Unable to cope with how mum died

Grahamstown

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Jan 12, 2018
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I came to this thread for some comfort as I weep for my dear husband who died in the early hours of yesterday morning and I find us all suffering in the same way which gives me some sort of crazy comfort. I knew this would be the best place to be and so it is. The sheer ghastliness of dying from the starvation symptoms of Alzheimer’s disease would cripple the stoutest person so we are right to be so traumatised. Will it fade eventually? I have no idea but I saw him through the passage to death and so must try to live for both of us. One just does not ‘get over’ or ‘learn to live with it’ one just lives along side of the lost person whom you hold in your heart. I told him that as he lay dying without any understanding of it and it seemed to make him tranquil. So I must keep telling myself the same thing and hope that I gain some peace. He seemed more lucid as the end approached which helped his children and me.
 

Izzy

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Aug 31, 2003
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@Grahamstown its so early for you. My heart goes out for you. I remember the early days even though it’s coming up for 4 years since my husband died.

Will it fade eventually? I don’t think it ever goes away but it changes. I still go back to this clip. I think the diagram a couple of minutes in sums it up for me.


Wishing you strength.
 

myss

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Jan 14, 2018
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I came to this thread for some comfort as I weep for my dear husband who died in the early hours of yesterday morning and I find us all suffering in the same way which gives me some sort of crazy comfort. I knew this would be the best place to be and so it is. The sheer ghastliness of dying from the starvation symptoms of Alzheimer’s disease would cripple the stoutest person so we are right to be so traumatised. Will it fade eventually? I have no idea but I saw him through the passage to death and so must try to live for both of us. One just does not ‘get over’ or ‘learn to live with it’ one just lives along side of the lost person whom you hold in your heart. I told him that as he lay dying without any understanding of it and it seemed to make him tranquil. So I must keep telling myself the same thing and hope that I gain some peace. He seemed more lucid as the end approached which helped his children and me.
I'm so sorry to hear of your loss @Grahamstown I too am feeling the pain of a recent loss of my father. Your post - even at this sad time - touched many emotions and thoughts I have been having too. All the best to you x
 

