Residential home nurse has reviewed mum's pain meds & won't consider my suggestions

Discussion in 'Middle - later stages of dementia' started by callyb, Nov 27, 2015.

  1. callyb

    callyb Registered User

    Nov 27, 2015
    13
    UK
    I'm new here! I'm sorry this is a long post - I'm really bad at being brief!! I just moved my parents into a residential home of my dad's choice (that I liked too) because he couldn't cope with my mum's increasingly difficult behaviour at home (she has late stage dementia - Alzheimer's officially though we think mixed - vascular too). They moved in almost a week ago and I've spent 3 afternoons there this week trying to get them settled...yesterday the manager said I'd have to 'leave them to it' soon and 'get on with my own life'....?! (I have no intention of going in this often normally, but my mum is distressed most of the time and my dad is not coping well - and it's their first week!!!) My main concern is that I thought we'd picked a home that seemed to be person-centred and considerate but the day after they moved in, my mum (who has spinal fractures from osteoporosis) was crying and squealing in apparent pain and I asked for her to be given codeine (which she's written up for) so she was, and she seemed much more settled. The next day I was there when she started to get very distressed again and I asked again for codeine (mum can't tell us she's in pain, but I also have old spinal fractures from an accident and I've had chronic pain for many years from them and I'm pretty familiar with the physical signs...and I know my mum's body language enough to know when she is in pain). Anyway, I was then told that the nurse in charge had reviewed her pain meds and put her on 4 times a day paracetamol as that was more effective than occasional codeine and there would be some coming round at tea time. (They put my dad on it too, even though all he's ever used for occasional pain has been some anti-inflammatory 'rub'....!) Mum continued to cry with apparent pain (and because her hallucinations were getting worse - she sees unfriendly little animals...:() until I left, feeling unwilling to push it when the nurse was so adamant we try the paracetamol first ("wouldn't you rather she wasn't given strong meds she didn't need??!") Yesterday I spoke to her again and expressed I really wanted her to be offered codeine if she continued to cry and be distressed on the paracetamol. They said 'oh yes' in that way when you know they are not really going to, and sure enough - today, mum's crying again when I phoned, and she's not getting any codeine. I know that recent research shows paracetamol is not effective in lower back pain or arthritis, and I also found research that shows pain meds can reduce agitation in dementia sufferers by up to 17% with none of the side effects of antipsychotics. My mum's hallucinations are worse than ever, and my dad says he doesn't know if it's pain or the hallucinations that are causing her distress - I think it's that her pain causes her hallucinations to be worse and the distress is probably from a bit of both from her body language. I think they should try her on codeine, particularly as she's just moved and is probably having a flare up of her back pain from all the change, and if then she's more settled then surely that's enough evidence that it's probably the pain causing it and to keep up the codeine for a few days then review it perhaps. But this seems to be becoming potentially a huge battle. I told my dad I'd leave it for the weekend (I'm also unwell with a chest infection and bad asthma right now so could do without another 1hr round trip to the home this afternoon!) and try again on Monday, but now I'm feeling so bad because I think my mum's sitting in pain (and might be all weekend) and no-one is helping her. I'd thought of asking to get a review by my mum's new doctor (although the nurse I think works with the doctor who the home registered my mum with), but I'm so new to this and I don't want to alienate the home or make life harder for my parents because they think I'm being difficult, but I'd hoped the home would have been happier to listen to the people who know my mum best, but I've come across medical staff with misguided attitudes about keeping people from any painkiller stronger than paracetamol before many times and i'm worried this is going to be one of those situations...all the care staff seem to defer to this nurse-in-charge...am I wrong?!!! Any advice anyone...?!! :confused:
     
  2. meme

    meme Registered User

    Aug 29, 2011
    1,955
    Female
    London
    I don't think the "nurse in charge" has any right to change your mothers medication. I would insist she is given the codeine that relieves her pain..bypass the nurse and go to the Dr/gp whoever is higher up and will act. You do know your mother... and have to fight for her unfortunately...good luck
     
  3. nitram

    nitram Registered User

    Apr 6, 2011
    18,905
    Male
    North Manchester
    "I don't think the "nurse in charge" has any right to change your mothers medication."

    The codeine would have to have been prescribed by a doctor and if the prescription said PRN rather than a specific schedule the nurse in charge has ever right to decide if and when it is given, subject to a recommended maximum dosage.

    if you consider paracetamol to be insufficient you should voice your concerns to the GP especially if you have H&W LPA.
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    oh dear poor you and feeling so unwell too, i'm so sorry

    you do really need to insist that they give her the meds she is used to until it is reviewed by a doctor and that you want to be present - some CHs give doctors the info that they want them to have so if you possibly can you need to be there particularly if the nurse and doctor are working closely together - they have to tell you which day the GP visits so that you can be there and if you are not happy with the outcome then the best option would be to speak with her consultant. I too don't think the nurse has the right to change meds. Meanwhile your mother is in pain - back pain is so horrid no wonder she is so unsettled. I agree you need to fight for your Mum.

