Alzheimer’s Awareness Day

Raising awareness about Alzheimer’s and Dementia is a topic close to our heart. Find out about our founder Dr Catherine Fernando’s own journey with Alzheimer’s on Alzheimer’s Awareness Day!

My mum was diagnosed with Alzheimer’s Disease in 2019.

To me, it seemed to happen quite suddenly. One Christmas, mum was staying with us as usual, when she said she recognised the wallpaper but didn’t really know where she was.

A little later, she became upset about an incident at church. After some enquires, it transpired that nothing had happened at church, and what she described was only in her imagination.

On reflection, maybe there were signs before this. But due to my hectic life working in General Practice and being a busy mum of 4 children, my trips to visit my own mum had become less frequent.

At first, I couldn’t accept the diagnosis. I kept thinking she must have something temporary, like transient global amnesia, a vitamin deficiency, or an infection. She couldn’t suddenly have lost her memory permanently.

Every day I hoped she would be back to “normal”. I was sure she would get better after a few days in familiar surroundings. However, it was not to be, and the forgetfulness and occasional hallucinations continued.

I was completely and utterly devastated. I realised that we would never make new memories together and that she was gradually going to lose all recollection of the precious moments which connected us. How would I cope without the dearest companion I had ever known whom I relied upon so much?

I’m an only child and we had always been close. I called her almost every day of my life, even as an adult. We didn’t always see things the same way and had many mother-daughter arguments over the years, but we always loved each other.

Mum couldn’t drive when I was a child, and she used to take me to all my dance and gymnastics classes 7 miles away by cycling with me on the back of her bike. It was an incredible feat to ascend many hills in all weathers with a hefty 5-year-old in tow!

She was always there to support me through the challenges of life, from getting into medical school, breaking up with my boyfriend, being diagnosed with cancer, and losing my dad. There were innumerable happy memories too, like childhood baking, arts and crafts, hundreds of hours of reading stories together, concerts, family holidays to Majorca, visits to Granny in London, walks with our dogs, and cycling adventures.

Mum was the one who walked me down the aisle at my wedding, as dad had died 3 years before of heart failure and complications of diabetes.

It took me at least 3 months of tears, insomnia and grieving to accept the diagnosis. During this time, I slowly and painfully came to terms with losing my mum as I knew her.

Finally, at the age of 40, I completed the transformation from child to full grown-up. A post which brought with it heavy responsibilities of arranging practical help, care, and her finances.

It was difficult to care for mum’s needs at a distance. One night after parents’ evening, I checked my phone to find 4 missed calls from her neighbours and the police. Mum had been incredibly distressed, wandering around her street crying and telling people that our son (age 11 years) had committed suicide!

I hurriedly reassured everyone that this wasn’t true, and everything was okay. The next day her delusion had vanished, leaving her with no recollection of such horrible, intrusive thoughts.

Another time she called, and I sensed immediately that she was upset. She told me that her brother had died. Having learnt to verify evidence for her statements by this time, I phoned the care home where he lived. His carer reported that he was alive and well, drinking a cup of tea!

Strangely enough, I received a letter from his solicitor a month later to inform me that he had died of Covid-19. This left me with a very uneasy feeling that mum had had a premonition.

I was worried about telling her the bad news as it would be almost like she had to suffer it twice. I didn’t want to cause unnecessary emotional pain all over again. This time, however, her response was entirely different. “Oh well, we weren’t that close anyway!”

One of the hardest things I have had to do was to sell mum’s home. She had lived there for 40 years, and it was also my childhood home. So many fond memories of the place where I always felt safe, secure, and loved. It was hugely emotional. I did the best I could to collect the most meaningful, sentimental items, but I wasn’t able to clear it all myself.

Mum was born just after World War II. She grew up with little and believed strongly in the “make do and mend” philosophy. She adored charity shops, always found something “useful” in them, and never threw anything away. As a result, she had accumulated an excess of possessions.

These included half a lorry full of books, 4 double wardrobes stuffed full of clothes, jumpers in every colour of the rainbow, an enviable collection of teapots and vases, and cupboards and cupboards of vintage porcelain tea-sets.

I felt overwhelmed by the monumental task of preparing her house to go on the market and clearing decades of hoarded treasures out for the new owners. Thankfully, I found a house clearance company who insisted on recycling everything possible and donating all that they could to charity.

The plan was for mum to move into sheltered accommodation in the town we live in. However, after 4 days of living with us, it became apparent that she would be unable to manage independently.

Having previously been the most helpful person, doing all that she could to assist with childcare, housework, and laundry, she was now unable to make a cup of tea. Every single meal had to be placed in front of her and she required help with washing, dressing and when it was time for bed.

4 months on, and mum is still living with us. She is forgetting how many grandchildren she has and can’t concentrate long enough to read the books that once gave her enormous pleasure.

It can be incredibly depressing for us, watching her deteriorate day by day, doing little but dozing on the sofa, watching repeat episodes of comedies on the “Gold Chanel.”

But blessedly, she doesn’t seem anxious or distressed at all. She’s very content. At least she can eat as many chocolates as she likes without worrying about the consequences.

I know things will change and we may not be able to continue to care for her at home. But the unpredictable nature of Alzheimer’s makes it impossible to forecast. For now, we’re just taking it one day at a time…

Once I have started IYASU, I planned to support various healthcare charities by making special edition bags for each cause. Alzheimer’s is obviously very close to my heart.

Purple is the colour that represents Alzheimer’s and Dementia awareness. White flowers have recently been introduced to represent hope for a cure. I’m sure that these will provide inspiration for a beautiful, Alzheimer’s Awareness Day special edition IYASU bag. Who wants one?