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Reflecting: The End Of Alzheimer’s Awareness Month

September is Alzheimer awareness month. There are many of us that are affected by Alzheimer’s disease, whether that be because of a relative, friend or yourself;1 in 14 people over 65 will get Alzheimer’s disease.

This number rises to 1 in 6 over the age of 80, however it is not just the elderly who are affected with 1 in 20 cases of Alzheimer’s affecting a person between the ages of 40-65 – know as early onset Alzheimer’s disease. 

My name is Emma, I am one of the creators of Esperanza, and to end Alzheimer’s month, I would like to tell you a little bit about how my family have been affected by this disease.

Shirley looking well, with her husband John sitting in front of some flowers

My Grandmother was diagnosed with Alzheimer’s roughly 6/7 years ago, but that was not that start of the disease.
When I was young my Grandma Shirley was my hero, in fact, she still is. She was such a strong female role model to my sister and I. Over the span of her career she had lots of different accounting jobs, she was the best touch type I’ve ever seen and could do long multiplication in her head like she was retrieving a memory. She was an amazing Mother to her Daughter, my Mum, who she taught to cook, and Grandma Shirley was the reason her Daughter wanted to become a chef.
Shirley was the envy of every party she attended, for her amazing seamstress abilities – she always had the most beautiful handmade outfits. She had the most amazing green thumb and could always turn the worst card hand into a winner. She taught her Granddaughters as much as she taught her daughter and raised a family of strong independent women.

A few years before her diagnoses there were signs of the impending disease. She had begun to forget conversations, people’s birthdays and even sometimes their names and she had started to forget the recipes that used to be second nature.

There is one instance that I can remember as the moment I realised how bad it had gotten. We were sat at the dining table chatting about family, and Grandma suddenly drew a blank on someone’s name. She was trying to name the Daughter of her Niece. We gave her the name as you do when someone draws a blank, but even then, she was confused and couldn’t use the name in a sentence. From this point onward she was never the same.

After this, I went through a period where I found it hard to go and visit her. I was working a lot and I was very busy, but none of those things were good excuses. The truth is that I was scared. I was scared I would get upset in front of her, and I was scared that I would lose the memories of the Grandmother I grew up with. I was ultimately scared that she would forget me.

In 2017 Grandma got poorly and her physical health declined. I realised I hadn’t seen her in a long time. Lots of things had been happening in my life including meeting Abi, my now Wife.

Emma with Shirley in her home. Emma looks concerned as she takes Shirleys hand. Shirley is sleeping in her chair.

 I was told that my Grandma had gone downhill and it wasn’t good. I was in a state of shock and wasn’t prepared to loss her physically or mentally. Luckily, she responded to anti-biotics, but mentally she was gone. The infection she’d suffered had bought the Alzheimer’s further very suddenly.

She could only vagally recognise her Daughter, only enough to smile at her and occasionally say her name. She had no idea who I was anymore – I think she just thought it nice to have visitors.

At this point Abi and I hadn’t been together very long, maybe about a year. I hadn’t yet brought her to meet my Grandparents. When we went to visit my Grandmother in the hospital, I brought Abi with me for some support. Abi had a red lipstick and bright, colourful outfit on. My Grandma Shirley couldn’t keep her eyes off her, it was as though she recognised her! She looked at Abi with such love, as though she knew who she was. Abi chatted to her and made her smile and laugh. I can’t explain to you how happy this made me and Mum, watching this interaction was so comforting. Shirley was still there; she was just a little changed.

Shirley and Emma at Shirleys home. Both are looking at the camera and smiling.

After this, the difficult decision was made that Grandma had to go live in a care home. My Grandad was no longer able to look after her even with carers visiting her. Although it was tough, it was the best decision that could have been made.

Since being in the home, Grandma has lost her mobility, she can no longer walk or move around on her own. She doesn’t talk much and when she does it doesn’t make sense. She can’t feed herself much or drink on her own very often.

Before Covid-19 was our new reality Abi and I would travel every other weekend to visit Grandma. We would always go at lunch time because that’s the only time she was awake – the sound of the dinner trolley always grabbed her attention. She gets a whiff of lunch and that’s it, her eyes are wide, and she is looking for that plate to arrive.

Between Abi and I, we fed her lunch and have fun with her as she enjoys her favourite foods. We had such a lovely time, she smiled and laughed, talked a little, and holds our hands. In that moment I get my Grandma back, the feel of her hands on mine, the excitement in her eyes, the way her lips move when she eats and the way she has always used her index finger to push food away from the edge of her plate and onto her fork. Mostly my Grandmother is no longer there, but in those intimate moments you can see little flashes.

During lockdown, we were unable to visit Grandma Shirley, and as I’m sure anyone who’s missed their family during this time will understand, its been very painful. We didn’t know if her Alzheimer’s would decline further in the months that passed, or if she was missing us or wondering what was happening. Worse still was the worry she would think we had forgotten her.

Luckily, we have began some distanced visits now, but without being able to touch Grandma, its very hard to interact, and we are often met with an hour of sleeping Shirley.

A recent B&W portrait of Shirley cuddling her toy fox and looking content in her armchair

The best advice I can give someone facing the effects of Alzheimer’s disease is to make the most of every moment, no matter how hard it is. What I realise now is that I will never forget the person Shirley Moore was, and whether she knows who I am or not, she knows that someone is there for her – something I wish I had known before.

For help and advice please visit:

Alzheimer’s disease NHS

Alzheimer’s Society