well I don't believe there is no hope; or ever will.

Discussion in 'ARCHIVE FORUM: Support discussions' started by mickyinlondon, Apr 27, 2007.

  1. This is all new to me; my wife has dementia; they said they don't help you till your gone more; then when she went a little more they said nothing we can do.

    Then we will see her in three months time; what the good is that; if they can't help you now; what is the point of going back in three months.

    I am angry at them all; then I came here; and felt as though there is no hope at all, reading the posts; and I mean no offence to anyone here; I know how you feel; well I don't believe there is no hope; or ever will.

    If they won't help my wife; then I will; and I will do it alone; but she is never going in any kind of home; I will feel I betrayed her; and she looks to me more than ever to help her; and by god I will....Micky.
     
  2. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Hi Micky

    Welcome to Talking Point

    I am sorry that you feel that there is 'no hope', but I can understand your feelings too. My situation is rather different - my mum has dementia and has had it for a number of years. However, there are lots of members who have husbands or wives who have dementia and I am sure you will get a lot of support and tips from them.

    I am sure you will hear from other members soon, but just wanted to say 'hi'. If you have any questions then ask away, as I am sure you will get lots of replies.

    Take care and keep in touch
     
  3. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Mickey, I hope you don't mind but I have moved your post to the main forum where I think you will get more answers.
     
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #4 Margarita, Apr 27, 2007
    Last edited: Apr 27, 2007
    Yes reality is that they is no cure for AZ sadly, they only medication to stop it progressing faster

    The point to me as I look back on 5 years it gave my mother more time on earth and I would say she had good quality of life we could do thing together that we would never had if she had not got the medication, now the medication not working so good and she going back slowly how she was before the medication.

    You and your wife have a choice to get the medication or not, if you think your wife would want to take the medication.

    Someone on hear says that when you give up hope you feel better , you can do that , but I never give up fighting to give my mother a good quality end of life , Now I find being realistic make me feel better .

    I remember when I was first time they told me my mother had AZ , what a shock it was , because it felt like my whole life would never be the same again, big change and a big adjustment for me ..let alone my mother

    Good thing now days they more awareness more support then they was 5 years ago , which is good , so I do hope you keep posting on TP , as it’s a great support
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Mickey

    Welcome to TP. I hope we can convince you that we do not feel there is no hope.

    No, there is no hope of a cure, and I'm afraid if that is what you are hoping for then you need more information (try the factsheets, top left of page).

    But there is hope of quality of life, of good days among the bad, of happiness among the gloom. A lot of us are suffering as carers, but most of us I think still manage to post positively on occasion.

    I care for my husband, and have for the last seven years, and I can tell you that we still have some very good days, although I do sometimes get depressed with the strain of it all.

    Why has your wife not been prescribed medication? Is it because she is still in the early stages? If so, they will want to monitor her so that she can be given medication when she reaches the stage defined by NICE. (Iniquitous, but that's another thread!)

    I applaud your decision to care for your wife at home, I made the same decision, but am prepared to reconsider if it should become too much. I don't think any of us can be too dogmatic about this, there comes a time for most of us when it is impossible to give our loved ones the care they need. There is no shame in admitting defeat.

    Post again, and tell us a bit more about your circumstances.

    Take care,
     
  6. #6 mickyinlondon, Apr 27, 2007
    Last edited by a moderator: Apr 27, 2007
    Thank you Skye, Margarita, & Noel.

    But I didn't mean that I have no hope; I always have that; it was just reading the inevitability of it all in your posts, made me think that way.

    So far nobody has offered my wife any medication at all; they don’t even seem to consider us; they send letters back and forth between the doctors; and still they have offered nothing.

    I am going to go private now; as the NHS seems to be only concerned with cost cutting; that is why I am angry; I swear to god if Blair walked my way; I would spit in his eye; he is nothing but Margaret Thatcher in Drag; how he poses as a Socialist, is beyond me. But I guess once you make a blue overall, into a white collar; they all change sides; and love it.