    My other concern would be the manager" manager said I'd have to 'leave them to it' soon and 'get on with my own life'....?!". This is outrageous - it is up to you how much time you spend with them and of course you want to be sure that they are happy, settled and in the right place. It wasn't even said kindly. I'm so sorry. They really don't have the right to speak to you like this but sadly if that is the Manager's attitude it is rather difficult and I think you will have to make a stand. It is a requirement that CHs listen to relatives - they do know their parents best particularly in the early days of settling in. To be honest it doesn't sound as though you can make it worse for your mum anyway. Do you have someone to support you? Someone who will go in with you and tackle this together, anyone, a friend or a relative. Key thing is to be very straightforward, very factual, 'this is how it is' and don't get upset - it gives your power away.

    Do you have power of attorney for health and welfare? Whatever, your parents need an advocate and it seems as though that task is going to fall to you. I really hope you are feeling better soon and that you do have some support.

    keep posting xxxx others will be along soon
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,237
    Female
    South coast
    I have hesitated posting this because Im not sure how to phrase it and I dont want to upset you. I could also be wrong.
    Have you asked the carers how your mum is when you are not there? The reason I ask is because your mum is not yet settled and making a move to a care home can be incredibly distressing. Is it possible that she is not actually in pain? Quite often, in the early stages, seeing a relative can trigger off intense distress with crying/screaming. When mum went into her care home I was advised not to visit for the first week to allow mum to settle.
     
  6. callyb

    callyb Registered User

    Nov 27, 2015
    13
    UK
    Thank you so much...

    for your kind replies...I haven't been back for a few hours because I did get quite poorly myself and had to try & put it aside for the evening, but now I can't sleep again and it's been so lovely to find these replies and thoughts. Meme and nitram, I suspected this was the case but it really does help to hear someone else say it too, and thank you for your answer too canary - I do know what you're saying but I've watched my mum from the door of her room so she didn't know I was there and although she's not as agitated all the time her posture and her body language are clearly telling me she's in pain - I don't know why I'm second guessing myself, maybe because I don't want to have to 'make a fuss' and partly because I don't have an LPA - both my parents have adopted the 'head in the sand' approach to planning and have put it off so it's too late for me to get one for my mum - I'm seeing a lawyer next week about my dad's but at the moment I'm my mum's advocate only because my dad is allowing me to be because he's too distressed to. But I will go over on Monday and ask for a doctor's review if I can't get clear replies from the nurse - I said to my dad that's what I thought we should do, and although he's much keener not to make a fuss in case it makes it harder for him, I'm just gonna have to bite the bullet I think...
     
  7. callyb

    callyb Registered User

    Nov 27, 2015
    13
    UK
    Thank you fizzie...your kind words really made me feel less alone tonite and I do appreciate you taking the time to write. Your advice makes a lot of sense and I'm going to go in as calmly as I can on Monday when I feel a bit better myself! I hate having to leave it over the weekend but I know that the way I feel at the moment and after the week we've had I won't be as rational as I'd like and I may get upset - and I agree that's the worse thing I can do so I will wait. I don't have support unfortunately - my brothers have helped a small amount with the actual move, but they don't really understand the issues and generally prefer not to rock the boat. And the manager's words were pretty much the last straw - I had high hopes for the home being the right place for my mum but I'm feeling much more wary about it now - I guess I'll just have to fight for her as much as I can and if it turns out to be not the place I'd wanted then we may have to move her. But I won't feel bad about being with my mum as much as I want to right now - she's deteriorated hugely over the last month even though she doesn't seem to have any infection or anything specific causing it (that's why we've needed to get my parents into a home quite quickly) and we seem to have been catapulted into 'late stage' very suddenly. I know the move won't help but suddenly I'm not sure how much longer we'll have, and the very least we can expect is that she doesn't spend what could be her last weeks/months in pain. I will write my points down for Monday and be as calm as I can - but you're right, I'll ask for a GP review if necessary and consultant if that doesn't help. And I think there will be a new dementia nurse from the Mental Health Team at the hospital that we can ask to see too. It's a shame she's moved areas so all her medical team will change - but this one nurse shouldn't have the power to make her uncomfortable...thank you again...I am glad I posted...:)




     
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,293
    SW London
    Surely it is not up to a nurse to review anyone's medication. Isn't this the doctor's job? I would make a point of seeing the GP.
     
