There is a constant in all of this which does not recognise personal feelings, sentiment nor professional input, however well intentioned, and that is the raw reality of end-of-life.This is the difficult part. Nobody realised that he was dying up to the end except for me and our daughter. That’s because he never stopped being self aware I don’t think, because he smiled weakly said he was fine even while he was dying and that was heartbreaking. Even the doctor who saw him and six days later when I called to tell him said ‘oh that was quick’. I was astounded but everyone was shocked that he had died. I have really dug deep and am doing some self rescue or preservation, which ever you prefer. Day at a time but it’s hard when only fellow carers really get it.
Nothing can change that and despite mankind's attempts to the contrary by way of " beliefs" , this remains a very real fact and cannot wisely be challenged. Dementia robs the mind of retention and muddles a brain in such a manner as to alleviate the problematical aspect of this "fact". Thus we witness what seems to be calm and collected behaviour as life draws to a close, even extraordinary lucidity. Of course when the physical body shuts down that process presents in varied ways, but the biological process is probably close to textbook if you care to study it. However, with dementia and l cite Alzheimer's with vascular dementia for purposes you will understand when l relate a personal story. When that time comes it is often difficult to pinpoint just when life will end. Every case is different. The familiar "reluctance " to eat or drink or be encouraged in any way, can be very hard to behold or indeed accept. Surely if they would just take that small yoghurt or sip that capsule of water and sustain themselves? Instead of open refusal and maybe " normal" responses to confirm same. All very frustrating, upsetting, confusing. And so, the one who has lived with " mixed dementia " for some years and slowly succumbed to all that unforgiving disease can inflict on body and mind, enters " end-of-life". The consultant cannot be specific, but it might be two weeks or less. Impossible to be absolutely certain. And during the four weeks, in which no food nor water can be administered and the person never leaves the bed but sleeps for much of that time and you remain alongside them day and night because you would not even contemplate leaving them alone now - you observe, you listen, you wait, sleep, you hold a hand throughout the early hours because that is when the person would sometimes awaken, frightened and confused and you thanked God that you were there.
Then, when the vital signs indicate that the end is nigh - the changing breathing pattern, the permanently closed eyes, the colour of the skin...... the person opens their eyes, sits up in bed and talks clearly and normally for about a minute as if nothing was wrong at all. Two hours later and death is confirmed. It is over. This is my story. Many will recognize comparisons and understand the scenario. Despite everything, the heartbreak and the long endless days of caring and administering to the all so demanding needs of dementia with its mischievous ways and menacing challenges, its cruel intimidating nature and actual destructive pathway - l remain eternally grateful to being present up until the very end of this caring journey. Because it removes the veil of mediocrity from your life. You come very much closer to the substance of any life because dementia shows you what matters most and what matters least of all. That too by the unwitting behest of a loved one in your care. Yes, hard it most certainly is and at times almost unbearable. But then we draw comfort from the fact that we gave comfort and all we could give at the time, to not only a loved one, a mother - but a person. One of us.