I was with my mum on the day she received her diagnosis of Alzheimer’s. 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 bursts into tears and said ‘oh my God!’

Having worked for some years as a care worker in institutions for people with dementia, 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.

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. Whilst he found things frustrating and had to learn how to cook, and take responsibility for the cleaning, shopping, and household administration tasks, he still clearly adored her. This transition was never going to be a smooth one and he found things quite difficult. At the same time, he was beginning to realise that he was losing his wife by degrees to this terrible debilitating disease. It was heart-breaking to see the decline in him and the worry etched on his face. Instead of taking those planned holidays together they were trapped in a round of one crisis after another.

In year three 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, she couldn’t coordinate anything. Simple tasks like making a cup of tea were now practically impossible to do. 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. A bit of shoplifting – but actually just not remembering to pay! Using red nail polish instead of lipstick. Things simply got worse over time and mum lost her independence, her confidence, and also her sense of purpose went with it.

The next thing to go was her speech. She really could not find any words. At least she could not articulate her thoughts. Dad was now truly broken and not coping at all. I gave up my career and went to stay with mum and dad to support them in this time of crisis. I was in effect their full-time housekeeper and provider of personal care too. Incidentally, (and I mention this only in support of other family carers), I was paid £63.40 per week by DWP for providing this caring role.

During mums fourth year of her dementia journey, Dad had a spell in hospital and mum went into a care home for a respite visit. Within two weeks she was doubly incontinent. I soon came to realise that they just didn’t have enough staff to find time for toilet prompting or accompanying and it led to people sitting in soiled pads for lengths of time. I visited mum every day on the way back from visiting Dad in hospital and I often found her sitting alone in a corridor with a vacant expression on her face. Bored to tears and wearing somebody else’s false teeth and somebody else’s knickers too (despite labelling all of her clothing!). I now truly understood my mums request about not going into care. I spoke to the care team and 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 mums face. The fact that 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 grew in popularity very quickly and people started to ask me if I knew of other services for people living with dementia and their carers.

So, I quickly formed a little respite and remedy group called Memory Lane Day Care. We started with four people coming to our little day care just once a week. Now, seven years later, we have a fully-fledged dementia care business where we look after 20 people for six days of the week. And all because of my mum!

My mum Margaret was a wonderful mother and friend to me all of 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.

During the last year of her life, she became very frail as her body ceased to respond to the brain signals. I nursed her at home with the help of home carer visits, district nurses, and the support of my family and my staff at Memory Lane Day Centre. Still, I made sure that she never went into full time residential care and I kept my promise until her life ended some 12 years later. Mum died at my home with my dad 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 their carers. I am so proud of her strength of character and her sheer will to survive against all the odds dementia flings at you.

And I’m proud of myself too.