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Dementia with Lewy Bodies - help for Mum and Dad

Discussion in 'ARCHIVE FORUM: Support discussions' started by gillybean, Jan 3, 2008.

  1. gillybean

    gillybean Registered User

    Jan 17, 2007
    420
    Hi all

    Dad was diagnosed about a year ago, is on Aricept and last September was diagnosed as being depressed and put on anti-depresants (not sure which) problem is the last few weeks he has been prone to falling and tripping. I think this is partly due to the way he shuffles along now but our worry is he becomes disorientated in the night and may fall down the stairs.He is due a review next wek with his consultant. Trouble is Mum can't leve him alone now and we are waiting for the referal to social services to come thru with help,when his CPN referred him about 2 months ago. I have contacted local sitting services too but is this the shape of things to come, it's so sad to see his deteriorate.

    Is there anyone else out there with a relative with DLB who suffers the same symptoms including the hallucinations of children and animals?
     
  2. inkypink

    inkypink Registered User

    Jan 2, 2008
    15
    hull,UK
    hi gilly

    i'm a senior care worker in an EMI home.we had a resident who sufferered with lewy body & he had constant hallucinations where he could be seen picking thing out of the air that he said were floating about.he was quite aware of his surroundings though & could have a conversation with you.your fathers unsteadyness & loss of balance is a symptom of lb. it can be miss diagnosed at times for parkinsons disease as the symptoms are similair.
    i do hope you get the help for your father you so rightly need & best wishes to you.
    debbie
     
  3. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    Lewy Bodies

    Hi my husband has this and was dignosed 2 years ago hes 71 he has had many falls broke his coller bone has a tendency to fall back wards never farwards has gone down the stairs ,
    many hallucinations ,hes very awkward and can be very very hard to live with we have a daughter she is now nearly 19 its been a very hard journey he calls me all the time , hates me on the phone tells me off like a child i am 17 years younger than him but not a child ,hes now got to where hes lost most of his confidance ,he sees us when we are not there ,yet at times
    be normal in his conversation but he doesnt take a lot in i think he does then no he didnt understand all i can say is its hard im working full time as well and i dont realy know what to do, our daughter is still studing A Levels shes resitting because things where so bad last year ,belive me they are not good this year ,im learning about Lewy Bodies as i live with it its cruel,we were a little family that just got on with our lives didnt need any one much ,now im talking to it feels like the world nothing is private it cant be we now need help and i hate it im so sorry i have gone on a rant i didnt mean to ,
    there is nothing else that can be done with medicans now hes on the highest does we went to the hospital in November the next thing is how long can i go on careing
    before we need to look at full time care for him,and as im finding out that brings a new set of problems ,
    but Lewy Bodies im told efects all parts of the brain ,and is hard to control with drugs ,
     
  4. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    all the very best Linda A
     
  5. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    My husband also has Lewy Body Disease as have most of the patients on the Elderly Mental Health ward he is currently on. It is a very difficult disease to deal with as it has Parkinson type symptoms and dementia type symptoms. There are problems with movement and spatial awareness e.g: most of the men on the ward suffering from LBD shuffle their feet and have balance problems. They also show limb agitation, constant leg/arm movements, rubbing of hands together and pace up and down for hours on end. They 'pluck' imaginary things from the air or from the floor and have great difficulties with spatial awareness such as reaching out to pick up a cup of tea or biscuits from a plate. Hallucinations also feature in LBD. If you Google into your computer the words - Lewy Body Disease - I'm sure you will come up with some useful information.

    One more thing, because of the movement problems and difficulties in walking, you should be able to claim the Higher Rate mobility component in the Disability Living/Attendance Allowance benefits from DWP. Don't let them fob you off as they tried to do when I claimed for my husband!

    You need to get all the help from Social Services you can in trying to deal with this horrible disease. My very best wishes to you and your family. xx TinaT
     
  6. gillybean

    gillybean Registered User

    Jan 17, 2007
    420
    Thanks for all your help.

    I have googled and to be honest what I'm finding makes me worry about the future so much. It's very bleak and I don't tell my Mum everything as it would worry her more.

    Dad's becoming very difficult to be with, for example he can't go to the barbers he has been to since he was a lad, it's hard to give up that independance I know but he can't go accross the city on 2 bus rides alone any longer so I arranged for a mobile hairdresser (I found thru help the aged) he's now refusing to see her which is very embarassing as he can be so very difficult. They need work doing on their house but each little thing becomes a major problem to them and they can't face it. I need to sort out their heating, insulation, bathroom, electrics but they can't face the upheaval of it all so I don't know where to go from here. It's a struggle which I can only see getting worse.:(
     
  7. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    Lewy Bodies

    You must take one day at a time that much i do know my sister said to me the other day you can only go from A-B not A-Z and shes so right,
    One thing with Lewys is you cant tell realy how its going to go that is one of the things about it ,my husband goes off i call it at about 4pm he sees things im so used to it now my older daught says im to used to it but please one day at a time A_B all the best
     
  8. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    Hello all,

    As with all Dementia's it is very hard to cope with at times, but like everyone else who has Dementia with Lewy Bodies, I learnt to take each and every day as it comes. Some days are brilliant and some rubbish, but I think we have to try to get the best we can out of a bad situation.
    The hallucinations and bad Night mares are one of the worst effects of this disease, and I have found it easier to sleep during the day, but never everyone can or wants to do this as it distrupts daily life.

