1. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    My Susan has been having a very bad time. She knows what is happening, and every morning tells me she "does not want to be here", she "does not want to end like her mum". She "does not know where she is going" or "what she is doing". I can slowly calm her down and during the day she says "please not to put her in a home". She is so aware of what is happening to herself.
    When will this knowing stop and end a misery for her ?
    cris
     
  2. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    Cris, that's a stupid question to ask. How long is a bit of string ?
    Don't ask silly question again.

    Cris:eek:
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    NOT a silly question Cris. It's one we all ask ourselves. Yes, you're right, there's no answer -- or at least no answer until it happens. Until then, we just keep asking.

    It must be so hard for you, watching Susan suffer, and trying to reassure her.

    You're doing a great job. Keep saying that to yourself, and keep posting. We're all here to support you.

    Love,
     
  4. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Oh Cris.......this really is the worst time for you and I remember asking myself the same thing over and over.......I think we all wish this phase to pass....so that our loved ones can reach a stage of inner peace.
    All I can say is keep doing what you're doing, calming Susan when you can......but I know, some days are so much harder than others
    Love Wendy xx
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,567
    Kent
    #5 Grannie G, Mar 21, 2007
    Last edited: Mar 21, 2007
    Dear Cris, we are in the same boat.

    When my mother developed dementia, she just kept saying her memory was awful, but that was it.

    With my husband, he seems so aware of the changes, he keeps asking what is happening to his mind, or to his brain. When he has a bad lapse, he asks if he`s been violent, or if he`s hurt anyone. He wants to hide, he feels so embarrassed about his lack of ability.

    His biggest fear is I will get sick of looking after him and put him in a home, so when he knows he`s been a pain, he`s full of apologies. When he`s unaware, he becomes stroppy, and that, for me is the most difficult, as it is so hard to be kind to someone who`s being horrid.

    He has asked me to help him to die, but at the same time I know he is frightened of death. But I`ve lost count of the times he`s said he would like to close his eyes and not wake up.

    I don`t know whether I want him to deteriorate and lose this awareness, or stay as he is, when he does have occasional periods of pleasure.

    With love
     
  6. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Steve had been in hospital for almost 6 months and now he's gone into a home. About 7 months ago when we knew he was ill and getting worse and was still at home with me, he asked me not to put him into a home. I said I wouldn't. And I have. He's quite ill now but has days or weeks where he cries all the time and is very confused and agitated. His days are always back to his working life, all he talks about are jobs that have gone wrong and he can't put it right and it makes him very agitated. Funny thing is, his jobs never did go wrong, he was very good at what he did. I've not seen him yet since he's moved to the home a week ago today, the staff have advised against it, leave him a little bit longer to see if he settles they have said and I will go with their advise for a while anyway. I ring up every day and he's crying and pacing and they're worried he'll fall. He has let a nurse wash his face but he won't let her go any further and she has shaved half of his face and he's told her to stop, he's fed up with it and not having it. they told him I'd rung up to see how he is and that made him cry more and they asked him my name and he knew that without having to think about it. He says, she's left me and cries. So, I'm feeling absolutely drreadful at the moment too. I'm ringing tomorrow to have a word with the manager of the home because I think I want to go and see him in the hope he might settle a little but, who knows.

    Sue
     
  7. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Sylvia
    It's so hard isn't it?
    I hated to see mum so unsettled,angry,frustrated,anxious and I hoped it would pass....it did ....but there was nothing left.....no memories ...no speech.....an empty shell.....and that was just as heartbreaking......Oh how I wanted her to whack me with her walking stick again!!....at least then I knew she still had fire in her soul!!
    The bottom line is ...we just want this evil disease to go away and let us have our loved ones back
    Love Wendy xx
     
  8. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    My heart and feelings go out to you all. I know that there are many out there in a far worse situation than I am. It is my sadness and frustration for Susan that upsets me.
    Grannie Sylvia, Susan asks me not to put her in a home, and keeps apologizing.
    Twink Sue, you must be breaking your heart. I'm thinking of you.

    cris
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,567
    Kent
    Dear cris,

    It`s not a case of some being in a worse situation than others.

    We`re all in it together.

    If we can get support from each other, and give support to each other that`s as much as we can hope for.

    That`s TP.

    With love
     
  10. BonnieRose

    BonnieRose Registered User

    Mar 27, 2006
    16
    taunton
    dear Twink/sue, go and see your father-you'll both feel better for it. Mum went into care in dec- having always promised to her that I would'nt do it.
    I've gone about it completely the other way- every day, every other,ect now it's twice a week.She still askes for a holiday but I take her back for tea at 4.30.I still have to explain why she'e there ect,and I think I always will.
    I know alot of places say to leave them for a couple of weeks but I know my mum best- she would have either been heart broken or worst still-hate me, which is what happened to a friend of mine.Everyone is different and I think we should remember that, I have found it gets easier but it's nice to come back here and share our thoughts and love.Enjoy your dad while you can, we know time is precious.x remus
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,567
    Kent
    Dear Remus

