1. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Twink, hopefully you will soon find this and reply to me on the open forum. Don't worry, you will soon get the hang of it. Lotsaluv, She. XX :)
     
  2. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Hi She!!

    Hi She,

    Aha! I found this post. I hope I'm not the only one who has such trouble finding my way around in here!? Please tell me I'm not!! I saw your PM and have written down your instructions which I will have a go at later. I have to go and give blood today, something to do with a charity for cancer that I'm involved in. This afternoon the computer man cometh!! I have many questions for him!!! I am really enjoying being here and the peole are so friendly and lovely, I just need to learn how to get about and it's making me all stressed!!

    I do emails to friends and use Incredimail normally on the pc and I can reply to their email and read what they had put at the same time and that's what I was hoping to do in here. I forget what people have said otherwise!!

    Thank you so much for your time and patience! Much appreciated. I have a feeling I might be back cos I'm in trouble again!!

    Love Sue
     
  3. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Hi Twink

    Don't stress you'll get the hang of it. I say that and sometimes I struggle still!
    Keep posting, you're among friends.
     
  4. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Thanks

    Thanks to She, Nada and Magic. I haven't a clue who anyone is yet either but I will get there in the end. Thank you for your help. I have actually only just found these posts, I'm making lots of notes on a pad. I've got a new computer too so have had the man round to set it up and he has to come back tomrorow to encrypt my router????? Sounds quite painful.

    t's been all go today. The support worker came around yesterday and we filled in the forms for enduring power of attorney and since her visit, I've had a few phone calls today. A social worker will come to see us to do an assessment and I can't remember what for but I'll find out when they get here and because Steve has rheumatoid and osteo arthritis, someone else will come to have a look and see if we need any grab rails or the bed raising up. He's only 55 and I'm sure hearing me talk about all this makes him feel like an old man. I can't believe that he was so clever and able to do so much only 3 years ago. He was only diagnosed in August but I just knew.

    Sue
     
  5. Finnian

    Finnian Registered User

    Sep 26, 2005
    60
    U.K.
    Twink,
    My husband is in his early 50s. He has a number of physical problems following a nasty accident YEARS ago. In the past two years he has developed signs of early dementia. I think its possiby brain damage from falls but it seems to be progressing. We're currently at the stage of waiting to see whether the changes stop or not. My hubby gets very down about being "old before his time". If we can help you or Steve at all just shout. I've been reading this forum for a while now and found lots of support.

    Finnian
     
  6. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Hi Finnian

    Thanks, great to hear from you. Everyone is so nice and so helpful. After Steve was diagnosed in August I have thought, is this is then, do I just get on with it, I know nothing about it or what will happen and then suddenly I've met people in here and because the support worker came yesterday I've had a few phone calls from different people today and my head is in a spin!

    The psychiatrist asked us if Steve had had an accident or a bump on the head the first time we went to see this particular one when he told us that it really was AD that Steve had. Steve hasn't had a bump as far as I know. The doctor said the brain scan showed lesions on his brain. I'm not sure how or why they are there. I've been told oh you don't want to know why type of dementia he's got do you. But I do. I know from Katie now that I can ask to see any letters from the psychiatrist that our GP gets.

    I understand the getting old before your time thing. We didn't expect this at 55 and 53.

    I think this forum is brilliant, the best thing I've found on the internet anyway!!! Not that I looked much, this was the first one I found actually.

    Hope your husband improves. Thanks again. Be nice to speak again of course.

    Sue
     
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hey Twink, see, knew you could do it! Well done that girl! Sounds like you've had a very busy but productive day all round. Now you know how to post, take your time and go through the other headings just as you did the "Support for" one, not only is there a section especially dedicated to younger sufferers, but there's a tea room, a jokes section, factsheets, (just click on the fact sheet icon in the left hand corner) and loads of other stuff. Enjoy! Lotsaluv, She. XX :)
     
  8. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Found it!

    Hi She and all,

    I think I've got it! Finding the mail in the forum anyway!! I had have a lot going on in the last few days, it's all happened at once after nothing at all!

    Has anyone any ideas about sleeping lots with AD? Steve has been going to bed about 9:30 for ages now and last night he went at 8pm and slept till 9:15 this morning!!! He's not on sleeping tablets, just Cipralex anti-depressants and Exelon. Another thing I noticed last night, in the kitchen, he had laid 4 teaspoons in a neat line on the draining board. I THINK I read somewhere that they sometimes do this sort of thing? Also, the phone rang a while ago and it rings 6 times and then goes to answer machine and he wandered in at a leisurely pace obviously having forgotten that and whoever it was didn't leave a message so now Steve thinks it was weird. He said"weird that phone call wasn't it?" so I explained he just didn't get to it in time that's all and they will ring back. He's on 3mg of Exelon twice a day now and I haven't noticed any difference. What I mean is he still seems to be slowly getting a little worse all the time but then I don't really understand what the drugs do.

