Dementia Awareness Week: Our life under the shadow of Alzheimer's

As Dementia Awareness Week ends, 33-year-old MATT KELLY tells how his family coped when his mother was diagnosed with early onset dementia at just 54.

Dementia Awareness Week: Our life under the shadow of Alzheimer's

My parents, Gillian and Martin Kelly, met at a pub called The Bell, in Northfield, Birmingham.

Martin was fresh home from his travels across Europe and was out with mutual friends; it was the perfect blend of love at first sight and right place, right time.

A few years later they were married and not long after that they had three sons, Phill, now 34, myself and Rich, 30.

Now, 40 years since they first met, mum is in the late stages of early-onset Alzheimer's Disease at the age of 59, and life has thrown our family some of its greatest challenges yet.

We first noticed subtle signs that all was not well in 2007. As well as being more forgetful than usual, Mum had began having vivid nightmares and mood swings.

Happy – Martin and Gillian on their wedding day

Doctors advised us that it was probably depression, or normal mood fluctuations caused by the menopause. MRI scans came back clear, as they often do in the early stages of the disease, so mum was referred to counselling.

Around this time, Mum and Dad decided to realise their dream of owning a property in Spain, so sold their UK home, purchasing a modest two bed apartment in Murcia. Their plan was to move there in the distant future, once Mum had retired.

Mum was a very competent medical secretary for the NHS for most of her professional life, however, by 2009, her memory problems had begun to affect her work significantly. She began to have great difficulty in spelling and reading and began missing appointments at work.

Gillian and Martin in a picture taken earlier this year

Another MRI scan in 2009 revealed the very first signs of frontal lobe atrophy, this, along with extensive memory tests confirmed our worst fears: The diagnosis of early onset Alzheimer's Disease.

I remember at the time being in complete denial, thinking perhaps the scan was wrong? Perhaps the poor memory tests were a fluke? This couldn't be happening to my family.

Sadly, the life expectancy of people living with Alzheimer's Disease is between eight and ten years from when symptoms begin, although some people have been known to live between three and 20 years, so it is quite unpredictable.

Matt's guide to useful online contacts for sufferers and families

With the diagnosis confirmed, Mum was offered ill health retirement.

Despondent, my parents decided to accelerate their plans to move to Spain. The whole family were nervous and unsure about them moving out from their home in Bromsgrove to Spain at the time, but realised this would be their only opportunity to enjoy the life they had dreamed of.

Dad put on a brave face during our Skype catch-ups. During each visit I noticed a new set of skills that Mum had lost; the ability to dress herself, wash herself and make her own food.

By August 2014 Mum had a steep decline and we decided as a family that it was time for them to return to the UK. They came to live with my girlfriend Jess and I in our two-bed apartment in Handsworth Wood, whilst they applied to rent an extra care facility through Birmingham City Council.

By the time they returned to the UK, Dad was emotionally quite fragile, in desperate need of respite. I made sure that I helped in whatever way I could. They were very long days and very stressful for all of us.

Matt and his girlfriend Jess

Living with Mum, I witnessed the random weekly decline; one week she forgot how to use a knife, the next she would forget what to call her shoes, the week after that she wouldn't recognise loved ones in a picture. Becoming a carer for her was a swift and heartbreaking learning curve. We had real difficulty accessing services on their return.

Although we were assigned a social worker to support us, after a couple of emails she became uncontactable. Luckily, our next social worker was extremely committed and supported us in accessing some useful resources, like the Dementia Information and Support for Carers (DISC) service run by Sandwell Crossroads, who were really there for us. We also accessed superb day centre services at the Old Oscott Community Centre, run by Age UK, who had Abba ready in the CD player for mum's arrival. The housing application for an extra care facility was a nightmare, which dealt us blow after blow. After several months of miscommunication, we decided to involve our MP Khalid Mahmood, as well as senior staff at the council. About a month after that we were receiving around five calls a day from various extra care facilities with vacancies. Finally we had got them the care that was needed.

They settled on a beautiful extra care property near Longbridge, around the corner from where they first met all those years ago. In fact, we even went to a furniture shop where the The Bell pub once stood to get some bits and bobs for their new property.

Despite Mum's problems, she still continues to inspire and teach me. Everywhere she goes people want to be around her, they love her smile, her laugh, her energy and enthusiasm, even if she doesn't have the vocabulary to express herself anymore. She continues to teach me the value of service, and that being of service to others is actually love in action. Dad teaches me the same lesson, through his unending commitment to his wife.

We wanted to do something for her and others like her to recognise her life, whilst sensitively showing the destructive nature of the disease, so my brother set about making a short film which we released on social media last week for Dementia Awareness Week.

It has had an amazing response. It is so sad that she no longer recognises many of the pictures in the advert, I think she would have been very moved.

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