Worst daughter in the world

Discussion in 'I care for a person with dementia' started by andypandy, Aug 20, 2015.

  1. andypandy

    andypandy Registered User

    Jun 28, 2015
    Well the time came, mum moved into her ch last Monday, we had no choice she needed 24/7 care that we just could not give working full time. We did as much as we could, took turns sleeping (or not due to the numerous trips to the loo) and being there every time we were not at work but it wasn't enough.

    All has seemed fine, she's actually taken to it quite well, it's been more of a wrench for us than for her, UNTIL TONIGHT. We took mum out for tea as we'd not done anything with her as just us girls (mum me and my sisters) for a while due to how she's been, but when we took her 'home' she's cried and told us she just wants to go home (her own home) and that she'll be good, she'l stay in bed, she'll get up early enough for us not to be late for work.

    She's had a good chunk of clarity tonight and what's been said to us has devistated us. I feel like I've let her down, I know in my head she's in the best place (she's in a nice small very friendly place) , but my heart is screaming at me to scoop her up and take her home. She still just wants to be with dad (passed nearly 2 years ago) and says he's not with her at the ch. She said he was with her when she was at her home.

    We know she'll probably has 'left us' again tomorrow and be back in her own little world but this is heartbreaking. Are we doing the wrong thing trying to keep it how it was before the ch where whenever we could we'd take her out on outings or for tea like we have tonight.

    Getting a migraine just thinking about all this and feeling so bad like I do.

    How do we cope with this, or don't you.
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Wow, that's pretty rough Andypandy but if you can't give her the level of care she needs then you have to put her somewhere she can. I wouldn't have had a day out until she'd had a good long period to settle in and some of the memories of being anywhere else had begun to fade. So sorry your day turned out this way.
  3. Worrywart 2

    Worrywart 2 Registered User

    Jul 7, 2015
    Hi andypandy,
    I'm in same boat and it's not a good place to be. My mother is 76 with vascular dementia following brain haemorrhage. Started wondering and not recognising her home as home saying she hated it and her home was somewhere else, she then set fire to something,,, long story but hospital for 6 weeks now a residential home, she hates it. She has to be sedated at the moment as she gets so agitated and tries to leave. She is n her feet all day and only sits down when she collapses from exhaustion. My sister visited yesterday and ended up in tears as she was aggressive, she just wants to go home wherever home is, that's the problem. The csre home have advised us not to visit for a few days as seeing us makes her worse. I too want to scoop her up and take her home but in my head I know this will not work. I have chronic ill health and it's killing me. My sister has young children.
    It's so hard but everyone says it gets better xxx
  4. andypandy

    andypandy Registered User

    Jun 28, 2015
    I'm so sorry about your situation too. I really hope it does get better for both of us x
  5. andypandy

    andypandy Registered User

    Jun 28, 2015
    Thank you x
  6. theunknown

    theunknown Registered User

    Apr 17, 2015
    Oh, andypandy, that really does sound heartbreaking. I'm not sure we do cope with it in the sense that we can think about it logically. It seems to be a question of accepting that there is nothing we can do to make the situation better, so this is where we are.
  7. Liz57

    Liz57 Registered User

    Dec 22, 2013
    Just wanted to say, please stick with it. A few days is no where near enough time for her to settle.

    My mum went into a care home two months ago and for the first few weeks I thought she'd never settle and I felt really really bad. She still has her moments but today I visited and she was laughing and having fun joining in the activities with the other ladies. I know she is being well cared for and is eating well. She looks better than she did for years and everyone has said to me that so do I. I can now enjoy my time with her but relax when I'm not with her knowing she's well cared for, has company and is properly looked after. She needed a bit of sedation when she first went into the home but the occasional request to "go home" now is when she refers to her childhood home - and she's 88 now!

    Please don't feel guilty. You have done absolutely the right thing and it will get better, I promise!
  8. Dustycat

    Dustycat Registered User

    Jul 14, 2014
    North East
    I know how you feel. I felt like the worst daughter in the world placing my Dad in care but we had come to the end of the line. I spent the first 3 months in tears as he hated it. But suddenly there was a turning point not sure what and he is fine now but I wrangled in those early days about bringing him out. Hang in there. It's early days. X
  9. looviloo

    looviloo Registered User

    May 3, 2015
    I'm another one who feels the torturous guilt of putting a parent into care... I wake in the night with it churning over in my head, and it's made worse because dad is still unsettled after 2 months in the care home. At least, that's the way he talks to me while I visit (he moans, and moans, and asks to go 'home'). When I'm not there, he's less able to 'offload' his feelings and is polite and compliant according to the care home staff.

    Dustycat, your post has given me hope that we might reach a turning point sometime soon. I keep hoping!

