1. tansy

    tansy Registered User

    May 4, 2005
    tipton west midlands
    :confused: well I'm a new member and my husband has working age dementia. When I first came by the sight I became quiet upset. Maybe it's me, not really understanding the implecations of this awful life changing disease. I've found we have very little help out there if it wasn't for alzheimers society I think I would go off my head. I'm angry, frustrated and fedup. Is this me for the rest of Alan's life?

    I keep down a full time job, and find at times I find I get so tired and would love my own life back. Also I find I'm always moaning is anyone else like that? :mad:
  2. Anne54

    Anne54 Registered User

    Sep 16, 2004
    Dear Tansy

    I had a lot of the same feelings as you at the start, I too got a great deal of help from the Alzheimer’s Society, still do.
    How long have you been caring for your husband?
    I think it’s that no one can tell you what will happen and when, that is the worst thing about this illness, I have looked after Fred, my husband, for ten years now and he still goes shopping with me, gets himself up, after a fashion. He is not safe to leave on his own but all those years ago I was told he would not be hear in five years.
    Fred goes to a day centre in Nottingham for young people with dementia he loves it, some of the others have gone down hill fast, it seems to be a lottery and every one is different.

  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Tansy, and welcome to TP.

    Dementia at any age poses its own particular challenges and Early Onset dementia comes when no-one is expecting anything of the sort - including the doctors and the care system, though there will always be exceptional people and services regionally!

    Unlike dementia at a later stage, one or both of the partners will/may be in work, and need to remain so to keep the roof over both heads - as well as to give a welcome injection of normality as things deteriorate.

    Trying to keep at work is very difficult while worrying about your partner at home or wherever they are. As time passes it will get more difficult.

    One of the good things about TP is that few punches get pulled regarding expectations. However, not everyone treads the same path, so always hope for the best. Not everything you read about here may ever come your way, but it would be good to be prepared for almost anything.

    Always remember that, no matter how bad it seems for you, the carer is in the end an observer [a very active one!], and while that is bad for you, and it will get worse over time, you will remain essentially yourself. From what I have seen of members of TP, basically good people somehow manage to become spectacularly caring, good people. I certainly wouldn't have wanted to go this route, for Jan's sake because it meant her being so ill, but I know I am a much better person for it.

    You will find out fairly quickly which friends will stick around and support you. Same for family. Don't be afraid to explain things to your employer. I did from the start and was given massive leeway to come and go.

    You don't say how long you have been together, or how long ago his symptoms started; both of these will have an influence from now on.

    You say I'm angry, frustrated and fedup.

    That should be the name of a huge club. Most of us on TP are exactly that; it is part of the territory we all inhabit now.

    Is this me for the rest of Alan's life? It may sound trite, but that is probably up to you, in the long term. The early stages for both parties are confusing and frustrating. I found that over time I managed to find, then develop a whole new relationship with my wife of [now] 37 years. The new relationship meant that our goals were much less - a smile, a response, rather than a shared trip to the sun, abroad. It may not seem like much, but a lot happens over time.

    A particular agony is that you won't know what 'the rest of Alan's life' means. A year, five years, ten years, more? So you will learn to live with him day, by day. Get your shared pleasures while and when you can.

    I keep down a full time job, and find at times I find I get so tired and would love my own life back. Yes. No getting around that. When I was in the same position with Jan I was working 12 hour days, including 2 hours driving, 120 miles a day at the least. Sometimes I would drive to Leeds and back [5 hrs each way] with a 3 hour meeting in between. Then I'd cook dinner for us then clear up.

    Also I find I'm always moaning is anyone else like that? I have a PhD in Moaning. But you have to have someone to tell things to, so if that is termed 'moaning' then so be it. Now you have TP, so moan away!!! I'm 15 years into this now, and am automatically pessimistic about everything [had you noticed?] now, whereas before Jan came down with this thing I was the most optimistic person around.

    Take things slowly and don't be afraid to ask ANYTHING on here. Someone somewhere on TP will be able to provide a good reply.

