Definition of 'late stages of Dementia'
- Thread starter Miss A
- Start date
Learn as you go along
When my dad was ill and died with vascular dementia in 2006 I experienced a similar vacuum of lack of support and knowledge. He had been diagnosed some three years before, but as a family we had very little experience of what to do and as a result, my dad suffered more than he should.
My mum has dementia now, she is 92 and is in later stages of the condition, but I now have much greater understanding and knowledge so have been able to cope much better this time around. For one thing I'm not putting her into a 'home' as I believe that killed my dad off. If I can, i manage to keep her feeling independent by minimising the 'caring' and try to make it seem her life, even though actually I'm doing more or less everything for her.
This site is about the most useful for help, support, advice, reading how,others cope, and comforting that there are so many similar experiences out there, and we are all trying our best, in so many different ways.
When my dad was ill and died with vascular dementia in 2006 I experienced a similar vacuum of lack of support and knowledge. He had been diagnosed some three years before, but as a family we had very little experience of what to do and as a result, my dad suffered more than he should.
My mum has dementia now, she is 92 and is in later stages of the condition, but I now have much greater understanding and knowledge so have been able to cope much better this time around. For one thing I'm not putting her into a 'home' as I believe that killed my dad off. If I can, i manage to keep her feeling independent by minimising the 'caring' and try to make it seem her life, even though actually I'm doing more or less everything for her.
This site is about the most useful for help, support, advice, reading how,others cope, and comforting that there are so many similar experiences out there, and we are all trying our best, in so many different ways.
That is how I felt - no 'Care Home' for my Dad.
I looked after him 24/7 , 365 days / year , for 8 years - but my best wasn't good enough because I just didn't understand about dementia, or even that he had it.
But now, knowing how little information and knowledge I had about his dementia, I wonder if he might have been better off around people who knew more about his condition than I did.
You are really lucky to have another chance at looking after someone you care about - I would give anything to have that chance again, armed with what I have learned ....... the hard way..
And this is exactly the right way - it's what I got wrong - I ' took over ' like a control freak , thinking it was best. My Dad must have felt useless. It cuts me up to think about it.
I am not at peace, and never will be, because I got so much wrong.
" Oh, you did your best with what you knew " , " ... easy in retrospect... " - these don't help me.
Many times I did and said inappropriate things, the wrong things for someone with dementia,.
It hurts me so deeply to think that I may well have made my Dad unhappy at those times..
I did post my story once, but I reconsidered - it was too personal to put into public domain, so I took it off..
I wish you well looking after your mum at home. No one will care for her like you will ; make 100% certain that you are armed with all the knowledge that you need, or where to get it when you need it..
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I guess, we all must decide at some point if we shall enter the realms of the truly angelic, and no matter how torrid the experience becomes, intensify our care. Or take a far more human course and look to our own lives, or what is left of them, and seek a path out of the dark labyrinth into which we have descended in the persuit of the care of those we love. There was a time, a year or so back, when I would have never considered to give up, to give way to the dread thought of “The Care Home”. But now I have to think of the damage, and as was explained to me, it is truly long term damage, that can occur to us if we do not try to understand that there is a time to let go.
I agree JCF - my Mum's in a nursing home and thank god I don't have to do the caring 24/7-I just couldn't and I was a pretty good/dutiful daughter all my life. My Mum was always being told by friends she was so lucky to have me (such a sensible girl!) to support her. Well I did -she had lots of problems and we had a hard life as children due to my alcoholic father but I always told myself that I would draw the line if she ever needed care. I had done my bit.
Yes people who have their parents live with them and want to care to the end themselves seem pretty angelic to me. Maybe the relationship with the parent is much better but I don't think any parent would ask a child to give up an unknown number of years to care for them. Yes they do it for us but that's what happens when we choose to have kids (and kids usually bring much joy and get easier after a while.)
Sorry have gone off the original topic.
Yes people who have their parents live with them and want to care to the end themselves seem pretty angelic to me. Maybe the relationship with the parent is much better but I don't think any parent would ask a child to give up an unknown number of years to care for them. Yes they do it for us but that's what happens when we choose to have kids (and kids usually bring much joy and get easier after a while.)
Sorry have gone off the original topic.
Yes it does indeed depend upon the relationship.
My parents and I had a good relationship, with ups and downs, but I was not a 'good son' for much of the time.
