Friday 9 December 2016

Dealing with dementia: 'Inevitability that the day will come when mum no longer understands that I am Laura - I am her daughter'

Laura Reid

Published 30/11/2015 | 00:00

Nora and Laura Reid, with Laura's son Thomas. Photo: Marc O'Sullivan
Nora and Laura Reid, with Laura's son Thomas. Photo: Marc O'Sullivan

When her mother Nora was diagnosed with dementia at the age of 58, Laura Reid and her husband moved back into her childhood home to look after Nora full time. Although life has its difficulties, Laura says she is learning more from her beloved mother than ever before.

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The unalterable fact that one day my mum is going to forget not just my name, but who I am, evokes a kind of impossible sadness in me. Caring for someone with dementia is challenging and admittedly wearying at times, but it is a particular cruelty to have to accept the inevitability that the day will come when she no longer understands that I am Laura - I am her daughter.

The agonising unravelling of the person you love is a bitter pill to swallow and becoming a carer to a parent is something you can never truly prepare for.

When it came to the birth of my first child Thomas, I had read all of the books and brought all the soft, cuddly essentials. I had felt prepared to be "Mum". But becoming the full-time carer for the person who not only raised three kids alone when she lost her husband to cancer, but had been the primary breadwinner, caregiver and mentor; a towering strength - nothing can prepare you for that.

As Mum forgets she is Nora, it will be up to us to remember for her, to remember all the nuances and idiosyncrancies that made up who she was, the peel of her laughter, the sound of her voice, and all the things that made her our mum.

She was the ultimate carer. After our dad died so young and she was forced to face life without him with a young family, she never crumbled. She picked herself up, went back to college and qualified as a pre-school teacher so she could earn and still be at home in time to greet us every day after school.

In the early stages of her illness she was so clever at finding ways around her new challenges that she practically provided care for herself.

The spectre of dementia is just not on your radar when your mother is in her early 50s, so it took many years before Mum was formally diagnosed with a condition we had never heard of, called Posterior Cortical Atrophy (PCA). PCA is a progressive degenerative condition involving the loss and dysfunction of brain cells, particularly at the back (posterior) of the brain. Mum was just 58-years-old when she was diagnosed after years of being misdiagnosed with everything from lupus to stroke.

We first noticed there was an issue when she started having difficulty putting the key in the door, or differentiating between different bank notes at the shops.

Later, she started to lose words, stopping mid-sentence and reaching for adjectives and nouns that were always out of reach. She would lose names, faces, appointments and places.

Now, she needs help with washing, dressing, shopping and the simple day-to-day tasks we all take for granted. All too early life had come full circle for Mum and it's my turn to help her with all the things she patiently taught me as a child.

Unlike parenthood, there was no natural progression to becoming a carer, no well-worn path to tread.

It took me a long time to understand that the care Mum needed was not to help her fight the incurable disease but to help her live well despite it - not to fight the diagnosis but to rage against the verdict.

To contemplate swapping roles with my mother was unimaginable. I had to resign myself to the fact that I would never be able to match the standard of care she had provided for me, nor repay her for all that she had done, so my husband, new son and I moved in with her to make sure she had everything she needed.

She continues to do everything she can to be there for the milestone moments in our lives. On my wedding day she travelled with me and held my hand in the car on the way to the church. She looked so proud. That was a wonderful moment, a memory we made together, that I will carry for both of us when she forgets. She was so worried she wouldn't be able to manage a speech but made sure she articulated everything she and my late dad would have wanted to say through a friend.

We named Thomas after my dad, but Mum can't really articulate it, but she can sing and she sings to him all day. I know she finds it really tough that she can't provide the kind of childcare that she could have before she became ill, to teach him his letters and his numbers and pick him and play with him.

I know it also deeply saddens her that she can't pass down all the wisdom and valuable insight to me on how to be the best possible mum to my son.

Caring for Mum is rewarding, but it impacts you in every possible way; financially, emotionally and physically. My husband David and I were living in Glasnevin for two years before mum's diagnosis; we had the house and the dog and were preparing to start our own family, but then we had to make the decision to move back into my childhood home with Mum and my sister, which was a serious upheaval.

But by following her lead we have figured out how best we can live our days well with dementia. In truth I have found that I am learning more from her than ever before. She's reminded me of the importance of living in the moment and making lasting memories, she's taught me how to find my voice as a carer and to use it to fight for what she needs.

The role of a carer isn't straightforward or easy. Keeping life normal is the ultimate struggle and fighting for needed resources is often a battle in itself.

Sadly, this isn't helped by our elected Government which is failing to honour its commitment to people with dementia. So much more needs to be done to enable people to keep living in their homes and to resource their caregivers to continue to provide this round-the-clock care without falling ill themselves.

I ran for election last year, and I will continue to fight for the rights of people with dementia. All Mum wants is the support to stay at home surrounded by her possessions, her memories, her life. She is far too young to go into a nursing home but there are obstacles at every stage. There are just no services tailored to meet the needs of a woman of Mum's age with dementia.

It is with the help of organisations such as The Alzheimer Society of Ireland (ASI) that the requisite advice, guidance and support is found. As a member of its Dementia Carer's Campaign Network, I and others are trying to be the voice for people living with dementia, for their families and their caregivers. The ASI is fighting for funding, for research, for the rights of those who are being forgotten and the needs of those providing their care.

In our home, as a family of caregivers, we understand the importance of looking after each other, while looking after our mum. We know how lucky we are to have a great support network and recognise that there are many carers who are not as fortunate.

Sharing the role between us means that caring doesn't define our life but adds to it. Caring for Mum has played a significant role in shaping my life and who I've become.

I often find myself remembering my Dad's words that 'life is for living'. I'm determined to make sure we live life well and know that I won't go wrong by following her footsteps and raising my son the way I was raised in a loving, supportive environment.

When we found out I was expecting Thomas, Mum's first grandchild, we waited until her birthday last year to tell her the news. She later told us she wanted to be his Nana for many years, but had made a deal with God that she would give this up if she could just stay well long enough to make him laugh.

It warms my heart to watch my son giggling and laughing with mum and it's something I cherish every day. When she can no longer do it I will make sure I tell him all of her stories. I will keep her memory alive in him.

* Laura Reid is taking part In The Alzheimer Society of Ireland's Impact of Caring campaign running this month. For more information go to alzheimer.ie.

* If you have been affected by the content of the article please contact The ASI National Helpline on 1800 341 341 from Monday to Friday 10am to 5pm and Saturday 10am to 4pm.

PCA diagnosis

"It's really important that people are familiar with the symptoms of PCA, as it is so hard to diagnose. I felt I was going mad for a long time until I was officially diagnosed, as nobody could tell me what was wrong and yet I was becoming more and more confused and having difficulties with things like putting a key in a door, telling the difference between bank notes and remembering words and places.

"It's so important that anyone experiencing difficulties like this goes to their doctor. As soon as I was diagnosed and I knew what I was facing, then I was able to get the supports I needed and things fell into place. It's the not knowing that's the hardest part.

"My biggest wish is that my grandson Thomas could have been born before I got sick, that he could have grown up knowing me before the PCA. I spent 15 years teaching small children in a role I dearly loved so it is very difficult that I can't do the same for him now."

- Nora Reid

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