Posted on July 24th

Deterioration, decline, and degenerative are all words associated with Alzheimer’s disease. At the beginning of this journey, they were just synonyms I read on the internet.

However, now I can fully appreciate their meaning. I know their impact on my dear family and Mum, Sandee, who was sadly diagnosed with early onset Alzheimer’s in 2014 at the age of 61.

My baby boy, Luther, has just been born on 5th July, so this has been a very reflective period for me.

I had so many questions throughout the pregnancy, missed opportunities, scans, appointments, shopping experiences and joyous moments that I know my Mum would have been delighted to have been able to share with me.

Noticing changes in Mum

I was 17 when I started to notice that Mum was not quite herself and was becoming forgetful. This was obvious through the simplest of tasks.

She would put a wash on, forget she had done it, and put the same wash on again.

Initially I thought this might be menopausal but over time things became clearer – her short-term memory was suffering. I started to make excuses in my head. Mum was just tired. She was a support worker at a comprehensive school which required energy, attention, and resilience. I had not even considered that this could be dementia. 

I left home for university at 18 and came home during the holidays. These occasional visits made these skills Mum was losing more obvious to me.

I thought about Mum a great deal whilst at university and I started to research her symptoms in my final year. I watched YouTube videos on short term memory loss, because at this point her long term memory was excellent. 

It was very hard to watch, but I wanted to feel prepared to educate my family and friends.

This was when I started to accept and process that she might have dementia.

Mum’s symptoms progressing

Mum became less proactive within the household, meaning Dad picked up all duties.

My parents were part of a close circle of friends who regularly went abroad as a group. Mum had such a love for travel, history, and architecture, but these trips and her involvement started to fade over the years. 

I started to notice at social gatherings that Mum became quieter, introvert and was more of a listener than a talker.

This sense of ‘retreating away’ made me recognise that things were getting worse.

How does dementia change a person's behaviour?

When I’d come back from university to live at home, there was no room for ‘protecting me,’ I witnessed first-hand how vulnerable Mum had become. I noticed her reliance on my dad day to day. 

We kept these changes within the family and were all confidential until we had a confirmed diagnosis.

Getting Mum her dementia diagnosis

In my early twenties, Dad took Mum for regular memory assessments. Her scores were getting worse.

I remember as clear as anything the day that Mum and Dad told us about the diagnosis.

All five of us were sat in the lounge together. Dad spoke very clearly with his hand resting on Mum’s lap to comfort her. Mum didn’t know where to look. She looked timid.

Naturally, Dad took the lead with the conversation as he is the pillar of our family.

One of my brothers was quiet and deep in thought. My other brother said, ‘What does this mean?’ Since Dad’s mum had had Alzheimer’s, he was the only one who truly understood the difficult road ahead

The communication between myself, Mum, Dad, and brothers could not have been stronger throughout this heart-breaking process. 

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