Hazara8

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Apr 6, 2015
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I came to this thread for some comfort as I weep for my dear husband who died in the early hours of yesterday morning and I find us all suffering in the same way which gives me some sort of crazy comfort. I knew this would be the best place to be and so it is. The sheer ghastliness of dying from the starvation symptoms of Alzheimer’s disease would cripple the stoutest person so we are right to be so traumatised. Will it fade eventually? I have no idea but I saw him through the passage to death and so must try to live for both of us. One just does not ‘get over’ or ‘learn to live with it’ one just lives along side of the lost person whom you hold in your heart. I told him that as he lay dying without any understanding of it and it seemed to make him tranquil. So I must keep telling myself the same thing and hope that I gain some peace. He seemed more lucid as the end approached which helped his children and me.
Even in this modern age, the death of someone so very close, loved and perceived as part of what you are yourself, is a major challenge to what is seemingly a "normal" state of mind. There are numerous explanations as to why this happens or how best to cope. In all of this, the " reality" remains constant. The loved one has died. We all know intellecually that life ends for everything on this Earth and yet deep within the psyche exists a constant denial. Hopefully any end of life is neither violent, uncalled for nor of the particularly demanding nature of dementia, or specifically Alzheimer's disease. The journey through all the varied traits and very challenging moments which Alzheimer's brings about, can be so very much alike a bereavement that you already have an innate sense of "loss" as a precursor to the inevitable physical loss to come. When the latter arrives and that journey ends, the mind and heart suddenly and without sentiment nor any outside influence whatsoever, confront actual truth. The death being truth. Like the rising sun or the ebb and flow of the ocean in nature, a truth. Reality. Bereavement resides in the mind. Recall and memory. Very powerful in these terms. Very painful and often unbearable. So "thoughts " govern that pain, that loss. All the long history of a loving relationship and everything that relationship embraced in a life. The great irony of dementia or let us select Alzheimer's here, is that short term memory can vanish and any trauma with it. The " thought" has died. Then perhaps unwittingly a family member reminds a parent that their spouse died twenty years ago and the parent undergoes a very real " bereavement " there and then. I have seen this more than once and it was initially very destructive. So the actual "thought" held so closely to the heart, the image of a loved one the image of their presence and the memory of touch and so on - all this plays on the mind and heart and in a profoundly debilitating manner, at least for a given time. Only you know how you feel. Only you know about the story of your own life. Only you know how the Alzheimer's journey affected you and the person living with that disease. One thing remains a truth and cannot be denied nor harmed in any way. The moments of joy, laughter and simple happiness which took place between two people , the inexplicable expression of love between two people that required no explanation, the moments of drama, uncertainty and life's unpredictability - all of that cannot die because it took place and died in an instant it took place. There is a tremendous beauty in that because nothing can change it nor ever touch it. Our thoughts alas can be problematical in as much as they strive to re-live those unique moments which took place in the moment. Our sense of loss resides in this domain of "what was" and it can be very hard to address at such a time as the loss of a loved one. If nothing else, this platform enables people to open their hearts, to reveal their individual stories and to inform us that we are most certainly not alone. That relationship is of great value because it allows communication from the heart. And it confirms our humanity, which must be wholly good.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
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Even in this modern age, the death of someone so very close, loved and perceived as part of what you are yourself, is a major challenge to what is seemingly a "normal" state of mind. There are numerous explanations as to why this happens or how best to cope. In all of this, the " reality" remains constant. The loved one has died. We all know intellecually that life ends for everything on this Earth and yet deep within the psyche exists a constant denial. Hopefully any end of life is neither violent, uncalled for nor of the particularly demanding nature of dementia, or specifically Alzheimer's disease. The journey through all the varied traits and very challenging moments which Alzheimer's brings about, can be so very much alike a bereavement that you already have an innate sense of "loss" as a precursor to the inevitable physical loss to come. When the latter arrives and that journey ends, the mind and heart suddenly and without sentiment nor any outside influence whatsoever, confront actual truth. The death being truth. Like the rising sun or the ebb and flow of the ocean in nature, a truth. Reality. Bereavement resides in the mind. Recall and memory. Very powerful in these terms. Very painful and often unbearable. So "thoughts " govern that pain, that loss. All the long history of a loving relationship and everything that relationship embraced in a life. The great irony of dementia or let us select Alzheimer's here, is that short term memory can vanish and any trauma with it. The " thought" has died. Then perhaps unwittingly a family member reminds a parent that their spouse died twenty years ago and the parent undergoes a very real " bereavement " there and then. I have seen this more than once and it was initially very destructive. So the actual "thought" held so closely to the heart, the image of a loved one the image of their presence and the memory of touch and so on - all this plays on the mind and heart and in a profoundly debilitating manner, at least for a given time. Only you know how you feel. Only you know about the story of your own life. Only you know how the Alzheimer's journey affected you and the person living with that disease. One thing remains a truth and cannot be denied nor harmed in any way. The moments of joy, laughter and simple happiness which took place between two people , the inexplicable expression of love between two people that required no explanation, the moments of drama, uncertainty and life's unpredictability - all of that cannot die because it took place and died in an instant it took place. There is a tremendous beauty in that because nothing can change it nor ever touch it. Our thoughts alas can be problematical in as much as they strive to re-live those unique moments which took place in the moment. Our sense of loss resides in this domain of "what was" and it can be very hard to address at such a time as the loss of a loved one. If nothing else, this platform enables people to open their hearts, to reveal their individual stories and to inform us that we are most certainly not alone. That relationship is of great value because it allows communication from the heart. And it confirms our humanity, which must be wholly good.
Beautifully worded.
x
 

DesperateofDevon

Registered User
Jul 7, 2019
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This weekend I was sorting paperwork from Aged Mothers.
I found photographs of Dad on our first family holiday abroad.
My heart felt like it was breaking all over again... .... yet this week I want to change my environment somehow- paint & a good clearing out of life’s accumulated clutter it seems is the answer for me!

I must be moving forward through the “grieving process” as I actually have formulated a plan - I’m going to be selling my accumulated clutter the proceeds will enable me to purchase plants & create an area in my garden Dad would have loved!

