An intro - better late than never!

Discussion in 'ARCHIVE FORUM: Support discussions' started by CHESS, Apr 8, 2008.

  1. CHESS

    CHESS Registered User

    May 14, 2006
    136
    LANCS.
    Having never posted an intro, and now needing to ask some questions (I'll leave them to other threads!), I thought I had better give you some background info.

    I live with my Mum in our jointly-owned house. My Mum is 81 and was diagnosed with AD just over three years ago, being prescribed Exelon. She has no idea about the AD, just thinks her memory is bad. I have a regd. EPA, we get full-rate Attendance Allowance and have the rate relief from the council.

    I am fortunate to not be working(unfortunately through anxiety/depression) and have no other dependants (other than my dog!). This means I am full-time carer. I have wonderfully supportive family and friends, who would love to help more. The problem with this is that my Mum just wants to be with me and my dog all the time. My sister usually manages to take her out(my Mum, not the dog!) for a few hours once a week, though I only tell my Mum about an hour before my sister's arrival, otherwise she becomes "unwell". She always enjoys herself whilst she is out, but doesn't always give that impression when she gets back.

    I realize I need more time to myself and, to this end, arranged a carer's assessment last week. I shall be getting vouchers (to use with Crossroads or other agencies) for three hours per week. An assessment for my Mum, with a view to day-care once a week and, possibly, carers in the morning to assist with washing and dressing (I recently had to go to A & E when my back went into spasm and I couldn't move) is being arranged for the end of April, after my Mum has had her next assessment at the clinic. (My Mum actually agreed to all this, but it went straight over her head!).

    Thanks for listening, everyone, and for all the help you've already given me, indirectly, by reading other posts.

    Best wishes to you all.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,658
    Kent
    Thanks for that CHESS, it does help to have some background.

    I`m glad you are finally getting some help. It will come to us all in time. It will be interesting to hear how your mother accepts it.

    Love xx
     
  3. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    well done for realising that you have your own needs to attend to.underlying needs of carers are often overlooked.take the chance to have a break from routine.good luck
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi CHESS

    Thanks for the intro. I've just realised that you joined at about the same time as I did, but I really knew nothing about you. Good to meet you!:)

    You're doing all the right things, getting help with your mum. You're lucky to have a supportive family, but it's still a lonely business, and if you suffer from depression you really need to get out and talk to people -- from one who knows!:eek:

    Hope to hear more from you soon,

    Love,
     
  5. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    Good on you Chess

    HI there my friend, I am so pleased that you are able to put it into words.
    You will certainly get the help and support you need here, as indeed you have given me so much support since I joined.
    Good on you!!
    Love
    Andrea
     
  6. CHESS

    CHESS Registered User

    May 14, 2006
    136
    LANCS.
    Me being selfish!

    Thanks to you all for your reassuring comments, and to others for simply reading my post.

    It made me feel very selfish. I know so much about you, Sylvia, Elaine, Skye, Andrea and others, and many of us have been in touch already.

    Please accept my sincere apologies for keeping you in the dark. I promise I shall be more open in the future; in fact, you'll probably be wishing I'd go back into my shell!

    Love to you all.

    Chessxx
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,658
    Kent
    It isn`t easy to open your heart to a void, and that`s what it seems we have, when we first come to Talking Point.

    I don`t think I ever introduced myself, I began to post by just replying to others for quite a long time.

    So no need to apologise CHESS, we are pleased to know you. :)
     
  8. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Please don't go back in your shell! I am a regular visitor here and like you say there are some people whose circumstances we are familiar with, but it is hard to keep track of everyone, especially if you have missed their initial introduction.

    I have mentioned before that it would be helpful if everyone could have a profile as to their particular situation (if they wish to share). Such as it is my husband/ wife/ father/ mother/ Auntie Nellie who has dementia. He/ she is in hospital/ care home/ at home. In the latter case they live alone/ with me /
    with another family member etc.

    This would save people having to preface each post with their particular circumstances and would mean that people reading their posts would firstly be able to identify with them, and secondly have a better idea of what help or support to offer. If you click on someone's personal profile there is a limited space to explain your situation and many are not updated since they first joined.

