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Unable to cope with how mum died

Hazara8

Registered User
Apr 6, 2015
416
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.
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.
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.
 

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
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.
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.
I have as near as can be had the same experience, the apparent lucidity, the refusal of food and the chocking over fluids with a consequent chest infection, although the final period was 6 days but I knew it could go on longer. I am trying to make sense of it all and making some progress but Alzheimer’s and other conditions defeats in the end. Your posts are poignant and true. I do find The Selfish Pig’s Guide to Caring very helpful even now because he describes the aftermath, which he is imagining, so well. Also helps me with the actual experience of caring for my husband.
 

Hazara8

Registered User
Apr 6, 2015
416
In
I have as near as can be had the same experience, the apparent lucidity, the refusal of food and the chocking over fluids with a consequent chest infection, although the final period was 6 days but I knew it could go on longer. I am trying to make sense of it all and making some progress but Alzheimer’s and other conditions defeats in the end. Your posts are poignant and true. I do find The Selfish Pig’s Guide to Caring very helpful even now because he describes the aftermath, which he is imagining, so well. Also helps me with the actual experience of caring for my husband.
Until you actually CARE you cannot know but you can imagine. That is of course light years away from the actuality. If you are one to one in all of this, that can be exceedingly demanding. People have been very kind in their response to some of my posts because they can relate. During the course of caring l could not set pen to paper because l was in involved continuously with caring. Besides, as you will know as well as anyone, the 'here and now' of actual care is so intense that any notion of reportage or leisurely setting down of personal plan sheets as might be the case in a Home environment, is in the clouds. As you are the one caring and you are the one feeling all the feelings it matters not a great deal at the end of the day, what recourse one has to either my words or anyone else's, YOU have to address it and make sense of it. Having said that, l confess to much in depth reading of professional texts, medical books, the physiology of the brain and the activity of brain cells that become damaged and the many types of dementias and so on. None of which changed incontinence pads nor alleviated the cries of a frightened mother in the depths of night and the depths of genuine bewilderment. Then something else comes into play and it is not something you can easily explain, if indeed at all. Perhaps the closest description would be that simplistic term "comfort". The same kind of comfort which was afforded me by my father when as a very small boy, l experienced terrifying nightmares. He would come in the dead of night, take hold of my hand and stay with me, sometimes for hours, despite having to go to work early next morning. That simple act of being there and rendering what was an unsafe world, safe and giving of a depth of care which requires little if anything other than being present in time, was nevertheless a powerful gesture of love devoid of words. Sometimes that is when dementia can take a back seat. At least for that precious moment in time.