1. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    #1 Mjaqmac, Jul 28, 2004
    Last edited: Jul 28, 2004
    Hi everyone
    Just looking for some sympathy here.
    Have had mum in day care for past 2 days from 12pm til 5.30pm, have been so tired I can get nothing done when she's out and have aches and pains everywhere, am battling with a blinding headache that's been there since the weekend, when I had the big showdown with the new care agency. I seem to be carrying my shoulders up around my ears all the time. I think it must be a stress headache.
    Mum was the most unsettled she's ever been last night. She kept getting her coat to go home to her wee one. I'm the 38 year old wee one! I got seriously stressed with her last night, dad was holding it all in too.
    Then when the girl came to change her for bed she wouldn't get changed. Not only did the drawers stay put, so did everything else. I can't really blame her. They come at 9pm which I picked, it's preferable to 7.30pm when the others came, but because of my mum's arthritis she can only come down and go up the stairs once a day. So when they change her for bed it disrupts the family viewing, they stay a good 30 mins to 45mins as I think they are told to do this. Then, because mum can't go to bed alone and has to be locked in with dad, no one goes to bed for another 1-2 hours. Although everyone's going on about me getting a break and letting the carer's help, it's really just putting more strain on me. Just don't know what to do anymore. Hate all these people coming and going I seem to spend most of my time getting clothes etc ready for them coming. Why can't I just settle with all this? Everyone else seems to cope with getting outside help. Why is it I can't bloody stand it?
    Sorry, I just need to let off steam.
  2. Mike7

    Mike7 Registered User

    Jul 26, 2004
    Hi Mjaqmac

    Your not alone, when I looked after my Dad I hated all the interferance from everybody. I was gratful for their help but it seemed at times I would have been better off doing the job myself as I was always having to organise things such as clothes, times etc. and they were always asking me for information,about his like's or dislike's.
    I now work with people with dementia and hear many stories from families who get just as frustrated as I did.

    So you are not alone, but remember any help is better than none.
  3. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Thanks Mike

    Thanks Mike, just in a narky old mood today.
    As you know, there's days when you simply lose the will to live!
    Last night was a stinker. But today could be a whole different story.
    Your support's appreciated. Thank you.
  4. Amanda

    Amanda Registered User

    Jul 13, 2004
    Bad day!

    I cant really comment on your personnal experience as My mum hasn't progressed that far yet. I've had some really awful days recently too as I'm sure that everybody does, the only thing that I do when I'm particularily stressed is to have some 'me' time. Don't forget about yourself. Easier said than done, but sometimes you've got to just get away even if it's just for a couple of hours.
    I used to work in a day care house for people with dementia. I loved it as the people their have no inhabitions. Theday care that I worked at was run really well and the members were always happy with us. I hope that you have a better day today.
    Take care of yourself, if your not happy within yourself-you're no use to anybody.

  5. thompsonsom

    thompsonsom Registered User

    Jul 4, 2004
    Hi Mjaqmac

    Sorry to hear you are having a bad day, I too was feeling depressed yesterday wondering how much longer we as a family would be able to cope with mum living with us. It is a lot worse when you are tired and so you really need to try get some sleep in order to carry on, instead of worrying about what should be done when mum is at day care and then not being able to motivate yourself to do anything, you would be far better getting your head down and resting. I know that we often feel guilty not getting things done whilst loved ones away but the time is for us to catch up and if sleep is needed then you should use the opportunity and not feel guilty.
    Hope it helps as we are all here to support each other.

  6. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Thanks guys

    Thanks guys, feel awful for moaning now. Sometimes you post stuff and a while later you think, Oh God why did I do that? But I'm glad I did because I know I'm not alone. You're all going through it too.
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Post away - that's what this place is for!

    Does anyone do the same as me sometimes and write a post, then delete it as it is perhaps too over the top? Still makes me feel better for having got it off my chest, even if I bottled out from sending it.....
  8. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Yes Brucie

    Yes B, have done that a few times.
    You just get so damned frustrated in this dementia bubble, there seems to be nothing else to talk about, think about or look foward to.
    I went out today and left mum with the agency carer. I didn't really want to go out but I don't like staying in if the carer's there as mum goes mad if she sees me and wants me to stay in the room.
    Came back 2 hours early and seen coming down the street the carer's car was gone. I nearly threw up. Turns out she was sick and had to go home, another carer was there. I just wish she had have said she wasn't well this morning or phoned me on her mobile to let me know at least what I was coming home to. On the other hand, she probably didn't want to worry me.
    I really hate leaving mum with strangers, but everyone keeps telling me I have to do it. I wish my family would do it. I'm going to dread going out again now. I know people get sick and have no control over that, maybe I'm just over protective. I can't seem to let go a bit.
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    It IS terrible to hand a loved one over to others, even for a short time. But there are practical issues, the prime one being that no one person can do full time caring 24 hours each day beyond a cerytain time.

    I agree that it is good to separate your Mum's care into compartments - your time with her, her agency carer's time with her. It does neither you nor her [nor the agency carer] any good if you are all there at the same time.