I hope that my own experience of being a lone carer is not typical, because I feel that I was not properly told about my Dad's condition and the consequences of it for his health. I am not making excuses for myself, but I think because I chose to look after my Dad on my own, not wanting physical help , I was left alone to cope without the information that I needed. I am not some objectionable 'know-it-all' that wouldn't listen to advice. I was just never told anything.
My Dad was in hospital a few times for various ailments . Treated and discharged. There was never any follow-up information provided, or cause for future concerns given.
I did what I thought was right for my Dad's care,, even though I didn't do as good a job as I should have done, and have a lot of guilt about many things.
I wish, in a way, that when I found out after my Dad has passed away, I hadn't started to research about people with advanced vascular dementia.
It broke my heart to find out all the mistakes that I made and all warning signs that I missed, and it continues to torment me every single day. I hope no one else has to suffer this emotional turmoil.
For instance, my Dad was a very sociable person, and I should have tried him with a Day Centre to see if he might have enjoyed the company. I kept him at home with me , took him out when he would go,and he must have got bored , although he never said so.
I am not a very outgoing person, not much of a personality, and he should have had more stimulation than I could provide, but I never realised it until now.
I never realised that he wouldn't / couldn't tell me of his feelings because people with advanced dementia can't communicate such things properly. I just assumed he was content.
I consider it a privilege to have been given the chance to care for my Dad.
My biggest regret is that I could have done much better if I had known more about vascular dementia, and had more self-awareness about my own inadequacies.
A lone carer must realise that caring for someone with dementia is a complex task.
Being on your own and dealing with the person you care for can make you blind to their needs.
I think someone from the outside with a 'fresh view' of the situation of the elderly person is essential, from time to time.
I kept my Dad out of the 'care system' , and in his own home , as independent as I could make us , and I am sure that was right for us.
If his last 2 weeks in hospital were anything to judge by , I made a good decision to keep him out of
' the system ' as much as possible.
My Dad never became awkward or violent or aggressive - he was a placid , lovely, amiable, undemanding old guy, whom I loved deeply and miss very much, and who deserved much better care than he got.
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We all have such totally different situations and experiences.
For my family and I it is a strange roller coaster ride in which each day brings a different incarnation.
And these changes occur faster as time goes by. Now My father can wake and I dress him in a smiling passive mood, and by mid day he will ask why we are selling his house and stealing his money.
Then he will sleep for many hours, making it almost impossible to wake him to eat of get him to bed.
Then he will wake and spend hours maybe days when , although he seems shattered, he will not sit down or go to bed, but aimlessly wander the house talking to himself, not registering that anyone else even exists. At other times he will spend the whole evenings bent double in the chair attempting to pick the pattern from the carpet. Or reaching out over and over until he almost falls from the chair, enacting in his head some dream he is seeing. He lives in a constant state of confusion, always asking where we are, are we in a caravan, when do we have to pay, is my mother the attendant or the waitress. At nights he lays in bed talking continuously to his dead relatives. Or he gets up and takes all the clothes from the wardrobes and piles them on the bed. And then at the very point at which my Mother my sister and I have reached the darkest depths of despair, endlessly wondering what we should do, He changes. He suddenly registers for a while what we say. You can hold a conversation with him, almost. Of course, he still sees the children and the other people in the room, and smiles, as if you are deceiving him by telling them they are not there, but after the terrible dark days, these chinks of light are what we now call, the good days. Such is our life.
For my family and I it is a strange roller coaster ride in which each day brings a different incarnation.
And these changes occur faster as time goes by. Now My father can wake and I dress him in a smiling passive mood, and by mid day he will ask why we are selling his house and stealing his money.
Then he will sleep for many hours, making it almost impossible to wake him to eat of get him to bed.
Then he will wake and spend hours maybe days when , although he seems shattered, he will not sit down or go to bed, but aimlessly wander the house talking to himself, not registering that anyone else even exists. At other times he will spend the whole evenings bent double in the chair attempting to pick the pattern from the carpet. Or reaching out over and over until he almost falls from the chair, enacting in his head some dream he is seeing. He lives in a constant state of confusion, always asking where we are, are we in a caravan, when do we have to pay, is my mother the attendant or the waitress. At nights he lays in bed talking continuously to his dead relatives. Or he gets up and takes all the clothes from the wardrobes and piles them on the bed. And then at the very point at which my Mother my sister and I have reached the darkest depths of despair, endlessly wondering what we should do, He changes. He suddenly registers for a while what we say. You can hold a conversation with him, almost. Of course, he still sees the children and the other people in the room, and smiles, as if you are deceiving him by telling them they are not there, but after the terrible dark days, these chinks of light are what we now call, the good days. Such is our life.
