I was with my mum on the day she received her diagnosis of Alzheimer’s. She was just 72 years old.

We came out of the appointment and sat together in the car and shell shocked, we really didn’t know what to say to each other. After a minute or two mum burst into tears and said, “Oh my God!”

Having worked for some years as a care worker in mental health institutions, she knew how things might turn out. She was frightened that she too would be “locked up” for her own safety and the safety of others. She turned to me and said “Please Mandy, don’t let me go into a care home or mental health institution! If this gets bad, just put a pillow over my head”

Of course, I made that promise and somehow managed to keep it over a 12-year journey of dementia (without having to use any pillows!) and I was pleased to be there for my darling mum.

Alzheimer’s is just one of many forms of Dementia and believe me it can be very scary indeed to get a diagnosis.
It wasn’t too bad at first, just forgetful and confused at times, mum was simply in need of some extra support at home.

My dad was her main carer for the first two years and whilst he found things frustrating, he still clearly adored her. This transition was never going to be a smooth one and he found things quite difficult. The realisation that he was losing his wife by degrees to this terrible debilitating disease was heart-breaking. Instead of taking those planned holidays together they were trapped in a round of one crisis after another.

In year 3 mum began to “wander” and dad often called me to report “mum is missing again!” and we would send out a search party to bring her home.
At home, mum couldn’t co-ordinate simple tasks like making a cup of tea. A piece of pork pie instead of a tea bag. Juice instead of milk. The kettle put in the fridge. Unable to negotiate getting in or out of the shower. Using red nail polish instead of lipstick. Things simply got worse over time and as mum lost her independence, her confidence and her sense of purpose went with it.

The next thing to go was her speech. She really could not find any words or articulate her thoughts. Dad was now truly broken and not coping at all. I gave up my job and went to stay with mum and dad to support them in this time of crisis. I was in effect the full-time housekeeper and provider of personal care too. I just wanted mum and dad to be safe.

When dad had a spell in hospital, mum went into a care home for temporary respite and things did not go well. I now truly understood my mums request about not going into care! I took mum home that afternoon. She never went into a care home again.

Of course, not everything about living with dementia is a negative experience! We did have some fun and some very happy and uplifting moments. With very few suitable places to take mum for recreation, we took advantage of a local Memory Café where we felt safe and cared for. There was always music there and mum seemed to light up when we attended. One time, I got mum up to dance to one of her favourite songs – “You’ll Never Walk Alone” and miraculously she started to sing this out loud in her superb soprano voice! I was astounded at the sheer joy in mum’s face. Even though she couldn’t talk but she could sing!

This led me to think about how I might find a way to offer more events like this and within a few weeks I had organised a Memory Café of my own! This soon grew in popularity and people started to ask me if I knew of other services for people living with dementia. 

This prompted me to form a respite and remedy group called “Memory Lane Day Care” and we started out with four people coming just once a week. Now seven years on, we have a dementia care business looking after up to 20 people, six days a week. And all because of my mum!

Memory Lane Care provides a loving and caring environment with lots of music and stimulating activity to help keep the brain active and alive. With good day care services, we have found that people can often stay in their own homes for much longer. At this point I have to say that good care homes have a very important role to play for many who simply have no alternative and the love and care they provide can be just the ticket for many who are otherwise isolated.

My mum Margaret was a wonderful mother and friend to me all my life. As our roles swapped and I became her full-time carer, our relationship and my love and respect for her grew all the deeper.

We spent a lot of time together watching her favourite movies, doing her hair, cuddling her great grandchild, and even making the most of lockdown, taking the time to enjoy life together as a family. I do realise how lucky we were compared to other families who were separated from each other for long periods of time.

With the help of the whole family, mum never went into full time residential care, and I kept my promise to her. Mum died some 12 years after her diagnosis. Mum passed away at home surrounded by me, my sister and I, and all her family around her.

The legacy she leaves behind is that she was the inspiration for Memory Lane and all that it provides for people living with dementia and the support we give to their carers. I am so proud of mum’s strength and character and she went to survive against all the odds and all of the challenges dementia flings at you.