“Now if you don’t mind me asking, why are you here with us?” It is now about the fifteenth time in the past hour that Tannie Ansie asks me this. “Do you have a wife and children?” “ I have to tell you that it is wonderful to have you here.” The same questions, over and over again, in spite of my trying different answers. In the meantime, Oom Petrus got up from his chair and was making his way out the door, whilst Oom Willem just turned a cup of tea on himself. Oom Jack needs help to go find the bathroom in-time. All in the space of about an hour.
It is day six of my standing in for the manager of a Care Home for people living with dementia. Six days of answering the same questions over and over and over, of listening to the same stories of days gone by. Endless hours spent trying to get the residents to finish a plate of food, drink a cup of tea, eat a sandwich, get dressed or simply have a conversation without them falling asleep. We sang, danced, played games, read the Bible and the newspaper and the back of the cereal box. We baked, walked, listened to music, prepared meals. I answered questions – over and over and over again. I am completely and totally exhausted, my feet are hurting, I am on edge and so emotionally tense that I find myself close to tears most of the time. After only six days.
How do our Care Partners do this? How do they survive the insults, the elbow on the boob? How do they keep their sense of humour, stay positive and light hearted? How do they change the one soiled incontinence wear after the other, clean vomit and wipe up porridge from the floor – all with a smile? I truly, honestly do not know. In a home with 13 wonderful, gentle, kind, vulnerable, needy, funny residents who cannot thank me enough, smile kindly at me, hold my hand, looking deep into my eyes, I find myself lost. I have studied this disease for the past four years, read up about it for the past twenty years. And yet I am emotionally lost in a turbulent sea of emotions, drowning as I am flung deep under the water, expecting to be crushed against the rocks at any second. I come up for air; gasp lungsful, only to be hurled deep into the crash of emotions again.
I drive home in the evening in total silence. I can hardly breathe. Not only because I am so tired and drained. I am completely stripped of my “knowledge” and all my good advice I have given so freely (and unasked) to so many. I stand speechless in a dark corner of total despair, facing my own frightening vulnerability. I am actually too scared to breath.
How easy it is to rationalise, to sprout forth platitudes of “personhood” and “person-centred care” and “domains of well-being” and “spontaneity”. I have presented hundreds of talks on dementia, I have cared for someone with Alzheimer’s disease for a whole year, living in his house, being with him day after day for an entire year. I have cared for my own grandfather with Alzheimer’s. And yet… I cannot quite figure out why the past six days have moved me so deeply. The only thing I can think of is that I have learnt what it means to be truly present. And in that presence my soul was profoundly touched. I became one with the deepest soul of every resident, I connected with them and through them, with the divine in each of them. I realised, and felt it deeply in my being, that dementia is a disease that attacks the brain, and not the soul. And perhaps that is what makes the care partners go back and do this day in and day out, what makes caring a higher calling, a calling that stirs the soul, wakens the spirit, moves and touches the divine in oneself. Like being in the company of angels. If you are prepared to make yourself vulnerable, to be open to seeing the person, and not the disease, and to remain in that presence, something will change forever. Because being present is to genuinely care. To genuinely care is to be part of the creation. To be a World Maker.
I have always been so mindful of the gifts that caring brings. Being able to create a life worth living for a vulnerable person is to truly connect with the universe. In that we see who we really are, our true humanity. And looking in that mirror, we know that “there, but for the grace of God, go you and I”. And in the process we see life in its truest form, and we cannot but revel in the magnificence of being alive, demented or not. To care is to become co-creator of a new and better world – quite a job I would say!