    Love Sue
     
  9. JANICE

    JANICE Registered User

    Jun 28, 2005
    23
    SOUTHAMPTON
    Sleeping

    Hi Twink,

    Just read your post about your husband sleeping. My husband, Keith (58), could sleep for England since his diagnosis. He is asleep as soon as he sits down in the evening, sleeps his way through most of the evening just surfacing now and again and as soon as he gets to bed he is out like a light. I have spoken to others in our local group and they have said the same thing about their husbands so it must be a symptom. Keith also has problems with the phone, he gets very confused now when he answers it, invariably cuts people off and gets annoyed because he thinks there is no-one there so I try and get there before him these days to save the hassle!

    Best wishes

    Janice
     
  10. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Sleep

    Hi Janice,

    So many people!!! I hope to get to know everyone IF that's possible!!!

    Your post could have been written by me! I try and get to the phone first and usually Steve will actually sit and ignore he as he knows it will be for me and if he did pick it up, he would have to hand it to me anyway. I remember 3 years ago when we were moving from London to Essex, I didn't realise anything was wrong then and he would answer the phone to the solicitor or estate agent and then say, talk to Sue, she understand it better than I do and I would be really annoyed that he wouldn't deal with it. Now I understand why, 3 years later!

    Steve is sitting in the chair now and before long he will be snoring. He stays in more now than he did even a few weeks ago. He was always wandering off looking for someone to chat to. Even saw him talking to the water board men digging the road up the other day and he never used to chat to people he didn't know. Now he just sits in the chair and sleeps and then sleeps all night too.

    Sorry if I keep repeating myself in different posts, I'm having a problem remembering whether I've written in the group or to one of my friends. That worries me sometimes but only cos we're so aware of it living with it I suppose.

    I can't believe how many younger people with it there are. I really didn't know before that younger people got it.

    Take care

    Sue - Twink
     
  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Twink - me too!! (Repeating things, forgetting things etc.)
    I'm waiting for a Memory Clinic assessment appt. for my Mum, but keep wondering if I should have asked for a "double" so they can check me out too!

    Joking aside, it does make you so much more aware of the symptoms, doesn't it.
    But - if MY forgetfulness, sleeplessness, irritability etc. can be put down to depression, stress, tiredness, anxiety about my Mum etc., how can "they" be sure that her very similar symptoms are, instead, due to AD?
    :confused: Doh!!
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Sue, I think sleeping is a common occurance. Like your husban Lionel can go to bed at 9pm and sleep to 9am, unless he has a restless night. He is on 6mg Excelon twice a day (max. dose) and a mild anti-depressant. Lionel has been on this dosage now for 3 years, and on medication for 4 years. Slowly getting worse, but that is the sad part, they do not get better. We have to be happy for the staple times and the good days. Glad you are enjoying T.P. Connie
     
  13. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    sleeping

    Hi Connie,

    I have seen your name before as I noticed you live at Frinton on Sea. We lived there until almost 2 years ago. Only for a year though.

    Steve is sitting in the chair now staring at the ceiling and he will probably doze off before very long. I KNOW I am being awful but it really gets to me. He's not so ill with AD that he can't still do something but he just chooses not to. He has tried to fit a gate this afternoon in the back garden and then came in and said I can't do it, it's my hand. (He has arthritis bad) He always blames his hand, I suppose he doesn't want to or doesn't even realise that it is the AD. He was writing some numbers down earlier and thrust the notepad at me in the end as he couldn't think how to write a number 5. He has been back and forth over to the shop talking to the boys who own that a lot in the past few months and then one of them asked me the other day if Steve didn't like them anymore as he never goes in to chat with them now. One of them doesn't speak English very well and it's very difficult trying to explain AD to him!!! I can't get Steve to do anything these days, he just wants to sit in the chair and stare at the ceiling or doze and I just wish he would do something but then again, I don't know what. He refuses to do a jigsaw or a crossword with me. I know he couldn't do it but it would be soemthing just to sit and try and do it.

    Steve is on 6mg of Exelon a day but has only been on this since the beginning of this month. He was on 1.6 mg for one month before that.

    I expect because he was always so very busy, dashing here and there, never ever sat still, is why it bugs me when he just sits here. I know I am being awful but it really does annoy me. Before he was ill with his arthritis 3 years ago I never saw him and now he has that and the AD, he's here all the time. Just something else I will get used to.

    Sue
     
  14. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    sleeping

    :eek: Hi Twink.
    my husband has vascular dementia .This was confirmed by a M R I Scan 3 years ago. He also rests all the time laying down on the sofa sometimes at 10 o clock in the morning. he can do very little these days getting into a muddle with just about everything. he is not on any medication for his dementia but takes 4 other drugs for different problems. He is 74 and used to be a very good washing machine engineer, but he cannot even put a hook on the bathroom door now.Iknow what you mean when you say it,s trying when they just sit around and you cant even have a conversation anymore.

