1. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    This is my first post and hopefully this forum will offer contact because I have only just realised how lonely I feel. My husband has a dementia of the fronto temperal lobe which means he can't find the right words. He is now at the point that no one, but me, can understand anything he says. He knows what he's saying. This makes it difficult for other people and it is a hard thing to admit to being lonely. If I feel like this, then my husband must feel it too!!
     
  2. germain

    germain Registered User

    Jul 7, 2007
    342
    Hello and welcome

    Hi there,

    Welcome to TP - you'll find lots of support and friendship here.

    I have no experience of your hubby's kind of dementia but there will be someone along soon who will have "been there, done that, got the T-shirt" - in the nicest possible way.

    However, lots of dementia sufferers lose language at some point - our Mum could garble for Britain ! Someone will point you in the right direction for some factsheets - you can access them from this site and I'm sure they'll help.

    Anyway - welcome again - you've come to the right place.

    Regards

    Germain
     
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Welcome to TP helen, hoping that now you found us all you won't feel so lonely .

    Is they any groups in your area that you can both attend as in AZ carer group ?
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,882
    Kent
    Hello Helen.

    This is the factsheet about your husband`s condition.
    http://www.alzheimers.org.uk/factsheet/404
    I hope it helps.

    Loneliness is a condition all carers of those with any form of dementia have to face, and Talking Point [TP] is our main source of contact with others in similar positions.

    Whatever form of dementia we are involved with, everyone on this site wll identify with you, and I hope you will soon feel the support, love and friendship that is here.

    The loss of language and communication is a trauma in itself. I have only had one experience of this with my husband so far, and it was scary. I am so sorry your husband is losing his. Does he still understand what is said?

    There are other members who live with FTD
    and I`m sure they will soon be offering their support.

    Please keep in contact.

    Love xx
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi again, Helen, I answered your other thread first.

    My husband John has PPA (primary progressive aphasia), which is a form of FTD. He lost his language very early on, and yes, I can relate to the loneliness. I carried on until I was almost at breaking point before I admitted that I needed help. I hope you won't be as daft as me!

    Have you had a carers' assessment? If not, you need to get in touch with SS and demand one. I think to mentioned an assessment on your other thread, but this one is specifically to assess your needs as a carer. One of those needs is to be able to talk to people on an ordinary basis, and they should provide someone compatible to spend some time with your husband to enable you to pursue your own interests.

    I've loads more info, but don't want to load you with too much at a time. But definitely get onto SS and sort out that assessment. It's every carer's right.
     
  6. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hello Helen,

    I too answered your second thread first! I'm not at all organised today.

    My mum also has Fronto Temporal Dementia and so has completely lost her speech (apart from occasional words said in the height of emotion).

    Mum was only diagnosed in July last year but we believe she had been suffering from this for at least 4 1/2 years. It has been so difficult getting diagnosed - they claimed it was grief, depression, a mental block... the list goes on.

    Has this been your experience too?

    The problem in our area is that no one seems to know what to do with mum or what help to give dad. Frankly they know nothing about it and are making very little effort (to my mind) to find out. They just keep trying to treat her as an AZ sufferer which is just no use at all. Mum is only just 60 and this also gives us lots of problems as she doesn't fit the "old age" criteria everyone seems to be looking for. Is your husband quite young as well?

    There are other people here on TP who care for people with FTD so hopefully you'll find this to be a great place to off load and get support and advice. I love it here!! (In a strange "wish I'd never had to find out about it" way!)
     
  7. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hello Helen

    I have found lonelness so very difficult to deal with - how can you feel lonely in the company of the one you love? When you think about it you can feel lonely on a crowded train so loneliness is not related to the number of people around us but rather in our minds and it is none the less real.

    Dick
     
  8. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello Dick G

    I do feel lonely in the company of the one I love. I feel the loss of his ability to empathise with me. I miss being able to discuss things together. I miss being able to share some of the responsibilities. I miss the way he used to give to me. I miss the ways in which he was able to tell me that he loved me. In many ways I am alone. I know what it means to me (within limits) but I don't think Alan realises how it affects me. I think I'd feel less lonely on a crowded train because there would at least be the possibility of making a connection with someone.

    How do you deal with your aloneness? I deal with it by denial most of the time. I can always see positives. I even see the positive in this situation because I keep telling myself that these are the good days, the bad aren't here yet. If I'm alone now, I dread to think what is to come.

    Sorry, I think I'm rambling again. It's just so good to connect to someone who will understand, or try to, what I'm saying.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,882
    Kent
    Helen it is not really the loneliness, it is the aloneness, if there is such a word.

    It is being alone to make decisions, it is not having someone to share with, it is being responsible for another person, and at the same time you are not living alone, just feeling alone.
     