    Best wishes
  4. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    HI TANSY,yes there are many ,more of us out here ,all with the same fears and frustrations as you ,you may feel you are so alone in this but it really helps just to be in contact with someone who really knows just what you are going through ,and are truthfully interested in you ,my husband JIM is just 63 and 7/9 years down the line,as taken a downward turn and has just gone into long term assesment ,though i spend every afternoon there ,i should be looking to (get some of my life back)but what is my life now ,after 45 years with JIM ,i dont know where to start ,all the things i thought i wanted to do ,does not seem so apealing now , so moan away ,you will always find someone to listen ANGELA
  5. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Hello Tansy, and 'welcome to the club' - not a club anyone would ever strive to belong to, and yet, if you've arrived here through the need to find information, and all the things you mention (anger, frustration, etc. etc.), you may suddenly feel this (TP) is the best thing ever. The moaning will not only do you good, but will draw responses from many people who feel the same, which makes you feel a little less alone, the endless questions and problems that haunt you on a daily basis are ours, too, and you won't need to worry about boring anyone, either. It is our ongoing 'conversation' that helps us to bounce back time and again. We even have smiles and laughs, and whilst many posts have made me cry, just as many have helped me count my/our blessings - by realising what may lie ahead, I become aware of what is, after all, still positive in our lives, what we CAN still enjoy together.
    Our goal posts have moved, many hopes and dreams have been buried, and not many days go by without a few deep sighs or groans, but since we can't give up, we may as well solder on and make the most of it.
    Chin up, girl, and let everyone here help you along this rotten path!
    All the best, Carmen
  6. connie

    connie Registered User

    Mar 7, 2004
    Hi Tansy - and welcome to the CLUB. I have a Masters degree in moaning, and most of the time feel fed-up. No, that is not strictly true, I read all the post on TP and it enables me to count my blessings.

    It is a voyage we are on, but not all in the same boat, so as we share experiences, delights and despairs we find ourselves sailing through calmer waters.

    Post often, and I am sure you will find some enlightenment and comfort. There are no straight answers, but it helps to know you are definitely not alone. Regards, Connie
  7. isabel

    isabel Registered User

    Apr 7, 2005


    This is the first time I have posted on this site. I too had my husband diagnosed with early onset he is 49 we have a 16 year old and 6 year old. He has just had the diagnosis two weeks ago so it is still very raw for us. Our 16 year old finds his aggressive behavior very difficult to deal with and thinks that he should be able to control it even though we have explained that this is a symtom of A.D. Our six year old thinks that people are giving her daddy too much information and that is why he has problems with his memory. This is all we have told her, that daddy has a problem with his memory as we feel she is too young to bombard her with things.

    I am scared of what lies ahead. The financial side of things, (as my husband has had to give up his job) the family side of things and also bringing up two children with the disease which is robbing us of the person that we love.

    I have also read that because each person is different that they cannot tell you what will happen at what stage the only choice we have really is to take one day at a time and deal with it and not worry too much about what will happen in the future though that is exactly what I do.

  8. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Dear Isabel
    Welcome to TP,we are here to try and help,don't hesitate to post whenever you have a need too.
    sorry to read you problems,you are right ,the only way is day by day and you are doing it already.
    Regarding advice, fact sheets are available,go to the top of this page left hand corner click on "factsheets.
    I you have desparate needs you can ring th Alzheimer's Society help line.
    Very best wishes
  9. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Isabel,

    Welcome to Talking Point. It is a great place to get information, ideas and support from others who have had similar experiences.

    Every individual's experience of Alzheimer's is different and so is their family's. I have to say that I found your description of your husband's illness and your children's reactions terribly moving. I have a nine-year-old daughter who has difficulty understanding why her grandad is changing, but that is not nearly the same thing as having to deal with your child's father undergoing similar changes.

    In addition to the factsheets that Norman mentioned, I recently finished reading a book that might be of interest to you. It's called 'Learning to Speak Alzheimers" by Joanne Koenig Coste. She found herself in a very similar situation to yours, with a husband with early-onset dementia and youg children. She has gone on to become something of an expert on supporting people with dementia and their families. The blurb for her book is here:


    and it is available at Amazon UK.

    Please feel free to post whenever you feel the need. This really is a very understanding and supportive forum.