    Mods, are you listening? ;):D
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,658
    Kent
    Everyone does have a Profile Sue which they write when they register. It can always be edited. It could also be written up as their signature should they wish. :)
     
  10. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    I know you're listening Sylvia. But the Public Profile is written when registering, usually when someone is in crisis and they really don't know what to put. I remember I tried to type a whole epistle and then ran out of space!

    Like you and Chess I think I started by responding to other's posts whilst finding my feet rather than starting my own thread introducing myself.

    I know you're much more attentive here than I am (that's not meant to be sarcastic) and maybe don't lose track of people, but I will see a familiar name, and think oh yes that's so-and-so, their mum, or is it their Dad, has AD and is in hospital. No wait he lives alone. So I click on Personal Profile and it says 'relative with AD'; so I click on find all posts by so-and-so and there are 4 pages; so click on find threads started by so-and-so and we are down to 2 pages; but maybe like me they didn't start a thread with their own situation.

    When I first joined I felt a bit like a person walking into a room where everyone knew everyone else and I didn't know anyone (not that I wasn't made to feel welcome:)) Now I feel like I have been introduced to most of the people but some of them go out of the room for a while and when they come back I have forgotten who they are. Maybe it's just me. :eek:
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,658
    Kent
    I`m still not sure where you would like these profiles Sue, and how we would access them. :confused:

    I don`t know whether it`s because it`s late or because I am having a `senior moment`, but I`m having problems working out precisely what you mean. :eek:
     
  12. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    I don't know either Sylvia, and I don't know how it would be achieved.

    I guess it's human nature that we don't introduce ourselves to people with a full personal history and just let people get to know us as time goes on.

    You're right it is late and maybe I'll find a better way of expressing myself tomorrow :D
     
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #13 Margarita, Apr 13, 2008
    Last edited: Apr 13, 2008
    Vouchers Now I have never heard of that well I have but back in the days when they did dinner school Vouchers .

    I know of direct payment . Sounds very old fashion Vouchers

    I found that also happen with my mother I think it’s just a Symptom of dementia she feel safe only when she around you, because she got so use to only being with you. If you let it carry on it became very isolating for you & can make your depression worse I only know that because it was happening to me.

    I was told that to encourage mum to go to day centre & leave mum with my daughters more even if she did not like it , because as the disease progresses she get so use to being with me so much that she find it hard to stay with anyone else . It was true that why they also encourage me to get mum use to respite

    Have they not also allocated you so many weeks a year for your mother to go into respite care home? is that too hard for you to contemplate at the moment.


    I must say Sue I do agree with you, as I also found on our profile we can only write a small part about ourselves


    I am glad to read about you Chess as I always like to read how someone else is coping ,caring for parents alone at home
     
  14. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Sorry, I am sure someone is going to get cross with me, but what is a profile, when did I do one? how do I find other peoples profiles?

    I, too, feel that everyone knows everyone else, and I am just a pest interjecting every now and again.

    Those profiles might be useful.

    Signature? I thought a signature was a "goodbye" thing, not a "hello" thing. I am confused. Sorry.

    I am lost on CPNs and other things. My mother has no help from anybody professional, or if she does I don't know about it.

    I am so sad and worried.

    Margaret
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    #15 Skye, Apr 13, 2008
    Last edited: Apr 13, 2008
    It's not just you, Sue! When people post regularly, you get to know them, and they become virtual friends. I always look out for posts from these friends, and look forward to their updates.

    Some people post regularly for a while, and you get to know them. Then they disappear as circumstances change. If they return, I recognise the name, but sometimes have to remind myself of their circumstances. And you're right, it is a fag trawling through old posts in case you get it wrong.

    I can see that a longer profile would be helpful, but that would depend on people remembering to update them regularly. (Memo: I don't think I've updated mine!)

    Also, it would take a huge amount of storage if every new member filled one in. If you look through the members' list, so many have disappeared completely. How long would their profiles be stored?

    Good suggestion, and I hope it will be considered by the sdministrators, but there are problems!

    Margaret, if you click your own name, you have the option to view your public profile, a brief statement of why you joined. Sue is suggestion that it would help to have a longer one, with more info.

