leaving home
That initial break from the place we call 'home' is a very difficult one to address, in the throes of emotional upheaval and all the rest of it. A kind of strange bereavement. Yet, when things become more calm, one can see that a move is both right and unavoidable. The caring at home (in my case) had become impossible. The 24hour care which is essential. The house itself, totally impracticable (no proper facilities, staircase, no walk-in shower et al) The moments which were 'off the wall' were stressful for everyone, especially the one suffering AD. Thus, the decision for emergency respite came at the peak of all of that - tearful, anguish, anger, guilt, the list goes on. Then, some weeks on, within a truly 'caring' environment, a specialised one focussing on dementia, one sees a genuine improvement. Medication reduced, a more settled person, with constant attendance and interaction and a TRUE 24 hour care program. I confess to a daily visit (40mile round trip) because of a prior to twelve year 'caring' role. This is by way of 'continuity' for both myself and the one afflicted with AD. Whilst there is recognition and those lucid moments, I will continue that role. The most important thing for me, is to ensure that what is the VERY BEST OPTION for the AD person is put in place. Yes, the house seems horribly empty, devoid of that being who has been there for 60 years. But knowing that they are SAFE, CARED FOR, removed for the best part, from anxiety, physical danger, all the negatives of being at home in respect of the nature of AD - all of that lends genuine comfort. Now, instead of walking along a landing in the middle of the night having been summoned by a call, to ensure that the loved one is safe- needs to change a pad - might have fallen out of bed - has "seen things" in the night - wants breakfast etc etc -- one can sleep more easily knowing that an hourly check at night, plus a genuine helping hand throughout the day, means a very great deal. I drive to the place (open door policy at ANY TIME) sit down beside her (my mother) maybe take her hand and gently interact. Despite the ramblings, the 'otherworldliness' there ARE moments when 'Mum' turns and smiles and says 'hello'. Something inside is aware, the hand squeezes tight and you know that something is really there. Yes, it's a terribly cruel thing and ravages the heart and soul of the 'carer' in ways which perhaps are only now being addressed much more seriously. I suppose that LOVE in all its pure and rather wonderful beauty can transcend self-pity, all of that pain and anguish and guilt which looms up before you each morning you awaken and when you retire to a lonely bed and an empty house. That LOVE is within all of us, within the moment. The rest is thought, ifs and buts, hopes and regrets -- all of these are redundant. The 'moment' when the hand is squeezed, or the eyes shine, or the smile breaks over that unique and all so familiar face - or when that so very precious moment of lucidity seems to herald a 'return' ..... each of these moments, are the truth. It is like the early morning sun breaking over the horizon - impossible to repeat, impossible to capture - because the 'moment' is sacred. All the rest remains OUR problem, however frustrating, complex, unfair or hateful. We are creatures of memory and memories are history. My mother is soon to be 99. She is here and now. Thus, each and every 'moment' whilst I sit with her is all that counts. I'll not carry anything away with me, nor dwell on the ifs and buts. For none of that will in any way help her now. But I will never, ever abandon her. Now, like a vulnerable child who was once the nurturing mother, love embraces all and everything beyond. In a strange and perhaps very profound way, it is a privilege and a truly meaningful one. You have my heartfelt respect, all of you who now care for a loved one, in whatever individual circumstances you find yourselves embroiled. However seemingly hopeless, pain-stricken, never-ending, desperate .... address 'the moment'. For that is all there truly is.
