New Lewy Body Dementia

Discussion in 'I have a partner with dementia' started by Larker, Mar 1, 2019.

  1. Larker

    Larker Registered User

    Mar 1, 2019
    20
    My husband has recently been diagnosed with lewy Body Dementia. I look forward to speaking to people in the same situation
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,898
    N Ireland
    Hello @Larker, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    https://www.alzheimers.org.uk/find-support-near-you

    You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  3. Larker

    Larker Registered User

    Mar 1, 2019
    20
    Thank you. I am feeling very lonely tonight. My husband doesnt know me tonight, doesnt think he lives here and doesnt know we are married. I just dont know what to do.
     
  4. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,377
    leicester
    Hello @Larker it’s so difficult when our partners don’t recognise us, it didn’t happen many times to me but it was heartbreaking when it did.
    I hope you have some close support at this difficult time
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    Hello @Larker and welcome to Talking Point.

    Dementia symptoms are always worse at night. Does he not want you to sleep in your bed? Can you persuade him to stay there for the night (its so dark and cold and the buses arnt running now ;)) and perhaps you might take him home in the morning. Hopefully by then he will know where he is and who you are.
     
  6. Larker

    Larker Registered User

    Mar 1, 2019
    20
    Thank you. I sometimes think we have had the worst day and things will never be the same again. The next day he remembers me and we are fine again. Tonight it feels worse then ever. He has been confused all evening and it feels different. I just hope and pray that tomorrow he will know me again.
     
  7. Larker

    Larker Registered User

    Mar 1, 2019
    20
    Thank you. Yes the evenings are worse. I have shown him our bed and he has got into it but I dont feel I can sleep in it as I am a stranger. I am going to wait until he is asleep. I feel so sad.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    ((((((((((((((((((((((((((hugs)))))))))))))))))
    I hope he is asleep sooon
     
  9. marionq

    marionq Registered User

    Apr 24, 2013
    5,793
    Female
    Scotland
    @Larker you must be feeling miserable. I hope tomorrow things have improved and you can begin to see a solution.
     
  10. Larker

    Larker Registered User

    Mar 1, 2019
    20
    Thank you everyone. That was my first visit to the Forum. I was feeling absolutely desperate and alone. The next day was better. He remembered some of his confused thoughts. Every day is different and I know I must treasure the good times.
     
  11. stead45

    stead45 New member

    Apr 4, 2019
    1
    how long has your OH had his dementia mine has not been confirmed but its looking like Lewy Body s with Parkinson ,he is the same at night but then has REM when he dose go to bed its so hard i wish someone could tell me how long hate myself at times for asking
     
  12. nestle

    nestle Registered User

    Jul 22, 2016
    66
    Female
    Southwest but Yorkie by birth
    My Partner and I have been living alongside Lewy Body dementia for 4 years now . It is such a mountain to climb with so much to learn I feel for you . It is the fluctuations that are difficult because you never know when they are coming and It's so easy to be tripped up by it all . I try to remember if we wait quietly and calmly his mind will clear . To try to focus on what he can do not what he can't . To rest when he needs to rest and be active when he can be. I sometimes think it's a real lesson in living in the moment and sometimes I think it is a kind of torture .
    I hope you might be able to get some support from a local carers centre if you have one . I find you have to dig around to get the help you need. I wish you well and thinking of you .
     
  13. Larker

    Larker Registered User

    Mar 1, 2019
    20
    Hi there
    It is lovely to hear from people going through the same as us. LBD symptoms are so unique that it is difficult for some people to understand. Family are not around all the time so have no idea what happens. I started noticed confusion and disorientation about 6 years ago but my husband refused to admit there was a problem. He eventually agreed to see the Dr about 18 months ago. At first he was diagnosed with a severe B12 deficiency and boosted with B12 injections. When this did not solve his problems he was sent for a CT scan and later for a MRI scan. He was formally diagnosed in January 2019. Since then we have been given support and information from our memory clinic and he is now on medication to hopefully reduce hallucinations and delusions.
    All the best to you and your husband and I hope we can share experiences again soon.
     
  14. Larker

    Larker Registered User

    Mar 1, 2019
    20
    Hi there. Your post is so welcome and I can feel myself agreeing with what you are saying. My husband has LBD each minute can be different. We can be having a normal conversation and then he will ask me a silly question. It makes me jump. I hate the nights when he doesnt remember me but I just wait for the morning when he is himself again. All the best to you.
     
  15. nestle

    nestle Registered User

    Jul 22, 2016
    66
    Female
    Southwest but Yorkie by birth
    That's the thing isn't it , it takes a while to adjust to the fluctuations . I really feel for my partner , to live in a world where nothing makes sense and you are deprived of all the usual ways of making sense must be so frightening one of the reasons my partner struggles is because he has so much difficulty with language and the cruelty of it he knows it . So sad
     
  16. Larker

    Larker Registered User

    Mar 1, 2019
    20
    How's things. Just thought I would ask as this disease is a lonely place. Only other carers can understand. Friends will say to me "oh he seems ok today" Ahhh they dont know that we have been up all night, he has got dressed twice during the night etc. Take care
     
  17. nestle

    nestle Registered User

    Jul 22, 2016
    66
    Female
    Southwest but Yorkie by birth
    Hello Larker, sorry not logged on for quite a while, very sad to say my person with LBD moved to care home in June. How goes it with you ? x
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    724
    Hi lovely folks on the LBD thread, I’m hoping on Wednesday to get a better diagnosis of Mums dementia. Have spoken to the clinician who originally saw Mum in 2014, & have sent a list of concerns & issues over. Filled in the appointment assessment forms & hopefully a better understanding & possible diagnosis of Mums condition will be helpful In arranging her future care.

    Mum is text book LBD but so are many other things...

    I hope you will be able to advise me on each issue as it appears to make this path a little easier for my Mum.
     
  19. nestle

    nestle Registered User

    Jul 22, 2016
    66
    Female
    Southwest but Yorkie by birth
    Thinking of you Desperate of Devon and all those associated with LBD
     

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