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dementia progressing very quickly

Discussion in 'Younger people with dementia and their carers' started by candi, May 6, 2007.

  1. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    hi i have been reading the posts on here for a while and decided today to join, my mum aged 59 was diagonised with dementia (fronto temporal) about a month ago. she had been gradually forgetting things since about last september, but in january became very confused and violent and it ended in her being sectioned in a mental health hospital where she still is. when she went into hospital in january she could walk, talk and manage personal care with help. now she has not eaten for a month, drinks not enough, is doubly incontient, unable to walk unless helped by two nurses, is unable to hold or follow a conversion and doesn't recongize myself my dad, brother or sister and her grandchildren. i just wondered if anyone had any experience of dementia progressing this quickly and what to expect. the hospital had been very good with her personal care but it is wait wait wait. she is due to go back to cambridge for further tests but two months later we are still waiting for an appointment and she is inbetwen consultants care so we havent even had a family meeting to discuss matters. my dad would desperately like to take her home but we are worried how he would cope. sorry to take so long but i wondered if anyone could help or give me some advice
     
  2. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Hi Candi,

    Mu husband is 56 and had 'memory problems' for about 3 years, nothing much at first but then last August he had a psychotic period where he saw things and was very agitated indeed and paced about the house, we had to ring the doctor at 10pm one night who said give him 3 of his sedatives instead of the half he was having morning and night. They did make him sleep eventually. After that he was much worse and in October went into hospital for assessment and never came home. He stayed at the hospital for 6 months and went straight into a residential care home. He can't wash or dress himself but he's not incontinent. He can eat himself but sometimes needs reminding what to do with the spoon. He can't hold a conversation, he's in his own world where he's working still. He gave up work 5 years ago but all he talks about now is the job he's on. Even that now is becoming difficult to understand as he's forgetting words so makes them up. He knows me and is always pleased to see me but as he doesn't often see any other family, he's forgotten them. You can't 'expect' anything unfortunately, everyone with the illness is different so what happens, happens I'm afraid. I remember being told that my husband's psychiatrist was surprised at how quickly Steve has gone downhill.

    Personally, I'd be ringing up to get an appointment as soon as possible, tell them exactly what's happening. Pester them.

    Welcome to TP by the way and I am sorry you had to join us.

    Sue
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Candi

    I just wanted to welcome you to TP.

    Your mum certainly seems to have deteriorated very quickly since diagnosis. I'm afraid I can't help with that, I've never heard of such a rapid progression.

    Have you contacted your local branch of Alzheimer's Society? They might be able to find out for you what is happening. It must be so frustrating, not being able to get any information.

    Another source of help is Princess Royal Trust. They look after carers, not exclusively of people with dementia, but they also may be able to help get things moving.

    I don't really think your dad should be thinking of having your mum home until the hospital have got her stabilised, it doesn't sound as if he could cope the way things are. But you do need some answers.

    Good luck,

    PS Let us know how you get on.
     
  4. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    hi thanks for your reply i know you are right and everyone is different and it progresses in different ways. I am just so angry right know - angry with my mum for getting this disease i know this is wrong but has anyone else ever thought the same way? I feel like because she has dementia and the professionals have sectioned her they have have forgotten about her but she's my mum . i will be at the hospital as soon as i can this week and ask for a meeting with the doctors and try and get a long term plan. thank you. everyone seems so caring on here i am glad i joined at last
     
  5. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Hi Candi,

    I think most of us feel angry about our loved ones getting any illness, I've had conversations with friends as to whether it's 'easier' if they have a physical illness or dementia but ill is ill and we deal with it in the best way we can. I was angry with Steve when he got this, for a while. He has had a good life as I call it with his various hobbies and I used to moan because he was always out enjoying himself and now I think I'm glad he did do the things he did and enjoy what turned out to be a short life. The only problem is, all he remembers is work and doesn't remember his good times at all.

