Thanks again to Kate Swaffer http://www.kateswaffer.com for sharing Damien's post.
Damien Murphy, on a recent blog post at "Working Towards a Dementia Friendly World" talks about the imbalance of support for those with Dementia/ Alzheimer's vs support for their caregivers.
I am reprinting part of it here, you can click through to the entire post using the link below.
Damien notes that Caregivers are given a lot of advice and support while the PWD/A (Person with Dementita/ Alzheimer's) is often not coached in what to expect of the diagnosis/ disease and/or how to deal with it.
Seeing Demien's suggestions for what advice/ warnings might be given to a PWD/A made me revisit many of the things I "did" to Gregory with or without realizing. It also showed me those things I was careful NOT to "do to" him.
While my first thought was "it was done with love" (which made me feel better) and my next thought was "it is only human nature" (which it is,) I realized that with better education of BOTH PARTIES involved in this Roller Coaster Ride, a better quality of life could be achieved.
Where are the supportive information leaflets, the training sessions or the tabloid headlines that flag up the devastating and dangerous BPSC (The Behavioural and Psychological Symptoms of Caring) that could cause so much stress and be such a burden to those people who just happen to be trying to live well with dementia? So, to redress the balance, below I want to flag up a warning for those unsuspecting people with dementia about some of the challenging behaviours a carer might present you with.
They might answer the question you're about to answer.
They might talk over you
They might point out your mistakes
They might correct you
They might talk about to others when you’re there.
They might speak too quickly for you
They might interrupt you in full flow
They might dismiss what you say as untrue or false.
They may patronise you.
They may frequently undermine you
They may expose you to failure just to show others they’re right.
They may seek frequent opportunities to catch you out and ‘score points’ in the relationship.
They may control you
They may disempower you.
They may blame you for your dementia
They may tell you off
They may treat you as ‘full blown’ from the moment of diagnosis.
They may hide things from you.
They may contradict you
They may try to rip you off or deceive you
They may ignore you.
They may take away your independence.
They will frequently test you
They may exclude you
They may shout scream or cry.
They may humiliate you or make you feel a burden, when offloading about how stressed they are.
