1. jillikins

    jillikins Registered User

    Feb 25, 2008
    11
    My mum has dementia she is 79.I dont really know were to start,she is still at home with my stepdad being her carer, she has good and bad days,he doesnt really understand what is happening to her and trying to explain how and why to him is terrible. The other day she woke in the morning not knowing who he was, we were there within minutes to help, she didnt recognise us either.It took 3hrs to calm her,and after a nap she was back with us again.
    Why does this keep happening? What flicks the switch?

    Im scared she wont come back one day, sorry cant write any more now
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi jillikins and welcome to Talking Point

    you haven't said which kind of dementia, and this can be key, though with all dementias there is a path and as the path is travelled, this happens more and more often.

    there is not necessarily a particular switch, just a slow progression as the brain is compromised.

    With vascular dementia there may be more noticeable steps as mini strokes happen.

    She needs calming probably because she is hugely scared. It is always worth keeping in mind that no matter how scared and confused you all may be over her condition, she will be more so.

    also that no matter how unlike her self she may appear, she is still in there. It is worth trying to enter her world because there may be no way she can enter yours now.

    I wouldn't want to say this path is going to be easy for any of you, but I wish you all the best. Please use TP as much as you need to. don't be afraid to ask anything here!
    :)
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Dear Jillikins.

    Has your mother had a formal diagnosis? Is she on medication? Does she have regular monitoring by her doctor?

    I`m sorry to bombard you with questions in reply to your first post, but it does help to know a fuller story.

    If your mother has help from Social services or is being monitored by a memory clinic, the people there might help your stepfather understand what is happening. It won`t make it less distressing, but it might help him to feel he has some support.

    And you too are in need of support. You have come to the right place in becoming a member of talking point [TP] as there are so many people here who have travelled the same road as you and know what you mean when you say you can`t write any more.

    Please try to write more. It won`t make the horror of dementia go away, but it will help you feel less alone.

    Love xx
     
  4. jillikins

    jillikins Registered User

    Feb 25, 2008
    11
    Yes mum has been diagnosed with Alzheimers and Dementia, she goes to a memory clinic and she is taking Arecept and Trazodone which keeps increasing the worst she gets, her dose at the moment is 50mg in the morning and 150 at night.
    The clinic is very good but nobody has taken us to one side and talked to us, we have read everything we can on the subject.
    We use things to help calm her like playing darts which she loves,knitting and photo albums but when she fails to recognise us we feel helpless, and yes she is so very very frightened it kills me to see her,her terror at times is the absolute worst thing, all Iwant to co is hold her but she wont allow me near her.
    Being able to talk here is going to help us so much
    thanks.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Jillikins, my husband is on the same dose of Trazodone as your mother, but not Aricept, as it didn`t agree with him.

    I don`t think people will `take you to one side and talk` to you. I think they wait for you to ask, and then are only too willing to tell you what they can. This is because some people do not want to know.

    I`m glad you can still find ways to occupy your mother. All my husband does is read the paper, listen to the radio and watch TV.

    I`m also glad you feel TP will help you. It`s been an absolute life saver for me.

    Love xx
     
  6. taylorcat

    taylorcat Registered User

    Jun 18, 2006
    171
    W.Scotland
    Jilli,

    I also felt like this with my mum in the beginning and indeed I still do a lot of the time.

    I described it as some kind of screen coming down in the brain and blocking something and then all of a sudden it would lift again and she'd be back with us.

    Sorry can't explain why
     
  7. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    716
    Ashford, Kent
    Hi

    My GP probably gave me the best explanation of Dementia when I said to him that I just couldn't understand how some moments were actutely confused, then others back to normal.

    He said to me, Dementia is like a foggy day... and sometimes, the fog lifts and the sun comes through, then it comes back.

    That is exactly how I see my Dad. Today, has been mostly the fog clearing, but in one breath he managed to ask if Mum would be back from hospital soon so he could go to the cemetery (to visit her). :rolleyes:

    I don't understand it. It's very upsetting to watch - but.. that what doesn't kill me will make me stronger (so they say).

    Best wishes.

    Beverley x
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    My husband says he sometimes feels he is looking through a net curtain. Net curtain/foggy day, both comparable.
     
  9. Cloudwatcher

    Cloudwatcher Registered User

    Nov 2, 2007
    33
    West Sussex
    Dear Jillikins,

    Welcome to TP and I am sure you will find a great deal of help and support from the amazing people that post here.

    I can relate to your fear that your mother won't come back one day. My Mum was diagnosed with AD 2 years ago now. I dreaded the milestone in the disease of her not recognizing me. It happened some 5 months ago and I was devastated. I speak to her on the phone regularly and I visit as often as I can, every 6 weeks or so. I live in the south east and my family is in Scotland. I can't wait for every visit home, but I dread it at the same time.

    Beverley's description from her GP is very good and my Mum often says about "the fog" In the early days I kept wanting to get her eyes tested as it seemed she couldn't see anything. When we had her eye test everything was fine. On the day she didn't know who I was she said " I recognize the voice but I don't know who you are"

    I'm sorry for you that when your mum is frightened she won't let you near her, be patient and calm. My Mum was never the most tactile person but she is more so now. Maybe when she is frightened, if you can't give her a cuddle, then try the diversion tactics like darts or the photo albums.