I will have a little green sanctuary of plants enveloping me.
Yep ....I’m doggy paddling- head not always above water but I’m sort of afloat.
I read others posts & they are so eloquent & poignant - then there is me..... there’s no right or wrong way to try & get through bereavement....we are just tip toeing along a tightrope ( partially blindfolded !)
 

Grahamstown

Registered User
Jan 12, 2018
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84
East of England
This weekend I was sorting paperwork from Aged Mothers.
I found photographs of Dad on our first family holiday abroad.
My heart felt like it was breaking all over again... .... yet this week I want to change my environment somehow- paint & a good clearing out of life’s accumulated clutter it seems is the answer for me!

I must be moving forward through the “grieving process” as I actually have formulated a plan - I’m going to be selling my accumulated clutter the proceeds will enable me to purchase plants & create an area in my garden Dad would have loved!

I will have a little green sanctuary of plants enveloping me.
Yep ....I’m doggy paddling- head not always above water but I’m sort of afloat.
I read others posts & they are so eloquent & poignant - then there is me..... there’s no right or wrong way to try & get through bereavement....we are just tip toeing along a tightrope ( partially blindfolded !)
I have just been asked for some photos of my husband for a memorial piece and I found one in my files from eight years ago and there he was golden and handsome looking quite his old normal self. it was rough and I know how painful these old photos can be. On the other hand it does dispel the ghastly image of his last week from my retina. A little green sanctuary sounds absolutely lovely and a good idea for a more optimistic journey.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
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I have just been asked for some photos of my husband for a memorial piece and I found one in my files from eight years ago and there he was golden and handsome looking quite his old normal self. it was rough and I know how painful these old photos can be. On the other hand it does dispel the ghastly image of his last week from my retina. A little green sanctuary sounds absolutely lovely and a good idea for a more optimistic journey.
dad loved nature & his gardening
It seems fitting & is a positive thing to plan & do.
x
 

DesperateofDevon

Registered User
Jul 7, 2019
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DF492705-1EF6-4F5D-AA30-3AA1B0AA2D96.jpeg

When my “tummy mummy “ ( I’m adopted) passed away june 2018 for the first time in 20 years this lily flowered.

my Dad bought me an orchid years ago, I’ve kept it though it’s never flowered or grown since purchase .... but it has since Dad passed sprouted a flower spike & I will photo the first flower when it finally blooms .
Coincidence....maybe but for me it has meaning .
The first time I meet my “tummy mummy “ I took her a bunch of my favourite flowers - white lilies
So the flowering of plants though totally natural has uncanny timing at times.

maybe one day you will sit & have a cup of tea with me in my green oasis. It’s a nice thought
 

DesperateofDevon

Registered User
Jul 7, 2019
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How lovely that would be! The progress of your project will be fascinating to follow.
My car booting success is hampered by continual wind & rain! No one will by broken China!! So painting & redecorating frenzy in full swing!
come summer ... hopefully with sunshine ..we have a date!
 

Tracyv

New member
Feb 20, 2020
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0
Hi
I've just lost my mum to alzheimers and I'm really struggling to accept it
We were very close and although she was very old (93) we spoke at least once a day, and saw each other very regularly, the last two years, my husband who was between jobs started going in as mums carer and the last nearly year she had to go in a care home
 

Grahamstown

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Jan 12, 2018
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East of England
Hi
I've just lost my mum to alzheimers and I'm really struggling to accept it
I am so sorry for your loss especially because I have just suffered the loss of my husband a week ago today. I am finding it hard, and very conflicting because I have images of him when he was well floating in front of me and then images of him in his last days. I am trying to take baby steps which a friend told me as well as the kind people on TP. I am with you in spirit if not in fact because of the suffering but be kind to yourself, let yourself grieve as much as you want, if you need to talk call the bereavement number the Registration Office give you or go to a trusted friend. I cannot believe it either but I think it’s because death is so final, there is no way back and that’s so hard.
 