    Best Wishes

    Ken
     
  9. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    With reference to a post above. Whilst there is a Mobility component in Disability Allowance, there is not one in Attendance Allowance. Attendance Allowance does cover people with mobility problems and such problems do help you qualify for AA, but there is no specific component for it. Further, mobility outside the home is not (as far as I know) considered relevent to qualifying for Attendance Allowance.

    Also, there are only two rates of Attendance Allowance, and they are based on the time of day you need to be "attended". You only qualify for the higher rate if you need help during the night (defined as being 11pm to 6am I think). It doesn't matter whether you minimally qualify or have very severe problems - if they don't involve help at night, you don't qualify for the higher rate.

    There are lots of rules about what qualifies one for AA and what does not, but the form doesn't make any mention of them. You just have to be as descriptive as possible, and the person making the decision applies the rules to your described problems. For example "supervision throughout the day" means a certain number of minutes spread over a certain number of hours - but they certainly don't tell you that, presumably because if they did everyone would just say that's what they got!

    DLA is for people under 65. AA replaces it entirely for people over 65. Although, I think if you qualify for any DLA component before 65, it continues after that, until 75..?

    AA is "all or nothing". You either get it or you don't. Other than the two rates, there are not components as with DLA.
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    I think to get the higher rate of AA it has to be day AND night - if it was just night but not day it would be lower rate.
     
  11. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Thanks for the very well explained difference between DLA and AA - As I claimed before my husband was aged 65 I was not aware that the mobility component was not a factor if you claim after the age of 65. Wonder why not??? Is it another example of age discrimination? Do you not need extra financial help if you are over 65 and unable to walk outside the home without having to rely on others? After all, most of the AA would go on getting much needed help within the home I would have thought.

    Another strange thing I fail to understand is that Carer's allowance cannot be paid if you are already in receipt of a pension. It is important to apply for it even though you will not get the monetary help as it will still give you entitlement to other benefits related to Carers Allowance. What a wierd and wonderful world we enter when we apply for help from Government Bodies!!!

    The other advice from TP posters saying take one day at a time is also spot on. My husband can change behaviour within a twinkling of an eye, especially in the middle/late afternoon as other TP posters have mentioned.

    One gift the disease has bestowed on me is the appreciation of the minute I am living in - now, at this moment in time. I value so much the few hours I can still sometimes have with my lovely husband when the disease fades temporarily into the background. I treasure them greatly for what they are, little oasis of calm and happiness in the middle of this turbulent and destructive disease.

    The sadness of learning about the disease was tremendous for me too but I found it helped me to understand that none of my husband's strange and frightening behaviour was as a result of any deliberate mischief on his part. Sometimes to be forewarned is to be forearmed but not everyone feels the same about knowing the progression of this disease. I needed the understanding that the knowledge brought. Other people are just naturally understanding and kind natured and do not want or need to know. If it had been my dad who was the sufferer and not my husband, I would never have let my mother know the full extent of the illness, but, just as you are doing, support them both in every way I could.

    My love to you on this journey. xx TinaT
     
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    I think "they" would "claim" that if you're over 65 that a) you get concessionary rates on public transport (or is it free now) and b) you can expect to find it difficult to get around if you're older. Bah humbug say I. Of course the real reason is that eventually, if you live long enough, everyone would be entitled to the mobility component if it was offered so it all comes down to money.

    Cynically yours
     
  13. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    You hit the nail on the head Jenniferpa - money, money money! However when I see a man aged 65 totally incapacitated and I see his neighbours aged 75 or even 85 who still have the good fortune of being able to still drive their car, catch the bus etc., it doesn't seem fair or just that because you have reached your 65th birthday you are no longer given this extra financial help xx TinaT
     
  14. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Jilly bean ... my mum was given a diagnosis of 'Alz with Lewy bodies' ..... we've had some awful spells when she was obsessed with animals .... usually not seen but insistent they were in the house - and most recently in her central heating system .... a few weeks later - you wouldn't believe there was anything physically or mentally wrong with her - we just await the next 'episode' ...... from all I've learnt here DLB accounts for the wild fluctuation between lucidity and otherwise ..... it's a tough call - never knowing what to expect from one day to the next ...... one minute in decline...... the next ??????

    You have to learn to ride the rollercoaster with them ...............

    Karen, x
     
  15. gillybean

    gillybean Registered User

    Jan 17, 2007
    420
    Thanks for all your useful comments and support. It's comforting to know that we are not alone in this situation. I just feel sad as my Mum and Dad were both carers for their disabled son who until recently lived with them until it became apparent that the situation could not go on. So Mum and Dad have not really had a 'retirement' as such when I compare my inlaws who have been on cruises and trips round the world I just feel they've missed out somehow.And so it goes on, sorry to moan but sometimes life can be cruel, my Dad was such a gentle mild mannered man and it just seems so unfair this happens to them.
     

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