    Best wishes

    Lee x
     
  10. jillikins

    jillikins Registered User

    Feb 25, 2008
    11
    please keep talking to me,its difficuct to open up
     
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    While I think it's only natural to want to give physical reassurance when someone is so distressed, I think it's probably a kindness to back off at those times in a physical sense if at all possible. I'm thinking how frightening it must be to have someone you don't know (as far as you're aware) try to touch you, hug you, even restrain you. Distraction is a good ploy, and verbal reassurance but physical contact is probably best avoided when she's in this state.
     
  12. Cloudwatcher

    Cloudwatcher Registered User

    Nov 2, 2007
    33
    West Sussex
    Dear Jillikins,

    TP is here for you and it is anon. I and others on here understand your fear, we are here for you. Say what you want to say as there will be someone here who will understand where you are coming from. Dementia,in what ever form it rears it's ugly head, brings many emotions one would not expect to experience in their life.

    Keep talking, it will help.

    Lee x
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Dear Jillikins,

    I`d like to echo what Lee/cloudwatcher has said, TP is here for you, and no-one knows who you really are. All we know is someone has the same or similar problems, trying to come to terms with a dearly loved relative suffering dementia.

    When you write your posts, just write about your thoughts and experiences, your fears and concerns. It will help you to write about it and the best place is here on TP. Everyone who reads your posts will understand.

    Remember you are invisible on TP. :)

    Love xx
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Thank you for that Jennifer. It is such a good point and one I had never thought of. :)

    Love xx
     
  15. AJay

    AJay Registered User

    Aug 21, 2007
    123
    Leics
    Hi Jillikins and a warm welcome to TP.

    I'm not quite sure what to say apart from keep talking, TP members have certainly helped me through some agonising times.

    My Dad has been diagnosed with Alzheimers dementia recently aswell though I think he's had it for some time, his stubborn streak in accepting no help whatsoever has delayed things by a few years.

    I have a million and one fears, the consultant at the hospital didn't hold back on what Dad's going to go through and I'm so very scared for him. I watch every single move he makes now to see whether he's on a further decline and have cried many many tears in the last few weeks because I can't bear to see this happening to him, my larger than life strong argumentative pedantic Dad has been reduced to not even a shadow of what he was and it's terrible.

    Please keep talking to us, I wouldn't know how to cope without being able to log on and know I'm amongst friends who understand exactly what I'm going through.

    AJay xxx
     
  16. Philippa

    Philippa Registered User

    Feb 26, 2008
    41
    Essex
    Hi Jillikins, and everyone else. I'm new here too, although I've looking at TP for a while now. My father, nearly 87, has vascular dementia but Mum and I are getting very little help. He, too, has good moments and bad moments. In a clear moment at the weekend he told Mum he loved her and that he wanted to go to bed to die. In another moment he asks when he can pay the hotel bill and what time is the flight back from New York!

    Philippa
     
  17. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Warm welcome Phillipa.

    Now that you have found us I hope you will ask for any information/help that you think you need.

    Very friendly, caring group of people here on TP, so someone is always happy to help.
     
  18. jillikins

    jillikins Registered User

    Feb 25, 2008
    11
    Hi Philippa,nice to meet you
    Have you tried SS our area has a special mental health care team and they have been very helpfull,you need to get your foot in the door,then all sorts of options to help come up.
    Mums been good since the weekend,she`s going into town for a walk with dad every day,thank goodness,she lives to walk and I feel she needs to walk to live.
    She rang us all this morning to see if we were all right, we had earthquake this morning,seems to have really excited her! all bubbly and laughing.
    Setting her hair today,better get some tarts in for her to eat,she eats all the time these days.
    love to all, hope you have a good day
     
  19. Philippa

    Philippa Registered User

    Feb 26, 2008
    41
    Essex
    Thank you for your replies!

    Connie and Jillikins, it was lovely to hear from you. I am so bad at computers I thought I'd probably mucked everything up. I'll be thinking of you setting your Mum's hair - I cut Dad's yesterday. Didn't make a terrific job of it!

    Things have improved a little just in the last 24 hours. A man came round to fit some rails for the stairs and to raise Dad's chair to make it easier for him to get up. Also, the district nurse turned up to dress Dad's legs (he has water on the lungs and swelling in his legs) and kindly brought some incontinence pads with her. These have helped a little. The thing that really upsets Mum and makes her quite cross at times is the constant wetting (made worse by the pills the doctor prescribed). Dad is now unable to go to the loo by himself so it's pretty distressing all round.

    Mum finds it difficult to ask for help and always puts on a brave face when the doctor or nurse turn up but she has promised me that she will start telling the truth and asking for any help available. I think this is a good step forward for her. The two of us are really struggling at times.

    Again, it was lovely to hear from you.

    Philippa
     
  20. jillikins

    jillikins Registered User

    Feb 25, 2008
    11
    Good evening friends
    It was a slightly foggy day for mum today,I like that term it seems to fit her so well at the moment.Thanks to all of you,it feels like a nicer,quieter,calmer place now (thats in my head)
    nite nite, sleep well,talk soon.

    Jill
     

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