Mum not settling in care home. Help and advice needed please

Discussion in 'Welcome and how to use Dementia Talking Point' started by Patricia Alice, Mar 2, 2015.

  1. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Hi, my sister and I have just registered as we are feel like we are walking in treacle every day. We had been mum's carer (she is 90 with vascular dementia and sundowners) for 3 years, covering 13 hours a day. In December we moved her to a lovely care home which is for residential dementia. She is not settling at all well, saying she is frightened all the time. She is very agitated and has started to become angry, shouting to call the police and that she is being held a prisoner against her will. She tells us that we are bad daughters. She was recently started on sertraline but we have noticed in 3 weeks her mood has gone down, not up; she is also on rispiridone, which was started a week ago. The home hints that they may not be able to keep her and we will be back to square one searching again. Mom's dementia is not low category or high category but somewhere in between both and no-one seems to cater for this stage?? We are at a loss what to do in case we are asked to move her. Any help or advice would be greatly appreciated right now. Thank you for listening.
  2. Louisagap

    Louisagap Registered User

    Mar 6, 2015
    Hi there Patricia. I don't know what the answer is. I actually wonder whether the rispiridone might be making it worse but I have no idea. We put my 90 year old mother-in law in a nice hone recently that caters especially for people with dementia and she, quite rightly, says it's like being prison and she wants to come and live with us which is not an option in a little two up two down when she can't do stairs either. It's terrible going to see her as she begs us to take her away. She is on some drugs and they seemed to suit her for a while but now she seems, in a way more lucid and just very down that she is in a home and we feel terrible. I guess we need to talk to the home about it more but we've got to the point where we're thinking should we try and have her at home but I think it would just be really difficult and who knows, she might not like that either?! So I'm not much help to you. I feel both you and I need some input from the medical people - or rather the elderly mentally ill team. I'll see where I get to and try you again if I get anywhere!
  3. nessieck

    nessieck Registered User

    Aug 30, 2014
    I was going to start a similar thread but have hopped onto the back of yours. Sorry. In my case, things are slightly different. Mom has moderate AD but with only me to care for her, I was starting to get angry/sad/desperate...all those things so got mom into respite but we've now decided it would be in everyone's best interests if she stayed. The care home are doing the DoLS assessment but mom is insistent she wants to go home. She had a lucid(ish) day yesterday and we went out. I tried to explain the reasoning behind her staying in a CH. "If such and such happened at home, what with would you do?" "Well, you'd do it!" "And what if I couldn't or I wasn't around?" She seemed to take it in in the moment!!! Today's another day. That's my issue...i know she's a nightmare at home, but to the outside world, moms very plausible. She only in assisted living; she can come and go as she pleases, but I know I'm being judged (paranoid lol) or at least I feel I am. To the world at large, she doesn't look ready for any support. I know it's not the case. Wonder if others have similar experiences?? Sorry for highjacking your post lol. Ps mom was on Risperidone before she went into respite. She was vile vile vile on it if it helps any xx
  4. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Oh yes, I think its quite common. Mum has no idea who anyone is or where she is (shes in a CH, but thinks its her own home), or pretty much anything BUT she is still very good and fluent at chit-chat. Ive had several people visit her in the CH and said to me that they dont think she needs to be in there and why have I done it?!! Er, because she wasnt eating, or drinking, or washing, and was wandering the streets at night in her nightly, lost, and had got into an argument with her neighbor about the bins ...............
  5. nessieck

    nessieck Registered User

    Aug 30, 2014
    Nuff said!!!!
  6. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Hi Louisa,
    Thank you for replying. This is something we hear every day too. In fact a lot of the people at the home are saying it also, so I think this is just something lodged in the brain, and that is to be "at home." Also the "prison' word is used by mom a lot, also fetch the police, I am being held against my will.

    We decided in December that we could not go on any longer providing care, it was making us both ill, and we have families also. I think it is a decision no one comes to lightly, but to care for someone with dementia at home must be one of the hardest things to do. We are very happy with the home we have chosen, and hope she can continue to stay there.

    The rispirodone was stopped on Thursday and yesterday was a better day, so we can only live in hope.

    I did not realise until I joined this forum just how many people are in the same boat.

    I hope you come to the right decision and keep her at the home because it is not something I could do again. We put our life on hold for two years.
  7. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Hi Nessie,

    Thank you for replying. You are most welcome to highjack my post. We are all in the same boat here. We are forever crying, sad and angry. I have come to the conclusion I am grieving, I know she is still here, but she is not the mom I used to have and I think I am missing that so much.

    My mom was in assisted living up until December, but we could continue no longer.
    My mom can be very plausible too. She loves to chit chat with anyone and looks to others may be not quite as bad as we make out, but they are not dealing with the dementia, like you and I are.

    The rispiridone was stopped on Thursday and yesterday she seemed a lot better, but her moods can change very quickly. So hopefully it was the rispiridone causing the major outbursts.

    I have been up and down from our local A&E all week, due to falls, banging her head, low heart rate, high temp. So I am sorry I did not reply sooner.

