Lewy Body Dementia – a Carer’s view.

The unknown dementia.

Lewy Body Dementia, do you know what it is, have you ever heard of it? If you’re a carer for someone suffering from the disease you will certainly know the ins and outs and how it affects your everyday life. The technical term indicates that it is abnormal protein deposits that disrupt the brain’s normal functioning and it was discovered during research into Parkinson’s Disease. A true diagnosis is hard to come by but this disease has facets of its own that distinguish it from the others.

However, this article is about how the disease affects a Carer who is looking after their loved one. In my own case the changes started to occur six or seven years ago with a fixation by my husband that the next door neighbours were going to cut the trees down and injure him, totally untrue. Over the years the paranoia has been steadily rising with the introduction of hallucinations and cognitive problems. How do you explain that the shadows and lights they see outside are not people lurking about but are cars passing or the wind blowing the trees. The dustbin and hanging basket next door is just that and not a person staring in the window, no amount of reassurance could convince them otherwise. The procession of animals going through the house and the obsession that the neighbour is trying to burn the house down and cause injury to the family, resulting in the walking frame being smashed against the door and window to let air into the house as he couldn’t breathe due to the fumes, all of which are non-existent. Then there are the hidden weapons for protection, the knives or bats “just in case”, the uneasiness when you go to bed that you might be mistaken for one of the imaginary invaders in the house and be on the receiving end of the said knife or bat.

When is there “me” time, no time for “me” time when there’s medication, personal care, constant washing because of the incontinence and the endless questions and repeat questions on what time it is, what day it is, where are we and is this our house to answer. The lack of coherent verbal communication is sadly missed and the role of wife takes on a new meaning, that of Nurse, Carer and general dogsbody for someone who, through no fault of their own cannot appreciate what you do and takes their anger/frustrations out on you. All keys have to be hidden just in case there’s an escape and your social life becomes non-existent, you live in this bubble away from the outside world coping with the stresses and strains of this horrible disease that you know they won’t recover from. As the stages progress, the falls start, then there is the difficulty with speech, comprehension and swallowing which could cause aspiration pneumonia because food has gone into the lungs, to add to this your own health suffers because you have no time to be ill and the short-lived respite is soon forgotten as things return to the normal daily grind we call routine.

From the outside people don’t realise just how hard and tiring a carers role is, both mentally and physically and it would be nice for a family member to perhaps offer to sit with your loved one whilst you go for a coffee or visit the garden centre and have that little bit of “me” time. But who is me, someone who has lost their own identity and is pushed to the background because the focus is on the necessity of care for the “patient”, someone who has lost their own life as if they don’t matter anymore. That’s a true carer’s role.