Final FantasyDementia ... the real costs.
July 2nd 2007 15:07
It saddens me to see that the government of my country is still quibbling over the costs of drugs such as Aracept which is prescribed for people suffering from various forms of dementia. At £2.50 a day, for this particular drug, it seems such a small price to pay for a drug that can make the long road that suffers and their families face that much easier.
I know many would say well there are other illnesses out there that deserve treating as well but it is my expereince caring for my late father that makes me so cross that the discussion is even being had regarding these drugs.
There is no known cure for dementia and these drugs do not prevent the eventual outcome of the disease HOWEVER they can and do slow down the ineveitable. It is this slowing down that for so many is the wonder of these drugs.
I have seen demntia from both aspects that of caring for someone who was able to take the drugs and as a neighbour of someone who sadly was unable for medical reasons to take the drug. These drugs do not suit everyone and for those who cannot take them the road to the end can be swift and heartbreaking. I watched with growing horror as my neighbour went from a strong and independent man to a shadow of his former self. Unable to reason or understand what was going on until eventually he no longer recognised me - and I had known him since I was 11 years old.
This was something that I found terribly hard to deal with and it was my own personal nightmare that I knew would probably face me with my own father in the not to distant future. A future that mercifully as it happened I never had to face as my father died before he reached that point. And I mean mercifully for me - yeah a very selfish and self-centred point of view I know and I am not ashamed to admit that I was thankful that I never had to face that day.
Dementia is a slow killer ........ it creeps up on people and families so slowly that for a long time nothing is really suspected. How many times do you forget something and put it down to age? Many times - although I am not suggesting that just because you find yourself at the top of the stairs again thinking to yourself, "Now what did I come up here for?" thatyou are suffering from dementia.
But when you realise that a pattern is developing then it is time to ask some serious questions. My father and my neighbour where the same age late 70's early 80's when myself and my neighbour began to think more seriously about the "forgetfullness" dispalyed. In my fathers case it was a fixation on oven chips!! We didnt even eat them that often but everytime he went out to the shops he came back with a bag of frozen chips. It got to the point that i was not only supplying neighbours with children with chips on a weekly basis but that I had to buy a second freezer to cope with the amount of bags bought.
I began to dread going home to see what had been bought that day. Large posters were made and displayed round the house as reminders about all the things that were being forgotten.... NO CHIPS ..... Have you closed the door? Have you taken tablets? and so on although of course they soon became invisible as my father got used to seeing them.
It was his medication that was the real trigger to my seeking advice and help. He had very high blood pressure and I realised that I had no idea what tablets he should be taking and when and so on. I also noticed that his visists to the GP's surgery for repeat prescriptions was beoming almost a daily routine. I sign I felt of his own growing concern that something with his memory was not quite right. Thankfully my own GP had noticed and was also concerned and so beagn the referal to the Psycho-Geriatrician's. Plus a weekly tray with my fathers medication conviently organised into daily doses - a fantastic way to monitor that he took his meds. This led to so many of his other conditions becoming tonnes better than they had been for years.
The memory doctor as they became known was a visit that became quite an ordeal. I had to attend as part of "their" requirements and as interpreter for my father who would refuse to wear his hearing aid. He was never so bad that he couldnt remember what day it was or what year (eventually usually using his newspaper as a prompt - which as i pointed out was a good use of his brain at developing copinf strategies) and he was keen minded enough to play them at their own games. He would make fun of the doctor (not always in a nice way but when someone patronised my father they did so at their own risk) and would often give them the answer to the next question before they had asked it. That was the most annoying thing to them and one that i would secretly laugh about as each new doctor got to know the man that was my father.
I was amazed that they had only 1 bank of questions that they made use of to test his memory and after umpteen visits to these doctors I would sit back and wait for my father to play up and wind them up as he did frequently. My opinion was if they could not be bothered to find a variety of tests to complete with him every 3 months then they deserved what they got. And they didnt like that. Quite quickly my father was put on 6 monthly visits to them. I have no idea why?!!!