    Some people do not have a price; but all politicians do; that’s a fact; and Blair the biggest sell-out merchant of all.

    My wife went through WW2 as a young girl; worked all her life; paid all her dues; only to once in her life need help; and the bastards sold her out.

    Bet your life I am angry; bet your life I detest them all; and bet your life; if my wife suffers; then the rest of my life I will hound them all; in any way I can.

    They say the pen is mightier than the sword; well I can write; and I fear no man, and I will tell it as I find it.

    My anger will subside; but it will be replaced with a vengeance that will give my life a meaning; and cause to live on alone.

    You ain’t seen nothing yet.

    You can ban me if you like; I have been banned before from forums; not for abuse; but for just being honest; to honest for hypocrites’ and I know its par for the course.

    But I believe in free speech; something politicians do not like us having; but who cares; what can they do; shoot me, if so; then they can expect the same back.

    Please do not see my words as attacks on anyone on this forum; its just my way of calling a spade a spade……..Micky.
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #7 Margarita, Apr 27, 2007
    Last edited: Apr 27, 2007
    Sadly it seem the only way since the law change with NICE , so if you can’t afford it , your letter writing , running around like a blue ass fly , but your get it in the end Medication on the NHS

    Sometime anger keeps us going to fight the fight , for the rights of our love one , because anger sometime is all we have left out of all the sadness we feel
     
  8. Helena

    Helena Registered User

    May 24, 2006
    715
    Micky .......I have sent you a private message .......please read it thoughtfully
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Dear micky

    There is no medication to cure Alzheimers. That is a fact. There is medication to slow down the progression, but it is not suitable for every sufferer. It was not suitalble for my husband, who had horrendous hallucinations.

    Who is your anger directed towards? The politicians aren`t pharmagologists. They aren`t able to develop drugs to cure Alzheimers. Admittedly, they do not give enough funding to provide the drugs that are available, nor do they fund enough research, but there is no drug yet.on the market that is a cure.

    You can write, you can be angry, you can be full of vengeance, and spit in the eyes of the politicians.

    You are joining those of us who aim to care for our dear family members through thick and thin. You will find that takes up much of your energy and enterprise.

    I wish you luck in all your endeavours and the strength to see them through.
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #10 Margarita, Apr 27, 2007
    Last edited: Apr 27, 2007
    That does make me wonder as in Spain and Gibraltar the funding is they for medication no issue in getting it on they NHS if you’re from that country Or i think if you paid in to they system . But not in England one of the most riches country in the world .

    No wonder they so much anger around in UK with medication for AZ , even if its not a cure
     
  11. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Micky: I was very angry too at the beginning of my husband's dementia - angry with everyone everything - then it subsided - thanks to lots of support from unexpected friends, local Alz Group. I think you will come through this phase and turn it around into something that makes you want to care for your wife beyond everything. The medication may come, if it is right for her, but it does take time for them to truly know what to give her. Aricept was finally given to my husband two years after all the assessments, etc. Keep on the backs of the medics.

    Please keep posting - you will get help here.
    Best wishes Beckyjan
     
  12. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    If your realy really want us to then I suppose we could ban you! :eek: But I'd rather not if we didn't have to!

    I am sure you have much to give to TP and I hope you can get something back. All of us are angry at times but most people seem to be helped by being here - I have been immensely - and in turn most of are able to give something back. :)
     
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Dear Mickey

    Who wouldn't be angry about this disease, and all forms of dementia? You can see your loved one walking around but slowly slipping away. If the opposite of anger is peace, you'd be pretty strange if that was your overriding emotion when confronted with these conditions. The question is what do you do with that anger. Now some people have so much energy that they can both care for their loved one AND still have energy to spare to try and change the system. If they do, more power to them. Others, perhaps the majority , channel that anger and energy into caring for their loved ones, but have little left over to battle the wider world. That doesn't make us weaker just different. As long as we all understand that, and respect peoples decisions to cope in the best way they can, or not cope if that is the way it works out, I have no doubt we'll all rub along tolerably well. Like a family, we (the members of TP) don't always agree, but for the most part, we agree to differ.