     
  12. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Thanks Cris,

    It's SO hard. I've been his carer for almost 5 years now - he has rheumatoid arthritis too and had to stop work - I had to do more and more for him obviously as the dementia set in. He went into hospital almost 6 months ago and though he wasn't always too happy, he did have good days where he laughed but of course days when he cried too but now he's so confused. I've just rung the home and they said visit on Saturday which I'm glad about because I was going to go at the weekend anyway. I spoke to his main carer and she said was he racist. I said no, not at all, his daughter married a lovely Indian guy (now divorced) and we have friends who are Black and Asian and he has never been racist so she said that he won't let the Phillipino or African nurses in his room! Strange. Yesterday he asked for me for the first time so that kind of made my mind up to go and see him soon anyway. I just hope he's not too upset when I leave.

    Thanks too Remus. Steve is my 56 year old husband, not my Dad. I think Steve is probably heart broken too because he did say the other day to a nurse "she's left me". He really must think I have deserted him and that's so sad.

    Take care

    Love Sue
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,567
    Kent
    Hi Sue, I`m so pleased you will be able to visit on Saturday. It must have been so difficult staying away.

    I didn`t realize Steve was so young. Somehow it makes it all the more tragic.

    Hope your visit goes well.

    With love
     
  14. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Thanks Sylvia,

    It has been really difficult staying away, specially now he's only 2 miles up the road from home. He was 10 miles away before at the hospital. You know how it is, I want to see him and yet I dread seeing him. If he's crying and pacing it upsets me, it's never as bad when he's not upset or agitated. I was warned he would go downhill probably a bit when he moved. He will be 57 in July and looking back, this has been coming on since he was about 52. I'm hearing of so many 'young' people getting this disease. For 6 months in the hospital he was 'at work' in his mind, always talking non stop about work and yet the carer said today that he's not mentioned it since he's been in the home. So much we'll never understand about this isn't there.

    Love Sue
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #15 Margarita, Mar 21, 2007
    Last edited: Mar 21, 2007
    I had that feeling this morning , when my mother was getting ready for daycentre , I was wondering why she keep asking me for lipstick do her hair , very motivated .

    The thing is mum does not go to day centre on Wednesday they change the day 3 weeks ago , I could see a puzzling look on mum face , that she wanted me to ring daycentre because she thought I had got it wrong , I did ring them , I felt so sad as I had to keep repeating it over , then Resurging her , its not her that forgot it me , because she look so scared , that she new she had got it wrong

    I went to Sainsbury to get shopping and I had a panic attack, just thinking how my mother must of felt when she realized she is forgetting it all and I am sorry but those moment are really hard for me to take , its like I can feel her pain when well she really forget , its all so Horrible for her I want it to stop for her , or trun back the time and be ok

    I don’t know cris I wonder do they every really forget until the end that they do not know us .
     
  16. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Sue,

    That must be so hard to take. It's such a hard decision, whether to visit or to leave them to settle.

    Care Homes seem to have the policy these days of asking relatives not to visit for the first couple of weeks, but to my mind that is unnecessarily cruel.

    OK, they're going to be upset, and want to come home, but that surely can't be as bad as for them to think they've been abandoned.

    Perhaps I'm wrong, I've not had to do it yet, but my whole instinct would be against not visiting.

    I'm so glad you're going to visit your husband this weekend. I hope it goes well. Let us know, we'll be thinking of you.

    Love,
     
  17. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Thanks Hazel,

    I did say I'd leave it up to the staff at the home and let them tell me when they thought I should visit but I can't. I'm really pleased the carer said today come on Saturday. I hate the thought of him wondering where I am and thinking I have left him. A friend had her Mum in the same home Steve's in and she says they are really great and she suggested I visited soon and she said they are trained, they know what to do with him if he does get upset when you leave. As far as I understand from the staff at the hospital, he soon forgets I've been anyway.

    I totally agree with you when you say they are going to be upset but surely that's not as bad as them thinking they've been abandoned.

    I will let you know how he was when I've been to see him.

    Love Sue
     
  18. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    Twink/Sue. Will you have someone with you when you see Steve ? Perhaps you could have a neighbour, friend or relative to be there for you when you come out.
    They dont have to see Steve, just to be there for you.
    Please let us know how it goes for you.
    cris
     
  19. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    We had our first respite visit (2nd if you include their first introduction last Friday).
    Anyway it all went very well. Susan was very keen and looking forward to Linda's visit. They went out for one & half hours for coffee & chocolate cake. Susan could not recall anything but kept telling me what a lovely lady Linda is. Hopefully she comes again next Tuesday. Not to give me a break, but it is a joy to see Susan "happy" that she has done something without me. (I'm just the wicked ogre who gets her to wash, dress, undress, use the loo, and go to bed, cooks, cleans and oh stops her jumping out of the window - oh dear wo ist me - it's not a moan.)
    I'm going to go and see how much the budget has increased my wealth and have a tipple.
    cris
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,567
    Kent
    cris, that`s great.
     

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