    I hope you find the right decision. I know we did, as long as you can handle the emotional blackmail, which we get daily.
  8. nessy22

    nessy22 Registered User

    Nov 22, 2014
    I just started a new thread, lost the connection, then found your one when I logged in so I am another hijacker. Mum (85) is also in CH ( into month 3 ) after no longer being able to live at home and refusing all carers. She is also in this middle area, sometimes very good, great at chit chat, great at following steps at keep fit class, but memory and ability to do task, even reading now, deteriorating. She is not settling and very frustrated an complaining. Especially hard is not being about to get out on her own although she does get out walking with someone most days. Can't fault CH.

    Mum started taking Donepezil 3 weeks ago for trial period. I saw that Risperidone was mentioned on this thread but not this one. I know it is difficult to say, but her frustrations seems to have heightened and almost become obsessive. She now wants to go home ( which was not the case before ) and even to come to live with me now ( which she refused for past 2 years ). I just don't think I can offer to do this now as I have no family back up and am already exhausted. The guilt of course is unbearable. I would also have liked to take her on holiday this summer but not sure it is a good idea now.

    Does anyone have any experience of Donepezil like this and taking someone out of a CH for a hoiiday?
  9. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Hi Nessy22

    The more I read on here the more I realise how many others are in the same boat as my sister and I.

    Mom was taken off Rispiridone a month ago as she started to become aggressive to the point of violence. She is still on Sertraline and Lorazepam. These keep her calm-ish, but she cries constantly. It breaks our heart.

    Today was another bad day, 2 hours of sobbing and calling us everything under the sun. I know this is the dementia talking as my mom would never do this to us otherwise.

    We have been advised against taking mom on holiday as the unfamiliarity will only unsettle further. We have been asked only to take her out for the odd couple of hours here and there for now and not on a regular basis until the weather gets better. But this is based on our mom, your mom may be different although she is showing similar traits to mine.

    Donepezil is Aricept? I cannot answer this as my mom has vascular dementia and from what I was told it does not help this.

    The guilt, in part I think is us because do they really know anything anymore?

    I hope you find the answer

    BRIDGETJ Registered User

    Dec 2, 2015
    Mum not settling in care home

    Im another hija ker to this thread Im afraid. My mums been in care for 4 months now and is also on Risperidone. Is not settling. She hates me because she thinks I put her there. As it was I drove her there it was a best interest meeting that decided she couldnt go back home.
    I leave crying nearly every visit after seeing my mum so unhappy confused and fearful. I know we couldnt manage her at home but I hate hate hate watching this deterioration in my mum. Shes always tired and wants to go back to her room after a very short visit from any family member. I dont know whether shes just shutting herself away and giving up or if shes really tired. She refuses to undress for bed and lies on the bed with her shoes on. The staff are concerned were concerned but mums very stuborn when she wants to be. I feel shes on a state of alertness and she feels less vulnerable dressed. I wish with all my heart shed settle and be happy but I suppose Im being unreasonable and shes having a real battle mentally and I shouldnt expect her to be happy.
    I dont know what to do for her and Im sorry Im not any help to any of you posting on here but sometimes its nice to release some pent up emotion
  11. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    Oh Bridget I do feel for you as my mum is exactly the same. She has been in care for 8 months and is still unsettled and unhappy. She is refusing to eat much now and just keeps saying she wants to give up and can't go on living like this anymore. She also keeps asking me to take her somewhere else to be looked after but, of course I know that would just cause more confusion for her and I am happy with the care she is receiving in her home. I just think it is the illness and losing her independence that is causing all her unhappiness and I suppose in her mind she wonders if moving somewhere else will improve this but, of course it wouldn't. Like you, I feel so guilty that I could not look after any more and have cried too after many visits. It is the look in her eyes and face when she pleads with me to do something that just distresses me so much and I wish I could wave a magic wand and have my mum back. But we have to be strong and try and come to terms with this awful illness as it won't go away and I know I will have to prepare myself for this long and distressing journey. I am now not visiting her every day, as I was at the start, as on advice from the staff, friends and family it was not helping either my mum to settle without me and my health was suffering too. It is very hard, but I know mum is being well cared for and the home will ring me with any concerns if I am not there. I hope things do get better for you Bridget. Please keep in touch and let us know how you are. TP is invaluable for venting our frustrations and emotions and the help and advice I have received over the last few months has been a great support for me. Take care xxx
  12. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    Mum not settling in care

    I'm hoping to join in a thread that offers help on dealing with not settling in CH, I thought my mum whose 84 been in care for 7 months was the only one who was begging me to take her home etc, I now thanks to this forum realise it's the disease talking, I have battled with the emotion of thinking I can bring her home , I can do this , she will be happy with me ..... Etc ! I know that it's not possible and I am not alone in having these tough visits . This forum is so valuable to understand what's involved . Thinking of all those who have this horrid disease hanging round them
  13. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    My mum never really 'settled' in the way others have described. She just became very apathetic and showed little interest in most things, my little grandson excepted.But she had been miserable at home and frequently said so and in any case had always been a bit of 'glass half empty' kind of person.

    I got on much better emotionally once I realised that it was not in my power to make her happy, or but I could make sure she was safe and well-cared for. And that was enough.

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