    Love Cynron x x yet another name for you!!! :(
     
  15. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    sleeping

    Hi Cynron,

    This is so good after not having a person in the world to talk to for all this time, now there are so many people to compare notes with! Thank you.

    I'm feeling ok in myself today but could be stroppy with Steve if I didn't keep a check on myself!! In a lot of ways he doesn't seem quite as bad as a lot of people I have read about in here but his short term memory is really bad - most times -and he just can't take in any simple instructions. As you say about your husband, Steve was a very good kitchen and bathroom fitter and really could do anything. Now it takes him ages to hang a nail in the wall. Strangely enough, he lent my son a wheel brace for his car about 6 weeks ago and STILL keeps harping on about that!? He never liked anyone using his tools or touching anything of his so maybe this is something that has stayed. Andy has got his wheel brace and he's remembered!!! I'm rather ashamed to say that I love it when he goes to bed early and stays in bed on a morning! I'm not used to having him around and now he's here all the time and extremely affectionate which he never was!!! Always pecking my cheek and saying how much he loves me. I do understnad that's probably insecurity and again, I'm quite ashamed to say, it gets on my nerves but I try not to show that. It's all new to me so I will get used to these things. He's never been an aggectionate person!

    I siuppose it's 'normal' whatever that is but I seem to have been really forgetful today! I agree with you, I'd maybe better have a check up!!!!

    If I'm not replying over the weekend, I am having major computer problems. BOTH of them are playing up and we had a man in this afternoon!!!!!! He's done more harm than good!

    Best wishes,

    Sue
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Twink

    Oh Twink, it is not as easy as that. I know it seems that way, but there is so much more going on.

    YOU may think he can still do something, but he has probably lost confidence so that HE doesn't think he can do anything. He doesn't choose not to - well, not in the way you or I would mean - he may choose not to take another hit on his confidence, another realisation that he has lost so much.

    It is classic that they come up with something they may think of as reasonable to explain their problem - anything that doesn't say "I don't think I can do it any more".

    In time to come you may wish he was back at this stage.

    I understand your comment that he is here all the time - reminds me of the famous saying about a recently retired husband from a stressed wife:
    "I married you for life - not for lunch!"

    It takes quite some time to come to terms with the aspects of this illness. Don't worry about how you feel - just make sure you are frustrated by the dementia, not by him.... :(
     
  17. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Twink

    Hello Bruce,

    I do understand what you are saying here, like I said, it's so new to me and he was always so active and so good at whatever he decided to do. It does make sense when you say that he probably doesn't want to do something he maybe knows he won't be able to. I haven't got used to the idea he can't do it really I suppose. I know I have an awful lot to learn about this illness and how it affects him. As I said, he was never at home, always working or playing and I got used to that, we've never been 'together' for a long time as we are now. Time to learn a new way of life for both of us.

    Sue
     
  18. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Sue

    Yes, it is a horrible transition to have to negotiate.

    Jan was the gregarious one and had fabulous musical skills [classically trained] and was beautiful, elegant with exquisite taste. Then - seemingly suddenly - it is all gone and she can't do anything, including write her own name. Yet at that stage, she looked pretty much entirely normal.

    It is a rough ride, coming to terms with that sort of change, and the realisation that life will never be the same again.

    Our difference, I suppose, is that we always were together for every second we could be, outside work. That provides its own problems when dementia strikes.

    ...don't know what is worse really..... :(
     
  19. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    twink

    How long in Jan's case was it from diagnosis to her not being able to write her name? Steve has had to do his signature a few times recently and however I explain it, he can't seem to grasp it and always write his name in capital letters. Forgive me for asking but when you say she looked pretty much normal, how do you mean? I always worry when Steve talks to people because he looks completely normal and young of course but aks them a question and then as soon as they have answered, he might ask again or they might realise that he doesn't know what they are talking about, he misses the point. I find it hard to explain. I tend to get people to one side and just mention to them that he has AD so they know and I'm not telling them in front of Steve. He's actually told someone today that he has got AD which is only the second time since he was diagnosed in August that he has said it.

    He has never spent time at home with the family. He worked for very long hours and then dashed home for a bite to eat, a shower and was off again so, as I said, it is strange having him here all the time and he wants to be right next to me and I'm just not used to it. He always had hobbies and threw himself 100% into those, he hated being stuck indoors.

    I am learning all the time, especially since I found this forum. Just reading what others say and their experiences is very interesting. Frightening too. I wish they could tell us what will happen next and when but I fully understand that no-one can.

    Sue
     
  20. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    sorry

    Sorry Bruce, I don't know what happened there, there was more message that didn't appear. I actually said forgive me for asking about Jan and how did you mean when you said she looked almost entirely normal then.

    Sue
     

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