1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Marsupial15

    Marsupial15 Registered User

    Jan 19, 2013
    Hi everyone,

    Apologies for a long post - please bear with me! I would just like to get some opinions from people that understand the situation we're in.

    Basically Mum has EOAD, possibly Lewys Bodies, and after a steady decline for several years had a rapid deterioration last October and had to go in to a care home at the end of the year. This was all quite sudden and done as an emergency. We found a home that we were happy with but they didn't have spaces at the time, so she went in to a linked home on a respite basis. As it turned out, Mum settled in the respite home really well, so we made that arrangement permanent. Fast forward five months and Mum had worsened even more, and that home (which was just a care home, not nursing) said they couldn't cope with Mum any more and they were moving her to the linked home - the original one we had chosen.

    The first home wasn't perfect, and I can see where they struggled - mainly getting mum to take medication and eat her meals. They also weren't trained to deal with her when her behaviour became increasingly challenging and I also suspect some paperwork might not have been 100% up to date. BUT the carers were always very caring and I really did feel like the majority of them had Mum's best interests at heart. They would always show an interest in our family's wellbeing and it was common to find a carer painting someones nails, reading a paper to someone, or leading a singsong (on top of the more formal activities).

    Anyway, Mum has been in the new home for four months now. It's a nursing home and I do feel that they've managed to stabilize Mum's weight loss and are more on top of the health care side of things. Mum is generally always clean (with the exception of her nails!!) and dressed in her own clothes (we found this a rarity in the previous home as things got mixed up!). I don't have any concerns that I can particularly put my finger on, and certainly don't have any major safeguarding worries, but I just can't help feeling that it's not such a caring environment. Carers appear to do very little actual caring - they will engage with residents to feed them/take them to the toilet etc, but the rest of the time seem to sit around doing paperwork. They've made no effort to get to know me and my family, and when I've tried to engage them they don't seem that interested.

    Mum's dementia is extremely severe now and she is incredibly agitated. She spends a lot of them time pacing and shouting for help (even though it's unclear what help she would like). I never see a carer walking with her, trying to calm her, she's generally just left to pace the corridors.

    On the one hand I kind of understand - Mum is getting increasingly aggressive and it does seem that having company can often antaganise her further. This home is much bigger than the previous one, and all the residents are severely ill with complex needs, so the need for nursing/medical care is probably greater than the need for the softer side of care, but I just can't help feeling disappointed and like it's just not quite right.

    I really don't know what to do about it - a move would be incredibly distressing for Mum which I'm sure would set her back, plus I'm not sure there are many other homes in the area that would even take her given her behavioural challenges. She also receives CHC funding, and I'm not sure how much say we have in moving her when we aren't funding (we don't have a H&W POA annoyingly).

    I've got a meeting with the manager of the home set up for a couple of weeks time to see if I can address things with them, but really I'm not even sure what to say to her - it's not like there are examples of anything wrong that I can point to. Just this feeling that there could be more of a culture of compassion and care perhaps.

    CONGRATULATIONS if you've read this far, and if you have any thoughts please do let me know, I'd be so grateful to hear what people have to say!
  2. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    Hi there, I'm not sure I'll be a great deal of help. My initial thoughts are "swings and roundabouts". We always seem to be in a situation where some things are really good but on the other hand there are bits that we would like to change. After reading your post my feelings are your mum is well cared for medically. Her social needs are the difficulty but there again if there was intervention it could distress your mum. With my mum I find it is increasingly difficult to break through the "Alzheimer's Wall" when she is upset and fixated on something. The carers can't manage it, sometimes I can after about an hour of trying but most times I just have to wait for it to pass or for my mum to eventually fall asleep. I visit everyday and try to give mum the individual attention for longer periods of time that I wish the carers could have time for but they simply don't have. It's not perfect but the best we can do. Before mum went into care I was 24/7 day and night. Mum couldn't be left for a minute it was exhausting and I also have a husband and family that I didn't see unless it was at mum's side. At least now I have regained some life but it doesn't ease the guilt or stop me from thinking, wondering and worrying about her. Thinking of you and I expect other members will be able to offer more advice xxx
  3. Marsupial15

