Care home called us last Sunday to say Mum had taken a really bad turn and we need to come in as soon as possible. She was semi conscious- for most of the time we were there. Stayed all day stroking her face , holding her hand and playing her favourite music. She is not eating and only taking tiny amounts of liquid. She is still here . When her eyes open her eyebrows raise ever so slightly when she sees you. I feel exhausted , so sad and desperately trying to stay strong for other family members. When I am with her I feel dreadful, when I am away from her I feel even worse and so so guilty
. How do I cope and how long will it be until we are all at peace.
The most difficult and challenging aspect of these very special moments, is coming to terms with reality. Nature gives us life and nature takes it away. Just like dementia itself, nature has no sense of " the other ". That is our relationship with someone. With a parent and specifically a mother, that relationship is immensely powerful. The mother bears us and raises us and that bond becomes embedded in both heart and mind. Dementia robs a person of memory and as such eradicates the very painful preoccupation with that "relationship " which is now undergoing a radical change. The subject of that relationship, a mother, being for the first time, physically no longer present. This is life. This is fact. This is truth.
The " bereavement " which takes place when a mother with Alzheimer's no longer seems to recognise their child, or who inhabits another reality of their own which one simply has to recognise as FACT, can be very painful in as much as it mimics the passing of the parent you have known your whole life. Then, when actual bereavement comes about you undergo a further state of despair and sorrow and perhaps " guilt" which is usually the fruit of utter frustration at not being able to cope when the situation became totally unmanageable.
I was at the hospital bedside of my late mother for a complete month. During that month she did not eat nor drink ( l used a syringe to administer water to curb total dehydration). I remember thinking about the decades of life which the family enjoyed devoid of any illness. The fun and sheer joy of life at it's best, both as a child and then an adult. I recalled my mother's life before l was born, how she so often recounted how happy her childhood had been, despite the traumas of both wars and a period of poverty living in a tent on a beach. As with everybody else, whoever or wherever they are, a life is unique and yet related to every single human being on this Earth. It has value, it matters, it is sacred. The " story" of a life can never change, nor can it be harmed. When that life draws to a close thus doth the story. But the holder of that story whilst physically departing this world, remains in the mind and heart of others, either joyfully or in sorrow. So the " memory" dictates. If you feel like crying, then cry. If you are filled with despair, then don't try to battle against it. See it as fact. Let the tears flow and see what takes place. Despite the genuinely terrible moments in my own mother's dementia journey, at the very end, focussed entirely on her face as she lay there unconscious in the hospital bed, looking beautiful despite her loss of weight, despite the ravages of dementia, despite the peripheral hubbub of the hospital ward close by, there came a moment of complete awareness of what was taking place - the nature of truth without any of the mitigating baggage to turn it into what it was not -
Perhaps we can term that truth another word .... Peace.
