what is this thing you all call support?

Discussion in 'ARCHIVE FORUM: Support discussions' started by VeryCoolBreeze, Jan 11, 2008.

  1. .... support? I have no idea of the meaning of the word, because over the last 5 years of my life, no, of our life, I have never had anything which could be called support. Which is Why I ask what is this word called support? nobody out there who cares, no such thing as a social worker who actually listenst, to me or to him or to her or to them. So all I ask is how do you define support? and where do you look for it? and find it? When you are lied to each and every day about that which defineds your loved one, the person with dementia that hyou are trying to help?
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    I think the answer depends on where you live. For me there is little support except from exceptional friends. The local Alz Group has been wonderful (1) to meet some special friends (2) to guide as to where the support is (usually only in emergency).

    In theory the support should come from Social Services, your GP and the local Mental Health Team!!?? I KNOW they exist but as yet they have not 'zoned in' to us. I think that is because we are seen to be coping and need to be tested in an emergency.

    Others may have different ideas.

    Best wishes Jan
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi VeryCoolBreeze

    You sound as if you desperately need some support.

    Could you possibly give us more information? For example, who are you caring for? How long have they had dementia? Are they receiving medication? Have you contacted your local branch of Alzheimer's Society?

    I'm sorry to ask so many questions, but it's very difficult to try to help without knowing what sort of help is needed.

    Please talk to us, we do try to be supportive.
  4. If I talk to those in a position of making decisions day after day after day after day of caring for my gal who was diagnosed with vascular demenitia about 4 years ago now, even tho I had been bhanging on their doors and crying help help help. Somethihng is not right here, and lo and behold 4 years later i am still having to deal with all of their non-decisions. I am about to shove it all and igve up the effort ... why should i bother any mnore. it is now destroying me in the process of trying to help her. but they don't care about me, and why should they, the fact is that i don't suffer from memory loss, but6 they do each day that they tell me they can't even be bothered to remember her name, or how she likes to be called. so ... what is this thing called SUPPORT or even care for her or for me? don't know and for the mometn don't dcare
  5. gigi

    gigi Registered User

    Nov 16, 2007
    East Midlands
    Hello VeryCoolBreeze,

    Jan is right-this is where your support should come from.

    Has your gal had a proper diagnosis and if so she should have a consultant..if things are becoming too difficult for you to deal with contact the consultant and tell him/her how it is.

    You do sound pretty desperate- there is a lot of support here on TP and we're all here to listen..do you want to give us some more info about your situation? It may help others to help you.

    Love Gigi xx
  6. Nell

    Nell Registered User

    Aug 9, 2005
    Dear VeryCoolBreeze,

    Your post shows that you are nearing the end of your tether - and no wonder! All that effort and no help! People who should be helping being worse than useless, by the sound of it. All your love and care for your "gal" being looked on as "nothing" by the powers that be, when everyone of us here knows the super-hero effort required to do what you are doing.

    My friend, we are your friends here. You don't know any of us (in reality) but you will find we can be better supporters than you might imagine. Because we all have loved ones with dementia, all at different stages and with different symptoms, different needs and different support systems, you can always find someone who can help.

    Your post reminds me of a poster I used to have which said:

    "When you reach the end of your rope, tie a knot and hang on!"

    I think you are at that stage - you have reached the end of your rope, tied the knot and are (just) hanging on.

    If you can tell us about your specific situation (you don't have to give identifying information - just general locality, etc.) I think you will find TP members who can help you access more support and care than you are getting.

    As an Australian, I cannot advise you on support systems but I can send you very big and very caring

  7. snooky

    snooky Registered User

    May 12, 2007
    That support is DEFINITELY here!

    Hi VeryCoolBreeze,
    Yes, you do sound at the end of your tether. Believe me, you have come to the right place. There is loads of support on here, from people who know what you are going through and can help and support you in every way. I have found it on here and I know that you will too. We are all at different stages and have been through different things, and people here know where to point you for help and what to say. I do not know what I would have done without the suppport from people on here who truly understand what it is like. Keep posting and please let us know how we can help, you will receive plenty of support and solid advice from here, you have come to the right place.
    Take care
    Snooky x
  8. nemesisis

    nemesisis Registered User

    May 25, 2006
    Unfortunatly (like you) I found social services absolutely rubbish they come out and visit, make out they are concerned and offer to send extra care providers, day care etc. and then phone you two weeks later saying "having spoken to my supervisor unfortunatly this service is not available at the moment I will visit again in 6 months" this forum has been the best support to me. So please keep strong we are here for you x
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello VeryCoolBreeze,

    I think the support is there if you are prepared to take what`s on offer, but as the provision seems so different in different areas, I don`t think it can be defined. And what is on offer seems inflexible, so it`s a case of take it or leave it.

    So far, I`ve been unable to feel any real benefit from the support that has been offered to me. The support I have accepted has been mainly cosmetic.