    I cared for Steve when he had to stop working because of rheumatoid arthritis and then the memory problems came and got worse quickly so in all I have cared for him for 5 years and the matter of what happened to him was taken out of my hands. My 'friends' as they are now at the Alzheimer's Society in Cambridgeshire were wonderful and I can't praise them enough, as was the psychiatrist and the staff at the day hospital he went to. He only went there four times, they said he was severely demented and needed more than they could offer and within a few weeks he was taken into the hospital, to the assessment unit where he spent 6 months as I said and then went to the residential home which is also wonderful.

    We have been very 'lucky' in the way Steve and I have been dealt with, everything has gone so smoothly and everyone at the hospital and the home have been just great. I wish it was like that for everyone.

    I do agree with Skye about her not being at home, your Dad wouldn't probbaly be able to cope for very long with Mum being as ill as she is. It will also confuse her being moved around too.

    Good luck, keep us informed.

    Sue
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Hi Candi, welcome to TP.

    I`m always very sad , to hear about such young people being stricken with dementia. There is no good age to be affected by any serious condition, but younger people often have younger children, who have to grow up very quickly.

    I`ve been through all the emotions, anger, resentment, sorrow and despair and I know I`m not alone. And neither are you.

    Keep supporting your dad, and keep pushing for the right treatment for your mum.

    There will always be someone here on TP to listen and offer help and advice, if they can.

    Take care
     
  7. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Candi
    My mum also started with dementia when she was about 59, hers progressed quite slowly. I have been angry with her - still am at times - that she hasnt been there when I needed her, that she has been ill so long, that I dont know what she last thought of me. I think too often 'professionals' do lose sight of the feelings of family they need lessons in empathy.
    Candi - your feelings are not wrong- they are your feelings.
    Thinking of you.
    Love Helen
     
  8. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    thank you helen that is how i feel, angry that she is not there for us anymore it was my 40th birthday last week and she did not know who i was let alone what special birthday it was. the future and plans we all had are gone and we are left with a mum who has no idea about what is going on in life. you always expect your mum to be there don't you? i was very close to my mum talking on the phone at least once daily and it seems overnight that has all gone. i am going to visit today and will try to get a appointment with the consultant. thank you for all your replies.
     
  9. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Candi,
    Yes you do expect her to be there. I know I used to be so jealous when work colleagues went out for a day with their mum shopping, or when their mum's looked after their kids for them. But life is a bitch at times - there's no doubt about it- and all that we can do is make the most of the situation that we find ourselves in.

    Your parents need you now - they need you to be there for them. If your dad does bring mum home you will have to ensure that he has a proper care plan in place, and plenty of support. They need you to help 'nag' the hospital and the professionals to make sure that mum isnt forgotten. They need your love. Dad may have some hard decisions to make, and he may need you to share responsibility for those decisions.

    It hurts - but you will do what you have to.
    Love Helen
     
  10. annesharlie

    annesharlie Registered User

    Candi

    You must be just feeling overwhelmed - this has happened so very quickly - it is a lot to get used to all at once. Most of us have months or years to slowly adjust to changes as they happen. All of your feelings are ok and expected - I feel jealous when I see other men driving, or shopping, or out and about in town, it's just so very hard to suffer the losses of all that could be, all that we wanted this time to be. Try and do what you can for your mom, make her special cookies, or visit as much as you are able, it seems to me that she won't have long if she's deteriorating so fast.

    Welcome to the forum and thanks for posting. We are all together in this, all over the world, we're facing the same struggles.
     
  11. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    thanks to everyone for their replies. just an update on my mum. myself, dad and sister have had a meeting with the consultant this morning and it seems she has probable sporadic CJD from the MRI scan she had done on thursday and with all her history this appears to be her diagnois. She has an appointement in cambridge next week but it seems like they will confirm this with a lumber puncture. We were also told by the consultant that she will be unable to come home and needs 24hour nursing care so we now have to start looking for a nursing home. we were also asked about resus status but dad was unable to think about that at present so we have to get back to the doctors when we have thought about it. thanks for listening everyone
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    I`m so sorry Candi, there`s nothing more I can say. It`s tragic.

