settling down and giving up

Discussion in 'ARCHIVE FORUM: Support discussions' started by Áine, May 8, 2006.

  1. Áine

    Áine Registered User

    Going through more agonies about what it means to "settle down" in a nursing home. I can't quite see where the difference is between settling down and giving up hope. I don't really enjoy it when dad is aggressive with staff, and it breaks my heart when he's asking to go home ...... but at least it seems to show some life and hope. The people there who are "settled" are sitting in chairs, sleeping most of the day. Dad has spent most of today asleep on his bed ..... which the carer described as him having had "a good day". Is that it then? resigning oneself to the routine and the helplessness and hopelessness? after all, what else could there be?

    sorry to be so despairing :(
  2. connie

    connie Registered User

    Mar 7, 2004
    Aine, can see where you are coming from, it is such a dilemma.

    You want to see dad fight, as it gives you hope, but dad's fighting is really only his frustration, and do you really want to see that.

    We, as carers, are stuck in the middle. Lionel is at home with me. We have days where his agitation is so great, and then days where he cannot get out of the chair. I don't regard those days as giving up. I just feel his brain is resting.

    Only my theory. Love
  3. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    My gut reaction to your post was 'For whom was it a good day?' I sense, but quite happy to be wrong, that that is your concern here.

    Very different circumstances just now for your dad/my mum, I know, but I am aware since Diazepam was stopped mum has become , shall we say, a 'lot more lively' again. Truth, that makes it a lot more difficult for me as a carer.... a few weeks ago I could trust I could prompt her (by phone early morning) to take her tablets, know she would dress in however long it took her, and that then she would be exhausted and sleep in front of the TV until I finished work and arrived lunch time....

    Now she doesn't sleep all morning - still naps throughout the day, mostly 'forty-winks' style, - even when I am talking to her at times :eek: ..... but the anxiety and agitation (for which Diazepam was first prescribed by GP before the alarm bells rang about her memory) have returned. In some ways, I find it harder to manage (including her calling me at work every time she sees a squirrel in the garden or to let me know the postman walked past and she didn't have a letter). But yes, I like to know that there is SOMETHING that matters to her instead of dozing in a chair for hours until she gets some stimulation to motivate her into something, anything.....

    Aine, you probably won't like what I am saying but I say this for you - and indeed for me - when I know difficult choices will no doubt have to be made at some point..... are you happy about where your dad is?

    I know from a recent post you are at the point of exhaustion visiting when you should be able to go to work, get home and find some time for yourself knowing dad is well looked after. Are you pushing yourself so much because there is some inner sense which tells you things are not quite as right as they could be? Would it be worth taking a step back, a little bit of 'time-out' to see if there are alternatives which might suit both you and your dad better? Or even to evaluate that where he is now IS the right place and gain some kind of acceptance or closure for your own sake?

    You don't strike me as the kinda girl to give up!!! Nor will you allow your dad to! You set an example!

    Hugest hugs, Karen, x
  4. PatH

    PatH Registered User

    Feb 14, 2005
    #4 PatH, May 9, 2006
    Last edited: May 9, 2006
    Sadly from my experience this is a 'no hope' disease which we all try to manage as best we can and 10years on I still have so many doubts and fears. When my husband went into his care unit I realize now that I was fortunate he never has once asked to come home.Now in his later stages he does sleep a lot and I have to accept that.He used to love Pavarotti, Andre Botcelli etc and I have left his Cds in the unit which they play ofen to him and I feel or I hope he still gets some pleasure from them ( by the way he does have a single room).He does however have time in the dayroom and at mealtimes he is fed with all the other patients. I have also asked the staff to play his music when he first wakes up and when he goes to bed and I think they have done so.
    During my visits I try to be hands on by massaging his legs feet,arms and hands. Keeps his skin from drying and he just loves it.
    Aine you should put your worries to the staff in charge and maybe make some suggestions as to what you feel you would like for your Dad. Sadly like my husband your Dad is only one of many that they have to care for and we have to be realistic.
    I hope you can be more positive.
    By the way BB1 tonight 11.05pm ' My life on a post-it note.'dealing with early onset dementia.
  5. Áine

