Carers Conversations

I think the best way to raise awareness for rare dementia and find community is to talk about it. Carers Conversations is a series that gives carers a platform to share their experience.

These are personal stories from young people affected by dementia.

Take a look at our previous episode

In these very special episodes, my amazing Mum Sandy, and I travel through three generations of our family’s story with dementia. Mum has spent more than 20 years caring for her family members who were living with dementia: her mum, Ada (Alzheimer’s and Vascular Dementia), her mother-in-law, Mary (Alzheimer’s), and her husband, Neil (Young-onset Posterior Cortical Atrophy Dementia).

We talk about what it’s like to get the news that your parent has dementia, the heartbreak of seeing your other parent lose the love of their life, like my Nonno (Grandad) being unrecognised by the woman he had been married to for over 60 years. We remember Nanny Mary, the car that wouldn’t start with nothing wrong with it, and the chocolate sprinkles for dinner, a memory that is funny and bittersweet in equal measure. We explore how the caring role felt different each time, from stepping into the role of a daughter for her mother-in-law to facing a diagnosis that was far harder, because my dad was so much younger. We talk about how Dad’s symptoms were put down to stress and grief after losing his own mum, how long it took to get answers, and how Dad feared being judged because of his diagnosis. We also talk about the words people say out loud when dementia is in the family, like both of our fathers expressing to us that they didn’t want to ever have to live with dementia.

Sandy shares her brilliant advice for other caregivers and people who have just received a diagnosis, and we acknowledge how many people do not see themselves as carers because they are simply helping out someone they care about. I am sure Sandy’s honesty around grieving a future you thought you would have, but instead was taken by dementia, will resonate deeply for many. We hope you enjoy these episodes.

Want to share your story?

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Want to share your story? *

I understand that as carers, we have very little time to spare, but if you would like to use some of your time sharing your story and experiences as a dementia carer, then it would be a pleasure to hear from you.

Go to the contact form in the top right corner, or send me an email with the subject ‘Carers Conversations’.

I know I find comfort in shared experiences, and I hope this series brings the same comfort to others in similar situations.