    Marsupial15 Registered User

    Jan 19, 2013
    @YorkshireLass Thank you so much for reading my rambles and responding! I think you've summed it up, it's swings and roundabouts, and we'll never find anywhere perfect - and we can't keep moving her from place to place in the hope of that happening! Your mum sounds very lucky to have you visit every day and be able to give the attention that carers can't offer. Sadly, I'm not in a position to be able to do that, although I do go once a week. And I say sadly, but I'm not sure I mean that - visits are awful, I dread them. Perhaps my want to find the perfect care home is in part to ease my guilt at feeling like a bad daughter for thinking this! Thank you so much again for sharing your experiences, it's much appreciated.
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Welcome to the world of EMI nursing, tons of paperwork, aggression and just not having the time to do all the caring as the staff are constantly fighting fire just to keep a lot of seriously affected people from harming themselves or other.
    Just a quick calculation from my wife being sectioned and the time I spend visiting daily means I've spent something over 1,300 hours visiting her in either a secure unit or an EMI nursing home so I'm not new to the concept of people who have challenging behaviour.
    If I sit down and watch the staff it's not like they don't care, my wife's hair and nails are well kept, she's always dressed in, normally her own clothes but not always.
    The staff are a little more detached because they have so many challenges and so little time, it took time to get to know them but now I go out for a cigarette with them at fag time, often I start the visit by going to "smokers' corner" so before I go in I know who's OK and who's best avoided, what's for lunch and sadly sometime who's passed away.
    I'm not the only one, plenty of the other visitors are on first name terms with all the staff but it does take time, EMI nursing is a whole different dimension to life in the average care home.
    Look at the staff and look at what they're doing and have to do often for 12 hours a day, in their position what would you do? Once you do that it may be hard to actually say what they're doing wrong because they're having to react on a moments notice to much worse behaviour than you'll find in any care home.
  5. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    No problem we all need to support each other as best we can. The guilt monster is around whatever we are able to do. I dread going to see mum, Everyday is different and it's not really my mum but I love her all the same. Tears in the car as I drive there and yet more when I drive home. Then I try my best to be a wife, mum and grandma. It's like living in parallel worlds and is certainly not how any of us want to be. I've done 18 months with mum in care and prior to this i never ever believed this would be our lives. If I'm honest I wish it was over. Sending a hug xxx
  6. pixie2

    pixie2 Registered User

    Jul 21, 2018
    Does her room have paperwork with a family communication bit you can fill in with requests such as can parent have nails cleaned this week?
  7. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    Greater London
    Hi, I read your post and while my Mum is not at that stage, I get you. Like you I just want the care part there for Mum. My Mum had a care agency at home where Mum was a task, they may as well have come in and cleaned the windows, for all the engagement they had with her. Now changed agency and one carer is lovely with Mum, but not so great at the job @YorkshireLass swings and roundabouts.
    @Kevinl has given very wise words, look and learn, of which I definitely will take heed of, thank you Kevin.
    Thank you for sharing I have more learns, sorry I haven’t helped, if your Mum will accept it, please give a caring hug from me. X
  8. looviloo

    looviloo Registered User

    May 3, 2015
    Like Dollybird16, I totally get you too... I've recently had to look around (thirteen!) nursing homes to find one for my dad, who has to move out of his residential home, and my overall impression has been the detachment of the staff on duty. I think what Kevin says makes perfect sense, that perhaps it's the only way for staff to deal with the everyday challenges, situations that I know I would never be able to cope with.

    But what we want for our loved one is a little more compassion, isn't it? For me, dad is the most important person, but there are many other 'most important people' living in the same home! More staff would help, but then costs would increase. It's a difficult balance. Although I can't help thinking that the 'care' side of things should ultimately trump everything else.

    I'm sorry, I'm not helping... but I do share your frustrations. I have now found a nursing home for my dad that I think will be best for him, but it has a long waiting list (a good sign?) and there are still some hurdles to get over. His current home meanwhile is becoming impatient for him to move, and struggling to care for him. Like you, I feel niggly about it all, but short of caring for him myself (which obviously I can't do) then I have to accept the way it is. Good luck, I hope you can make some progress, and perhaps get to know one or two of the carers there, if you don't already? x
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello @Marsupial15

    It must be extremely distressing to see your mum in this state of constant anxiety and although medication is nowadays a last resort I do feel this may be the only option to ease her torment.

    What you say about the health of other residents in the home leads me to believe staff are trained not to become emotionally involved with residents and families. Considering the severity of their conditions it would be difficult for staff in some care homes to remain unaffected by deaths and severe progression of the illnesses if they were too involved.
  10. Marsupial15

    Marsupial15 Registered User

    Jan 19, 2013
    Thanks so much everyone, I really appreciate your thoughts and comments.

    @Kevinl What you say makes a lot of sense, and I had wondered similar. And you're very right - I applaud anyone that works in these settings, it must be entirely unfulfilling and sometimes terrifying! So a slight detachment is perhaps to be expected. I think I need to make more effort to get to know some of the carers myself, I'm just not very good at it when they seem so aloof. I will certainly try though as I think it will reap rewards - and make it easier to mention the odd thing without making it a big deal (like the fact her nails are dirty, but I dread to think Mum's reaction if anyone came after her with a nail file!).

    I think the staff are wary of engaging with Mum in case it triggers anything, or they don't know how to - or like you say are trained not to engage too much. It just doesn't help because all the residents are so ill she can't properly interact with any of them (and her communication is so limited in itself now too). She probably only has an average of 3 or 4 visits a week, so I feel like most of the time she has no real personal interaction at all - which can't help with the agitation and upset. A real viscous circle.

    @YorkshireLass I really do sympathise with the parallel universe and I too wish it were over - Mum has no quality of life at all any more. It's such a dreadful thing. I just hope you get enough hugs and happiness from being a wife/mum/grandma to distract you and help you focus on the positives.

