Question about the benefits of forums

Discussion in 'Researchers, students and professionals' started by Val_cpe, Jun 4, 2006.

  1. Val_cpe

    Val_cpe Registered User

    Jun 4, 2006

    I am currently studying for a Master's degree and doing some research into the different services available for people with Alzheimer's and their carers.

    In doing my research I have come across the Talking Point and I am interested in the benefits that this service provides and why people use it. I would also be interested in how you learnt of this forum.

    I would be very grateful if anybody could let me know about their own experience, this would be of great help to my research.

    Thank you,

  2. Kayla

    Kayla Registered User

    May 14, 2006
    Benefits of forums

    Hi Val,
    As far as i can see there are very few services to support dementia patients and their families. When I asked the Social Services for help, they were only interested in physical disabilities and couldn't even understand why being telephoned in the middle of the night to be asked the time, or at 11pm on a Friday to be told that "I'm all ready to go to Church" might possibly be a problem. I think I actually knew more than the Social Worker about certain things and I gave her a contact number she needed. When Mum wanted to go into a Care Home, I didn't bother to tell SS as Mum was self-funding anyway.
    The NHS are not very helpful either, because they don't look at a person as a whole. You have to keep seeing different doctors for different parts of the body, as if they have no connection with each other.
    My Mum went dramatically downhill after a fall and hip replacement. The hospital kept her lying in bed for 48 hours before they did the operation and she has rheumatoid arthritis. She was so stiff and in so much pain that she never got back on her feet. Nobody called her by her name because names over beds are banned due to the "Data protection Act". Hospital visiting was very restricted to afternoon and evening, which was inconvenient for me as I work from 3.30pm onwards. I could have helped at lunchtimes or fitted in visits around work much easier in the mornings. Some patients had crowds of visitors around the bed, which Mum found very distressing, because I'm an only child and even visiting every day, she had many times without any visitors.
    Hospital completely confused Mum and she lost so much weight that she became really weak.
    This bulletin board has been the first opportunity I've had to learn about Vascular Dementia and understand how it affects people. It is reassuring to know that others have experienced similar problems and listen to suggestions that might help. It is also therapeutic to offer help to others. The trouble is that Dementia is a taboo subject and no one wants to know, once they realise what is wrong. Cancer and heart disease patients seem to receive a lot of sympathy and support, but there is a lack of research and interest in Dementia. I think that carers and families of dementia patients should be kept well informed and offered support-even a telepone helpline would be better than nothing. TP is part of a service offered by a charity, not the NHS. The NHS could do a lot better!
  3. Bets

    Bets Registered User

    Aug 11, 2005
    South-East London, UK
    #3 Bets, Jun 6, 2006
    Last edited: Jun 6, 2006
    Hi Val,

    I found this forum when I was visiting the Alzheimer's Society website looking for some information. I have found it an absolutely godsend.

    When my husband was diagnosed with vascular dementia in January, 2002, (although only reluctantly as the consultant didn't understand why I felt the need to have a diagnosis!) the unspoken attitude was "He has dementia, go home and get on with it".

    Friends and family are supportive and sympathetic but only someone who lives with someone with dementia can really know what it is like and this forum provides genuine empathy from people who, although in every other respect complete strangers, can really relate to what you are going through. That, for most if not all of us, is what makes TP so special.

  4. Lila13

    Lila13 Registered User

    Feb 24, 2006
    To start with I came in here for support, as I was trying to look after my mother in her home, and also for advice while looking at retirement homes and nursing homes near me, just hoping we might find somewhere suitable for her and that she would agree to move there.

    I was and am horrified by the apparent ignorance of doctors, nurses and social workers we've had to deal with, and their lack of sympathy.

    Now I come in here just as an excuse to go on talking about my mother, and my experiences of the last few months. Eventually I expect I'll have to get out of here and "move on".

  5. Lynne

    Lynne Registered User

    Jun 3, 2005
    #5 Lynne, Jun 8, 2006
    Last edited: Jun 8, 2006
    Hi Val

    Medics, nurses and care assistants only spend an hour or so (sometimes just a MINUTE or so) with dementia sufferers. They seem to have little or no insight of the effect dementia has upon the whole family & home situation, however 'good' they are (until WE present ourselves at the surgery, suffering from stress & depression etc.)

    Talking point contributors often spend the 'early stages' running themselves ragged trying to understand what dementia is all about and meet the needs of their own family (spouse + children) AND the needs of the person suffering with dementia. If we're 'lucky' (?) we live quite near Mum (*or whoever) and if not we're consumed by guilt because we're "not doing enough", or in some cases because the AD sufferer resents attempts to help, is in denial of their problem etc. We may have other family members to share caring duties with, or we may be sole carers. We may have other family members who are singularly UNhelpful and do more harm than good, by being obstructive, uncaring, in denial or just plain argumentative at a time when we need it least. If the GP is involved yet (& they frequently aren't) they may, or may NOT (thankyou, N.I.C.E.) be able to prescribe meds. to slow down the memory loss & relieve anxiety.

    Once sufferers are past the early stages, and actually need help with day to day tasks, living arrangements are frequently altered so that Mum (*) comes to live with one of her grown up children & their family. This is a HUGE adjustment for everyone to make - in physical, mental & emotional terms - and often the AD sufferer appears to go downhill fast because they are trying (& failing) to learn to cope with their new situation. (In my case circumstances permitted me to go to live with her, but this still caused her difficulties, even though she is still in her own house) Again, the carer is often consumed by guilt because 'the plan' didn't work, but seemed to be the only viable option and now it has turned out not to be an improvement. Worse, now everyone is suffering to some extent. The carer may have given up (or lost) their job for this, to take up part-time work to enable them to devote more time to 'caring'. Ergo, reduced income which £40 per week (if they claim it) does NOT cover. Family relationships can become strained to breaking point. More guilt.

    I can't comment from personal experience past this stage, but you have only to read some of the despairing threads on Talking Point to start forming a picture of why we need each other here, and I suggest you do so if you are serious about your research.

    There is nowhere else which allows one to question "Why this", "How do I ... (deal with that)", "What the Hell can I do about ..." speak freely, vent some of the stress and pain and anger, and get straight, honest, understanding answers from other people who know what REALLY goes on, and who care enough to share their acquired wisdom & experience in dealing with this awful disease and the way it tortures & crucifies us. And I don't just mean "There there dear, you have a good cry" We can and do tell each other if we think someone's got it wrong, and try to put different ways of looking at (& dealing with) situations. We exchange views & opinions, discuss differences, and (perhaps most important of all) know that here we can say unthinkable and unsayable things which we dare not express anywhere else, because of the constraints of convention. This is an unspeakably hellish disease for all involved, & unspeakable, bitter thoughts need to escape somewhere, or we shall be consumed by them.

    I could go on at length (believe me, this IS the short version!) but I'll leave it at that for now.

    Good luck with your research & degree. If your thesis on this subject is good, please copy it to Nada at Talking Point, and the Alzheimer's Society, AND the National Institute for Clinical Excellence (N.I.C.E.), AND the Secretary of State for Health.
  6. Val_cpe

    Val_cpe Registered User

    Jun 4, 2006

    I would like to thank everybody who has replied so far to my question about the benefits of forums. The responses have been really eye opening for me. If anybody would like to say anymore I would be very grateful.

    Thank you,


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