1. mollie1

    mollie1 Registered User

    Nov 20, 2007
    12
    Newcastle
    Hi Im a new member I havent used a forum or chat room before ever so here goes! my mum has dementia with lewy bodies my Dad is her main carer but isnt coping to well at present so mum has gone into a care home for respite, he and I and my sister are all upset and trying to support each other as well as keeping a close eye on mum, all very exhausting as Im sure you all will know. i am a nursemyself but I can honestly say nothing in my 20+ year career has prepared my for this illness Mollie1
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,090
    Kent
    Hello Mollie, welcome to TP.

    I don`t think anything can prepare anyone for living with dementia. It`s a totally different ball game when it`s one of your own and you are unable to `clock off`. In addition to the physical demands it is so upsetting, and your emotions are tested to the limit.

    It`s good your father has been able to arrange respite care. It will give him a chance to recharge, and have a bit of time for himself.

    There is support here for you, your sister and your father, if he uses a computer. It won`t take the problem away but we all know where you`re coming from.

    Keep in touch.xx
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Mollie, welcome to TP. I'm sorry your mum has lewy body dementia, it's very difficult to watch a loved one suffer in this way.

    I'm sure you're right that being a nurse doesn't help. I know that dedicated nurses find it difficult to switch off at the end of a shift, but when you're caring for a loved one, switching off is impossible. Dementia becomes part of the life of every member of the family.

    Please post here whenever you want. I expect you know most of the answers, but we can offer you support.

    Love,
     
  4. Peapod

    Peapod Registered User

    May 19, 2007
    55
    Pembrokeshire
    Hi Mollie - so sorry about your Mum, it's a wicked illness.
    You really are amongst the kindest people on here - we may not know the answers but just 'talking' can help; you are not alone!
     
  5. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Mollie,

    I always feel strange saying welcome to a new member as you know that most people would rather not have to visit a forum for dementia. But we are all here for much the same reason and find a lot of support from each other.

    Nothing can prepare you for this illness, but I hope we can offer some support and even practical advice. There are lots of information sheets on the main site (in case you missed them - the site has had a bit of a makeover)

    Factsheets:
    http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137

    You've come to the right place if you need a chat :) we are a very chatty bunch ;)

    Kind Regards
    Craig
     
  6. debby13

    debby13 Registered User

    Oct 15, 2007
    41
    Hi Mollie

    My heart goes out to you, poor you and your family. It is a truly awful disease my dad has the same version so I know how terribly sad and distressing it is to see the person you love going through this. I am glad your Dad has got her into respite and truly if he can find a support group or come on line it will help him. I think you need to be around people who truly understand and unless people have family with it then sadly I think they just cant really help in the same way.

    Love and hugs to you.

    Debbie xx
     
  7. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Mollie and welcome. Wanted to say that I too am a nurse with 20+ years experience-in many ways it makes it harder when you're dealing with dementia on a personal level. I've found that although you see "snapshots" of it in other people you may be caring for professionally it is obviously quite different when it's personal. I've been in conflict with myself since my husband was diagnosed with AD/VAD 18 months ago-"am I his nurse or his wife?" Joining TP and reading the threads is helping me to come to terms with the fact that I am of course his wife and I'm caring for him from that stance-leaving my nurse's hat off when I come home from work. I also think it's harder because we think that other people's expectations of us will be higher. My answer to that is that nursing is my profession. My husband is my partner for life-there is a huge difference. Nurse training equips me to deal with many practical situations but does not prepare me for the emotional rollercoaster of a personal involvement with dementia.It sounds as though you have a very supportive family. Some advice given to me on TP a few days ago was to take all the help that is offered-and keep posting! I wish you and your family well:)
     
  8. clarethebear

    clarethebear Registered User

    Oct 16, 2007
    197
    manchester, uk
    Hi Mollie

    Welcome to TP. I am so sorry to her about your mum, you and your family must be feeling totally lost at the moment.

    TP is a great place to come and chat and ask for help. There is normally someone here 24/7 and we will help and support you and your family as much as we can.


    Take Care
    Clare:)
     
  9. sheilarees53

    sheilarees53 Registered User

    Apr 11, 2006
    37
    Beckenham Kent
    Hello Mollie

    I'm glad you have found TP, it really does help to know that others understand what you are going through.

    My mum, also called Molly, has Lewy Body Dementia and has been in an EMI NH for the last 18 months.

    Before my dad died, 7 years ago, we had to put him in a NH as mum couldn't look after him any longer. It is such a hard thing to do and I send you and your mum and dad my best wishes.

    Stay in touch, we are all in this together.

    Love Sheila
     
  10. VIB35

    VIB35 Registered User

    Oct 15, 2007
    27
    Herts
    Hi Mollie1
    It doesn't take away your pain but my mother also has lewy body dementia so I know what you are going through. It is the most cruel illness and logging on to TP is very comforting, for some reason. It is impossible to explain this illness to someone who has no experience of it, friends for example, so it is helpful I find using TP as people know exactly what you are talking point. How old is your mother? My mother is 63 and is deteriorating frighteningly quickly. The whole thing is devastating. My father is my mother's carer too but we now have several other carers coming in each day to give my father a break.... it is so hard. How long has your mother had it?
     
  11. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Hi Mollie1,
    I can understand how you feel,i work in a home.but the day dad got diagnosed with A/Z was a day i will never forget.I have sat through so many MMSE tests with residents I thought that dads would be a breeze.It was initially when he got the medication,but a few hours later it hit me like a brick.No matter how much we deal with it in worklife its totally different when its one of your own.You may like me,be able to put the brave face on,seeing we work with it,but when we clock off,its a totally different story.
    love elainex
     
  12. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Mollie, and welcome to TP.

    I am sorry to hear about your mum. Please encourage your dad to take all the help that is offered to assist him with caring for your mum.

    I am sure that you will find lots of advice and caring support here.

    Best wishes to you and your family.

    Regards Taffy.
     
  13. mollie1

    mollie1 Registered User

    Nov 20, 2007
    12
    Newcastle
    Many thanks for all your kind words of support I am overwhelmed that there is such a site to use for all the fellow carers and their friends and families out there. x
     

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