Dementia – A Carer’s Survival Guide

Starting out on the brutal, tragic and savage journey into dementia and caring for those suffering from it (I mean suffering both mentally and physically) one, in all probability will not be aware that “dementia” is simply an umbrella term for a vast and cruel range of hideous and debilitating symptoms.

It is not purely memory loss, there is the added savagery of profound confusion, difficulties in communicating, disorientation, weight loss, depression, persistent fear, skin infections, seizures, hallucinations, paranoia and the susceptibility to frequent urinary tract infections thus causing yet more confusion– the list is seemingly endless.

Added to all these symptoms the lives of the entire extended family are shattered, robbing them prematurely of the people they know and love.

Despite all this turmoil I can say, hand on heart, that it is possible somehow to love, cherish, live and enjoy life after the death sentence diagnosis – you have got to, what else is there?  An immeasurable amount of patience is paramount to peace, calm and success whilst caring and a level of understanding of what a person is suffering is crucial.

They are definitely “still there” deep, deep down, terrified and desperate for love, care, kindness and nurture.

Each glimpse of their former self, their character and laughter is cherished and longed for and these moments sadly become further and further apart as the disease progresses and takes hold but never totally impossible to find and coax to the surface at any stage of the petrifying and lonely journey, even if it’s just in a glint of the eye.

Anything that can help ease the stress and distress for all parties concerned is to be grasped with open arms.  Music is a very strong, useful and available tonic, and even if not enjoyed previously, it can jolt the brain into reducing symptoms of anxiety, agitation and aggression.

It can prompt laughter and is something that can be a rare shared pleasure whatever the genre.  It is both comforting and enlivening for all, it can induce memories and movement for all to revel in.  Somehow words to long lost songs and ballads can be brought to the forefront, sung and danced to with joy, gusto and fleeting pleasure.

There are so many “little things” like this that can make the life of the sufferer and carer easier, more bearable, more pleasurable and now seem so obvious to me I forget that others perhaps would overlook them or not realise to what tremendous degree they can help.  Guilt, for no apparent reason, has a massive and oppressive presence in a carers lot!

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