The one thing that dementia did that i had not expected was that it changed his personality. He was always a control freak that didnt change but the dementia highlighted the more negative aspects of his personality. He began drinking more heavliy and more frequently. This was, I understood, for a number of reasons. He liked it for one. But he also had enough insight at times into what was happening to him and that must have been horrendous and enough to turn anyone to drink. It was this aspect of his life that led to many problems. Increased alcahol intake leads to depression and in many circumstances increased aggression. My father, never a violent man became very aggressive at times.
Eventually the drinking led to falls, a loss of appetite and loss of interest in his own personal hygeine. Despite have carers coming in to see him while I was out at work he would refuse to wash or eat for them. Many a night I would come hom eot find him in bed asleep and if woken he would refuse to eat a meal but would demand more wiskey.
It was because of this that his doctor eventually insisted on him being put in a home. A hard and heartbreaking decision. I felt as though I had betrayed him and let him down. However the home he went into was fantastic. They looked after him and loved his cheeky manner and sense of humour. He was quickly one of the favourites even when he did try to scale the stainless steel kitchen cabinets in order to reach his wiskey bottle on top of the wall cupboard!! Not bad for an 85 year old.
So what did all that have to do with the drugs and their prices? You may ask yourself. Well all of this took over 6 years to develop. My father was able to take these drugs and it slowed down the development of his dementia a great deal. It never stopped the progress of it but it did plateau out at times before having a futher decline. My neighbours husband was unable to take them and his journey was much swifter and in many respects much more difficult as she saw a swift and sudden decline in his memory and was near the end in a position where she was unable to go out without having someone baby sit him.
Dementia is a difficult illness for families and the sufferer to deal with at the best of times but without these drugs it is so much harder.
I will always support campaigns to keep these drugs available on the NHS for as long as possible. I hope many others will too.
I know many would say well there are other illnesses out there that deserve treating as well but it is my expereince caring for my late father that makes me so cross that the discussion is even being had regarding these drugs.
There is no known cure for dementia and these drugs do not prevent the eventual outcome of the disease HOWEVER they can and do slow down the ineveitable. It is this slowing down that for so many is the wonder of these drugs.
I have seen demntia from both aspects that of caring for someone who was able to take the drugs and as a neighbour of someone who sadly was unable for medical reasons to take the drug. These drugs do not suit everyone and for those who cannot take them the road to the end can be swift and heartbreaking. I watched with growing horror as my neighbour went from a strong and independent man to a shadow of his former self. Unable to reason or understand what was going on until eventually he no longer recognised me - and I had known him since I was 11 years old.
This was something that I found terribly hard to deal with and it was my own personal nightmare that I knew would probably face me with my own father in the not to distant future. A future that mercifully as it happened I never had to face as my father died before he reached that point. And I mean mercifully for me - yeah a very selfish and self-centred point of view I know and I am not ashamed to admit that I was thankful that I never had to face that day.
Dementia is a slow killer ........ it creeps up on people and families so slowly that for a long time nothing is really suspected. How many times do you forget something and put it down to age? Many times - although I am not suggesting that just because you find yourself at the top of the stairs again thinking to yourself, "Now what did I come up here for?" thatyou are suffering from dementia.
But when you realise that a pattern is developing then it is time to ask some serious questions. My father and my neighbour where the same age late 70's early 80's when myself and my neighbour began to think more seriously about the "forgetfullness" dispalyed. In my fathers case it was a fixation on oven chips!! We didnt even eat them that often but everytime he went out to the shops he came back with a bag of frozen chips. It got to the point that i was not only supplying neighbours with children with chips on a weekly basis but that I had to buy a second freezer to cope with the amount of bags bought.
I began to dread going home to see what had been bought that day. Large posters were made and displayed round the house as reminders about all the things that were being forgotten.... NO CHIPS ..... Have you closed the door? Have you taken tablets? and so on although of course they soon became invisible as my father got used to seeing them.
