Dementia poses so may problems by the sheer nature of the disease. In as much as we can never be wholly sure as to what are the perceptions or feelings which our loved ones experience. But the bond which exists between say, a mother and daughter, that remains intact. The 'mask' of dementia can promote confusion and a sense of alienation, when recognition fails. We feel suddenly 'removed' for the very first time, from the person we know and cherish. That can be very hard. It can be equally challenging when the one we love exhibits aggression directly at us, or even demands that you 'get out' of the room. And then, maybe a few hours later or less, a completely different 'person' is smiling warmly at you as if nothing untoward had taken place. This one sees every day in the Care Home.
But somewhere, deep down inside, the authentic person is living their life. The brain has been damaged and the
behaviour accordingly seems to contradict all of that. But as we know that all behaviour is by way of 'communication', even when aggression takes place, that is a very important fact to retain at all times. Dementia seems to enhance what might go unseen through 'normal' eyes. Posture, tone of voice, the way you walk across a room, all of these things are perceived through dementia eyes in such a way as to constantly surprise one. This is not always appreciated by Carers as they go about their duties, so often under much pressure. But it is a truth. So too with recognition or otherwise. The dementia dictates all the rules and you cannot object to it nor question it, simply because it will not understand.
But then we come to something fundamental and very true. The innate power of humanity - devoid of any desire or self-fulfilment, removed from the mundane day-to-day pattern of life - a power which really knows no bounds, because it is ancient and timeless and it inhabits us all. It goes beyond the actuality of any disposition, event or the specific individual subject to dementia with all its implications. And when you take hold of someone's hand and help them up from the ground, it is there. When you see someone in distress, in whatever part of the world, it is there. It is there in the young mother's eyes when she tucks up her child in bed and when the grandmother cradles her baby grandchild for the very first time. And it is there also, despite the 'face' of dementia which might gaze upon you blankly or seem to ignore you, or perhaps reject you. Because it goes beyond all of that. It is profound and it is real. And even without words, when you take hold of a hand, frail and tender as it might be, there is 'communication' between you and that other person. Nothing can take that away.
It was there, as it had always been, the morning my late mother died. In the early hours she awoke, as she always did, just a little frightened, her eyes closed, me in a hospital reclining chair beside her bed. And for a brief moment, with her hand held tightly in my own, she opened her eyes, looked at me and spoke clearly, calmly, meaningfully, as if the dementia had been somehow spirited away. Then, she closed her eyes again and her words became inaudible, as she lay back on her pillow, never to regain consciousness again. Her hand held in my own, until the end of her journey came to pass.
Nothing can ever take away that innate truth, which exists even when viewed through clouded eyes. And there is tremendous comfort in that, because nobody can change it nor claim it as their own.
I don’t know what to say really, but your Mum not recognising you today must have been awful. As you say, tomorrow may be different. In the meantime, sending you love and virtual hugs