    The most invaluable support I have received so far is the morale boosting support that I`ve found on TP.
  10. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Like many others, Social Services have been a complete waste of time. As a disabled Carer for my husband, yes he did get some help whilst he was still at home and don't get me wrong I really needed that help and support from fantastic Carers.
    Consultant and Doctors were brilliant. Last May when they put my husband into a E.M.I. Unit, the stupid S.W. said when asked by Case Worker what support for Christine? Her reply was, she know about A.D. (o.k. I did know about it before my husband had it) but dealing with the situation where your loved one is concern, to be told no support for me.
    Then thanks to my brilliant Case Worker, someone came out to assess me. I could not understand a word she was asking properly. Her reply was, well you have managed to cope for 21 years. I was so livid. I agree entirely, there is not enough support given. Apart from my family and friends and the Local A.S. Branch and everyone here on Talking Point that has been my support and for that I am so grateful.
    I wish you all the best
  11. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    This is either one of the saddest threads I have read in a long time, or I and mum are unbelievably lucky. I concede she has a marvellous GP who has supported us both since pre-diagnosis - I live in an area where the MATs Team work in partnership with an Age Concern project who care for the carers too - and for where she is 'at' just now we do seem to have a wealth of support which is not afforded to others ...... but that has not been without much banging on doors .... especially social services - who opened and closed mum's case several times when I said 'meals on wheels' was not the answer to our problems.

    That said, I don't like to think of social workers being 'rubbished' or called 'stupid' - they are highly qualified professionals - and as in any other walk of life - some of them are better than others ..... but unlike many others work within (local or national) government directed guidelines and often have their own hands tied .....

    I found three little words seemed to open doors ....... 'I can't cope'........ maybe we just have to find the right person to say it to?

  12. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Hello VeryCoolBreeze

    I am so very sorry that you have clearly been let down by the 'system'

    I can only speak from my own experience on how to approach this thing called 'support'.

    Write down a list of your and your gals needs e.g. carer coming in to help with washing/dressing. Day Centre care by how many times a week you think you and your gal need etc etc.

    Telephone your local Alzheimer's Society and ask them to help you access the right departments.

    Finally, I am a great one for the power of the pen, and keeping copies, much harder to deny than a phone call. If you fail at grass roots level, then onward and upward to management, and if all else fails your MP.

    You will find plenty of support from your local Alzheimers Society, and also here too.

    Please keep in touch, and let us know how you are.

    Best wishes
  13. eiggam

    eiggam Registered User

    Jan 5, 2007

    Hello Very Cool Breeze,
    This is a definition of Support from a dictionary.

    Hope this helps,

    support >verb 1 bear all or part of the weight of. 2 give assistance, encouragement, or approval to. 3 be actively interested in (a sports team). 4 provide with a home and the necessities of life. 5 be capable of sustaining (life). 6 confirm or back up. 7 endure; tolerate. 8 [supporting] of secondary importance to the leading roles in a play or film. 9 (of a pop or rock group or performer) function as a secondary act to (another) at a concert. >noun 1 a person or thing that supports. 2 the action of supporting or the state of being supported. 3 assistance, encouragement, or approval.
  14. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Karen, I too found those three little words had a magical effect. They're not easy to say for one of life's 'copers', but when you're absolutely desperate, they do work.
  15. ellie 123

    ellie 123 Registered User

    May 25, 2006
    Hi Very Cool Breeze

    I'm sorry to say I've had the same experience as you and it's not so much the caring for mum as all the red tape, the proefessionals that don't give a dam.

    When mum said she wanted to die last week, I thought - yep, I know how you feel, lets both end it.

    Sorry I can't be up beat like the others.

  16. Hi Ellie, Are You Ok?

    Dear Ellie

    I get the feeling that you and I are in the same or similar mud-swamp at the moment., so I can only thank you for haveing the time to send your reply.No, I can't be upbeat either, like others fortunately can, and I envy them their upbeatness-ability! Like you, I would say the caring is the easy bit ... which I supoose makes you and me lucky to have someone who knows that we are caring as best we can. The hard bit is all the other bug.ers that we have to deal with, day by day by day by day. There's a song that comes to mind there ... "Day by day, dear lord ..." but can't remember the rest.

    I wouldn't mind if they could say "no, can't do that" and give reason why.But they cant do that, all they say is 'i'll see what i can do'. **** is the only word to describe it all. And i know that different post codes means different acess to help ... but for the life of me, I can't work out why that should be the case.

    Have been AWOL since my desperate post - which it was then cos i was so utterly fed up with it all - because I have tried to contact friends who have comeup trumps. One has promised to phone socialworker tomorrowjn, the same socialworker one who keeps saying again and again and again "i'll see what i can do." Which means usualy i won't try to do anything, and i can't see anyway because i can't be bothered to make the effort to look.

