An ordinary family ... living with dementia
This is a series of blogs charting our CTO's (Matt's) experience of living with dementia within the family. At Supersense Technologies, we are developing a product that empowers families and carers with insights, alerts, and support to improve the quality of life for those they care for, while enabling respite for carers. We are sharing Matt's experience to encourage knowledge sharing and community building, to help us collectively fight back against dementia.
I’m young, I think, and yet I have already chewed through a slice of my ‘sandwich years’ courtesy of dementia. Specifically, my mother (and therefore our family) has been living with dementia for a number of years.
My experience drove me to start working in the care sector, and as a result I have been fortunate enough to engage with so many kind people who are going through similar experiences. My family has been through a lot in a short amount of time. I have taken missteps throughout and learned a lot in the process. So, I am starting a blog about my personal experience as part of a family living with dementia for the first time (and fingers crossed, the last time) to help other people get through it a bit smoother than I could.
In upcoming blogs, I’ll walk through various events that were significant for me and the people who support my mother. Based on some of the primary research I have been doing as part of my day job, these events seem to be common for many families living with dementia. With that in mind, each blog will include signposts to resources that I found to be helpful during the experience I am referring to.
As they say, if you’ve spoken to one person with dementia, you’ve spoken to one person with dementia. With that in mind, I fully welcome any contributions of experiences, helpful resources, etc., from readers – this remains a continuous learning process for me.
Let me start with this…
In 2019, two major life events happened to me: my wife and I welcomed our first child into the world, and my mother started to show the early symptoms of dementia. The latter observation is in hindsight – I don’t recall recognising the symptoms at the time, but now it seems obvious. Mum was in her early seventies, which feels so young, and physically fine, perhaps blinding me somewhat. Covid certainly came at the worst possible time, and by 2021, it was clear that Mum was struggling with her situation (living at home alone), and we finally got confirmation through a diagnosis.
Fast forward to now, a lot has happened and changed in a short amount of time, and I have so many stories to share in the coming blogs. Some difficult, some funny, and some scary – to whet your appetite, I’ll be talking about things like:
Hours and hours spent trying to figure out what government support is out there, what we qualify for, and how to apply.
Frustrating days of not being privy to Mum’s health because we didn’t have power of attorney.
Proudly presenting Mum with a shiny new smartwatch (to keep an eye on her health and wellbeing), only for her to stash it in a drawer when I leave, and never touch it again.
Organising carer visits for someone who is in no mood to accept it.
Days, yes days, of search and rescue when Mum decided to go wandering (and trying to ignore negative misinformation spread on social media about my family).
Things remain a challenge, but we are in a better place than earlier in the year now that Mum is settled in a wonderful care home (every family has their breaking point – the time to press 'go' on moving into a care home. Ours was when Mum went missing, even with 24/7 care). So, I feel ready to share, and hopefully help others. I plan to release these (at least) monthly, so do keep an eye out, and let me know if there is anything you would like to see discussed in the comments.
Today’s signpost:
There are a number of Alzheimer’s Society Memory Walks in the coming weeks across the country (https://www.alzheimers.org.uk/memorywalk). A few of us at Supersense Technologies will be volunteering at the Cambridge Memory Walk tomorrow (23 Sep 2023 https://www.alzheimers.org.uk/memory-walk/find-a-walk/cambridge).
Come along, support, and/or donate to help fund vital dementia support and research.