A gift is something you give willingly, something you choose. What I give is based upon being the last man standing, and the absence of easy alternatives. I am quite sure that I am not alone in this predicament.
I daily plot in my imagination the method of my escape. There is nothing grand or fine about what I do. I to, like my father, am just surviving from day to day. It is just matter of who breaks first.
I daily plot in my imagination the method of my escape. There is nothing grand or fine about what I do. I to, like my father, am just surviving from day to day. It is just matter of who breaks first.
JCF, no parent would want their child to just 'survive'. I think most of us who have live and care for an elderly parent start out with the assumption that they will end their days with us. Then the dementia progresses and unless you have had first hand experience nothing can prepare you for the physical and emotional challenges. Dementia unlike many other terminal illnesses can be a marathon - no one can predict how long the journey will be and that in itself can be soul destroying. No parent would want their child to 'break' under the strain - then dementia claims 2 victims. Please don't let dementia break you. Sending warm wishes.
My rant..
I detest these lists of stages with a passion. On the one hand we are told "if you have met one person with dementia, you have met once person with dementia". Then just as you start agreeing with this statement along comes a set of Stages which divides ALL dementia sufferers into 7 categories! From the list Tom posted, my mother had many of those symptoms at the outset and certainly didn't jump into end stage immediately.
It is bad enough to get a diagnosis. My mother had every type of diagnosis possible and it changed every time a new so called specialist saw her. In the end enough was enough. The medical jargon and lists were consuming our lives and at the end of the day it meant diddly squat to my mother who was suffering wit whatever symptoms and challenges which were the order of the day. Were they the same as yesterday? Nope. Will they be the same as tomorrow? Maybe not. I was fed up measuring her agains tick lists. Creating scenarios and plans of action in my mind for many things that never materialised. We had one great bonus...my mother never acknowledged any diagnosis and denied anything being wrong. We as a family stepped away from the whole dementia nightmare and the lack of information and all the lists that seemed to be written for everyone else and not our mother. We then focused on the issues of the day. Dealt with the symptoms as they arose. Helped lesson the effects of loss of skills. Did not do or any things that would have scared the living daylights out of her. It is bad enough having to deal with someone who has a degenerative illness that is not curable without studying them to see if, by the stages list, they were making short steps or log strides and were now merely "waiting for God". It just piles on your stress at a time where normal every day coping is more stressful than anyone should have to endure.
In our experience my mother was born contrary. She ended her life still remaining contrary in respect of the lists of stages. I don't think she ever fitted into a category and certainly not that you could ever badge her as one thing or another.
My fear is that trying to assess people with the stages, where does this lead us to? Take care homes for example, do they only have end stage residents there? What about the family for their own specific reasons arranges a care home for a person who is badged as early stages? Is that a bad thing for them to have done? I would like to bet that no one has ever sat down with that list of stages and used them to decide if it is time for a care home or not. So, what is their purpose? Seriously?
Ok, rant over. These are just my experiences and I acknowledge that others may find them useful.
Fiona
I detest these lists of stages with a passion. On the one hand we are told "if you have met one person with dementia, you have met once person with dementia". Then just as you start agreeing with this statement along comes a set of Stages which divides ALL dementia sufferers into 7 categories! From the list Tom posted, my mother had many of those symptoms at the outset and certainly didn't jump into end stage immediately.
It is bad enough to get a diagnosis. My mother had every type of diagnosis possible and it changed every time a new so called specialist saw her. In the end enough was enough. The medical jargon and lists were consuming our lives and at the end of the day it meant diddly squat to my mother who was suffering wit whatever symptoms and challenges which were the order of the day. Were they the same as yesterday? Nope. Will they be the same as tomorrow? Maybe not. I was fed up measuring her agains tick lists. Creating scenarios and plans of action in my mind for many things that never materialised. We had one great bonus...my mother never acknowledged any diagnosis and denied anything being wrong. We as a family stepped away from the whole dementia nightmare and the lack of information and all the lists that seemed to be written for everyone else and not our mother. We then focused on the issues of the day. Dealt with the symptoms as they arose. Helped lesson the effects of loss of skills. Did not do or any things that would have scared the living daylights out of her. It is bad enough having to deal with someone who has a degenerative illness that is not curable without studying them to see if, by the stages list, they were making short steps or log strides and were now merely "waiting for God". It just piles on your stress at a time where normal every day coping is more stressful than anyone should have to endure.
