I often wonder how carers cope with their unexpected role of being a full time carer for someone with dementia or any neurological illness.

Those of us who are married all went through the marriage vows etc, in sickness and in health, but nothing prepares you for what is to come like dementia.

Its a job they are untrained to do, as everyone goes down this route with different experiences, vastly different symptoms and problems. We are all totally different and no two people with any form of dementia are the same.

I personally don't think anyone could train you how to do the job, as its all down to the individual and their symptoms and problems, and no one size fits all.

Its a bit like trying to train a nurse or social worker to look after someone with the illness, where do you start, there is so much to take on board, then you need to change it all with the next patient who is totally different.

I often talk to trainee nurses etc about my Lewy Body Dementia, but as with all dementia's no two people with Lewy Body dementia are the same.

Caring is a job which is theirs 24 hours a day, 7 days a week and 365 days a year without a break.

In the early stages life can as we know it go on as normal, but then there are times when we need that extra bit of support and help, but don't need it all of the time.

I say this because we all need occasional support with things in the early stage but don't necessarily want someone there all of the time, because we want our own freedom and that is very important.

Being able to call on someone when we need it, and being allowed to do our own thing as and when we want providing of course that we are safe to do so.

It must be difficult for any carer to decide when we are safe to do something ourselves, and when we need to be watched for safety.

Like many people with the illness, I can be suborn and feel that I can do things on my own, and in many cases it will be fine, but then there are times when the wheels come off, and the unexpected happens. Is it then the carers fault, or is it my own because of my pride.

I do think its all trial and error, because its only by trying things that we understand when its time to let go and stop being so independent.

Its through trial and error that I have been able to let go of some of my hobbies and pastimes, because as my consultant said early on. If I cannot do something I enjoy one day, leave it and try on another day, if that fails try again.

If on the third time it still fails, leave well alone as life is too short to get stressed trying to do the impossible.

Through this I have learnt to let go myself, but my wife also knows when I am  not up to doing certain things and supports me when I feel upset at not being able to do something, that I have done well for years. There are times when she may suggest that I let go, if she thinks it is becoming too much, but on the whole its down to me, as I am always thinking of my own safety, although that does not always work.

Even though as an Engineer I spent time doing Health and Safety and Risk  Assessments, I can still now get it wrong

Its a difficult balancing act for the carer, as they don't want to be too protective, otherwise we may stop doing things and then give up fighting the illness too early.

These people have a lot to put up with and they should get more respect and support from the Governments, as they save the public purse millions of pounds each year. Yet in reality they get very little support at all as no one really cares about them apart from charities which can give support and guidance when needed sometimes desperately.

To me all carers are angels and I admire their courage and determination


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  2. ken christensen24 June 2013 at 14:48

    Thanks this has helped so much. Independence is so hard to let go of and I to get so stubborn.


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I always say that we may have this illness, but we are all so different.

This is my own daily problems, but I would gladly share anyone elses, if they send them in,

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