. The form of dementia most often spoken of is Alzheimer’s.
In this series our aim is to share real life experiences so that if you find yourself on this journey, or if you already are, you feel less isolated and alone. That others understand and see you and your struggles. We also want to share the light in the dark, practical insights and tips to help along the way.
We will also welcome conversations with those who work in dementia care and those who work in its varied support systems.
We are based in Australia, so many of our references are local. You may have similar services and support in your area, just with a different name. Any resources mentioned in these conversations will be listed in the show notes for you.
Thank you for joining us.
This is Margriet’s Story.
Margriet and Dan were married for over 53 years. He passed away after a 7 year journey with Striatonigral Degeneration (a disease closely associated with Parkinson’s) and with that, aspects of dementia which intensified, as the disease progressed. Dan was in his late 60’s when he was diagnosed.
In this open and honest conversation Margriet and I talk about:
>> The Early Signs that something was different, that then lead to a diagnosis.
>> How this disease played out for Dan
>> The Never Ending Journey of Difficult Decisions and Choices – Dan’s diagnosis had no treatment or cure. It was a downward slope of seemingly endless, difficult decisions to make.
>> Impacts on Margriet as Dan’s Primary Carer – we talk in great detail about this because it’s not spoken of enough. The impact of caring for someone with dementia, with an incurable disease is enormous. It’s deeply under-appreciated and under-valued.
The exhaustion and lack of sleep. The grief (ambiguous loss). Getting through the daily grind and nitty gritty of doing it all. The shame. The guilt.
Anxiety and Depression - Margriet wanted to highlight this as a very important part of the conversation. Her experience then and now.
>> What Margriet Did To Help Her Get Through: we call this Care For The Carer. Learning to put your needs first for survival and self health and what Margriet found helpful to include regularly in her week. She calls these ‘the circuit breakers’.
>> Navigating the Health System / The Aged Care System – the complexity of these systems to get the care needed. The importance of seeking help of those who know ‘how to’ (like the hospital social worker and Aged Care Providers) and taking in various care services on offer – as difficult and confronting as that may seem at the time.
Margriet shares the help she found invaluable. The simple and seemingly ‘small’ things that meant so much in the overwhelm.
>> The Most Difficult Day of This Journey - you may find this surprising. I didn’t. It was the most difficult day on my dementia journey with my Dad too.
>> How Art Saved Margriet and Her Relationship with Dan.
>> Life After Dan – As an Art Medicine Practitioner incorporating meditation, writing and painting. It’s the gift she gave herself in recovery and now helps others to do the same.
Find out about Art Medicine here. Margriet is referenced there.
>> Final Thoughts – Margriet’s final thoughts, important messages she’d like to gift you.
· Inform yourself as much as you can but don’t Dr Google too much. Go to your doctor, your GP (primary care physician/family doctor) first.
· Take the journey one step at a time. Because it’s overwhelming and there is much to take in and consider. It’s confronting. Like exploring a new country and language with many unknowns.
· Talk to someone who’s going through it too, because empathy and compassion are vital. This is an isolating journey. Connection is critical.
· Love is the answer. The light in the dark to carry us through.
Margriet read the poem ‘When I’m No Longer Here’ to end our conversation. It was a beautiful parting gift. The poem is from the book Wild Hope by Donna Ashworth.
Donna posted this on her Facebook page here:
WHEN I’M NO LONGER HERE
When I’m no longer here,
say my name to call me near.
I will calm your disarray,
move the mountains from your way.
I will dry your falling tears,
whisper comfort in your ear.
When I’m no longer here,
say my name to call me near.
When I’m a glowing star,
do not think of me as far.
I am with your inner child,
hoping you’ll embrace your wild.
Seeking joy in every day,
finding jewels of light in grey.
When I’m a glowing star,
do not think of me as far.
When I’m no longer here,
let me rid your heart of fear,
put it down upon the floor,
I’ll take it from your door.
Give me then your worry too,
let me carry it for you.
When I’m no longer here,
let me rid your heart of fear.
Thank you Margriet for your time, your kindness and your compassion. Your want to share your story so others who many be on a similar path, don’t feel so alone. For your wisdom and practical insights and tips. For your love and care of Dan.
Thank you.
Anita xx
RESOURCES
In this episode helpful resources were mentioned. Here they are with links so you can explore a little deeper.
Dementia Australia - https://www.dementia.org.au/
My Aged Care - https://www.myagedcare.gov.au/
Australian Unity - https://www.australianunity.com.au/
Movement Disorder Clinics – Dan and Margriet attended a local clinic in Melbourne, Australia. They are located across Australia. Search ‘Movement Disorder Clinic near me’ to find yours. Here is a link for general information provided by the Royal Melbourne Hospital.
Dance For Wellbeing & Parkinsons - https://dance4all.online/
This episode of Midlife Unfiltered is part of a Dementia Series to be rolled out in 2026. Important conversations to break down the stigma and myths associated with dementia.
Personal stories of loving someone who has Dementia. Those who care for them as a professional and those who help with supportive services and knowledge.
Most of us are ‘touched by knowing someone who has/had cancer’. It’s Dementia’s turn now. Dementia will touch the lives of each of us. A condition growing in numbers globally. Let’s open our hearts and minds to understanding more.
If you are loving someone who has dementia our heart is with yours. Both Erica and I have been on that journey having lost a parent to Frontotemporal Dementia. A different lived experience but one with many similarities. With deep compassion for what you are going through.
You are not alone. This is hard. It’s tough. We see you.
Anita & Erica xx
p.s. The quality of this recording is not brilliant at times. I am sorry if it’s distracting. The transcript may help to fill in the ‘stuck gaps’ for you. My internet connection on the particular streaming app (not Substack) did not play nicely on this day. Sorry. Anita.