In our experience my mother was born contrary. She ended her life still remaining contrary in respect of the lists of stages. I don't think she ever fitted into a category and certainly not that you could ever badge her as one thing or another.
My fear is that trying to assess people with the stages, where does this lead us to? Take care homes for example, do they only have end stage residents there? What about the family for their own specific reasons arranges a care home for a person who is badged as early stages? Is that a bad thing for them to have done? I would like to bet that no one has ever sat down with that list of stages and used them to decide if it is time for a care home or not. So, what is their purpose? Seriously?
Ok, rant over. These are just my experiences and I acknowledge that others may find them useful.
Fiona
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I suppose my mother is late stage. She is 95 and has had AD for around 12 years, though I lose track now. Her speech is largely unintelligible, she doesn't recognise any of her family any more, though I sometimes think that somewhere deep down, she is vaguely aware that she knows us. She is incontinent and spends a lot of time either dozing or sleeping. She can still walk, though is very wobbly and often falls, and forgot some time ago e.g. how to get in or out of a car, or how to sit on the loo. She still eats and drinks, though very little, and often needs encouraging to finish a cup of tea.
But I tend to think of her 'stages' in a different way.
There was the early stage of simply forgetting everything and repeating herself a lot.
There was the stage of wearing dirty clothes and refusing to shower. There was the 'nasty' stage, when she would accuse us all of all sorts, and say horrible things about various family members. There was the stage of insisting on closing all the curtains at 5 pm even in the middle of summer, and going to bed. There was the stage (endless) of refusing to leave the house at all. There was the stage of often saying she was frightened, though she could never say what she was frightened of. There was the stage of hitting the sherry bottle hard, even in the early morning, when she had never really liked alcohol much. There was the stage of constant, constant phone calls. Of course a lot of these overlapped.
After she went into the CH there was a long stage of endlessly asking or demanding to go home, sometimes angrily, with accusations that we were all after her money. Later there was a stage of constantly asking about her parents, were they OK, could she go and see them.
Virtually all these have now passed, and at least she is nearly always relatively peaceful now, not agitated or distressed or frightened or angry about anything. And from a purely selfish point of view I have to say it is much easier to visit her now - at least my stomach is not in knots every time I go. I 'lost' my mother so long ago now that I barely feel it any more. She is just a very poor old thing I still love and visit often, and to tell the truth I am very glad that she is now peaceful, even though it is only because she is so much worse. The angry/distressed/frightened stages were so much harder to witness.
But I tend to think of her 'stages' in a different way.
There was the early stage of simply forgetting everything and repeating herself a lot.
There was the stage of wearing dirty clothes and refusing to shower. There was the 'nasty' stage, when she would accuse us all of all sorts, and say horrible things about various family members. There was the stage of insisting on closing all the curtains at 5 pm even in the middle of summer, and going to bed. There was the stage (endless) of refusing to leave the house at all. There was the stage of often saying she was frightened, though she could never say what she was frightened of. There was the stage of hitting the sherry bottle hard, even in the early morning, when she had never really liked alcohol much. There was the stage of constant, constant phone calls. Of course a lot of these overlapped.
After she went into the CH there was a long stage of endlessly asking or demanding to go home, sometimes angrily, with accusations that we were all after her money. Later there was a stage of constantly asking about her parents, were they OK, could she go and see them.
Virtually all these have now passed, and at least she is nearly always relatively peaceful now, not agitated or distressed or frightened or angry about anything. And from a purely selfish point of view I have to say it is much easier to visit her now - at least my stomach is not in knots every time I go. I 'lost' my mother so long ago now that I barely feel it any more. She is just a very poor old thing I still love and visit often, and to tell the truth I am very glad that she is now peaceful, even though it is only because she is so much worse. The angry/distressed/frightened stages were so much harder to witness.
Fiona,
That is one of the beat posts I've read on here. You sum up my sentiments exactly. From the very start of my wife's illness she never accepted she was ill and I went along with that. I knew nothing about Alzheimer's nor did I attempt to learn about stages. What was to happen would happen as part of our lives.
