Carly Burne’s mother, Rose-Marie was diagnosed with Frontotemporal dementia in 2017. Despite the challenges of the past four years, Carly reflects on the positives following her mam's diagnosis.
Mam was diagnosed with Frontotemporal dementia (FTD) in 2017 at the age of 61. Frontotemporal dementia had entered my life a year before her diagnosis, through the passing of my uncle. His death certificate stated Pick’s disease.
“Pick’s disease? What on earth is that”, I thought.
Spotting the signs
It wasn’t until I started to search the internet that I came across Pick’s disease, also known as Frontotemporal dementia (FTD). As I began studying the causes and symptoms, one in particular stood out, that this disease can be hereditary in families. In that moment, you could almost see a lightbulb go off above me.
Following my uncle’s passing in 2016, Mam had been going through a divorce for about a year. From my perspective, I had placed her lack of empathy, repetitive and unusual behaviours, and anxiety as a result of this ongoing stress. Mam would seem distant, lighting cigarettes minutes apart from one another, repeating stories hourly.
Something just didn’t feel right to me.
I remember sharing this information with my brothers Stuart and Jamie, and after a long battle, in August 2017, Mam was diagnosed with Frontotemporal dementia.
Finding the right care home for Mam
Before we moved Mam into a care home, in 2018 for three months - between May and August 2018 - she was placed on a dementia care ward in hospital while we awaited a suitable care home to become available for her.
In August 2018, we got the call letting us know that there was a room available for Mam in a dementia care home. We were able to visit and look around whenever we wanted to. My partner Callum and I went the following day.
I was dreading Mam going into care because I was worried about the environment not stimulating her enough, but I was quickly put at ease when we arrived.
The nurse that showed us around was so welcoming and the care home was nothing like I thought it would be. The corridors were so colourful, there was a hairdressing station and even a post-box!
The corridor walls were covered with lots of pictures from the 50s and 60s. We were told there was an activities team that come around and I could see all over the walls the types of fun things they got up to. I was a little jealous at all the fun they had!
As we got shown a room that would look like Mam’s, the first thing I noticed was the door - it looked like a front door! I had never seen this before, it was awesome.
A pleasant surprise
I was also told that the care home follows the butterfly model which was introduced by David Sheard from Dementia Care Matters. So naturally, when I got home, I looked this up.
I was just amazed at how much dementia and care had changed in terms of its environment and approach.
I felt this all made the process of moving Mam into care a little easier for us as a family. Especially during the coronavirus lockdown, the staff at Mam’s care home were lovely at sending us photos and updates of her, which I was really grateful for. We hadn’t had any real contact with her from March 2020 to around July 2020 – four months in total.
The first reunion was a window visit. I felt really anxious prior as I just wasn't sure how she would react, or even me for that matter. I'll never forget the smile on her face as me, Callum, Jamie, and Stuart stood there taking turns to talk with her.
Over the past recent months, we have been able to have lots of garden visits with Mam and have been taking her out of her care home in a wheelchair for walks. Getting her out and about again has made such a difference to her well-being and ours.
Reflecting on Mam’s dementia diagnosis
Almost four years later, I could have never imagined how her diagnosis would impact our relationship. Growing up Mam and I never had a close relationship, we never hugged or said, “I love you”. She was by all accounts a great mother but had gone through so much over her lifetime.
You often hear of families being torn apart by this disease, but some of my most treasured moments with Mam have been after her diagnosis.
Her diagnosis gave us the chance to become closer in a way we never had before.
Throughout these past four years I have said “I love you” to Mam more times than I can remember. Hugging her tightly after each visit to her care home.
Mam's diagnosis has allowed me the quality time we had been needing all these years together. It’s been so important for me to make as many memories as I can with Mam, as we just don’t know how much time we have.
Making memories that will last
We have walked, sang at the top of our lungs together in my car – Psycho Killer by Talking Heads was a fave for us. I have taken so many photos #makingmemories and recorded videos that I regularly look back on.
I will never forget asking Mam what her proudest moment was while we sat on a bench in sunny July 2019. “Having you and your brothers”, she said – a conversation that I know I will cherish forever.
Mam is currently still living in her dementia care centre. She has unfortunately progressed since the pandemic. The lack of contact and increased isolation have taken a toll. As a family, we regularly visit her or catch up via facetime.
I continue to tell her how much I love her and how proud I am of her.
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