    I do hope you have your head above water again, as i have mine, for the momeent. Take lots of care
  17. Nell

    Nell Registered User

    Aug 9, 2005
    Dear VeryCoolBreeze,

    OK, you've had the sympathy - now it is time for the "tough talk"!

    Everyone on TP understands your feelings and the troubles you have been / are undergoing. Many of them have been in the same boat - or (dare I say?) even worse.

    You have had LOTS of good suggestions given to you, not least of which is to let us know more about your circumstances. Without any idea of your wife's diagnosis, your whereabouts, etc. and the specific difficulties you are coping with, NO ONE can give you specific advice to help you.

    And i know that different post codes means different acess to help ... but for the life of me, I can't work out why that should be the case. No one understands this - no-one. All any one can do is battle on. BUT (and it is a big BUT) if there are people living in your area, who are TP members, they may be able to give you some pointers or advice as to where to access REAL help.

    One has promised to phone socialworker tomorrowjn, the same socialworker one who keeps saying again and again and again "i'll see what i can do." Which means usualy i won't try to do anything, and i can't see anyway because i can't be bothered to make the effort to look.

    The above quote reflects your utter despair and I truly, truly feel desperately sad for you. As a life long sufferer of depression I (and many others) know only too well that feeling of i can't be bothered to make the effort to look.

    But, please, if you can only conquer this feeling for a short time - do let us on TP help you. Allow those in the UK some information about your circumstances and the sort of support you need - and I am confident you will get good suggestions and ideas.

    Don't rely on the Social Worker who is proving to be useless. It may not be his/her fault - it could be that funding, regulations, etc. are preventing the SW from helping you - but nevertheless YOU are getting nothing from this SW.

    Time now to see if any of your needs, or those of your gal, can be met elsewhere. TP will help if they can.

    Thinking of you and sending you warm wishes for a better future.
  18. ellie 123

    ellie 123 Registered User

    May 25, 2006
    Hi VCB (sorry just saving on the typing)

    If you thought I was in a bad way then have you read tonight's thread - I totally lost it. Can joke about it now but the only thing that enabled me to do that was the immediate support I got from everyone on TP.

    It was a real cry for help and they were there. I hope you find that help and support here too.

    I hear what Nell is saying but like you I just wish they'd be up front and say nope, can't do that. Instead they leave you hanging on in hope or intimate that something can be done and then totally destroy you when they come back with pursed lips and that sigh. You know immediately that you've no chance. This I find hard to deal with because if they'd been up front in the beginning I'd know where I stood. Does that make sense, I do tend to ramble when I'm tired which is usually all the time!

    Hope to hear from you soon.

  19. Doreen99

    Doreen99 Registered User

    Jan 12, 2008
    I've got all this to come - seeing a Social Worker, etc, I mean. I must say I also would find a straightforward, immediate "It's not possible" to having my hopes raised then dashed again. I think I got so down with coping with my ma-in-law because the Doctor kept trying different meds to help her settle at night and none of them worked. Each time, I thought, "This one will work" and then it didn't.

    If I end up going through the same thing with the Social Worker, it's going to be very tough to cope with. But forewarned is forearmed, as they say.

    I just hope the OP's friend will be able to impress upon the Social Worker how much help is needed. Sometimes an advocate can be more forceful and persuasive than the person who actually needs the help.
  20. Thanks For That

    OK, you've had sympthy - now is time for tough talk! said someone.I'm sorry but i don't know what that means. Feels like a smack in theface to me.have had the tough talk for years now, and am like soemone else i read today sending letters left right and crntre, and phoning and asking why , when , where. So am doing all i can at the moment.

    When I said ""i'll see what i can do." Which means usualy i won't try to do anything, and i can't see anyway because i can't be bothered to make the effort to look." .... i was quoting the socialworker and myreaction to her- not me, not me, i wasn't meaning that i can't be botherd to make an effort, cos i can and do and wjll stillcontinue to do. i wasn't meaning that i was so depressed that i cant be bothered. i may be dpressed, so must be we alll sometimes.

    I am no experienced at this web, so cannnot open upand revele all so pleese give me timne to get used to the websight, so that i can just take freom it what i need at the moment. when i asked what is thisthing you alll call support, i didn't just mean support here on alz websight, but when i am told - i am a support worker [- it makes me wonder what they mean by support, so sorry if i have not esplained myself so far. I will on day be able to dothat.

    Ellie, i have found your thread today, and i know that you have sense of humour liek mine, and i also wish they wd just tell the truth. I listened today to radio 4 woman's hour and the program at 12 oclock and i thought what a waste of time they were, just let ellie and me tell htem what we want which is honesty and truth and decent talk.

    Doreen - thats how i feel too - just tell us the truth. tell us if yo can't do anything to support us to give us whatever we need when we need it. i can't be doign with the rubbishtalk, the lies, the promisses, the ... "i'll see what i can do".

    my friend today did phone socialworker and give her a large bit of my thinkingin, so just wait and see, maybe one day we will move farward.

    ellie please call me VCB it is my initials!

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