    Take care,

  10. LeanneT

    LeanneT Registered User

    Jun 20, 2005
    Sydney Australia
    Hi Everyone,
    I'm new to talking point however have been looking for something similar in australia for a while. My husband recently turned 51 he was diagnosed with early onset of dementia is 1999 after undergoing surgery to have a malignant brain tumour removed (for the second time). While he has been given the cancer "all clear" nobody warned us about the possiblity of dementia. It started with simply forgetting, now it's changed behaviour, being paranoid, aggressive angry outbursts. We have 2 sons 14 and 11, my husband has been sick all of their lives, they have never known him to be any different. I work full time basically so we can have some quality of life but mostly for my sanity. He gets a very small pension (because I work) so we get by on one wage and little to no services. He is in the process of being assessed by a geriatrician who specialises in dementia in the hope that when the time comes we can get some more help at home. But to be quite honest I've had enough, my head tells me the dementia has taken over him and his responses are not truly him, however some days I wish he lived somewhere else. This new doctor is now telling us that there could be psychiatric problems as well!!
    I feel incredibly old (I'm only 40), tired and on my own.
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Leanne

    the benefit of the Internet is that it doesn't matter where you are, TP is available.

    The only thing is that, while symptoms, behaviours and situations may be similar across the world, medical regimes, social care, fees, etc will not be and that affects how useful TP may be to you.

    However, that does not stop TP being somewhere that you can talk to others - wherever they are - about your situation and your feelings.

    As a starter, no matter how much we love our partner who has dementia - it is quite normal to wish they were someplace else! Doesn't mean we don't love them, just means that the dementia that has taken them over is proving too much a challenge for us at the time.

    It sounds like things are progressing with assessment etc.

    Take things slowly, and do make sure you take care of yourself, for everyone's sakes.
  12. suzannapat

    suzannapat Registered User

    Nov 29, 2003
    ending aricept

    My husband has an appointment with his consultant for the first time in two years, on Friday.
    I know from the cpn and ot's that they consider he is no longer benefitting from his daily 15mg Aricept and that the consultant will take them away.
    Has anyone experience of the withdrawal of such a large dose (Iunderstand most people have 5 or 10mg) knowing only that "deterioration will be rapid".
  13. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003

    Dear Sue,
    I have no answer to your question, but your post strikes a chord: my husband had an assessment today, and the (new) consultant promptly informed me that he feels the time has come to withdraw Aricept (he has been on it for 5 years).
    I voiced the same fears as you: I have read many times that withdrawal is followed by a sudden / marked deterioration, which would suggest that the drugs had, in fact, still been effective. He tried to reassure me in various ways, even offering to re-introduce Aricept if a sudden deterioration occurred ..... only time will tell. It is a sad day for me, as I almost feel as though we are 'giving up' on what little we have left, but I have to bow to expert opinion.
    By the way: I have never heard of anyone on 15mg. How long has your husband been taking Aricept?
  14. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    Hi Nutty Nan ,sorry Your Fears Of Aricept Being Withdrawn,have Materialized, Please Keep A Very Detailed Diary ,of Every Thing That Happens Once Your Husband Stops, Dont Leave It Long Before You Get Back To The Consultant ,if You Find Any Deterioration ,good Luck .angela . I Also Have Not Heard Of 15 Ml Dose Before,
  15. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Angela,
    I am used to keeping fairly detailed notes, for my own benefit. What worries me is that if I did notice a more rapid decline, it would be too late to re-introduce Aricept anyway.
    I am trying hard not to get too worked up about it all. There is a slight irony in the timing of all this: our daughter is getting married this Saturday. We have known the date for just over a year, and had initially hoped that her Dad (they are very close) would be able to walk her up the aisle. This is now not possible, but we obviously want him to be there and share her special day. Our consultant (who unfortunately retired earlier this year) knew all this, and sensed that I was very anxious to keep things at optimum level for this special date. - The locum consultant, whom we have not seen or spoken to before, is almost certainly unaware of the significance of this weekend. I am grateful that we have made it this far - but I will obviously be monitoring the coming weeks extra carefully.
  16. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    HI NUTTY NAN ,when JIM came off aricept the first time ,it was only days before i noticed the differance ,his legs went ,although it was the consultant that took him off it ,i was getting the tablets from the doctor ,so after a week i just ordered them and put him back on ,as the consultant had agreed i could try him off for 2 week ,his walking picked back up ,12 month later we went through this again ,with the same result ,though he never quite picked up what he lost when off them ,it was a constant fight with the consultant to keep the tablets.It was the week of my daughters wedding ,that was held abroad ,when JIM confided that he was having mega problems at work ,things started to slot into place ,the holiday was tinged with sadness ,though i am so glad he managed to give our daughter away the tune they played was still his favourite up to the last month of his life ,he could remember exactly why ,,i really feel for you ,stay strong .ANGELA
  17. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Nutty Nan,

