we(meaning me and my wife) are now into 9 years of this illness,..

Discussion in 'Younger people with dementia and their carers' started by icare2, Apr 28, 2009.

  1. icare2

    icare2 Registered User

    Jun 18, 2006
    I cant say this strongly enuff,i have said this before, the most important person to have on your side !!, is an experienced local social worker !!! For this illness....

    As without a social worker you cannot get anything going,as they are the people that start the ball rolling for anything !!! Thats available for this illness !!!....

    I get help 7 days a week, from 10 am till 6 pm,thats because i refused to let my wife jane !! Go intoo a care home(hopeless places) as they are only run as a commercial profit making!! Companys, well thats ok!! But not for me !!..

    Thankfully we still have my wife at home, it is hard work, but worth it !!!!!!!!
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    #2 Brucie, Apr 28, 2009
    Last edited: Apr 28, 2009
    Hi icare2

    congratulations for your having been able to keep your wife at home for so long.

    It was about the ten year point for us that things changed, and we are now 18 years into our own journey.

    Everyone has a different circumstance and experience, and need, so no one journey will fit for everyone.

    We had no social worker of any real value, and that must make a difference. Jan was young onset and nobody knew how to cope with that, in those days.

    your experience has clearly been very different from mine. Care homes, at least in my experience, vary greatly, of course.

    The one where Jan has lived for eight years is certainly not a hopeless place, and profit making is not true in that case.

    I think the condition of the patient mostly determines how care may best be rendered, and only 24 hour, clock round, one to one care has been able to care adequately for my Jan. That is only available where she lives now.

    It is good to celebrate what you have achieved, but it is always best to talk with opinions from personal experience, and if you have personal experience of Jane being in a local home for any period, then perhaps those in your locality may simply be lacking. General slagging off of care homes based on - well, nothing really - isn't terribly helpful.
  3. connie

    connie Registered User

    Mar 7, 2004
    Hi, I admire you for caring for your wife at home, albeit with help from 10 - 6 pm.

    As we were self funding we had no SW in the begining, experienced or otherwise, but we managed.

    However day care services, when they started, worked fine for Lionel. Things started to go horribly wrong when his condition deteriated to the point where he needed 3-1 care.

    We found an excellent home, one where I have even stayed myself after my op. Nothing is black and white in this world. We can only quote our own experiences and not make sweeping judgements.
  4. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Icare2
    glad that you are managing to keep your wife at home.
    I too did manage for 13 years but not without a long battle with SS.
    I agree a really good ,caring SW can be the answer.
  5. TinaT

    TinaT Registered User

    Sep 27, 2006
    My husband's care home is run by the Local Authority and not for profit. I visited many homes in and around my area before settling on the home he is now in. As Brucie says, the standards varied so greatly that it would be impossible to give a blanket condemnation of them all. I did find places where never in a million years would I allow my husband to reside there.

    A lot of care and thought has to go into getting the right one for your particular circumstances and of course, having to admit that the person you love needs to be cared for there, is heartbreaking enough. It is usually a last resort and when the carer or carers are at complete breaking point that a care home is left as the only option.

    I am happy and satisfied that in his present home, my husband is getting the care he needs on a steady and consistent basis. I certainly am still a 'hands on carer' and haven't abandoned him in any way whatsoever! In fact because I can get a night's rest, I am much more patient, loving and caring than I could ever be if I had full 24/7 care. I'm sure I spend as much time, devotion, love and energy with my husband as anyone else who is a carer!

    You are extremely lucky to have such help in your own home and I'm sure you still find it hard. What is best for one person with Dementia is just that. Best for that one person. Dementia behaviour varies so much from person to person and their needs vary so much from person to person.

    I'm very glad that you are managing to care at home. But please don't put such 'blanket statements' out regarding care homes. Not all are run for profit, not all are 'hopeless'. My husband's care home has given him as good a care as I can give, and with the added benefit of him not being as 'isolated' as he was at home. There are sing along evenings, and many activities which the staff work hard at to keep residents active, fit and mentally stimulated.

  6. TyJane

    TyJane Registered User

    Aug 19, 2006
    9 years of this illness

    Hi Care2


  7. 1948NHSBaby

    1948NHSBaby Registered User

    Feb 18, 2009
    Congratulations from me too icare2, is the help you are getting fully funded continuing care from the nhs?
    Wonderful that you have an experienced local social worker, 'experienced' being the key word, as you explained, the understanding of the disease is sorely lacking within the professional community on the groundforce, my opinion and experience.
  8. sadness

    sadness Registered User

    Mar 7, 2009
    chatham kent
    hi brucie its sadness just want to say that i agree with your reply concerning care homes .i worked in one for three an a half years working with people with dementia and i treated them with respect and dignity .we all go to work for one reason but at the end of the day if we cant trust our loved ones to these caring people who can we trust.
  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi 1948 NHSbaby
    I cannot agree that experience is the key word,experience is of no use unless one knows how to use it ,coupled with caring.
    I have said before thay we did have a caring, experienced SW who fought our corner until my wife died.

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