    It's a horrible situation, andypandy, but your mum is in absolutely the best place for her safety and welfare, and for you too. It's hard, but things will settle, and the hiccups will get further apart. No, my dad isn't settled yet, but we are all adjusting to the situation slowly and it's going in the right direction. I'm sure most of us have had that 'worst daughter' feeling but we're all doing our best, and that's all we can do xxx
  10. Bob'sDaughter

    Bob'sDaughter Registered User

    Aug 21, 2015
    Thank you AndyPandy for your posting. The title caught my eye straight away as that is exactly how I have been feeling this week. I took my father into emergency respite care on Wednesday, with a view to him staying longer, possibly permanently, as he too is now at the point that he needs 24 hour care, even though he is only 66.
    It was a devastating thing to do, and I haven't really stopped crying since. The place seemed nice enough, but during the hour and a half I was with him when I took him in, he visibly deteriorated, probably due to being overwhelmed with new information.
    I'm just hoping that he will settle, and decide that he prefers being there rather than at home. I'm surprised by the physical affect it has had on me though. I don't know if I've maybe been holding everything together up until now, but since he went in I am very emotional and feeling strong physical symptoms of anxiety to the point of feeling very unwell. I think part of it is guilt at wondering whether I've done the right thing, and having that responsibility over my head. And it is also grief at feeling like I've lost him that little bit more now he's not at home.
    Anyway, just wanted you to know you are not alone. I hope things do get better, and easier to cope with for all those who have posted on here. I'm glad I have found somewhere where I don't feel so alone. x
  11. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hello Bobsdaughter and welcome to TP
    I think a lot of us recognise the symptoms of feeling ill once we have a break from caring. I would guess that a lot of it is indeed the effort of trying to hold it all together and now you dont need to its all coming out.
    Be gentle with yourself during this period - its not just your dad that has to adjust, you have to as well.
  12. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Oh Andypandy, I read your story and the tears ran down my cheeks because this was me telling the same story only a few weeks ago.

    Every word you said and others who have answered you, it's me and my sister. We too want to scoop up our mom and take her with us, but we can't.

    My mum has gone from residential dementia to nursing dementia because of her outbursts, thinks she is being poisoned, refusing meds. She does not sit down, her feet are swollen from the constant standing, but then can be quite lucid for a moment.

    We made the mistake of taking her to my sisters for lunch and when we took her back (only 2 weeks ago) we had to literally drag her down the corridor, she screamed she hated us; this is etched in my heart now.

    We have had to realise that the lucid moments are few and that our constant visits cause her distress and as much as it breaks our hearts we have had to pull back to 3 times a week.

    I worry because the home she has had to go into is more challenging behaviour, which she is and she isn't, but I have noticed or at least I think I have, that she seems worse being in a more volatile challenging home. We do not know what to do as we have been told this is where she is now, but I don't think so.

    I hope my mum will settle soon but I don't think she will ever settle anywhere, but we have to let the home take over and let them do their job because going every day as we did makes their job doubly hard.

    If you can, try and step back, just for a while. I know it's going to be hard. I cry all the time, but do it for your mum for now.

    God bless. x
  13. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    Andy and Patricia that sounds so much like mum
    Mum has some lucid moments but mostly not. Mum is in a full dementia ward due to her requiring more attention.
    The last time mum wasn't eating "being poisoned" the specialist stated just let her eat what she will don't force.
    Mum at the moment is rather passive albeit packing her things every day but I still wait for the nasty horrible vitriolic comments to return
    I also reduced my visits to 2 a week. Mum appears more settled that way. She has been in care since May 2014 and the full dementia earlier this year
  14. hoppy

    hoppy Registered User

    May 10, 2015
    Guilt and confusion

    I am feeling the same as you Bob's Daughter. I have just put dad into his first 2 weeks' respite, which has been extended. He will most likely be in full time care rather than come home. I didn't visit for the first 2 weeks and was shocked by the state he was in when I did go.I am an only child and have found the responsibility of choosing a home and knowing he wants to live in his own home, just down the road from me, totally heart breaking. He thinks he is on a cruise and so the CH and I have gone along with this, but he is beginning to ask about going home. I don't know whether to continue with this story or tell him the truth.

    My problem is that although the CH is clean, very pleasant and near my house, he isn't settled and I can't decide if this is typical or due to a lack of any activities to engage him. Also he had stopped eating and begun to put himself on the floor several times a day, probably for attention, which he never did at home, although he has been very anxious and clingy for the last year. He had begun to sit in the chair and talk in a delirious way too. I realised he had a swollen chin, which turned out to be the infection from two teeth which I then organised for him to have removed. He has begun to eat again if I am there, but I can't go every day as it is making me ill. Don't know if I should find another CH or wait and see if he gets better.
  15. Slugsta

    Slugsta Registered User

    Hoppy, 2 weeks is really not long for your dad to settle, especially with the dental infection too. From what other people have said, it can take months, rather than weeks, for someone to settle, so don't do anything rash just yet :)
  16. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    I'm completely with you andypandy, bob's daughter, looviloo, Patricia Alice, dustycat and everyone else who is wrestling with the question 'have I done the right thing?'
    I put my parents into care in July after a prolonged hospital stay for my Dad during which everything went haywire with both of them. They both have AD.
    Three months later and they are still not really settled. And I constantly ask myself whether I've done the right thing or whether moving them to a CH near me (they were 150 miles away before) was for my benefit rather than theirs. I know logically it isn't (although it is better for me having them 10 mins down the road) as SS were about to separate them and I knew this would be devastating. I could have looked for a home-based solution but realistically it was only going to be short term.
    So I know exactly why you feel the worst daughter in the world....but you need to have your Mum somewhere safe and cared for. And she probably won't remember her upset after your trip out ...but the trouble is you will. It's not a good place to be I know that. I've also been told that it will get better as they settle and frankly as their AD worsens and we have to hold onto that. And enjoy the times when your Mum is settled and happy. I'm told that settling into a CH can take months. I think we just have to tough it out and try and feel confident in our decision-making.
  17. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    You have done the right thing. Short term it all feels dreadful, I know. but not long from now you will be glad she is safe and cared for. Repeat after me 'this is the right thing' frequently, until used to it. Our duty is to keep our loved ones safe and you are doing just that.

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