With reference to other peoples approach, I only came 'on line' at the very end of my wife's life. Then, I wished to learn how other people that were caring for a loved one on their own, in there own home 24/7 year on year. I had no such luck, and like the 'professionals' was told it was not possible. Then they keep telling me my wife was dying when she was bedridden, I took little notice and carried on in my own way.
Such remarks as "She's shutting down" when she refused to eat I ignored and thank God I did. At least one lady Psychologist who resigned from the NHS had the good grace to send me an email: "You proved them all wrong." Over the years we had four different Psychologists assigned to us. The final one, a 64 yr old who had witnessed the improvements in my wife's physical health; (I had refused to leave her bedridden) approached me after my wife's passing, with a request to record of my approach to caring for my wife. Later I agreed to a number of his students attend my home for question and answer sessions.
There is no doubt that I was very fortunate in so many ways to have been capable to go it alone. What I learned along the way will not be found in a book.
From what I read nowadays it appears the answer to may of the problems of AD is medication. At no stage did my wife have medication for Alzheimer's. I sought to treat the underlying causes from which she suffered whilst in the care of a Nursing Home for a short period. Prevention was a better cure.
Caring for some one in the 'late stages' is not unlike caring for a child. In caring alone I learned a lot about myself, and most of all what women have to put up with all their lives. The washing, cooking, ironing, cleaning, shopping etc in addition to raising children. It was a very humbling experience. Now that I live alone I ask myself, is there no let up in the cooking, cleaning etc and do women ever get bored with it all?
I have posted on the same subject "If you met one person with dementia, you have met one person with dementia." The problem is with the social system. From the time you go to school, you're forced to conform. Now some people go to parenting classes!
One big advantage I've had over most people is that there was nothing conventional about my life from the very start. As a result I ignore set social boundaries.
It just might be that I'm unlikely to suffer with dementia as I've always had to use my brain. From the start there was no family or adult to turn to, my education was to observe, listen and learn then live life my way. The result, I maintain control of my life and not follow the herd. There's too much 'training'. Learning is a never ending process, the inquisitiveness form childhood should be encouraged not stifled.
Forgive my rant, it may make sense to some!
That is one of the beat posts I've read on here. You sum up my sentiments exactly. From the very start of my wife's illness she never accepted she was ill and I went along with that. I knew nothing about Alzheimer's nor did I attempt to learn about stages. What was to happen would happen as part of our lives.
With reference to other peoples approach, I only came 'on line' at the very end of my wife's life. Then, I wished to learn how other people that were caring for a loved one on their own, in there own home 24/7 year on year. I had no such luck, and like the 'professionals' was told it was not possible. Then they keep telling me my wife was dying when she was bedridden, I took little notice and carried on in my own way.
Such remarks as "She's shutting down" when she refused to eat I ignored and thank God I did. At least one lady Psychologist who resigned from the NHS had the good grace to send me an email: "You proved them all wrong." Over the years we had four different Psychologists assigned to us. The final one, a 64 yr old who had witnessed the improvements in my wife's physical health; (I had refused to leave her bedridden) approached me after my wife's passing, with a request to record of my approach to caring for my wife. Later I agreed to a number of his students attend my home for question and answer sessions.
There is no doubt that I was very fortunate in so many ways to have been capable to go it alone. What I learned along the way will not be found in a book.
From what I read nowadays it appears the answer to may of the problems of AD is medication. At no stage did my wife have medication for Alzheimer's. I sought to treat the underlying causes from which she suffered whilst in the care of a Nursing Home for a short period. Prevention was a better cure.
Caring for some one in the 'late stages' is not unlike caring for a child. In caring alone I learned a lot about myself, and most of all what women have to put up with all their lives. The washing, cooking, ironing, cleaning, shopping etc in addition to raising children. It was a very humbling experience. Now that I live alone I ask myself, is there no let up in the cooking, cleaning etc and do women ever get bored with it all?
I have posted on the same subject "If you met one person with dementia, you have met one person with dementia." The problem is with the social system. From the time you go to school, you're forced to conform. Now some people go to parenting classes!
One big advantage I've had over most people is that there was nothing conventional about my life from the very start. As a result I ignore set social boundaries.
It just might be that I'm unlikely to suffer with dementia as I've always had to use my brain. From the start there was no family or adult to turn to, my education was to observe, listen and learn then live life my way. The result, I maintain control of my life and not follow the herd. There's too much 'training'. Learning is a never ending process, the inquisitiveness form childhood should be encouraged not stifled.