It was his medication that was the real trigger to my seeking advice and help. He had very high blood pressure and I realised that I had no idea what tablets he should be taking and when and so on. I also noticed that his visists to the GP's surgery for repeat prescriptions was beoming almost a daily routine. I sign I felt of his own growing concern that something with his memory was not quite right. Thankfully my own GP had noticed and was also concerned and so beagn the referal to the Psycho-Geriatrician's. Plus a weekly tray with my fathers medication conviently organised into daily doses - a fantastic way to monitor that he took his meds. This led to so many of his other conditions becoming tonnes better than they had been for years.
The memory doctor as they became known was a visit that became quite an ordeal. I had to attend as part of "their" requirements and as interpreter for my father who would refuse to wear his hearing aid. He was never so bad that he couldnt remember what day it was or what year (eventually usually using his newspaper as a prompt - which as i pointed out was a good use of his brain at developing copinf strategies) and he was keen minded enough to play them at their own games. He would make fun of the doctor (not always in a nice way but when someone patronised my father they did so at their own risk) and would often give them the answer to the next question before they had asked it. That was the most annoying thing to them and one that i would secretly laugh about as each new doctor got to know the man that was my father.
I was amazed that they had only 1 bank of questions that they made use of to test his memory and after umpteen visits to these doctors I would sit back and wait for my father to play up and wind them up as he did frequently. My opinion was if they could not be bothered to find a variety of tests to complete with him every 3 months then they deserved what they got. And they didnt like that. Quite quickly my father was put on 6 monthly visits to them. I have no idea why?!!!
The one thing that dementia did that i had not expected was that it changed his personality. He was always a control freak that didnt change but the dementia highlighted the more negative aspects of his personality. He began drinking more heavliy and more frequently. This was, I understood, for a number of reasons. He liked it for one. But he also had enough insight at times into what was happening to him and that must have been horrendous and enough to turn anyone to drink. It was this aspect of his life that led to many problems. Increased alcahol intake leads to depression and in many circumstances increased aggression. My father, never a violent man became very aggressive at times.
Eventually the drinking led to falls, a loss of appetite and loss of interest in his own personal hygeine. Despite have carers coming in to see him while I was out at work he would refuse to wash or eat for them. Many a night I would come hom eot find him in bed asleep and if woken he would refuse to eat a meal but would demand more wiskey.
It was because of this that his doctor eventually insisted on him being put in a home. A hard and heartbreaking decision. I felt as though I had betrayed him and let him down. However the home he went into was fantastic. They looked after him and loved his cheeky manner and sense of humour. He was quickly one of the favourites even when he did try to scale the stainless steel kitchen cabinets in order to reach his wiskey bottle on top of the wall cupboard!! Not bad for an 85 year old.
So what did all that have to do with the drugs and their prices? You may ask yourself. Well all of this took over 6 years to develop. My father was able to take these drugs and it slowed down the development of his dementia a great deal. It never stopped the progress of it but it did plateau out at times before having a futher decline. My neighbours husband was unable to take them and his journey was much swifter and in many respects much more difficult as she saw a swift and sudden decline in his memory and was near the end in a position where she was unable to go out without having someone baby sit him.
Dementia is a difficult illness for families and the sufferer to deal with at the best of times but without these drugs it is so much harder.
I will always support campaigns to keep these drugs available on the NHS for as long as possible. I hope many others will too.
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Comment by Nickoftime's Sanity Corner
this was such a heartbnreaking gut-wrenching piece, mainly because it's absolutely true!
The medical industry tends to overlook what they consider non-interesting or "common" ailments and focus on the more "exciting" ones, often leaving the family of the victim and the victim himself by the wayside...
You would think that a drug that costs so little yet does so mcuh would be made available to everyone, but alas, that isn't always how it goes now is it?
Take heart in knowing that at least you did the very best you could, and who can ask anything more from a daughter?
Peace and white light,
Nick
Comment by Final Fantasy
Thoughts from a Scouse Wench
I always tried to do my best for him ... but will keep fighting the "system" as long as I live - its wrong and should be challenged.
Thank you for your comment
love as always
Trish