I look at lots of others posts, and think, well He’s not that bad yet, but last night was the pits. Swearing at me, banging his head on the wall, and just the continual disturbed sleep, through nightmares, toilet and forgetting he’s already been. Luckily the lady that organises the carers I have, called today and has now
referred us onto the next level, so respite looms for me. This is not all about him now, I just cannot cope. He wants to die, every day, and I want to kill him. It’s no longer a marriage, but a toddler tussle, and at 61, I feel too old for this. He is 81, and I see that there are a lot of ladies on here with older husbands/partners. Unless you live 24/7 with this disease, you do not know it.
"Unless you live 24/7 with this disease, you do not know it". Therein lies the fundamental reality which can evade even those who specialise in the field of psychoanalysis or dementia and the whole complex neurological world of unpredictable behaviour. The truth of the matter lay in not only the responsibility which is yours once you embark upon the Caring role, but the fact that the nature of dementia challenges your physical resources combined with your utter and total awareness of the presentations which confront you and which are expressions of a brain which is sick. A child is sick and you instinctively attend to it without question. Call a doctor if required or carry out the care which is required and do so regardless of self. Dementia poses a very different challenge as we know only too well on here. A challenge which belongs to us and nobody else. Yes, you may have Carers visiting and alleviating the burden of daily tasks and yes, the GP will advise and suggest appropriate medications or referrals and so on. But at the end of the day it is YOU who play out the 24/7 and do so month after month, year after year. And what is understood theoretically or intellectually or sympathised with and often perceived as " looking after " someone who is vulnerable, simply and factually bears no relationship to the actuality of the ongoing facts which confront the sole Carer. Why, even just a few minutes living within a " dementia storm" can render one in a state of helpless despair. The unavoidable " accident" which demands immediate attention and fresh bed sheets a steam clean of the carpet - whilst at the same time you are striving to calm the one who has no notion at all what has taken place and who is calling for help, or wondering why you are ignoring them and becoming more and more tetchy...
Every single one of us is different. Yet we are as one being human beings. We are related by nature and in essence by our humanity. When dementia enters the lives of any one of us, directly or indirectly, that humanity is revealed and it bears its own challenge which knows nothing about compromise, theory, practicability, the analytical unpicking of brain cell pathology and so on. When you look into the eyes of the one you know so very well - a mother or father, husband or wife, whoever - and know that the recent spat or uncalled for response is in fact the face of dementia, the crying out in the night is the cry for help, the rambling nonsense which drains your capacity to maintain listening any longer, the refusal to eat, to take the medication, the stubborn refusal to toilet in the toilet... and do so minutes afterwards in the bedroom... all of this and so much more is NOT intentional, NOT enjoyed, NOT even understood, then it requires immense reserves of both awareness and compassion in order not to succumb due to literal exhaustion. And then you also come to terms with yourself, your impatience, your lack of awareness, your limitations, both physical and psychological. You look very very closely at everything and do so from the heart, because if you avoid doing so then you risk deterioration and the abdication of that Care which has governed your life. Alas, the truth of all this cannot be found in even the finest of texts nor the most eloquent poetry, as worthy those expressions might be. The truth remains with you and you alone and it is a huge challenge.
When you are alone on the mountain top with not a soul about you to call upon, that is both truth and actuality. 24/7 Care in dementia can be that mountain. And when, one day you reach the summit, the ascent will probably both surprise and uplift you in retrospective moments. All those things you did, despite everything, for the one you love. And in that reflection you find a place to put yourself -- into that place which was once the reluctant domain of your loved one, and you know then what humanity truly means . And it is good. Very good.
