1. Hi folks, bear with me ive got a lot on my mind.

    Never posted before, my mum was diagnosed with alzheimers about a year ago at the age of 56 but we have noticed the effects scince about the middle of 2001, we took ages to get her to go to the GP and we sent her a few times and the first two times the said it was stress, anyway the third time she went the gp sent her to a nureologist and he sent her to hospital for a some tests then we waited a while for the diagnosis which came back saying they didnt know what it was. Then after some more tests it came back that it was alzheimers. Then we get the drug {Aricept} and we noticed an improvement in her condition, that was about a year ago.

    Recently her speech, cordination and memory seem to be going back to were they were before the diagnosis, even though I have told her to take ginko biloba, vit B 12, vit E and folic acid for the past 6 months or so. over the past month or so I have got her some reflexology and it has helped her to relax and it has given me a bit of a break as well.

    yesterday we went to the specialist at the hospital and he asked her the usual questions how are you feeling how do you think the drugs are going etc and today another doctor came cause it had been booked and after hearing the same questions and the same replies from my mum I said, something along the lines of all your here to do is dispense pills and offer advice that doesnt do any good anyway. I wasnt angry with him I just said it calmly but either way he wasnt happy with what I said and said something like we dont anything for you apart from send nurses and doctors round to your house and with that made his excuses and left.

    I know they do their best but sometimes to me it seems like the carers just get lumbered with the real job and the tears when your mum says she wants to die and is asking you how could we do it and im just totally stunned by what she has said and the doctors and nurses turn up once every few months have a chat and leave.

    sorry if that seems harsh its just the way I was feeling today when the doc came round.
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    #2 Brucie, Jun 17, 2004
    Last edited: Jun 17, 2004
    I have always had the problem that I can't - except in particularly clear circumstances - ever make a good argument. I can usually see at least a little of the case of the other person.

    Certainly, carers and families are often unfairly loaded with the responsibility for too many things concerning the health and care of a dementia person.

    I've tried to understand the situation from the point of view of the doctors and consultants concerned.

    As I see it, problems that affect the brain very rarely leap out at a doctor and say "I'm this" or "I'm that". Frequently the presentation of symptoms can make one think "it could be this, or that, or maybe even something else." I know that depression can cause symptoms similar to types of dementia - but also that dementia can cause depression [it did with my wife].

    At one stage, out of the blue, a consultant asked our GP to ask me if Jan, my wife, drank a lot. Some abnormal liver diagnostics seemed to point to heavy drinking, and that too can cause dementia-like symptoms. In our case, I knew exactly how much we each drank in terms of alcohol, and it was very little!

    It is actually very difficult to make a conclusive diagnosis of dementia quickly. From our point of view, it was a case of rejecting possible causes one by one, and see what is left. This took many years and huge strain for the two of us.

    Each new doctor involved needs to confirm at least slightly the diagnosis to their satisfaction. Maybe they, like us, would love to be able to say "it's not dementia at all! It's a food allergy" or something like that. They are probably also needing to cover themselves these days.

    Treating a person with dementia is not like treating a headache.

    Medication will be needed, either to improve cognitive ability, or aspects of behaviour, or for sleep, etc. The complexity of the brain and the infinite number of ways that dementia can affect it - plus the stage the patient has reached at the time - these mean that the precise medication that will help needs to be identified.

    Different people react differently to different medications; sometimes medication works, or it may not work, or it may make things worse.

    Frequently a combination of medications may be needed, and that adds the possibility of different medications working against each other, or reacting against each other.

    Add to that that something working today may not work next week.

    If I were a doctor, I really don't know if I'd want to be involved in the area of dementia as I would never be able to provide a cure. I could only tinker to make things less bad.

    On the other hand, as we can see from this forum, the need for effective diagnosis, treatment and care for the patient - and care for the carers - is gigantic.

    The problem seems to be a lack of coordination, understanding and resource from the NHS. Where all of that works, it is outstanding, but all too often it seems anarchic and it is easy for a major game of 'pass the parcel' to take place, the patient and family being the parcel in this case.

    You are experiencing one of the many peaks of difficulty at present. Do hang on in there because the care provided by the family is critically important at this very difficult stage. It is also important for you to be able to look back and know you have done all you can, regardless of the attempts of the medical fraternity.

    You may find yourself wishing to be back where you are now, in many months time when the day to day care of your Mum may be out of your hands.