    Áine Registered User

    Yes, sort of. Fearing that, as you suggest, they wanting him to sleep to save them the trouble of coping with him being up and about. And anxious that they were keeping him on amitriptyline in spite of the awful effect it was having on him because they wanted a quiet life. What I didn't know at the time, but now know, is that despite the nurse appearing to not have taken much notice of my concerns about him being on when I spoke to her on Friday night, she'd with-held it on Friday and over the weekend, and they'd cleared it with GP to stop it first thing Monday. So what I feared was a drugged up dad, was probably just a sleepy one. :)

    I guess like a lot of other people here Karen, the answer is "yes and no". I hate it when dad seems lost there, and it seems he's never got both hearing aids, glasses AND teeth. Everytime I go there's something accessory missing :rolleyes:
    BUT the staff on the whole are good, kind, friendly etc and I think it's the best of the available options. I managed to get there early today and have a chat with the matron and feel more reassured that they've got their eyes on the ball and are doing the best they can for him.

    I think maybe sometimes I'm just too suspicious or untrusting. Although I suspect that's a side effect of the weight of responsibility that it feels like I'm carrying. :(


  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Best news I've had all day!

    Aine: "I think it's the best of the available options. I managed to get there early today and have a chat with the matron and feel more reassured that they've got their eyes on the ball and are doing the best they can for him."

    :) :) :) :) :)

    "I think maybe sometimes I'm just too suspicious or untrusting"

    Of course, that is a side-effect of loving someone so much - don't beat yourself up on that one too - congratulate yourself instead!

    Love, Karen, x
  7. Angel

    Angel Registered User

    Apr 24, 2006
    Never gonna give you up.. Barry White

    I know exactly how Aine feels. Today I've had tons of tears again. I and a friend went to see my mother who seemed dopey, although still animated in a quieter way because we were there. When I popped into the manager to give some outing money, she casually remarked, ' Did someone tell you that your mother has had her medication (quietapine) stepped up to 12.5mg TWICE a day?' She had only been prescribed the drug 2 weeks ago. I was too weary to argue and complain of not being informed PRIOR to the decision. All along I do realise that the carers, marvellous though they are, are all for an easy life and they prefer to have a sleeping 'client' most of the day whom they have to drag along to the loo or meals, than a troublesome one who happens to still have a bit of a spark in them despite dementia. It saddens me and I find it all so depressing. If I won the lottery I would pay for a companion to live with my mother in her old flat . She is no trouble with me when here for lunch twice a week. It is because she is institutionalised that there are the problems she causes. She took away another resident's zimmer frame last week and urged her to walk. You could say people thought Jesus was mad too! Because of this incident, she has been given the chemical cosh. I know there is no other way out, but it still hurts so much. It is so hard to see the lively cheery strong fit lady she was become weak, dopey and wobbly relying on your arm to hold on to. Thank you to all of you who sent replies to Aine. They all help me knowing that there are others out there suffering as Aine and I are and I'm not alone, as often I believe I am. Love to you all, A.
  8. Angel

    Angel Registered User

    Apr 24, 2006
    My Life on a Post-It note

    TU Pat H for telling us about the prog on BBC1 tonight. It was very moving. I feel the same sense of freedom of swimming in the sea when I ride my bike and I'm only the carer. I forget all the cares about my mother for a while and it feels liberating and invigorating. A.
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    This programme probably ticked more boxes I could relate to than any other I have seen on the subject. Very moving programme that had me working back in my mind to figure how long ago Jan was at that stage. I reckon it was around 1997-1998, though of course the condition varies according to the person, and Jan also has vascular dementia.

    Had moments of worry when she said that she always has the same diary because I have done so since the late 1970s - I'm a person who likes being in a rut! [at least, fingers crossed, I hope that is it!]

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