Who else is coping with Lewys Body Disease patient

Discussion in 'ARCHIVE FORUM: Support discussions' started by Helena, May 26, 2006.

  1. Helena

    Helena Registered User

    May 24, 2006
    Anyone else trying to cope with a patient with Lewys Bodys

    It would seem from what I have read that this may be whats wrong with my Mother

    However I have so far seen nothing about how to cope with the wild swings from "normality " into total confusion and incoherence and then back to " normality"

    It would take strong men to drag her into the doctors and i live hours away

    and there is no way whatever she will tolerate social services or anyone else coming into her house
  2. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Helena,
    Can't be of any help, but I know there are several people who have relatives with Lewy Bodies. No doubt they will be in touch soon. Just wanted to say Hiya.
  3. Áine

    Áine Registered User

    Hi Helena

    My dad was diagnosed with Lewy Body Dementia in February this year.

    As far as the swings from 'normality' into incoherence and back again, I'm not sure I coped with them very well before dad went into nh. In fact dad had already gone into what was initially intended as respite care but turned out to be permanent care before he was diagnosed. I would have coped with them better if I'd known he had LBD and that that was typical of it. As it was, I was totally baffled, feeling certain some days that there was something wrong, and then thrown by him being apparently OK the next day/ hour/ minute. That also made it hard with getting help because he'd seem out of his head when I phoned the GP for an appointment, but quite happy and with it once he got to the surgery. For a while I wondered if it was me that was losing it, and feared the GP also thought that :eek:

    Now I know a bit more about it, I've kind of learned to expect the unexpected. Fasten your seatbelt and enjoy the ride. It's less scary of course now he's in permanent care, not the horrendous doubts and worries about his safety.

    Thankfully I've had the advantage that I don't live too far from dad, he has wonderful neighbours, he had home care coming in before he had problems with his memory, and he's been pretty placid in terms of going to the GP when I ask him to.

    Do you think your mother is at risk as a result of her condition? I wonder if it's worth giving the GP a ring and discussing your concerns. It may be that the GP can get to see her on another pretext, and 'just happen' to ask about other concerns. It won't hurt to check out if its a decent GP you're going to be able to work with or not.

    You don't mention either what kind of relationship you have with her etc. But it might be a good idea to look into power of attorney as soon as possible. I just scraped in in time with it with my dad. That's probably important with most people with dementias though ...... not just LBD.

    best wishes

  4. Helena

    Helena Registered User

    May 24, 2006
    An EPD was signed 10 years ago but she kept it !!!!!!!!!!

    Where it is heaven knows and given her following you around and intense suspicion it will be hell trying to find it

    She wont even sign a cheque to pay a 4 month old credit card bill

    She refuses to see her GP and because the DVLA stopped her driving she blames the GP ..............

    Its likely her neighbours are the ones at risk if she blows up the house leaving the gas on

    But like I said on my other thread

    Everyone else in the world is mad but its not her
  5. shauny

    shauny Registered User

    Oct 27, 2005
    north-east england

    Helena, have you sat down and talked to your mum's g.p. about how you are feel about the situation? Shauny
  6. Helena

    Helena Registered User

    May 24, 2006
    But just what will he / can he do about the situation

    Between the swings from confusion to "normality" she has some inner absolute determination

    She will not allow anyone into the house
    Theres no way she will have social services
    and come hell or high water she wont go into a home

    I understand that unless the patient is either sectioned or agrees to go voluntarily they cant be forced to do anything
  7. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    My mum has dementia, which is probably Lewy Bodies, and has been in residential care for 18 months now. We were initially very reluctant to let her go into a home and the social worker did say that if we didn't agree then sectioning was an option, which I found very shocking at the time. It never came to that because my dad died soon afterwards and we had to let her go into a home.
  8. doris

    doris Registered User

    Oct 3, 2005
    Hi Everone
    i haven't been on for a while but am still reading.
    I look after my friend who was diagnoses with LBD after alot of nagging and paying to go private.It is a rollercoaster- no two days the same-some days nothing wrong, other days hallucinations, and some days in a long sleep.
    The meds that my friend is on have stablized the symptoms and apart from the fews nights of no sleep, things aren't too bad at the moment.
    I don't know the course of this disease ,if there is one ,so the future is uncertain but i will keep him at home as long as i can physicly handle him (with the help of carers) and as long as he knows who i am.
    It can be very depresing at times but tomorrow is another day.
  9. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Doris,
    Good to hear from you again, I'm pleased that things aren't too bad for you at the moment.
    Post when you want.
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    #10 Margarita, Jun 6, 2006
    Last edited: Jun 6, 2006

    My mum has AD so can’t help with advice on LBD , only that I meet a sister of a patient at mum respite home that had LBD & she was only 47 , but was quite advance due to late deioniser ,one thing that did happen her sister keep eating a lot & it got out of control she got very big

    Can any of your family not remember what
    Lawyer they went to see 10 years ago with your mum to sight the
    Endearing power of attorney ?
    as the lawyer would still have a copy I think they keep the original of it. & gave me the copy , my lawyer still has it
  11. Helena

    Helena Registered User

    May 24, 2006
    The EPA was not prepared by a lawyer .......it was done simply using Law Society paperwork you could buy at the time

    You can download the pages now off the web

    My Mother has always been very secretive about money etc and none of us have a clue as to what she is/has been up to

    I am beginning to get all kinds of messages from neighbours etc about her and roller coaster sums up the change from day to day

    You simply do not know where you are with her
    She should not be living alone but unless she is sectioned theres no way she will go into a home

    If they do ever section her do not even suggest any family member is present because all hell will break loose

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