Will I ever get used to these light switch moments, when he looks as though he hates me? And he tells me to F off and means it. And will I ever learn to walk away and not react, either with angry words... or more often tears? I know it is only going to get harder.
It is of course extremely difficult to confront such behaviour with calm intent, knowing someone so very well and accepting that dementia is the actual culprit, when the invective is levelled directly at you. But whatever personality resides behind this behaviour, a damaged brain is no longer capable of making sense of the world which we know and function within, day to day and without referral to how we should react or process our own behaviour. However, the
dementia person has lost that capacity. His or her expression of anger, anxiety, aggression
and so on, is by way of communicating though a cloud, a cloud of which we still know so little
about. The brain being so extraordinarily complex, once inhibited or damaged, is no longer
capable of interacting in the same way. And yet, one finds that physical 'communication' -
touch, an embrace or a hug - seems to bring about an affinity between the one who is caring
and the one who is living with this disease. It is often stated in specialist circles, that
'your
behaviour determines dementia behaviour'. I can understand the thinking behind this. In as
much as I have observed carefully, in the Care Home where I work, just how sensitive people
can be to tone of voice, the way you approach them, the manner in which you withdraw from
them, the words you utter and the way in which you utter them - all of this does have an effect
and a very real one. And whilst it is quite understandable to feel hurt and find it hard not to
react in kind to this painful behaviour, that is really the only way to alleviate further angst and
hurt. It is almost as if one ignores it, sets it aside and sees beyond it in order to touch the
authentic person behind it.
In the Care Home, when there is anger and rejection compounded by all the confusion which is part and parcel of a dementia, one can sometimes simply bypass it and move to that particular person and gently communicate on a totally different topic, or even make a cup of tea, as if the anger had never taken place. And then - not always - there can come about a transformation.
A relationship with dementia in a loved one, is quite unique. You are a partner to something basically unknowable and yet the one whom it inhabits, you know as well as anyone on Earth. The one whom you love, appears to be a spokesperson for dementia, it is that real, that convincing. But in fact they are the victim, the recipient and become a 'mouthpiece' for the dementia which manipulates them. The 'lost soul' which is the person we know and have always known, is still there, albeit hidden. But when you glimpse that very 'lost soul' in a tear, in a smile, in a look so familiar, you see that the real person is truly there. And whilst held prisoner by dementia, the one you love and care for will know that you care, even if they appear oblivious to your caring. That is what one holds onto. And that
is what tempers your own behaviour accordingly.