Forgive my rant, it may make sense to some!
The posts above make a lot of sense to me ... however, when I was trying to make sense of the disaster afflicting my Mum I needed whatever information I could get hold of about AD and VasD to "ground" me and give me some idea what things would be like in the future.
Mum is probably at late stage in her dementia now, I know how variable the disease is different individuals and what I now want help with is discovering how best to deal with "life" issues that are a consequence of the disease (eg incontinence).
Mum is probably at late stage in her dementia now, I know how variable the disease is different individuals and what I now want help with is discovering how best to deal with "life" issues that are a consequence of the disease (eg incontinence).
My gran unfortunately has all the symptoms of late stage dementia and I find over the past couple months she is unresponsive and is now struggling to hold her head up she kind of leans to the side! It's utterly heartbreaking to watch her decline, I am only 24 my gran is in a CH has been for 3 years!
The point at which the carer can no longer care can be defined as the later stages of dementia.
Because if you ask “when should I seek social assistance with the care of my loved one” which is in all honesty what we all ask. The answer is “ when you feel you can no longer care for them”
As long as you can take on the all consuming care that that is needed, then no one will assume you cannot. No one will offer you the way out. You will have to consciously decide that the time has finally come. I guess I may sound rather negative. But I find so much on the subject is written from a seeming unrealistic positive view, that it can make some people feel that their feelings are bad. Remember that you have your own life. Most likely if your loved one was able to express themselves clearly they would wish that you make the best of what life you have. Rather than spend the best part of it lost in a world of stress and pain.
I feel I should apologize for my rather negative comments. I mean no harm. Just speaking what I feel
Because if you ask “when should I seek social assistance with the care of my loved one” which is in all honesty what we all ask. The answer is “ when you feel you can no longer care for them”
As long as you can take on the all consuming care that that is needed, then no one will assume you cannot. No one will offer you the way out. You will have to consciously decide that the time has finally come. I guess I may sound rather negative. But I find so much on the subject is written from a seeming unrealistic positive view, that it can make some people feel that their feelings are bad. Remember that you have your own life. Most likely if your loved one was able to express themselves clearly they would wish that you make the best of what life you have. Rather than spend the best part of it lost in a world of stress and pain.
I feel I should apologize for my rather negative comments. I mean no harm. Just speaking what I feel
Are we talking of 'later stages of Dementia' for the carer or the sufferer? Some carers place there relative in a Nursing Home when they are capable of talking, walking and capable of feeding themselves. Some might consider that to be the late stage.
If we mean by 'later stage stage' for the patient, from personal experience, I'd say I never really knew its meaning.
The one fact I did know and accepted was, that it was a terminal illness and that each moment shared was to be treasured. As the saying goes: "They are a long time dead."
Had I accepted what all the 'experts' said and wrote in the medical diary (which I still retain) my wife would have died a number of times during the nine month period following her removal from a Nursing Home.
She pass away four years following their predictions. After those nine months all the medical staff vanished, but left their diary. From being bedridden and refusing food I chose to live life as normal as was possible once I got her back to good physical health.
Initially she could not support her head when I lifted her into her wheelchair.
For a while it took one hand to support her head while I pushed the chair with the other. The final pictures of her were taken just three weeks before she passed, they were of us at the supermarket.
When would you say 'her' final stage was? Was it six years earlier, on entry to a Nursing Home when she was wheelchair bound, doubly incontinent, had little speech and could not feed herself? The only certainty is death. Time is the best gift their is, it can't be bought.
Don't think I should be posting here as my perceptions of life don't conform to the norm.
If we mean by 'later stage stage' for the patient, from personal experience, I'd say I never really knew its meaning.
The one fact I did know and accepted was, that it was a terminal illness and that each moment shared was to be treasured. As the saying goes: "They are a long time dead."
Had I accepted what all the 'experts' said and wrote in the medical diary (which I still retain) my wife would have died a number of times during the nine month period following her removal from a Nursing Home.
She pass away four years following their predictions. After those nine months all the medical staff vanished, but left their diary. From being bedridden and refusing food I chose to live life as normal as was possible once I got her back to good physical health.
Initially she could not support her head when I lifted her into her wheelchair.
For a while it took one hand to support her head while I pushed the chair with the other. The final pictures of her were taken just three weeks before she passed, they were of us at the supermarket.