Hazara8

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Apr 6, 2015
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We were very close and although she was very old (93) we spoke at least once a day, and saw each other very regularly, the last two years, my husband who was between jobs started going in as mums carer and the last nearly year she had to go in a care home
The great challenge is in neither accepting nor denying what is a fact. This sounds trite, but the reality lies in the very essence of that being a pure reality. The person has gone. Yet all the associations which make up what the person was - mother, friend, advocate, soul mate , human being - linger very heavily in both heart and mind and therefore act upon the "reality" by way of denial. I wish someone was still here, still here to talk to, to be with, to continue as before. This is what differentiates us from other living things, that ability to convey feelings of loss and to grieve, to experience the pain of such. And then we are told that "time is a great healer" and sometime hence, the pain will subside and life is restored to "normality " once again. But the instant that a loved one, say a mother, dies, that is precisely what takes place, at that moment in time. Not a time before nor a time afterwards. But then and only then as it occurs. That can never change nor be changed, not even by "time" nor the passage of time. So memory makes continuity of the association and all that has gone before, which in itself perpetuates the sense of loss. One sees this in oneself once the initial period of loss passes. My own mother died just weeks away from her 100th birthday. Her journey through Alzheimer's and vascular dementia was comparatively short, yet at times, traumatic and certainly extremely challenging. The intensity of "care" during the latter period drew upon reserves which one did not realise existed in a human body or mind. A one-to-one relationship, I.e. son and mother, becomes something quite different once dementia intervenes. Then you become the 'parent ' incarnate, the carer, the protector, the nurse - at the same time you remain in fact the son and you cannot change that. Then, when the regime of care - food preparation, dressing, bedding protection, medication, hospital appointments, comforting, monitoring etc etc - when that becomes subject to confusion and anxiety or open aggression throughout a day and a night, every day and every night, week after week, month after month..... then you realise that dementia is much, much more than just a condition. It is a life sentence, albeit often a very short life sentence. Much more can be said. But those who have trodden this path will understand why this journey of care and all it entails, changes lives. Certainly the one living with this disease - but without question certainly the one caring, caring as a son, daughter or wife or husband or wherever "attachment " and love is profoundly in place. And once that loved one dies all that this caring has entailed, with the angst, the tears, the moments of genuine despair and the moments of respite, laughter, lucidity and profound humanity - this dies too, in an instant. The hollow reality dawns and disarms you emotionally and physically by way of actual heartache. This is the way of dementia without elaborating nor pretence nor any need to authenticate, because one lived it. My own story will be alike many, many others. All real and all as poignant and relevant as the next. We are not scoring points. We are way beyond any of that. And so in recounting our own journeys through dementia care, we communicate by default and without any need to interpret. Like a mirror up to nature, we can understand and we can empathise and know we are never really alone in all of this. And perhaps we are then able to accept the loss or passing of the one so dear to us, as not just factual or irreversible, but a blessing in disguise. Because they no longer suffer in any way and that can only be good. Very good.
 

Shedrech

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Dec 15, 2012
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UK
hello @Tracyv
such sad news
however old or however expected, the death of a mother is a significant moment in life
be as kind to yourself now as you have been to your mum, as she would be to you if only she could
 

