1. worriedhubby

    worriedhubby Registered User

    Oct 27, 2014
    My wife was diagnosed with lewy body dementia in March 2015. Our 16 year old daughter was killed by her boyfriend and they had a 3 year old little girl. Our granddaughter stayed with us after our daughter died. My wife keeps on calling our granddaughter by our daughter's name and she is getting worse and worse. Christmas Day she evilly said to our granddaughter' I wished your mum was still alive and that you had never been born as your evil dad wouldn't have murdered her.

    Our poor granddaughter is now 20 years old and works full time.

    My sister in law took my wife out for the day on her own on Boxing Day and me and my granddaughter had a lovely day together. We watched some films and talked. We haven't done that in years.

    As soon as my wife was back our granddaughter took to her room again. It is heartbreaking as I do not know what to do about it.

    We need some help. Our GP is good and we have a dementia nurse who visits us regularly
  2. 1mindy

    1mindy Registered User

    Jul 21, 2015
    My only advice to you is to get social services and the community mental health team galvanised.Phone them tell them how desperate you are they should get moving on helping with support. This is what I did and they have been outstanding. I am just organising a "carer" for my husband two half days a week so I can get so.me me time. Maybe this is something you could consider to give yourself time with your grand daughter. My oh does not think that he has a problem so I am introducing the carer as a friend of mine come to help with the house work.It's taken me a long time to realise I must do these things to keep me well. I trust your wife gets AA to help with the cost of care. Wishing you all the very best in difficult times.
  3. Again and Again

    Again and Again Registered User

    Dec 22, 2015
    It's hard to ignore some comments made by people with dementia because sometimes, for a second or two, we take them the same way we would if anybody else had said them.

    The thing is they are coming from a very confused mind and as such we have to chose to let them pass, I'm sure talking with your granddaughter about your wife's condition and facing the future problems together will give you both the strength needed to guide you through whatever the future holds.
  4. worriedhubby

    worriedhubby Registered User

    Oct 27, 2014
    What is AA?

    We only receive our state pensions.

    We don't have a social worker. We only have the dementia nurse and she is about as much use as a chocolate teapot.

    We have a dog, we have had her for 8 years and all she says is to get rid of her. She came just before Christmas and said it again, I told her she is well cared for and walked every day. I am not getting rid of my dog.
  5. Sue J

    Sue J Registered User

    Dec 9, 2009
    AA is attendance allowance which you should be able to apply for.

    Who on earth suggested you get rid of the dog? the dementia nurse?:confused::(

    Can your GP surgery point you in the direction of local support services in your area maybe?
  6. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    Sorry to read of your troubles worriedhubby.

    I assume AA means Attendance Allowance, your local citizens advice could tell you whether you are entitled, ours even helped with application forms. Your dementia nurse sounds like a right eejit, I would change surgery and call your local Social Services for a carers assessment for yourself and a care needs assessment for your wife. We had to wait a month or two, but we got a got social worker who helped with little things like alarms and an emergency call button. It was Social Services at the hospital who arranged a care package, so if you don't have that then your local council would be a good place to ask.

    Hope any of that is helpful. Rob
  7. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    I am outraged on your behalf that you were advised to get rid of your dog, worried hubby, and you should really have been told about Attendance Allowance. I'm glad Cat has posted a link for info and the forms, but they are somewhat horrendous and you really need to get some help completing them as the wording is very important.

    Can you at least ask the dementia nurse what support services there are in your area? Carer's organisations can be very helpful if there is one. This is such a sad situation for you and your granddaughter, you really need help and advice. Good luck, and do keep posting on here as I'm sure you'll find it very helpful.
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    I think you need to get rid of the person who told you to get rid of the dog.......definitely not the dog :)

    Here is a bit of a check list Age UK will send someone to help you with the forms for Attendance Allowance if you ask - they are tricky, I help lots of people with them because it is hard to do them without support

    If you have an Admiral Nurse in your area (you will need to google it) then lots of people have said how helpful they are.

    You can phone Social Services Adult Care Duty Desk and ask for an assessment if there have been no recommendations from the Unit - services like carers visiting to help with the daily routine/personal care or day care that should be an option - a day centre where your OH can go for lunch and activities. As well as our social services centre we also have Crossroads Day Centre where people can go for up to 3 days

    It is worth googling Dementia activities + your area to see what is going on. There is probably a fair bit but you need to search for it. Some care homes also do 'day care' which can be useful but I would try the day centres first

    You can also ask social services for a carers assessment - this will give you a break and give you some 'free' hours of help possibly. it might seem early days to be thinking of a 'break' but a few hours here and there is a good idea from as early on as you can. Everyone should have a carers assessment - it makes a big difference and helps people carry on caring for longer.

    If you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that OH needs (not the help that he gets but what he NEEDS). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year 24 hours a day. To talk to someone, just call 0800 169 2081.

    I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off to go and find out what help there is in your area over a cup of coffee - lots of friendship and support face to face and everyone in the same boat.

    If there are issues with incontinence all areas have a continence service - you will need to look up your Trust or google your area plus Continence Service. The continence nurses we have had have been wonderful and pads are supplied free by the NHS.

    The Dementia helpline is a useful number to have

    Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday

    Come back and ask if there is anything you need to know - someone will know or can give practical tips or has had experience of it.
  9. Jinx

    Jinx Registered User

    Mar 13, 2014
    The only thing I would add is to perhaps try to get your granddaughter to go and see someone at the Alzheimer's Society so that she can discuss her feelings and gain a greater understanding of the illness. Such a sad and difficult situation for you all but as Again and Again has said knowing more about the illness might help your granddaughter to cope better.

    Sent from my iPad using Talking Point
  10. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I thought that too jinx
    The granddaughter must be feeling so confused. She probably hadnt recovered from the trauma of her mums death and now she has to cope with the things that her grandma is saying. Is there anywhere that she could go for councelling
  11. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    Boy oh boy - what a helluva lot you have on your plate. :( As others have said, you need as much help as you can get, and that heartless person who suggested you get rid of your dog, needs to be flushed down a toilet!

    Although the amount of help available often depends on your area, and you may need to initially spend some time on the phone, you are entitled to help, both in a practical way and financially. If you have any questions, don't hesitate to ask, as there's a wealth of help available on Talking Point. :)

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