    Jennifer
     
  14. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia


    Dear Micky,

    Your post vibrates with anger. As others have said, you have a perfect right to be angry that your wife, whom you obviously love and adore, is suffering this awful disease.

    You also have a perfect right to feel that the years when you and your wife should be enjoying your "golden age" have been negatively affected by dementia.

    I'm sure you are right to feel angry, too, that there is never enough money or political will, to make sure that everyone gets the very best treatment he or she deserves.

    Having said that, though, I would suggest you take care not to "spray" your anger like a hail of bullets into the crowd. If you do, it will "hit" those who are not responsible as well as those who should bear more responsibility. It will earn you no favours and could even mean people pay you less attention than you deserve.

    Please consider the following points, many of which others have also raised:

    It IS unfair that your wife is suffering this dreadful disease, but it is no body's fault. It is unfair to every sufferer that they must go through this.
    It is unfair that we, as Carers, have such a difficult task - but it is what we choose to do. Once we've chosen to be Carers, we recognise that life will never be as it was before. (Sadly, we can never go back to what we had.)
    HOPE can mean different things to different people. As others have quite rightly pointed out, there is NO cure for this disease (yet!) but we can hope for the future.
    We can hope that our loved ones will not suffer too greatly.
    We can hope we have the strength, courage, tenacity, grace and humility to care for them in the way that is best for them (the sufferers), not in the ways that are necessarily what we would choose.

    May I suggest that you direct your considerable energy to:
    1) working with the medical profession to find out exactly what they plan in the way of treatment for your wife, when they plan to implement it and what you can do to help.
    2) seeking support from your local community to help you in this task you are undertaking, of caring for her yourself. You may well find, as others on this forum have, that you and your wife are entitled to help that is practical and useful (whether it is day care for your wife; help with housework and shopping; whatever best meets your needs).
    3) staying well yourself - physically, mentally and emotionally. This is a very draining disease for Carers. We can never really predict how our own loved ones will be affected and what is coming next. It seems that just as you get used to one thing, something else pops up! One person's experience of the disease is not the same as another's, so we can't predict the future at all. We all need to stay fit, well and strong to last the distance.

    Finally, I do encourage you to stay with Talking Point as it is truly a godsend for us Carers. Here we can "talk" to others going through similar situations. We can get very helpful information and advice. And above all, we can find support when we need it.

    You are starting a long and difficult journey and you are to be highly commended for undertaking it. Remember that we are here to help and support you, and each other, even when we don't agree with each other!!

    Wishing you and your wife the best of all possible journeys. Nell
     
  15. Natashalou

    Natashalou Registered User

    Mar 22, 2007
    426
    london
    Money

    Basically, it all comes down to money. Of course, there is no cure, but probably no money being used to research for one either.
    But I try and think like this.
    There is, in short, one lot of money coming in, raised in different ways, but really through taxation.
    Then there are all the demands on that cash..education, health, housing, benefits, prisons, etc etc ad infinitum.
    and if someone came along and said to me...we can spend a lot more money on services but your tax will go up by 10p in the pound...im not going to be happy!! I work exceedingly hard to try and afford a decent standard of living for my children, and consider I pay quite enough on tax already!
    Now politicans (and I dont have a high opinion of then either!!) can do no more then decide how to spend the money, and again, there are winners and losers. We all think there ought to be more money spent on the elderly. Understandable. But if someone came along and said, ok, we will fund your mums nursing home place, but unfortunatly we have to close your local school to do it, as I dont have school age kids any more I would probably think "brilliant",,but people with small children wont will they!!
    Now, I reliase Im being very simplistic here. I know that too much public money is wasted ( I work in the public sector) but when we meet to set budgets, its a matter of we either raise the council taxes to an unacceptable level, or we lose services, and we choose whether to close a nursery, library or school.
    Im sure its the same in central government.
    Im not saying this is right, or that im any happier with it than the rest of you, but I pretty much think this is how it is.
     