    Take care
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Candi, I'm so sorry. That must have been devastating news for all the family. I'm not surprised you weren't able to think straight.

    I'll be thinking of you, and remember TP is here for you, any time you want to talk.

    Love,
     
  14. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    thank you for your kind thoughts spoke to the doctor today and he said the CJD is extensive all over the brian but at the moment he is not able to give us any time scale of when the end will be but i got the impression is would be sooner rather than later. i hope it is ok to continue posted on this forum as i have looked at the CJD site but they don't have a forum as yet. and she has got dementia but we also now know what has caused it. i find it very helpful to talk to other people going through the same sort of thing. thank you
     
  15. annesharlie

    annesharlie Registered User

    Just to say I'm thinking of you and so sorry about this news. I know it's a vicious disease and moves very quickly - I am sure you're overwhelmed and very stressed out about this. Hang in there.

    Anne
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Dear Candi, of course you are welcome here as long as you need us. I`m sure I speak for everyone.

    CJD is a dreadful condition and as long as you can get the smallest crumb of comfort from TP, there will always be someone here.

    How are your father and sister coping?

    Love
     
  17. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    thank you my dad is in complete shock especially since the doctor asked about the resus status and what we wanted if anything should happen, but today he has been talking to my sister and appears to have been thinking about mum's quality of life at the minute and he now knows she wont get better. my sister and i both think that mum should not be resusitated if anything happens i feel it is kinder to let her go peacefully i dont know what other people think. but we know we have to leave the decision to dad and just support him in what he decides. my sister is strong but she has a alot on her plate she had a baby three weeks ago a little girl after two boys we know mum would have been so happy for her it's much harder for my sister as her first little boy was stillborn and i don't think she would have coped without mum and i know she is so sad that her children will miss out on memories of their nanny where as my girls are older and have at least spent time and holidays with their nanny and have lots of happy memoires.
     
  18. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Hi Candi,
    As you say you can only support your Dads decision and if my mam was to arrest, I wouldn't want any intervention and I know my Dad would not either. And you being a nurse understands it's not a decision made lightly. These decisions are made quite often on the ward I work , palliative care patients and even the patients themselves decide, if there's no family to speak to. Life isn't always fair, but we all know that. Take care Rosie xx
     
  19. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Candi

    Of course you're always welcome on the forum. Post as often as you like, we're all here to support you.

    You're right that the decision about resuscitation has to be your dad's. But in that situation my decision would certainly be no. I said no for my mum, and I've never regretted it. Where there is no hope of reversing the brain damage, there doesn't seems to me to be any sense in prolonging life just because we can.

    This is of course not the same as withdrawing food and drink.

    It must be very hard for your sister, having just had a baby, and your dad must be absolutely devastated. My thoughts and prayers are with you all.

    Love,
     
  20. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    hi everyone thanks for your messages. we have just found out that mum will be moved today or tomorrow to another hospital for more tests! i'm getting sick of that word ! sometimes i wish they would just leave her in peace but i know they have to be done. i have been trying to start looking for a emi nursing home for her but it's like banging your head against a brick wall, usually she is to young to go there, if not they only offer emi residential care, sometimes, without sounding awful, i wish she could pass away peacefully in her sleep and be free of her terrible illness. does anyone else get envious ( not that i would wish dementia onto anyone else) when they see other people out with their mum's (or dad's) i got really upset when i went shopping yesterday as thursday's was mum's usual day for going shopping and i kept looking around expecting to see her and go and have a coffee like we used to. silly i know as she has not been able to go out for a while, but it's little things like that that make you realise how much you have lost, i also get upset seeing other couples mum's and dad's age out and about.
    sorry having a bad day take care candi x
     
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