Grahamstown

Registered User
Jan 12, 2018
1,746
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84
East of England
The great challenge is in neither accepting nor denying what is a fact. This sounds trite, but the reality lies in the very essence of that being a pure reality. The person has gone. Yet all the associations which make up what the person was - mother, friend, advocate, soul mate , human being - linger very heavily in both heart and mind and therefore act upon the "reality" by way of denial. I wish someone was still here, still here to talk to, to be with, to continue as before. This is what differentiates us from other living things, that ability to convey feelings of loss and to grieve, to experience the pain of such. And then we are told that "time is a great healer" and sometime hence, the pain will subside and life is restored to "normality " once again. But the instant that a loved one, say a mother, dies, that is precisely what takes place, at that moment in time. Not a time before nor a time afterwards. But then and only then as it occurs. That can never change nor be changed, not even by "time" nor the passage of time. So memory makes continuity of the association and all that has gone before, which in itself perpetuates the sense of loss. One sees this in oneself once the initial period of loss passes. My own mother died just weeks away from her 100th birthday. Her journey through Alzheimer's and vascular dementia was comparatively short, yet at times, traumatic and certainly extremely challenging. The intensity of "care" during the latter period drew upon reserves which one did not realise existed in a human body or mind. A one-to-one relationship, I.e. son and mother, becomes something quite different once dementia intervenes. Then you become the 'parent ' incarnate, the carer, the protector, the nurse - at the same time you remain in fact the son and you cannot change that. Then, when the regime of care - food preparation, dressing, bedding protection, medication, hospital appointments, comforting, monitoring etc etc - when that becomes subject to confusion and anxiety or open aggression throughout a day and a night, every day and every night, week after week, month after month..... then you realise that dementia is much, much more than just a condition. It is a life sentence, albeit often a very short life sentence. Much more can be said. But those who have trodden this path will understand why this journey of care and all it entails, changes lives. Certainly the one living with this disease - but without question certainly the one caring, caring as a son, daughter or wife or husband or wherever "attachment " and love is profoundly in place. And once that loved one dies all that this caring has entailed, with the angst, the tears, the moments of genuine despair and the moments of respite, laughter, lucidity and profound humanity - this dies too, in an instant. The hollow reality dawns and disarms you emotionally and physically by way of actual heartache. This is the way of dementia without elaborating nor pretence nor any need to authenticate, because one lived it. My own story will be alike many, many others. All real and all as poignant and relevant as the next. We are not scoring points. We are way beyond any of that. And so in recounting our own journeys through dementia care, we communicate by default and without any need to interpret. Like a mirror up to nature, we can understand and we can empathise and know we are never really alone in all of this. And perhaps we are then able to accept the loss or passing of the one so dear to us, as not just factual or irreversible, but a blessing in disguise. Because they no longer suffer in any way and that can only be good. Very good.
Lovely post and these reasonings are precisely what a person with Alzheimer’s cannot do. I hope this protects them from the full realisation of their plight but I suspect some DO know. We can never know but once they have died we have to try and recover ourselves somehow.
 

Hazara8

Registered User
Apr 6, 2015
697
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Lovely post and these reasonings are precisely what a person with Alzheimer’s cannot do. I hope this protects them from the full realisation of their plight but I suspect some DO know. We can never know but once they have died we have to try and recover ourselves somehow.
That is a truism, presently "we can never know". All the intense research and speculation combined confronts that phrase with trepidation and heartfelt frustration. But there ARE remarkable things which genuinely uplift the sense of helplessness and once witnessed you err on not just hope, but joy. It might be a piece of music or a song. It might be the colour of a dress or cushion. It might be the simple act of holding and stroking a kitten. It might be the holding of a frail hand and the smile that engenders.....
This is why this especial disease remains such a challenge. You mend a broken leg, you apply remarkable skills to correct a faulty heart valve, you reduce pain and trauma by equally remarkable medication and care - but when the brain itself requires attention due to a host of neurological disorders, we apply therapy and perhaps appropriate drugs and ongoing awareness in care, so as to restore normality. Alzheimer's and dementias present a rather more elusive challenge simply because we do not really know? A smile can mask pain, a shout might be simply just a symptom of a UTI, refusing food or medication might simply be anxiety or because there is no understanding as to why it should be taken at all? The list is endless. What is truly a kind of credo in all of this, is that you just cannot apply the compos mentis approach to dementia. You have to step through that door as a guest and behave accordingly. If someone has spent the morning on the beach with the children and it was lovely, despite the fact that they never left the Home and reside hundreds of miles away and their children have retired, that is "factual".....And so you are aware and you maintain that awareness every single moment. This is why the challenge is immense. Yet if you can really commit, then extraordinary things can come about. Then, one day when the journey ends at least a sense of despair or redundancy as a person, does not haunt you. It is perhaps so very ironic that this particular affliction which invades and acts upon the brain in such a dramatic and destructive way, enables insight and promotes true care which can blossom as pure humanity. What a pity this "insight "cannot contaminate the whole human condition, without the need for such an unremitting and devastating disease to bring that about. But at least here, on TP, that awareness is shared in heart and mind and that can only warrant a sense of faith in ourselves which is not false nor self-centred.
 

Grahamstown

Registered User
Jan 12, 2018
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East of England
What is truly a kind of credo in all of this, is that you just cannot apply the compos mentis approach to dementia. You have to step through that door as a guest and behave accordingly.
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.
 

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