    Best wishes
  3. Nice one brucie,

    well at the moment my mum isnt that bad she has slight to moderate alzheimers, shes able to talk, walk, dress herself most of the time and wash herself.

    it was just that yesterday I got bit tired of hearing the same questions and my mum giving the same answers, It just felt like going round in circles and I was thinking to my self what the hell is this guy doing? It was like being a mouse or a gerbil in a wheel and it just got to me. I was thinking last night by asking my mum the same questions all the time are the doctors expecting a "road to Damascus" type of enlightenment from my mother or something where all of a sudden the penny drops and they find a cure?

    surely it would be better to be putting money into research and only sneding people out to the carers when the patient cant get out to a doctor? it could be a lot less strain on the patient and the couple of years it takes to get that far advanced would mean some cash saved for the NHS and hey, you never know that cash could help find better drugs and treatment?

    Im just running this off the top of my head so if im talking garbage tell me.
  4. Chris

    Chris Registered User

    May 20, 2003
    Much is talked about communication problems that people who have dementia have and what we need to do to communicate with them.

    But I think we have a major problem amongst people who dont have dementia, communicating with each other. If patients (& or their carers) were well informed about reasons for consultant appointments, what was happening & why & what happens next - given name of contact person if circumstances change (a safety net) - what to do if a crisis occurs etc - then carers at least could cope better. You need to know where you are & at least what may happen in the very near future & have plans to cope with it - then you can get on living as best you can. You cant do that if your head is full of questions - What if ..... I'm taken ill , Maybe its not dementia at all , should I be doing something more ?- insisting on a second opinion ?- how long do I wait for symptoms to get worse before going back? who do I contact ? etc etc

    Patients and carers should know if they are on someones case load or if their situation is not bad enough to meet the criteria.

    Clear and written information is needed - maybe now all letters between consultants and GPs are being copied to patients or carers we will understand what is going on better. Very often we are told things - what isnt understood is how difficult it is to take in important info when in a highly stressed state - as in the Consultants room
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I agree, totally!
  6. {But I think we have a major problem amongst people who dont have dementia, communicating with each other}

    Id agree with that, I mean we went to the consultants on tuesday and then the other doctor, who wound me up, it wasnt his fault really it was just him going on about web cams for mum so it would be easier for her to communicate with my dad { sorry doc but my dads got to work and hasnt got time to be talking to my mum on the internet all day}, came round on wednesday and my mum had an apointment with the nurse to come round on friday. Then guess what you dont see anyone for 4-6 months.

    It seems to me like some people are there to ask a few questions, tick a few boxes on sheets hang around for an hour and then dissapear for a few months thinking that theyve done the job and when you mention any other form of alternative treatment they kind of back away and say well im not going to reccomend or put you off from any treatment, and I quote what the doctor said the other day "its all fine an well having all these alternative treatments but they could cost a lot of money" and I thought to myself instantly, but didnt say anything, yeah but its ok to make fizer and glaxo billions of pounds every year hey?

    To me its just so frustrating on all kinds of levels not mention seeing people you love in the kind of states that they are in.

    well on the bright side of my weeks ranting, one of the doctors we spoke too this week has got us in touch with someone who practices Rieki and Indian Head Massage, Im not saying its going to work miracles but in our situation its better than sitting there doing nothing.

    thanks for your input and advice guys.

    Ill be around in the future im sure, good luck with who ever you care for.
  7. alix

    alix Registered User

    Jun 23, 2004
    Iain, so glad I'm not the only one to get angry with the doctors sometimes!

    I feel very guilty for being critical, but despite some great individuals who do a great (tough) job, I just don't feel like the NHS really knows how to deal with patients with Alzheimers.

    I think my main feeling is that although we have been through many different stages since my grandfather was first diagnosed with Alzheimers, and have seen lots of different people about lots of different things (GP's, consultants, district nurses, CPN's, OT's, Speech therapists... the list goes on) there has been no continuity to the care he has recieved, and for lots of the time we have been left just to 'get on with it'.

    Hate to sound bitter, and hate the fact that I can't be more complimentary about the NHS, but just feel that there have been lots of things that were easily avoidable...
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Alix
    In a way the NHS can't win, though I do agree totally with what you say.

    The NHS has lots of resources - people, diagnostic aids, etc. What would be good would be for a newly diagnosed dementia patient to be assigned a kind of project manager, who would coordinate the use of these resources to the benefit of the patient.

    At present the patient seems to become the parcel in a 'pass the parcel' game, where the one who is left holding the patient is the loser. Too often they try to arrange for the nearest relative to be in the game and somehow, the patient always seems to end up with them!

    Several troubles with the idea of assigning a project manager, though!

