This is a personal reflection of the journey of my mother’s Alzheimer’s Dementia and my lived experience with her. It recounts the total isolation we both felt (individually) during this tumultuous journey. I was not living with her for most of the time as I was abroad but moved back to London six months before she passed and managed her care both locally and from abroad. When I returned to London there were days when I would sit in my car, having just visited her, and not know whether to laugh or cry just asking myself, “is there anybody out there who understands how I’m feeling, or more importantly, does anybody care?”

I had thought of writing our story soon after my mother passed away in April 2020, but it was too raw then, and I was ‘all over the place’ as they say; I just didn’t have the strength. Now, after giving myself a few years, and following a lot of reflection I’ve documented it and found the experience to be extremely cathartic. I hope that there may be someone out there who can resonate with some of the issues that I bring to light in our story. I’ve narrated the story broadly in chronological order.  It is based on my journey alone and those of my mother’s and husband’s and does not reflect opinions or feelings of others nor is it based on any academic data.

Alzheimer’s Dementia is one of those diseases that most people think/believe will not happen to them or their family members. It’s like any disease that is degenerative or fatal. I believe that we all think that it’s the disease that affects others but not me, or any of my loved ones. Yet the statistics say otherwise!!

Did you know that …

According to the Alzheimer’s Society website, “1 in 3 people born in the UK today will be diagnosed with dementia in their lifetime,” and is today the single largest killer

 They also state that “It is estimated that almost 1,000,000 are living with dementia in the UK”

I was oblivious to the issues surrounding Alzheimer’s Dementia and whenever I heard of anyone living with it, my reaction would be of ‘pity.’ I remember as a child of 8/9, that our next-door neighbour’s mother would walk the streets with her little black handbag, a blue coat and green wellies mumbling to herself, and this was in the middle of summer. Her son mentioned to my parents that she had dementia. This was the only exposure I had to the disease some 50 years ago. It was only when mum was diagnosed, that it hit me literally in the face to the point where I couldn’t ignore it, and it dawned on me that I was in for a long and painful journey.