Several weeks before my mothers death, I was interviewed by Sam, a journalist from England.
Below is the article he wrote.
The symptoms of the disease include memory lapses, mood swings and difficulty in finding the right words to describe everyday objects and events. However, these are all synonymous with the effects of aging. Over six months however, a different pattern can emerge.
• become paranoid that people are trying to harm them, or burst into tears for no apparent reason
• become confused when handling money, driving or using a washing machine
• habitually forget recent events, names and faces, and struggle to understand what others are saying
• undergo a personality transformation – they may become sullen, aggressive or nonchalant to those around them
Unlike other incurable diseases, the medical world still has little idea as to what actually causes Alzheimer’s disease. Current theories suggest that it is probably a combination of factors – some may be genetic, some may be linked to our environment.
The biggest factor is age. Under 65’s are at a low risk from dementia, with 1 in 1000 being affected, whilst over the age of 65 the risk rises to four or five in 100. By the age of 80 it affects one person in five.
There is a genetic risk of contracting Alzheimer’s, particularly when there is a strong family history of the disease. About 17,000 people under the age of 65 in the United Kingdom are affected, some as young as 35 years old. Youth is no insurance. People who have had a severe head injury, and sufferer’s of Down’s Syndrome are also more at risk of developing forms of dementia such as Alzheimer’s.
These days, what most people consider to be a life-destroying disease constitutes cancer or AIDS. Many of us are unaware of the extent to which another more insidious, incurable killer is causing problems within our society – Alzheimer’s disease.
According to the Alzheimer’s Disease Society there are currently 700,000 cases of dementia in the United Kingdom, of which Alzheimer’s disease is responsible for over half. This number is expected to double to 1.2 million by the year 2040. Unfortunately, one third of all sufferers live on their own, especially poignant given the destructive way that Alzheimer’s negates your ability to do any number of simple tasks.
Tay Austin’s mother was diagnosed with Alzheimer’s disease 14 years ago. Over this time she has found her life consumed by Alzheimer’s alongside her mother.
“Looking back, it’s hard to remember a time when my mother wasn’t a victim of Alzheimer’s. But then after 14 years I guess that’s to be expected.”
Alzheimer’s is a physical disease, attacking brain cells, brain nerves and transmitters, disrupting our ability to remember, think, make decisions and speak. The brain actually shrinks with the damage it causes.
When diagnosed, Tay and her mother were both taken aback and unsure of what was happening. “How do you explain to someone that a loved one suffers from a terminal illness, and in the next breath turn around and say, "She could live another ten years with it?”
Like many Alzheimer sufferers, the care came from the immediate family.
“Over the course of the next several years, I became a mother to my mother. At first it began slowly. Little reminders to pay bills and shop for groceries, then more responsibility. Then the more confusing symptoms began to emerge. My mother would look at me with hatred in her eyes. She was beginning to change in so many ways.”
Within 3 years of her diagnosis I had lost myself and had become a reflection of my mother’s needs. Alzheimer’s disease is particularly harmful because it involves the sufferer and the caregiver. Not only does the victim of the actual disease suffer, the carer - almost always through the early stages a member of the family – goes through every experience as well.
“This disease has a way of undermining everyone. It takes everything from the person afflicted and its repercussions are equally as powerful on the caregivers. My mother KNEW something was going wrong but simply couldn’t put her finger on it. To this day I can’t imagine what that must have been like for her or how frightening that must have been.
“She went from an independent go-getter, to someone who was uncertain, undecided, withdrawn… a child that needed constant guidance to make the smallest decisions.”
The levels of care and commitment that need to be given to a sufferer of Alzheimer’s disease are astonishing. It is literally a 24 hour a day, 365 day a year full-time job.
“The destruction of the disease is entire. It begins gradually but over time renders the person totally helpless. They become mute, may suffer seizures and in the end are curled up into a fetal position, totally dependent on those in charge of their care.”
The problem with Alzheimer’s however, is the initially slow nature of the disease. Early symptoms involve slight memory lapses, mood swings or dips in concentration. These can all be misinterpreted as natural signs of aging.
“It’s easy to ‘tag’ it with excuses like, ‘Well, she wasn’t paying attention.’ Truthfully, the disease has probably been active for at least several years before symptoms begin to become noticeable. In fact, by the time the person is diagnosed, their brain is already 50% destroyed by Alzheimer’s disease.”
With more advanced cases it has been known for the sufferer to adopt more unsettling behaviour. There are cases of people getting up in the middle of the night, wandering away from home and getting lost, losing their inhibitions and sense of suitable behaviour and undressing in public. Towards the end, the personality of the sufferer can completely disintegrate, leaving them bed-bound and totally dependent on friends and family.
So how can we try to deal with a disease as silent and deadly as this, as sufferers OR as caregivers?
Although still an incurable terminal illness, management of the disease is gradually being made easier with the development of new drugs that can slow down the rate of mental decline. However, it is unclear for how long they can help past the early stages of the disease, and they have not had consistent results with all sufferers.
“Take it one day at a time. With Alzheimer’s disease it’s like trying to hold mercury…it just isn’t possible. It slips through your fingers just when you think you have it in your grasp. Mistakes will happen no matter how hard we try, but the key is to let them go.”
It is important to establish a routine of care as early as possible, and learn everything you can about the disease to avoid any more surprises. Expect the unexpected from your loved one, as this affliction can and will change them.
“This is a catastrophic disease that affects millions of people in every nation on this planet. It’s affects are global and every person afflicted, every caregiver, has the same wants and needs – both medical and emotional support. There are families like me, who must find a way to live with a disease that is taking those we love one small piece at a time.”
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