  16. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Hi Micky.

    PLEASE read Nells reply.

    I couldn't have put it better myself Nell.

    Micky, it does everyone good to get their point across about the state of our NHS and poloticians, I'm sure there are other Forums for this.

    We all feel angry when things aren't being done, your wife will benefit from a positive and happy husband, bitterness is a long and lonely place.

    You will find lots of help and advice if you take time to read past posts, as I have.

    Thank you everyone.
    Bye for now
    Janetruth x
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Nell, I just want to say how wonderfully constructive your post is. It expresses perfectly the constraints, hopes and joys that we all experience every day.

    Micky, I hope you have read it, and are able to put it into practice. As others have said, anger is not bad, provided it is channelled in the right direction.

    If you can follow Nell's advice, TP will have helped you already, and that is what we are trying to do. Our forum is for advice and support.
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Nell, TP is lucky to have you.
     
  19. Good Afternoon Everyone.

    I have read all your posts; and I can see you are all wiser than I.

    I had tears in my eyes reading your posts; and at the same time knew full well you are right; and I am wrong.

    I have no excuse other than being a male; and we fight in a different way from females; some could say we are nothing more than thugs; I guess its hormones that makes the difference. Yet I know your way is better than mine; I just have to learn it; that's all.

    My wife is a gentle soul, happy and humorous, and we both share that state of being; this helps me a lot; because even in the early hours of the morning; I clown around and she laughs her head off; you would never know she had dementia when she is happy. That is why I don’t understand why the NHS thinks she is beyond help; it’s just not true; and how do they know; when they have never tried to help her.

    I would like to reply to each post individually; because you all have written so much; written sound advice, and with a caring inside you all; and taken your own time to do this for Rita and I; and yes I do believe I will learn more from you all; so forgive my anger; it was never aimed your way; nor meant to.

    I know I can do all that is needed; I am a skilled man in more ways than one; I can cook with the best of you; and housework is a doddle to me; so Rita will never need for anything; I can do it all; and I do; do it all; and I have more than enough strength to do it; for as long as I need to do it. That is not why I am angry.

    I know the world is full of people; young children as well; that have more to complain about than I ever will have; I just think right, should be right; we either have a NHS; or we don’t; let’s not tolerate demarcation; in any service to all our people by the NHS.

    I see it clearly; we all pay for it; so we all should get it.

    One comment about Taxes and the Government; about paying more etc; well they never stopped charging me more; and it was par for the course; I have never been a Tory; or could stand their selfishness in their ideology; I have always been a Socialist; and this is why I am angry; seeing what was supposed to be a Socialist Government; start behaving like a Tory one; this is where my anger was more pronounced.

    OK; I see where you are all going; put aside my anger; and yes I can do that for my wife’s sake; but my memory is long; and I will not forget what I have seen and experienced; first hand.

    To the Moderator; Noel, I give you a free-hand to deactivate me if you see fit; without any recrimination or bad feeling on my part; I tend to write straight from my heart; and this often offends others; hence I have been banned before; and probably will be again; somewhere; this I cannot help; and I will never change; I know myself.

    Lastly for now; I do honestly thank you all for your time and trouble; posting your views to me; and I am humbled by what I have read; you are far better people than I.

    I don’t know much about your forum yet; but it has helped me get some kind of balance to my thinking; because a few days ago; I getting dangerous in my thinking.

    I would lay down my life; for any member of my family; without a second thought.

    Thank you for giving me the time to reflect………Micky.
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Micky, I know this is a sexist statement, but it takes a big man to listen.

    We may not show it, but many of us are just as angry as you are, feel just as let down as you do. But we need to apply ourselves firstly, to the task in hand, caring for those who depend on us.

    In time, if we have the energy and our spirit isn`t knocked out of us, we may see fit to campaign for the future, so that others will not have to be satisfied with second best.

    Please Micky, don`t challenge TP re being banned. No-one wants to ban. Join us, become a contributor to TP. As you appear to have learnt, so we can learn.
     

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