‘It’s hard to talk about the sad memories; of watching someone bright, articulate and loved disappear in front of you and bringing those memories to the fore is difficult when all you really want to remember are the times filled with laughter’. – Tracy Leung
It is tough to imagine the journey a growing number of us have to face when someone close to them falls ill with Alzheimer’s. It is incurable, challenging and heart-breaking.
Alzheimer’s- What is it?
Alzheimer’s disease is a common form of Dementia, and declines the way your brain functions, affecting the way you behave, your personality and your memory.
It is a progressive condition, worsening as it develops, and eventually causing radical behaviour, memory and personality changes.
It is most common in people over 65 years of age and tends to affect women more than men.
The Alzheimer’s society estimates that around 650,000 people in England have Dementia, with Alzheimer’s responsible for around 62% of that.
Care, Cause and Early Signs
Alzheimer’s is a disease with no known cause, and no known cure, a medical conundrum, but there is a worldwide effort underway for answers.
In the meantime, many sufferers have to rely on support from dedicated charities for support – and not all are getting it.
Rob Stewart, who works with the Alzheimer’s society based in the North East, told me about how the Society is funded.
‘The majority of funding at the moment needs to go towards the training of nurses and staff as over 2% of Dementia patients don’t get the stable support and care they need. This needs to change,’
2% is a funny figure – is it right? The government would say that means 98% of people with Alzheimers are looked after.
The early signs of Alzheimer’s are usually memory loss and difficulty in saying certain words, but there is no standard medical test for diagnosis. These symptoms are very common in the elderly, and without the right support system, many won’t get examined and get the help they need early on. It is a sad realization or situation? Which is why there are establishments across the country (such as the Alzheimer’s society) to try and change that.
I wanted to try to comprehend and understand the illness, not just from a personal, not a clinical perspective, from someone who has been through it. Someone who has the disease and with someone who has experienced someone with the illness.
Bridget Elwin was described as strong hearted, fiery and a strong catholic. The youngest and only girl of 14 children, she grew up in Ireland, protective and hard-working. A family woman and housewife.
She was diagnosed with Alzheimer’s over 15 years ago and sadly lost her long battle 6 years later.
Her Granddaughter and best friend, Tracy Leung, gave me an insight to the difficulties of her loss and how she cared for someone with the illness, and the impact that had on her family.
‘It takes away your personality slowly, eating away at your brain cells and your dignity, removing memories backwards, and reduces you to an incoherent baby like state. And when you have to care for someone you love and watch them slowly fall away from you it hurts; knowing that you can’t help them, knowing that you can’t stop it, and sometimes getting a glimpse in their eyes of recognition, almost like they know they are dying from the inside out.’
She told me of some of the difficult times. Like when Bridget would try to go to work at 3 in the morning, she wouldn’t be able to find her way home, or when she tried to cook her family dinner, and left all the gas on in the house.
‘Watching your nana, who was so particular about manners and appearance, unpick a new cardigan with a fork, or tell her husband of 60 years to ‘eff off’ and then take a picture of them together from her bag and lovingly tell you that that’s ‘her Morris and best friend’, to suddenly not know he is sitting beside her trying to hold her hand in the belief that a tablet will eventually help; how can you describe that to someone and expect them to understand.’
A huge struggle with coping and caring for a sufferer is the unpredictability of the person’s emotional responses, as well as the drastic and sudden changes in their persona and ideologies.
It can become easy to lose the person they once were. It takes strength to cope.
I interviewed a woman, aged 82, who has just been diagnosed with Alzheimer’s. She is in the very early stages and she wanted her identity to be confidential. When speaking with her, she seemed together, confident, and well-spoken.
Her scarcities became clear though.
‘I want to be able to look my husband in the eye, be able to tell him I love him, talk about our wedding day, when we were young and wild, talk about our best accomplishments, and the battles we fought. I want to be able to look through photos of our children and grandchildren and be filled with pride. I think that’s what I’m so frightened of; my entire life that I worked to build and not recognising it.’
As we continued our conversation she began to feel thankful that she was much older, and although she would never wish this upon
anyone, she felt incredibly saddened for those who are younger, those who haven’t completed the further chapters in their lives as she had done.
Many people aren’t aware of the huge effect it has on everyone around that person.
Sufferers can become unpredictably emotional, and this is most likely to worsen until it burns itself out, until the sufferer is too ill to feel anything; a saddening yet comforting circumstance.
Bridget Elwin was lucky enough to have a strong support system, and eventually as her illness progressed further, her family had no choice but to put her into care, where they made sure she was as comfortable as possible.
These care homes and the staff involved are vital for sufferers in the late stages. They have the medical support as well as a place where they will never feel alone and give full access to family members and loved ones.
Fighting For the Cause
The campaigning and fundraising is inspirational, involving not only those who have had a close encounter with the illness, but those who just want give a helping hand.
The Alzheimer’s society organise many fundraising events across the country, even sky-diving. Anyone of any age and ability can make their contribution; whether it is running, walking, or stood on the high streets with charity buckets.
They are dedicated to defeating Dementia and Alzheimer’s through research and fund the research into the cause, cure, care and prevention to improve treatment for people today, and search for a cure for tomorrow.
‘It’s great to see so many people campaigning on behalf of, or in memory of loved ones and the experiences are truly uplifting,’-Alzheimer’s Society
There has been so much dedication and hard work to the illness, many, including myself pray for the answer.
There are high hopes, and perhaps not in a year, but in 5 or 10, there will a cure.
The disease can become obsolete and we can once and for all forget its existence.
‘The loss of yourself, and your abilities, the things that make you the person you are. The things that make you ‘you’ is the purpose of living, and to have them taken away, is worse than anything I could think of.’- Anonymous