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The Carers Wellbeing Initiative Newsletters:

CWI Newsletter 1
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About Dementia

Living with Alzheimers since 2003

My father was diagnosed with Alzheimers in 2006 although his disease began in 2003.

Alzheimers can sometimes just ‘occur’, and in other cases it is brought on by a trauma. The trauma may be just a trigger for what was lurking in the genes anyway.

When my Mother first became incapacitated, (she developed a form of Vasculitis which took away full use of her lower limbs), my father couldn’t cope.

He couldn’t accept that she was going to be a semi-invalid for the rest of her life.  He was in complete denial and believed, that with enough medical help, she would make a full recovery. This was his trauma.

We all thought that his extreme stress and worry was the cause of his increase in forgetfulness, after all, anyone who is busy and stressed will lose track of what they are doing.

However, we gradually came to realise that this was becoming a very serious problem.

I hate to say that my mother did not help the situation. Although not fully mobile, her mental state was as sharp as ever. Her attitude to Alzheimers was that it doesn’t really exist and everything would be OK if one just ‘tried harder’.  She would not believe that my father was chronically ill.  After all, it’s just a matter of remembering things and anyone can do that if they’d just concentrate more!

My parents hid the full extent of the problem from me not for any reasons of sparing my feelings but because they were ignoring the truth themselves.

There are certain things you MUST do when you begin having symptoms of Alzheimers, such as consulting your doctor; getting proper medication as early as possible; applying for Attendance Allowance; and informing DVLA and your insurance company amongst others.

Most Alzheimers sufferers do not know that if they have a car accident and have not informed the DVLA of their condition, that their insurance is void.

The Alzheimers sufferer cannot be a driver forever for obvious reasons but this is very hard on life long drivers as it takes away one’s mobility and independence.  So it is not uncommon for Alzheimers sufferers to hide their condition for as long as possible. Or, they may say, ‘I’ve got Alzheimers, but I can still drive’. This is only true in the very early stages and even then, DVLA need to know.

My mother used to send my father on errands and mostly, he’d forget where he was going or what he needed if he ever got there. This resulted in arguments when he came home.

One day, he was sent out in the winter and it was dark at 4.00 in the afternoon. He couldn’t remember how to put the lights on in the car so he just drove around without them.

When he told me, almost as a joke, I was horrified. Finally, after 3 years, we got him properly diagnosed and he was started on medication.

We learnt that the medication only masks the symptoms, but it does nothing more positive.

My father’s progression through the disease has been slow. He has followed the textbook stages of decline and is now in the last but one stage.  For some, the complete decline can happen over a year or less. For my father, it has evolved over 13 years.

You might ask, if it’s taken 13 years, is it really noticeable…? Is it a really a problem? Isn’t the decline just typical for someone in ‘old age’ anyway?

I’d say NO. Alzheimers is a particular condition and is not merely a by-product of ‘being old’. The affects on the sufferer and their family are not the same as coping with say, arthritis or hearing loss.

There are ways to improve the quality of life for the sufferer and any carers they may have, but there is no cure. It’s all about COPING with it and dealing with it on a daily basis, for as long as it takes which can be many years. The Alzheimers sufferer can easily outlive their entire family.  For this reason, you have to be practical, and think of the future.

Well-meaning people describe it as, ‘A journey’. But it is a journey you are being forced to go on against your will. What we have to do is try to make the best of it that we can.

I can only give a perspective from the point of view of one person who is a daughter and full time carer and has been for many years. But if anyone else can make use of this, then I’m here for you.

With love
A carer