    Firstly, there would be accusations of adding yet more administration in the NHS. Secondly, the person they currently use as a project manager is the family member, and their services come free. Also, since they don't get advice, or at least decent advice, and they don't know what resources are available, and anyway have no clout to call on them - I guess the hope is that this will mean less cost to the taxpayer, at the loss of the patient. The result is lots of dementia patients not being treated correctly - using 'treated' in all senses of the word.

    This doesn't only apply to dementia of course, as such a project-managed model would work well for cancer, etc.
  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Alix & Bruce
    I agree with all you say.
    It's about two things money and AD not being a glamorous illness,like heart and other transplants .
    Alzeimer's Society do their best but a champion for the mental illness patients is needed (is there a Minister for Mental illness)?
    As long as I remember during many years in healthcare mental illness has always benn a cinderella service will it ever alter?
    I do despair at times
    Day to day
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I think the problem is that we call dementia a mental illness.

    Of course it is, and we do call it that, but people who have not been touched by dementia in some way think of mental illness as schizophrenia or something like that. Generally, people think of dementia as if it is just old age, which we all know it isn't.

    If we had a new name that was explicit and not lumped in with the other illnesses that involve the brain, then we might get somewhere in advancing the cause of improved care.
  11. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Right again Bruce,but I cannot think of an alternative name.
    I personally do not like dementia I always feel it smacks of the old Senile dementia of time back.
    But I don't know what would be a good all round descriptive name
    Day to day
  12. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    South Coast
    Dementia is a neurological illness, not a "mental" illness - it is caused by physical/chemical changes in the brain. If people with dementia (horrible word with derogatory connotations) had a brain tumour instead, they would get a much better deal from the health and social services. For one thing, the idea that they had to pay for their care would cause a political storm.
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Yes of course.

    Problem being that it is classified as a mental illness, and frequently treated as such.

    So how do we change that?

    By the way, I agree about the word dementia, but I almost always use it in preference to '"Alzheimer's", as that is only one flavour of dementia, and my wife has at least two.
  14. Chloe

    Chloe Registered User

    Jun 3, 2004
    Anybody think that part of the problem is that there is a stigma attached to the idea of dementia so that it is unutterable - a bit like TB used to be 80 years ago? Here we have a disease that can affect people at a not particularly advanced age, and which no-one wants to admit is going on. God knows this is understandable in the case of relatives - no-one wants to face these irrevocable changes in someone they love - but in general it seems to me that no one involved medically or in a caring capacity really wants to bring it up as a possibility - to let you know what might be coming - so that even when they are supportive, one time a GP might be saying everything will be all right, and the next time, well this is what happens. Of course, this is why this forum is so valuable but I wish it were not so necessary. I know that it is a disease which is a conversation stopper (and what should you do when somebody asks after a relative? Lie?) but surely, the advances in care and treatment we want can only come about if everyone talks about it? How can this happen if doctors back away from the subject? Yes, it is incurable and fatal, and yes, no effective palliative has been discovered, but that should not mean dismissing people - or classifying their care as somehow not "medical", to safely be left to non-professionals.
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London

    I think the issue is a complex one, since there is no consensus on what causes dementia, or who will get it. Everyone knows it has no cure.

    Often relatives will shy away perhaps because they fear it is genetic and what they see will be their fate at some time in the future.

    Other people shy away as if it were contagious.

    Meeting a person with dementia at any stage of the development of the illness can be difficult, until one has the appropriate mindset. That tends to come with familiarity bred from having a loved one with dementia.

    I have thought of producing a small booklet for Jan's home that has a chapter for each of the residents, giving a potted hsitory of their lives, plus a summary of what they like and don't like these days - to put their current condition into context, I suppose. I've not done that, because I suspect the other relatives might not agree, but I may still try it sometime.

    The point being that society tends to look at dementia patients as they now are, and not as people who have had long [or short] lives of value. I think until we all look at these people on that basis, they are always going to be disadvantaged.

    I've always told the truth about Jan's illness - to everyone but Jan. If people have backed away then I have realised they are not worth knowing anyway. Doctors back away perhaps because they realise there is so little they can do, and it is hard to say that to a relative or patient.

    One thing is certain - their care needs need to be handled much better, generally.
  16. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    South Coast
    Potted biographies

    Dear Brucie

    Picking up on one point you made about "potted histories" - at the NHS dementia assessment unit where my husband has been for six months, they have introduced a questionnaire/booklet for relatives and carers to fill in.

