Anguish of Belfast Anne mum diagnosed with dementia at 46
Mum-of-five Anne Scott (48) was informed two years ago she had dementia. She tells Stephanie Bell how, after struggling to cope with a terminal diagnosis, life has new purpose as she bids to raise awareness of the condition
A single mum-of-five whose youngest child is just seven years old has described the horror of being diagnosed with a form of dementia that normally only affects elderly people.
Anne Scott from Newtownabbey can't help but worry about her children as she struggles to accept that her brain function is deteriorating and that her condition is terminal.
The 48-year-old, who worked as a counsellor for ChildLine before her diagnosis two years ago, is now finding a way to cope thanks to the campaigning and support charity Dementia NI.
And while it has been tough emotionally and still is for this devoted mum, she hopes today to help highlight the symptoms and importance of early diagnosis as well as raise awareness that dementia does occur in younger people.
The shock of her diagnosis was compounded by the fact that no one could tell her exactly what it meant, something she believes is due to a lack of information and understanding generally. Like most people she turned to the internet, and was terrified by what she discovered.
Anne, who is mum to Jason (29), Mark (25), Chris (21), Tiana (17) and Evie (7), says when her symptoms started four years ago in her early 40s dementia was something that never entered her mind.
She says: "I started to have dizzy spells which made me sick and then I started collapsing as my legs went weak and tingly.
"I felt like I had this hazy thing in my head and had a feeling of being disorientated.
"My co-ordination was very poor and I started to have severe pains in my head."
Anne's GP referred her to hospital where a specialist suspected she might have a brain tumour and told her he would arrange for a scan.
When no appointment came within the next year Anne returned to her GP who referred her as an emergency case and she got a brain scan a few days later. The results were terrifying.
She says: "They discovered I had lesions on my brain, big ones, and they told me I had vascular dementia. People don't realise that vascular dementia is different from other forms.
"It can affect every part of your brain. I've been told I will go blind in one eye and end up in a wheelchair.
"I discovered it is very rare for this type of dementia to affect someone of my age and usually all you have is five years to live, but because I am younger and my body isn't as weak, no one knows with me.
Anne went home to try and face up to the horror of the news. She had little information and nowhere to turn to for support. For the first two years she found herself isolated and depressed as she struggled to accept that her brain was dying. Anne's story bears a striking resemblance to the 2014 film Still Alice starring Julianne Moore, which deals with the dilemmas faced by university professor Alice Howland, who is diagnosed with Alzheimer's at the age of 50.
She says: "I felt lost and very frightened. I had no one to turn to and I sat all alone for two years thinking how can this be? How can I have dementia at my age?
"What is the point in me living now my brain is dying, it's basically rotting away and no one can stop it, and the more it rots the more organs will eventually shut down and stop working.
"I cried so much in those early days. Every time I looked at one of my children I thought: 'I'm not going to be here for you, see your special moments, guide you through life'. It is so hard to hide emotions like that from your children.
"I tried my best but Evie would see my eyes red even when no tears fell and she would ask: 'Are you in pain again mummy'. And I would say I was because I didn't want her to know the truth that I wasn't going to be here for her and it was breaking my heart. She would cuddle me until the pain left and say: 'I wish you were not ill mummy I love you'.
"I felt like I was a waste, that I had nothing to offer anymore, and that basically I was useless and with time I would become more of a hindrance.
"No one can imagine how shocking it is to be diagnosed with dementia; any terminal illness is soul-destroying, but to be told not only are you dying, but also that you would be blind in one eye, in a wheelchair and lose your memory is devastating.
"People can say 'sure, we are all dying', and yes that is true, but to know your life will be cut short and how you will die is a very heavy burden to carry with you every minute of every day and at times it is unbearable. The thoughts of having to say goodbye to my children breaks my heart, and it's the one thing I still cry over - the rest of the time I try to smile through everything."
It is just three months ago that Anne became involved in the local support group Dementia NI and she says it has given her a purpose again.
Dementia NI was set up five years ago by five local people living with a diagnosis of the illness with the aim of providing a voice for people and also to reach out to other sufferers.
It has made a major impact in a short time in helping to reduce stigma by raising awareness as well as influencing policy and practice across Northern Ireland.
Members are involved in a current public health dementia awareness campaign called StillMe in which they talk about how the condition affects them.
The group has proved a real lifeline for Anne. She says: "In the short time I have been with them I have found the support and friendship I so badly needed.
"As a result my life has dramatically changed and once again I have found reasons to smile and be happy that I am still alive.
"It has been an amazing two months. I have gone from being basically housebound and feeling worthless to having encounters and opportunities that I would ever have experienced.
"With Dementia NI I have appeared as part of a group on television and radio, which was nerve-racking but exciting.
"We have helped develop dementia-friendly leaflets for other organisations and also worked towards amending Government websites on dementia. We do all this and so much more with the aim of changing views and policies on dementia.
"Although we all work so hard we still find time to chat and laugh, building confidence in ourselves through each other's support. Being a member of Dementia NI and being able to contribute to making positive change is something I'm very proud of. It has given me a purpose again and made me realise that nothing in life is all good or all bad, if you look hard enough there is a silver lining, and mine is Dementia NI.
"I have found through the group that I am still able to contribute to society and do still have thoughts and opinions which are worth listening to, and in spite of my dementia diagnosis I have also discovered that I am still me."
While she has found a way to cope Anne has still had to face the difficult decisions of organising her end of life care, planning ahead for her children's care and preparing them for what will be.
She says: "My time now consists of making memories for my children so they will always remember their mother and the good times we shared.
"I don't want them just to remember me being ill or when the time comes to see me not being able to feed myself, dress myself or know who they are. I'm fighting the battle now but in the end it will be my children who will have to take over it, and it's a day I never want to come.
"I never want anyone to feel like I do or go through the loneliness and pain I have and that's why I have joined Dementia NI in the hope of ending the stigma and to help bring more awareness.
"Dementia NI along with my children has become my lifeline. Without them I would still be sitting depressed and lonely but now I have reason to smile again.
"I can still have fun and I can still make a difference which is very important to me as I want my children to be proud of their mum, I just hope anyone in my situation reaches out like I eventually did and gets the help and support they need and deserve."
It is estimated that there are approximately 20,000 people living with dementia in Northern Ireland.
Dementia is a term used to describe a group of signs and symptoms which can occur when the brain is affected by certain diseases or conditions. A diagnosis of dementia is considered when two or more of the following functions are significantly impaired: memory, communication and language, visual perception, ability to focus, reasoning and judgment.
Contrary to what most people think dementia is not a natural part of the ageing process and early symptoms can develop in some people during their 40s. Tara Collins, Dementia NI programme manager, says: "Dementia NI couldn't emphasise enough the importance of receiving an early diagnosis.
"A diagnosis of a dementia can often be very difficult news to come to terms with but we believe that life does not end after a diagnosis.
"Receiving an explanation for your symptoms and learning what can be done to support you may help to reduce some of the anxiety caused by not knowing and enable a person to make the relevant changes to assist their daily living.
"Dementia NI would encourage anyone who has received a diagnosis of dementia to seek help as soon as possible to ensure they have access to appropriate treatment as well as relevant services and support, enabling them to live independently with a good quality of life.
"A timely diagnosis can give individuals the opportunity to make their own decisions regarding financial and legal matters, as well as plan their care and support in the future."
For information contact Dementia NI, tel 028 9068 6768 or go to www.dementiani.org or Facebook:https://www.facebook.com/DementiaNI and Twitter: https://twitter.com/Dementia_NI