  9. callyb

    callyb Registered User

    Nov 27, 2015
    13
    UK
    Am going to request a review on Monday...not a great start in the residential home...I'd hoped for better, but with everyone's feedback I feel a lot clearer that yes, the nurse is definitely overstepping...!

     
  10. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Good for you. Try to rest up this weekend. Sometimes people do deteriorate at first when they go into and home and the pain won't be helping at all so ONE DAY AT A TIME :) Get the meds sorted out to YOUR satisfaction and your Mother's pain situation will improve and then you can think about the next step. If you are well it will all be easier to cope with and you will sort it out - they are pushing the boundaries.

    I'm sorry you don't have any support, sometimes just taking a close friend along gives you moral support - that makes it tough but use us as your support meanwhile. Thinking of you xx
     
  11. callyb

    callyb Registered User

    Nov 27, 2015
    13
    UK
    Thanks again Fizzie...feeling rotten right now but your post cheered me up again! It's just a bit of a shock to find I'm gearing up for a fight with a home I thought was so nice just a week in! I'd really hoped they would be more sensitive and understanding but I've had a lot of run-ins with medical people over the years and have come across nurses like this a lot - they seem to make some kind of value judgement on someone who requests opiates (even codeine) rather than making do with paracetamol or NSAIDs... I do worry that my dad will not back me up though - he's already expressed that the nurse probably is wondering why I'm questioning her when I have no medical background, even though it doesn't take a medical background to see when mum's not getting the meds the doctor prescribed... (I think that came from my sister in law! :rolleyes: - families!!!) so I'm worried he will tell me to stop advocating for her and let the home get on with it...I so wish I'd pushed for that POA because I know my mum would have wanted me to be her advocate, but I thought we had time to wait a little longer. I'm now a little worried about what happens if the nursing home doesn't work out and I have no formal 'power' in the situation - I know they are applying for a 'deprivation of liberty' order - I worry that will mean they could stop me moving my mum to another home if it came to that? I thought I'd researched the residential homes so well but I'm suddenly feeling rather panicked that it's an 'out of the frying pan' situation! My dad was so not coping at home, and he really needed mum to be in a home, but I guess it opens a whole new can of worms!!! I guess I have to take this one step at a time and hope that it all gets resolved next week, and that I'm worrying too much. I have some essential oils to take in on Monday that I've read can help with agitation in dementia - my mum used to love oils, so I hope that will help too (might calm me as well!!!!). And you're right - I do have a very good friend whose mum had dementia a few years ago - I think it's time I called her....

     
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I really understand how you feel and it seems to me that once the pain situation is sorted out you will be able to relax. I think you just need to ask your Dad to let you follow this one up and then tell him once you have sorted out the pain medication you will leave them to settle in and make up their own minds (I don't mean 'leave' them, definitely not, you will need to keep an eye on this one, but reassure him that you just want this ONE thing sorted and you are sure he would want your mum to be pain free). Tell him that you need him to back you up and support you on just this one issue and see if he will agree to do that. Then you will feel better. Explain to the Dr that you want her back on the pills that made her pain free and that she is your mum and you are very close and you know that she is in pain. Beg him/her if you need to, to return her to the meds that suited her so well and if not you can ask for a second opinion.

    I am sure that you will get through this on Monday. Can you get some Bach rescue remedy from the shop for you tomorrow or some Kalms - I find that when I am really stressed these just take the edge off?

    Such a lovely idea to take in some oils for your mum - and perhaps some lovely hand cream to do a gentle hand massage for her (and maybe one for your Dad too?? that would treat him lol or is there something that would make him feel that you are really spoiling him? Perhaps you could take him out for a treat for an hour?) you all need spoiling at the moment because it is such a stressful time but it will pass and you will get it sorted xxxxx Thinking of you xx
     
  13. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    462
    North West
    Hi Callyb,

    I have been taking one codeine at night for five years following a bowel operation. I can also take one during the day if needed. Codeine was prescribed for me for specific reasons by the surgeon and it has helped me through. I recently forgot to get a new prescription and consequently went without for two nights. I wasn't in pain but felt very shaky and uneasy. However, I would prefer to take one codeine at night rather than 8 paracetemol each day.

    Feel so sorry for your Mum in a new environment having her medication taken away suddenly. She could be suffering from withdrawal. Hope you can get them restored to her.
     