    There are suggestions for all sorts of information about the clients' lives; things like where they spent their childhood, what work they did, names of close family (brothers, sisters, children etc) with details about their ages, pets that the person has had, interests, hobbies - in fact anything that the carer wishes to write about. It's not compulsory, but I think it's an excellent idea.

    The nurse who gave it to me said that it was to help the staff pick up on any mention of any of these things by the client, so that they could try to carry a "conversation" along or at least try to understand what was being said. It also helps the staff to see the clients as "real" people, with interesting lives and backgrounds, which can only be a good thing.

    In our case, my husband has an extremely supportive identical twin brother, who, thank God, is not affected by AD, and who visits with me once a week. He looks so much like my husband that it sometimes gives the staff a bit of a start when he starts having a "normal" conversation with them! I also feel that it gives the staff quite an insight into what a lovely man my husband was, both physically and mentally, before the dementia got at him.

    Sadly, we can't all produce a supportive adult twin to order, but the idea of the "potted biography" might be something that could be suggested to an appropriate member of staff. I have found that quite often the younger trained nurses are particularly open to new ideas.

    I have also been as open as I can about my husband's condition, and although a few people have shied away from it, or avoid asking about him when I bump into them, all our long-term and true friends have been incredibly supportive and this has strengthened our friendship. As you say, Brucie, the ones who don't want to know are not worth worrying about!

    Thanks for all your postings, Brucie.

    Kind regards to everyone

  17. Charlie

    Charlie Registered User

    Apr 1, 2003
    #17 Charlie, Jul 4, 2004
    Last edited: Jul 4, 2004
    One of my favourite things about this forum is how easy it is to review long threads: I just print them off and read them away from the PC.


    This message thread has really made me think lately. My mum who cares from my dad has had varying degrees of support over the last few years. Mum has a crisis, she makes a few calls and eventually a community nurse will appear or sometimes her GP, but usually at a crisis stage. They offer the world - it seems that they are about to take a great weight of her shoulders. Then a few months later, nothing, no follow up, no management. And again they wait to be stimulated by another crisis.

    It really is hard to find someone to blame. There seems to be a big hole in secondary care "The Follow Up" and the "Personal Manager". When I have spoken to any of the bodies who have contacted mum they all seem to react in a blame culture e.g. I'm afraid you father is no longer our responsibility, he had a visit and it has been referred to your GP. Being fair, their GP has been great (well in a crisis) but she just hasn't got the time to manage individual care at this level.

    My point; well a lot of weight seems to lie on the shoulders of the prime carers and that is normally direct family or friends. But it is difficult for these carer to manage the NHS side of things, as it is my experience that 'patient confidentiality' becomes a road block.

    Secondary care seems to me TOTALLY mismanaged and the idea of a "single patient" record, which would resolve a lot of these problems is a long long way off.

    All we need is for one professional individual (or at least a dedicated department) to coordinate the patient’s care, one person who can just check on the situation every couple of months. Make sure dad's medications are still appropriate, make sure mum is coping and make sure we are all aware of what is available. More importantly, we would love to have one person to contact if there's a problem, that person would not have a divert button on their phone and would NOT be part of the blame culture. They would have instant access (or up to date knowledge) to details of the current situation and give advice or support accordingly.

    Is that really too much to ask?

  18. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Clearly not too much to ask.

    Clearly too much to provide.

    When we get a health system that is patient centric, then perhaps.......
  19. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Charlie we may get something like you describe when the NHS receives proper funding then the resources might be available to provide a one person link,back up or what ever you wish to call it

  20. jools

    jools Registered User

    Jun 29, 2004
    help is there any

    I think that the reason that Alzheimers is a 'cinderella' with regard to funding is that A)it affects a lot of people and B) at the mo, its not curable. Of course they're not going to find a cure until they start funding it, but maybe pointing out some of the ludicrosies of funding just now might help things.
    If Aricept costs £1000 per year, bringing in care help into the person's home costs £10 000 per year, a nursing home costs £20 000 per year and an NHS bed costs £80 000 per year, it makes more sense to fund care help and Aricept, doesn't it? It would save money and at the same time provide more appropriate treatment for the patient. My mum's on Aricept and there's no doubt in my mind that it has slowed down the disease considerably. She would be in a home now otherwise. Are there any number crunchers out there who could go to work on this?
    One of the problems is the fact that medicines and homes are funded by the medical practice and local authority , so central government can play silly buggers and say that they've given them money but they're spending it elsewhere. But government might be persuaded to fund nursing homes properly if it freed up beds in hospitals, cos its one of their targets, and at the same time save money. Who could resist that?

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