1. tedsmum

    tedsmum Registered User

    Jun 28, 2006
    34
    Hi Everyone

    Have posted a couple of times and got some great advice now I need some more.

    My 86 year old father has now got a definate diagnosis of Lewy Body dementia. He was taken into a mental health assessment unit on Thursday last week and he seems to be going downhill fast. He alternates from thinking he is in a funeral parlour. crematorium or a hotel. He doesn't want to eat and is still seeing the imaginary people he was seeing in his own home.

    Can anyone tell me if this particular dementia is more rapid than others and although I know there is no definative answer what can I expect to happen in the future. I just think that only other people in the same situation as me can really give me any answers.

    Thanks for listening

    Christine
     
  2. Helena

    Helena Registered User

    May 24, 2006
    715
    I only wish I knew too
    My Mother is 90 and its either vascular or lewy body and she has gone downhill fast since Xmas

    Technically Lewy body is said to be 5 yrs from diagnosis but i believe the older the patient is the frailer they are and that is the critcal factor

    The LBD group on yahoo groups are helful but they cant give an answer either nor i suspect can the medics
     
  3. Áine

    Áine Registered User

    Hi Christine

    My dad is 87 and diagnosed with Lewy Body. The psychiatrist at the time said that it was likely to have a more rapid decline than other forms of dementia. Unfortunately that's proved true with dad. I remember social services coming round towards the end of last year, and me trying to convince them that there was something wrong with dad and that he needed more home care than 20 minutes in a morning. He was diagnosed in February this year. Now he's unable to walk, has quite a bit of trouble swallowing, finds it hard to talk co-herently at all, doesn't know who I am some of the time. Some of the problem could be that it's been really difficult to sort out what medication to put him on, and he's been badly affected by some of it. But there's a lot of rapid decline too, I'm afraid.

    Whenyou think about it with the assessment centre though - thinking it's a hotel or funeral parlour ....... that's probably less a delusion and more a desperate attempt to make sense of the situation in terms that he can make sense of. My dad spent a lot of time thinking he was on a not very good holiday, or that he was waiting at a rail station of airport. That made sense really - lots of people sitting around waiting.

    sorry it doesn't seem like good news.
     
  4. tedsmum

    tedsmum Registered User

    Jun 28, 2006
    34
    Hi

    Thanks for your help went to see him this evening and he was a little better, still talking about his hallucinations, apparently we just missed the hundred or so boy scouts who just visited him and two people died in a fire in his room during the night luckily the undertakers were there at the time!!
    Think I will have a stiff drink and see what tomorrow brings.
    Thank God for this site!

    Christine
     
  5. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Christine,
    That's the way to do it, one day at a time!
    Love Helen.
     
  6. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    Lewy body dementia

    My husband was diagnosed with lewy body dementia January this year he will be 70 next October,as i have said before its like a roller coster, hes finding the stairs very hard to cope with and he has water works problems on going,
    we need to change the house which means i will have to take a loan out /morgage.we dont have one now,
    i know its hard but what is the outcome what next are we doing the right thing ?so much to know and its worrying me so much,
    we had SS out and i bet we all know what they are like and so slow we can not wait for these things to happen we need to live and work now and 1 year down the road and being means tested,and for a maybe,
    and told where to put a rail up and she was only hear to see after my husbands needs not mine and our 17 year daughters,
    so what do we do next what would you do?
    do all people end up in a home?when will it realy get that bad,
    what is the time scale?all help please linda a
     
  7. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Linda,
    Unfortunately there are no easy answers to your questions. I think that it is often the case that a stage is reached when the right place for care is a Nursing Home. I think you know when that time has come, when you can nolonger give all the care needed, or when it is become too damaging to you and your daughter to continue caring at home. Do you feel that time is approaching Linda?

    What alterations do you need to make to your home? Do you have a toilet downstairs? We were able to move mum and dad downstairs when the stairs became too dangereous. What have SS said; will they help finance the alterations?

    Linda, remember, day by day; if you can explain the changes you think are necessary, others may be able to come up with some ideas.
    Love Helen
     

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