    You can also see your 'signature' in the same place. It appears at the bottom of every post you make. You can write whatever you like here, some people have a motto or a mantra. I'm not sure how many words you're allowed here
     
  16. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    Profiles

    HI there everyone
    I'm all for profiles, however, in my personal circumstances I would have found it difficult to put a profile together in the initial stages of joining as I for one, wasn't sure just how much to put about myself, my circumstances, my family etc.
    I do, find that as time goes on (relatively short in my time) I am opening up more and more, that is because of the fantastic help from Sylvia, Chess and I have to say Gigi, although we don't speak too often they have certainly given me much support and encouragement to open up more and not feel guilty about speaking out when I myself, do find it difficult to speak out.
    So, profiles or not, I do envisage that this would take a lot more input from the administrators who I am sure do give as much as they could possibly give under the distress and circumstances that we, and they, are experiencing each and every day.
    Love
    Andrea
     
  17. CHESS

    CHESS Registered User

    May 14, 2006
    136
    LANCS.
    #17 CHESS, Apr 13, 2008
    Last edited: Apr 13, 2008
    Margaret,

    I felt as you did, prior to writing my intro. I now feel I belong. Your profile reads, "Coping". As Sue has said, we all write these on joining, not really knowing (or probably even caring) how they would be used. To this end, I have edited both my signature and profile.

    I must say, I feel that you, too, are one of those I know, and that you "belong" here. You really are a valued member of TP (and that's not meant to be a platitude!). I think it's just how WE, personally, feel about our role. I didn't feel I belonged and now I do. You don't feel you belong and you DO. Welcome!

    Sue,

    I couldn't agree with you more! Let me know what you think about my new edits. If this is what you were meaning, then there was plenty of room in the profile box.

    Maggie,

    Sorry, a friend is about to arrive, but didn't want you to think I'd missed your post! Will get back to you later.

    Love to all.xx
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    #18 Skye, Apr 13, 2008
    Last edited: Apr 13, 2008
    Hi Chess

    Not Sue, but I've just looked at your new profile. It's excellent, and I think gives enough info.

    Love,

    PS I've just updated mine! Thanks for the reminder.
     
  19. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Yes I have updated mine too and had more room than I thought.

    I was looking at another forum and to join that one you have to register and then email the mods with your reason for wanting to join before they decide whether or not to accept you.

    The advantages would include:-
    1. It could be used as an introduction to each member
    2. It would stop those strange individuals who have no interest in dementia from using the forum for their own ends.

    The disadvantages would include:-
    1. A lot of extra work for the mods
    2. It may discourage people who need support, but don't feel like baring their soul, from joining.

    No, I don't have the answer, however there is a whole forum called 'About Talking Point Members'. Could this be used in some way? Or perhaps when registering some pointers as to what to put in the Public Profile could be given. Maybe something along the lines of:-

    'Please give as much information about your personal circumstances as you feel comfortable with. This will serve as an introduction and help other users to offer appropriate support and advice. These details might include:- your reason for joining TP, i.e. personal or professional; if you are caring or helping to care for someone with dementia; if so what is your relationship with that person; are you the main carer; does the sufferer live at home, in hospital or in a care home; etc...

    Followed by the usual warning about not giving information that could identify you.

    Just a thought.
     
  20. knackered

    knackered Registered User

    Apr 8, 2008
    21
    Sussex
    Margaret W

    Margaret, I often come across your posts, I love them! They are so 'to-the point' and often humourous.

    I only registered with TP recently and didnt put much in my profile, as it caught me off guard, it is a public forum and I wasnt sure what to expect. Like Chess, I have pitched in when I felt I had something to contribute rather than spending time on my profile.

    I too have come across a lot of jargon and acronyms but have stumbled across so many useful links given by other members in various threads. I just spend a lot of time at night reading the different posts.

    I'm so sorry you feel sad and worried. We all feel like that.

    Presumably your mother saw a psychiatrist at some point? Does she have regular visits to a consultant? Is she on medication? etc

    Perhaps someone with more experience on TP could advise you on CPNs etc? In a private letter?

    knackered
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.