When would you say 'her' final stage was? Was it six years earlier, on entry to a Nursing Home when she was wheelchair bound, doubly incontinent, had little speech and could not feed herself? The only certainty is death. Time is the best gift their is, it can't be bought.
Don't think I should be posting here as my perceptions of life don't conform to the norm.
"Don't think I should be posting here as my perceptions of life don't conform to the norm"
You are just the sort of person who should be posting here.
everything you say makes sense to me.
There might be something in what you feel is your unconventional view that resonates or touches someone else who comes here for some kind of answer.
I spent a great deal of my life looking into the very none conformist unconventional norms of thinking. But none of that prepared me for the reality of dealing daily with the slow disintegration of another being, my father.
Today he is pretty much beyond any communication beyond basic functions. I watch my mother try to deal with it by feigning ignorance of the true impact.
I read that my mother and I should participate in these performed day dreams in which he seems totally lost. We tried, but after a while this just becomes a process of saying, yes sure, whatever you say. How terrible that we have become to be so negative.
But it is is maybe born of endless nights of lost sleep spent watching for fear that he will fall as he wanders around eyes tight shut talking to long lost relatives.
For anyone out there who would like an opinion that wanders far from the norm then I can say that what is left of my Father is not my father at all. He no longer has dementia, like someone might have a disease. He is dementia.
We are at best a fragile configuration of a collection of memories, likes and dislikes. And upon this bag of randomly collected experiences that we gather together through life, is written our name.
Dementia, in its latter stages, takes this bag and rips it apart, so that the owner can never again recall the order or the meaning of its contents. The most terrible thing that can happen is that one might be even vaguely aware of the devastation.
Maybe what keeps some of us nailed to our course is the contemplation of this terrible thought.
You are just the sort of person who should be posting here.
everything you say makes sense to me.
There might be something in what you feel is your unconventional view that resonates or touches someone else who comes here for some kind of answer.
I spent a great deal of my life looking into the very none conformist unconventional norms of thinking. But none of that prepared me for the reality of dealing daily with the slow disintegration of another being, my father.
Today he is pretty much beyond any communication beyond basic functions. I watch my mother try to deal with it by feigning ignorance of the true impact.
I read that my mother and I should participate in these performed day dreams in which he seems totally lost. We tried, but after a while this just becomes a process of saying, yes sure, whatever you say. How terrible that we have become to be so negative.
But it is is maybe born of endless nights of lost sleep spent watching for fear that he will fall as he wanders around eyes tight shut talking to long lost relatives.
For anyone out there who would like an opinion that wanders far from the norm then I can say that what is left of my Father is not my father at all. He no longer has dementia, like someone might have a disease. He is dementia.
We are at best a fragile configuration of a collection of memories, likes and dislikes. And upon this bag of randomly collected experiences that we gather together through life, is written our name.
Dementia, in its latter stages, takes this bag and rips it apart, so that the owner can never again recall the order or the meaning of its contents. The most terrible thing that can happen is that one might be even vaguely aware of the devastation.
Maybe what keeps some of us nailed to our course is the contemplation of this terrible thought.
You are the sort of person who should be posting here!
Your amazingly effective words: Dementia, in its latter stages, takes this bag and rips it apart, so that the owner can never again recall the order or the meaning of its contents. The most terrible thing that can happen is that one might be even vaguely aware of the devastation.
Your amazingly effective words: Dementia, in its latter stages, takes this bag and rips it apart, so that the owner can never again recall the order or the meaning of its contents. The most terrible thing that can happen is that one might be even vaguely aware of the devastation.
I've only just come to this thread and I have to say it is just brilliant. For a long time I castigated my husband for not wanting to know and refusing any further tests. He is an absolute mass of physical problems and slowly his brain is deteriorating. But now further on I understand why at least to some extent. The sheer misery of repeated hospital visits unsuccessful treatments- what do they achieve?
Add to that the reluctance of the professions to do anything except lecture a heavy drinker I quite appreciate his point of view. The harm is done now and its never landed him in trouble with the law,been a drain on the nhs or ruined his life or mine. I wish it had been different but we both made our choices. Whether his dementia is a result of his lifestyle is not an issue- he is ill, does it matter now why? Its a label and will not contribute anything to his care.
In my opinion leaving the poor man in peace is more important than sticking labels on him.