    Has the consultant mentioned Ebixa (mematine)? This drug is recommended for mid/late stage AD and is sometimes used in combination with Aricept. Note: Society drug fact sheet (link below) says:

    Furthermore, a person's symptoms could become worse if they stopped taking Aricept, which could then make it difficult to assess their suitability for Ebixa.

    You can read more about it here:



    Take care,

  18. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Interesting and confusing

    Angela and Sandy - thank you for your messages.
    This is all interesting and confusing at the same time!
    Angela, how long had Jim been on Aricept before he was taken off it the first time? The consultant countered my argument by suggesting that people mostly perceived a sudden deterioration because they were anxious and monitored more closely immediately after the withdrawal of Aricept (this, I feel, seems to be a rather cynical attitude towards carers!) :eek:
    Sandy, he did mention memantine (which is Ebixa), but insisted that very few of his patients had found it worked, and it was not available on prescription but would cost in the region of £90/month. In other words, he did not recommend it at all, in fact if anything, he suggested that perhaps Gingko Biloba might be a better investment.
    The bit that knocked the wind out of my sails was that the consultant said my husband's pulse was slow, and that this may well be due to Aricept, and needed to be addressed.
    I don't feel that I have much choice at the moment (consultant is writing to the GP re withdrawal of Aricept, so I obviously wouldn't be able to get a repeat prescription, and I would feel dreadful if it did result in complications regarding pulse / heartbeat etc). I will concentrate on the wedding weekend, monitor the situation, wait for the next assessment on Sept 5th, and then take it from there. Fingers crossed that nothing ghastly develops in the meantime .....
    Many thanks for all your comments!
  19. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    HI NUTTY NAN .Jim had been on aricept about 3 years ,and of course he had deteriorated a great deal ,that was her excuse to take him of ,as i said i fought against this and she allowed me to try him off for a few weeks, there was no doubt that things changed rapid ,in less than 2 week ,when he eventually came off it was because he was starting with aggression and hullucinating,so i gave in ,but then started the fight to get him on EBIXA or galintamine,in this short time his walking had gone ,and the bed was brought down stairs,he went from eating with a spoon ,although with some difficulty ,to being fed ,.i brought pressure on the consultant ,i was ringing her constantly ,and then cotacted PALs who made inquires, she then agreed to GALANTAMINE ,but this had no affect on him and this was stopped ,but there was no way she would discuss EBIXA ,all this time things was going down rapidly ,and he still had the aggression and delusions,i visited the GP and was very lucky to see an old doctor ,who had retired but was standing in for a few weeks ,i poured my heart out to him and used the argument abou what it would cost if he was taken into a nursing home or had constant care at home at their expence he agreed wholeheartedly ,and wrote to the P.C.T. USING THE SAME ARGUMENT .the outcome was i was allowed a 3 month trial,unfortunatly ,there was no affect with this ,and he died before the 3 months were up ,on the assesment ward,sorry if this depresses you , just want people to be aware ,that ,the aricept may still be working ,so fight to keep it if you think there is a chance.ANGELA
  20. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Angela,
    No need to apologise - all of this is depressing for us all, but I'd rather find out as much about it as possible. Because of the apparent slow pulse I have to be content with monitoring at the moment. If my husband manages to get to his 3rd assessment day on Sept 5th, they are bound to take his pulse again, and I will definitely ask them how it compared. By then I may also be able to gauge how he is after 2 weeks without Aricept.
    I will do my best not to get paranoid .....

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