    And everybody - a big THANK YOU, all your comments are food for thought and I'm just sorry so many of you are, or anticipate being, in a similar situation. Lots of best wishes to you all and your families.
  11. jmp423

    jmp423 New member

    Jul 19, 2018
    You are not alone in your concerns. What I would like is someone to care for mum in the same way I would if I could! Mum has been in care for three months and has deteriorated in that time. She is doubly incontinent and has paranoid delusions. She is aware that she is somewhere she does not want to be and asks frequently to be taken somewhere else.The staff are kind but ‘detached’. I just feel so horribly guilty. I know that if I was single I would have been unable to see her go into a care home but I am in my sixties with health problems of my own and other family responsibilities. I know that mum as she was would not want me to feel like this- she certainly avoided care of her own mother. I hate visiting her.
  12. Marsupial15

    Marsupial15 Registered User

    Jan 19, 2013
    Well it turns out they weren't just niggles, and I was wrong not to have been concerned about safeguarding. Social services have launched a formal investigation in to the care of several residents, including my Mum. The Police are involved and are leading. I am devastated. My lovely, kind, generous Mum who would have done anything to make sure I was happy, safe and secure has been - and continues to be - at risk because of a choice I've made. I'm beside myself.
  13. Louise7

    Louise7 Registered User

    Mar 25, 2016
    Please, please, don't blame yourself. Your Mum wasn't placed at risk because of a choice you made - she was at risk because those who should have been caring for her and safeguarding her didn't. Hopefully she will now be well cared for and won't continue to be at risk now that the authorities are involved.

    I had a similar situation when Mum was placed in a home by the local authorities after leaving hospital. I didn't have any choice over the home but as soon as I visited there was something 'off' about the place but I wasn't sure what. Similar to your situation quite a few of the staff didn't seem particularly caring. Mum was subsequently moved after 3 weeks due to safeguarding issues.

    We are all doing the best we can for our loved ones so please don't feel that you are to blame for the actions of others.
  14. Juniorjunior

    Juniorjunior Registered User

    Aug 13, 2018
    Hi. I have no experience of any of the issues you have raised on this thread but felt compelled to post.....
    This is not of your doing. This was others doing.
    This role of caring for our loved ones brings enough anguish but please don't feel you are to blame in anyway. Louise7 expressed it much better than me. Please be kind to yourself.
    Sending my best wishes to you and your mum.
  15. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    Your instinct had already told you something didn't seem quite right but couldn't put your finger on exactly what it was... so you were already working hard to do everything you could to find your reasons for that...there was nothing at that stage that you could have done more...so absolutely you should not think that. At dad's NH when he was there most of the staff were kind and caring even to the most challenging even the physically challenging...because they could see and had got to know the lovely person being masked by dementia and I very rarely saw any staff interact with anything but compassion in a difficult role. No excuses because staff should always be so...but maybe they were disillusioned by the way the care home was run...poor leadership...lack of training etc...and this manifested in the way they interacted with residents. Perhaps..although wrongly..agency staff have a here today another home tomorrow distant attitude but the managenent should ensure they work to the same high expected standards as permanent staff.

    Hopefully the situation will change immediately now the home is being investigated however if the same staff remain and I see from another thread you have asked the question about moving when CHC funded...perhaps that would be the best option if you are able.
  16. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    East Midlands
    Please don’t feel guilty about this. Your instinct was right to feel something was amiss & congratulate yourself on that. Now work with these agencies on doing the best thing for your mum.
    I know what you mean about sometimes things feeling not quite there. I still think my mum is in the best place for her, it is a nursing home.
    I was keen to place my mum in a good CQC rated environment.

    This next bit is in no way intended to be rascist but it is an observation of mine.
    There seem to be several staff there of a Indo Asian origin who although they seem to do their job, do not show much empathy with any resident. Some of them don’t speak English that well either.
    Their manner can be quite brusque & I saw this in another care home & I didn’t like how they came across.
    This is strange as a lot of people from that ethnicity also work in the hospitality trades & are known for their warmth & service attitude.

    The best interaction with people is the staff there that are English. The nurses & activity co-ordinator are everything that they should be.

    There was an incident with my mum where she had a large bruise on her arm, a few months ago which apparently was investigated but nothing came out of it. There was some implication that a carer may have been involved. Obviously I was perturbed by that & certainly if there are any other incidents then I will be onto them.

    I do have some concerns about my mum’s legs as I am not sure her cellulitis is being properly managed. It is very difficult to stay on top of everything for sure.
  17. pixie2

    pixie2 Registered User

    Jul 21, 2018
    I'm the same. I feel that when I'm not there mam is just dumped in a lounge in a wheelchair whereas I would talk with her or watch a fave film and make her comfortable. I don't think she's as difficult as they do. I also think she can stand up better than they think. Using so many aids suddenly is upsetting it takes away independence and makes me more upset too. Things are rushed and onto next resident. Charts ticked etc. Don't get me wrong 90 percent good, I'm just having a crying day. I find it hard when some staff say so matter of fact so and so can't or won't do something when we as daughters or sons know with love and care and time they can. I dearly wish I could turn clock back and have mam with me

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