    I appreciate how unsettling it must have been for you to see the agency carer's car gone! However, they did just the right thing in pulling in someone else to take over. It would have been diabolical had they just left, feeling unwell.

    So, take confidence that they did that right thing.

    We're all over protective, and that is precisely how we should be, because we are being protective of someone who has [even unknowingly or unwillingly] to trust in us totally. It is an awesome burden and no wonder we groan under its weight.

    Yet, having gone through the guilt thing and a period of not liking myself for being unable to cope, there are times when I can sit back and be kind of proud of what I have been able to do throughout for my wife. I like to think that Jan would have been just a little proud as well.

    Take a few moments occasionally and look at what you have been doing all those years. Even on the small sample of your own family, and taking you all as representative of society as a whole, 75% of people would not have done what you have done.

    That's something you can be very proud of.

    There's a time when it is possible to let go, and there's a time when it is too soon. There's a transition between them and one day you will realise that you have started to make the transition. You will go from saying to yourself "I can't..." to "maybe I can, just once..."

    You'll never stop worrying about her, though, nor should you.

    Keep strong and keep writing the poetry!
  10. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Brucie Braveheart

    Thanks Brucie Braveheart, you've made me cry and feel proud at the same time.
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    One day I'll make someone, somewhere laugh!!

  12. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Laugh accomplished!

    You did make me laugh. The Steve McQueen story cracked me up. Still tittering about that one actually.
  13. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I have often written a posting then deleted it because it was so over the top.
    It's all been said before you get a bad day and you think this is it I can't go on any longer,tomorrow I will sort this b------ lot out once and for all.
    Then the storm subsides and she looks at you with her lovely appealing eyes and she says "you wouldn't ever leave me would you"?
    You think what a b-----d I am and we carry on again,until the next bad day.
    Day to day
  14. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004

    Norman, I do that too. Everytime my mum is a royal pain in the **** I'm into the old "right, that's it she's going into a bloody home I can't deal with this anymore." routine.
    Then she calms down a bit and she's all sweetness and light and vulnerable and you think, you big bitch, how could you? Unfortunately I know the day probably will come when I might have to, and it may not be too far away. Until then, as you say, "day to day."
  15. Charlie

    Charlie Registered User

    Apr 1, 2003
    I too have deleted the odd tale before posting :-(

    Just seems that I'm rattling on and not making much sense - you just can't help it all getting on top of you sometimes. Luckily we have the option to delete (if only answer machines were so forgiving!).

    However, this is a great place to talk about our problems, there's a real empathy on this list and I get the feeling that a lot of us have bad days.

    My mum (dads main carer) goes through amazing bouts of depression AND we now know how important those breaks are going to be (when dad starts to go into day care). However hard it will be for mum to cope with dad being looked after by someone else, she will hopefully be in a better position to cope when dad returns at the end of the day.

    I also find that life can get a bit boring for dad at home, a once very active man, so these 'days out' may have hidden benefits in his case.

    Phew, I'm at risk of rattling on and not making much sense again :)

    thanks for listening
  16. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Rant of the day

    Charlie my turn for a rant.
    After coming home to a different carer sitting with my mother than the one I left the house with yesterday, no one arrived this morning to wash and dress her. Have to be at the day centre for 11.30 and there's nebuliser, medications, and physio to be done everyday. Seriously ****ed off with this agency now, have only been with them a week and it's been none stop hassle. Going to tell them all to stuff it.
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Just a suggestion....

    Why not talk to the head of the agency first?

    If it is a small agency the head may be one of the ones who are involved in day-to-day caring and who is a problem herself/himself, but unless you - constructively - explain the problems you have had, they will not have had a chance to improve.

    There are too few good agencies around, and I believe we should at least to try and help them improve, if only for the benefit of those who follow you.

    worth trying at least?
  18. Jude

    Jude Registered User

    Dear Mjqumac,

    Would it help to write a list of do's and don'ts for the carers? That way it would save you a lot of time repeating yourself and they would also immediately know what you need. Be as specific as you like and itemise every 5 minutes of their time. Perhaps it would help you to relax and for them to feel organised.

    Just an idea. Jude
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Jan is on 1-to-1 care at her home and the other day I accidentally caught sight of the sheets of paper they give the 1-to-1 care person as a guide for when they are with her.

    The papers amazed me in a hugely positive way.

    I'll ask for a copy and post it here to show what I mean.
  20. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    #20 Mjaqmac, Jul 29, 2004
    Last edited: Jul 29, 2004
    Gone with the wind

    Spoke to agency boss today, they had no idea no one had turned up. Have explained all the hassle we've been through etc, but had already done this anyway after last weekend. It just wasn't getting any better. Have told them not to bother coming back. I will take the sitter service but I don't want anyone coming in to change her for bed etc, we had no one last night and we were both more relaxed, she took off her own clothes and I supervised. Life's too stressful without waiting around for people whom don't turn up. I haven't taken this decision lightly, I have been suffering all this stress and hassle with agencies since August last year. Enough is enough.

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