  10. heartbroken

    heartbroken Registered User

    Feb 17, 2008
    747
    derbyshire
    Hi and welcome to TP
     
  11. charleyfarley

    charleyfarley Registered User

    Mar 28, 2008
    17
    surrey
    first post

    Although I have read through posts regularly for a while I wanted to reply to you as I feel exactly the same . My husband was diagnosed with AD 2 years ago but his symptoms seem the same as your husbands, for about a year now his speech has grown steadily worse and although I can get the gist of it sometimes its very frustrating for both of us. I feel sad that I have lost my friend and confidante, someone to moan to or just the everyday chatter that we take for granted. Lately I am finding life very difficult as he has become aggressive if I try to help him - maybe change his trousers the right way round or if he has put his underpants on top of his trousers!Also he has started swearing and threatening violence if he has to do something he doesnt want to do, like waiting in the Doctors surgery! Sometimes I just have to have a good cry then get up and go again, I just feel as though I dont know how much longer I can go on- but it passes and I will. x
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,882
    Kent
    I know you must tell him, as you don`t want him to look a fool, but each time you do, you are identifying another failure for him. His anger is his only defence.

    My husband still gets cross if I say he has done something the wrong way round, and it`s really difficult to know when to tell and when to keep quiet.

    I sympathize so much with the loss of language and communication. AS you say, no one realizes the importance of inconsequential chatter, until it is lost.

    Having a good cry and then `getting up again` is perhaps the only way.

    Take care xx
     
  13. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello Charleyfarley

    Thanks for posting. I'm new to talking point and have spent some time looking at people's posts and coming to terms with what the whole experience means to me. At the moment it's like coming from that place we both talk about (having lost our buddy) and finding myself in a room with loads of people, all of whom have something to say. It's really hard in some way and really helpful at the same time. It's like everyone talking at the same time and not quite knowing where to begin meaningful contact. Everytime I think like this, I wonder if Alan feels the same. Sometimes I wish I didn't compare and just let myself be - it's like I'm working all the time. It's like when people visit, even if it's only one or two, Alan must feel like the room is full of talk but he doesn't know where to begin and how to make meaningful contributions. Meaningful, meaning that one is touched in some way.

    It seems your relationship has taken another turn in the road which must be really scary because unless one has experience, we are never quite sure where the road leads and it certainly seems like one of those roads you would want to get off. Like me yesterday ending up on the M1 by mistake. Fortunately, I managed to get off after about 4 minutes. Alan hasn't got angry yet. My daughter says she feels he is more gentle and soft. I think he is too. I don't know how I'll cope if he gets to the angry bit because it will tap into some scary stuff for me and if I struggle then who'll be there for us. Sometimes I feel like it is like balancing plates. I have become a lot more controlling because I'm so scared of anything being out of place and things falling apart. Your husband being angry is something you can't control and to me that's scary. On the positive side, I think we are tremendously strong, even though we don't feel it, and we do carry on down these uncomfortable roads.

    I do hope I haven't gone on too much. Another thing I've noticed about myself - I keep apologising for having a voice. How odd!!!

    Love Helen
     
  14. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hi Kate P

    I've some time today and have spent some of reading the posts. I was reading your reply to me and about your experience with your mum's diagnosis. It was different with Alan. I didn't take him to the doctors for ages because I thought it was just age related. It wasn't until about 18 months later when I got to the point of realising that no one but me understood what he was saying. It just seemed to creep up on us. The doctor first thought it was possibly little strokes but that was ruled out and there was no sign of stroke disease. He was immediately then referred to a neurologist who suspected it was fronto temperal dementia and organised tests and scans. Some of this experience I have written in the article "This is Me". It was only the other day that Alan was able to share his feelings about how upset and annoyed he is about not being given the results of these tests and scans. If it had'nt been for the lady from the Alzheimers Society coming to visit us, we probably would still be completely in the dark. Anyway there was no problem in the efficiency of the tests and scans but a real lack in the communication of the results. I don't think it was because of any confusion or complication, I think it was because there was nothing anyone could do so they didn't bother. If he'd required medication, or if he'd agreed to be used for research, things might have been different.

    It really is the Alzheimers Society that has proved to be the best possible help to both of us.

    Anyway, hoping you have a good day Kate P.

    Helen
     
  15. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Helen

    How do I deal with aloneness- badly! The only significant company I want is denied me. Perhaps one day I will no longer be alone but until then my TP friends are a great support. I wish I could offer more than mutual support.

    I am an optimist and I know that there are better times ahead but it seems a difficult and interminable journey.

    Dick
     
  16. charleyfarley

    charleyfarley Registered User

    Mar 28, 2008
    17
    surrey
    Not a good couple of days

    I feel so sad for my husband and sorry for me too! The doc has increased his Amulspride to try and kerb his aggression and I have been in touch with the hospital for a home visit to try and get some help and advice. He has become so in need of my undivided attention, he doesnt seem to like me to have a conversation with anyone. So we will have to wait and see if the increase does any good. He still manages to tell me he loves me which is one of the few things in his vocabulary he can say, the other being an unprintable swear word! I alos have felt so alone and left to cope on my own, which I have managed to do so far but I now feel that things are getting beyond me and I need help and if I can somehow manage to get some free time it would be great. I dont mind the caring for him that could go on forever but its the not knowing what is going to happen next and if he will one day follow through with that left hook! Thanks everyone for your comments - that was particularly true about every time I point out something he hasnt done properly is another confirmation of how useless he must feel. But what can you do I cannot let him walk about with shoes on the wrong feet or trousers inside out and pants on top! Never mind we had 38 happy years, we are just not going to get that happy retirement we dreamed of!
     

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