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The mind is a wonderful thing…

By Beau Damen-Young
April 21, 2009 at 1:41 pm

“The mind is a wonderful thing, it can set you free from social and material circumstance, it can empower you and it can define you, but it can also do the complete opposite”

A: Alzheimer’s.

What made me chose dementia as the topic for my first blog? Well until last week, I am ashamed to say, I had made huge (and mostly wrong) assumptions of the disease and the effect it has on both the person suffering and their families.

It all started with service user who arrived at our medical equipment service to collect a wheelchair for a relative (we’ll call her Lady X).

Lady X was suffering from dementia. She had just been taken to a hospital appointment by her main carer, her daughter in law. Lady X, despite being told she was on her way to hospital several times, convinced herself she was on a day trip out in the countryside, and when they arrived at the hospital she felt upset, tricked and extremely hard done by and hadn’t been afraid to air this around the ward to the embarrassment of her family. Lady X was near enough incontinent and wore nappies, she also needed help to clean and feed herself and the family cared for her every need. It struck me as to how hard that must have been for them, and how utterly horrifying it must have been to watch someone that you love and care for become so disorientated. I wondered also how much stress this must have put on their life, caring for someone who had basically reverted back to their childhood.

See, I spent the whole time looking at the situation from the carer’s point of view and spent little, if any time, thinking of sufferers themselves. This, I think, stemmed from my own experience of dementia, my great grandmother suffered with a form of dementia known as DLB (dementia with Lewy Bodies) in her later years. I remember she used to pay the neighbors to stop them spraying her walls with water by stuffing wads of £20 notes through their door. Only they weren’t doing any such thing, it was just simply raining, but to her it was an attack (I think I should mention here; the neighbors did give the money back).

Most of my memories of that time are of my granddad, her son, beside himself with worry. Along with bribing the neighbors, she’d disappear night after night to be found by the police at 3am in the morning swearing and frightened-trying to get “home”, wherever that was. I remember her as cold and unkind in her ways, saying she didn’t know who my granddad was, even as the tears rolled off his face with relief as she was returned to him safely. I was angry with her, I think that is where my misunderstanding came, I was young (seven or eight) and I didn’t understand she was ill, I just thought she was selfish.

It seemed the more I raised the subject of dementia among friends and colleagues, the more I realized just how many peoples lives have been touched by dementia.

The hurt that is generated from the disease is the distress that you see and someone you care for going through and that is where I had got it wrong, but I understand it now, my Granddad was crying for her, and not himself. The fear a sufferer must experience when first diagnosed with dementia must be almost immeasurable, coupled with the realization of what might be to come. When it takes hold, it most sort of feel life’s one long ground hog day of April’s fools, being tricked at every corner, where nothing ever works like it used to, and everyone around you is a stranger. Some people forget their parents have died years ago and relive the pain every time they call for them and are told they have died. Experiencing this loss on a daily basis but being unable to stop it must be truly devastating.

There are lots of other blogs discussing dementia and some fantastic websites offering help and advice so please have a look at them. If you would like to comment on this blog, please feel free; I would love to know any experiences you have on the topic.

http://www.alzinfo.org/forum/ for information and chat about dementia

http://www.healthboards.com/boards/showthread.php?t=340691 for activites for people with dementia

www.Alzheimers.org.uk Fantastic advice and blogs on dementia

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Tags: Health and social care, medical equipment

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This entry was posted on Tuesday, April 21st, 2009 at 1:41 pm and is filed under Health and social care. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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