Real stories

‘With Alzheimer’s, you are constantly in a state of grieving’: Loretta’s dementia story

When my mum was diagnosed with Alzheimer’s disease in September 2012, it felt as if we had all been handed a life sentence. All I could feel was the injustice. 

Early onset Alzheimer’s, they said. I only had knowledge of Alzheimer’s happening to very old people and my mum was just 62. I was only 25 at the time and couldn’t grasp everything that was happening. 

Part of me felt that my mum would overcome this, with determination and somehow sheer luck, we could beat this disease.

But the truth was this is something that would be part of our lives forever.

Adapting to Alzheimer’s 

What I always took for granted with my mum's Alzheimer’s is how things would progress. We would all have to adapt to the way in which we cared for her and what she needed frequently.

At times, I would feel that I had ‘mastered’ the care I was giving my mum, found a routine. We'd feel okay with how things were, but before we knew it, she had deteriorated again.

Looking back, you realise with a disease such as Alzheimer’s, you are constantly in a state of grieving. You are constantly losing the grasp of what your relationship was with that person, and there is absolutely nothing you can do about it.

The person you love is in front of you, yet you’re screaming inside for just two minutes, or a moment, of how things were before. 

There were so many things I wanted to fill my mum in on – events that had happened in my life, jobs, or relationships. At other times I needed advice, yet she couldn’t give it. I wondered at times if, deep down, she was screaming to be heard and understood too, as she lost her ability to speak and ways of communicating with us.

Precious moments of joy

Caring for my mother during her illness wasn’t always filled with sadness. There was also so much joy! My mum still had her wicked sense of humour and laughed at the silly things I did around her. 

When she mustered the ability to speak, she’d whisper ‘I love you’ and hold my hand tight.

Her face would brighten up when I’d walk into the room. She was my mother, but she became the person I wanted to fiercely protect. I wanted to take away anything that was causing her pain and discomfort, because she did not deserve to go through that.

I grew up so quickly in those years. I learned patience and I learned not to be hard on myself.

'Most importantly, I learned that it’s okay to not always be in control. Because you are not, sadly this disease is'.

I took for granted how much time we would actually have my mum around with us. I took for granted that this disease would eventually take its last turn, and take my mum away. 

Grieving for Mum

When Mum did finally pass, not only did I feel robbed but also I felt displaced. What was I going to do with myself if it no longer meant taking care of her?

Together with my siblings, we spent nearly eight years working together to make my mum's life as comfortable as possible. I was maybe naïve to think this would extend her life, only for it to be snatched away. Then eventually I felt relief and immense guilt that I did feel that way. However, I know it comes from knowing my mum will no longer be suffering from this cruel disease.

The memories of my mum are of times that were excruciatingly painful and moments of anguish, where I witnessed parts of her illness that made me feel completely helpless. 

Despite this, I have memories of my mum pre-Alzheimer’s, when she was full of life, vigour and was teaching me life lessons. These are gems for me now in later life.

One thing I’m glad about during the time of Mum’s illness is that I allowed myself to be present in that time.

To enjoy my time with her rather than focus on what the inevitable outcome would be.

The support I had from other people with Mum’s care was just as important as the support I gave to her. I’m glad that at times I asked for help.