  14. callyb

    callyb Registered User

    Nov 27, 2015
    13
    UK
    Thank you again Fizzie - and for your pm - apparently I'm not allowed to reply to that until I have 10 posts but I will as soon as I'm able! Funnily I'm already floating in Kalms, and my Bach Flower Remedy is in my bag always! Both I learned from my mum who brought me up on homeopathy and natural healing - which is ironic now what she really needs is some codiene!!! But again, your suggestions on handling my dad are sensible and appreciated. Unfortunately my asthma/chest infection has now gone into overdrive and I'm now struggling to stay on top of it until the meds kick in...I'm just hoping I can stay out of the hospital and keep breathing til they do...am so frustrated at the timing - but I will just hope that I get significant improvement and can deal with things tomorrow or very soon at least...so pls forgive the brief post but thank you again and pls know your support, and that of the other posters here, means more than you will know.. :)

     
  15. callyb

    callyb Registered User

    Nov 27, 2015
    13
    UK
    Thank you rhubarbtree, and I totally agree - 8 paracetamol daily cannot be good for anyone's liver I'm sure - and one codeine is far less damaging surely...I hadn't thought about withdrawal - I don't think my dad was giving my mum the codeine regularly enough before the move to cause that but it's possible...and that would be horrid for her...thank you for posting...

     
  16. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Oh my..............................i do so hope you feel better soon. Do take care of yourself xx Hope those Meds give you some much needed rest x
     
  17. callyb

    callyb Registered User

    Nov 27, 2015
    13
    UK
    Thank you!! Sorry, i didnt mean to sound dramatic...this happens every so often when you have asthma - mine's usually under control fine, but the occasional winter bug lays me flat and sometimes lands me in hospital - not this time luckily ...I had a horrid weekend but I'm finally starting to breathe ok again so I'm gonna try & get down to the home today...fingers crossed it will all work out! Not helped however by amazon letting me down on the essential oils - they were supposed to arrive on saturday and there is still no sign of them - it seems they have new couriers that everyone's complaining about...looks like a trip to Holland & Barratt on the way! Anyway, I'm feeling much better about what I need to do...helped mainly by the support from you and the other posters, so thank you again and I'll post when I get back! :)


     
  18. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    So glad you are feeling much better and up to tackling things. Such a shame about the oils but a great idea so looking forward to hearing how it all went. Thinking of you x
     
  19. swoops03189

    swoops03189 Registered User

    Dec 1, 2015
    4
    mrs a

    did you not get the chance to meet with the staff as say take your parents there for an hour or so, then take them there for some tea? This slowly gets them used to different surroundings. In one of my placements the husband was separted from his wife as she caused him distress. This was a sister home (dont know what else to call it. Owned by the same person). But im sure when they were both taken in they still had there doctor to visit when required. You have to stand firm for your parents now as they cant do it themselve.
     
  20. callyb

    callyb Registered User

    Nov 27, 2015
    13
    UK
    Well, I didn't get down today because my asthma got bad again and I didnt dare risk driving etc...and I can actually hardly talk at all so that would be a bit difficult - but it's killing me not to be able to get there & sort it, so tomorrow I'm going whatever it takes..at least my oils arrived, so I can do something to make my mum feel better i hope...

    Mrs a, we visited the home three times in all - once when I went to check it first, then twice with my parents when they spent the afternoon both times...I used the AS factsheet and a quesionnaire from another website and they said all the right things about listening to the people that knew my mum best (us!) and seemed the best of the half a dozen places I looked at...so that's why I'm so frustrated that one nurse now seems to be in control of my mum's wellbeing who doesn't want to hear what I'm saying...

    The latest news from my dad today is that the same nurse is now concerned about my mum not eating and drinking, and being so distressed 'for no reason' (PAIN???!!!) that she wants to move her to the nursing floor and put her on nursing care (which presumably means peg feeding). I am beyond furious at this point, as I've been the contact person from the beginning with the home, and I've asked them to keep me posted on how my mum's doing and yet I've had not one phone call from them about her - and when I rang on Sunday asking about her they just said 'oh yes, she's fine'.....???!!!!!!

    Anyway, tomorrow I will take a deep breathe (if I can...) before going in to deal with it all. Luckily one of the senior care workers I like phoned to day about some paperwork I need to do tomorrow, and I'm seeing her first, so i'll ask her what the situation is with the nurse who seems to be controlling everything/everyone and see whether I'm right that she is or whether I've got the wrong end of the stick (all the staff seem to defer to her)...and then if my mum doesn't get her codeine I will request a doctors visit and ring the dementia nurse to come in and ask for a full review of her pain relief and back pain and for her to be checked for any infection (I know that can exacerbate symptoms - and pain for that matter). I'm not leaving tomorrow until I'm happy that my mum is pain free and will remain so. I hope that it's straightforward and I don't encounter resistance, but if I do I will do whatever I have to to make it ok...

    It's a very sobering experience though to find a care home that seemed in the visits to be so caring and person-centred for want of a better term, that turns out to so quickly to be so wrong...

    Thanks again for your comments all...(and specially Fizzie x)
     

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