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Terrible week! Mom pushed over - 2 visits to A&E plus stooped over shuffling on Rispiridone

Discussion in 'I care for a person with dementia' started by Daisy pie, Apr 15, 2018 at 11:21 PM.

  1. Daisy pie

    Daisy pie Registered User

    Nov 24, 2016
    62
    West Midlands
    #1 Daisy pie, Apr 15, 2018 at 11:21 PM
    Last edited: Apr 15, 2018 at 11:56 PM
    This past week has been terrible I'm feeling like all the stuffing has been knocked out of me :(
    My poor Mom is sectioned in a psychiatric assessment ward, I noticed last Tuesday evening when I visited that she was walking stooped over and shuffling which is totally not like her, she has good mobility always on the go. I mentioned it to a nurse because I was worried it might be from the Risperidone that she had recently started taking, the nurse said she would mention it to the doctor and I went home.

    I had only been home a short while when I received a call from the ward to say that Mom had been pushed over by another patient. Mom was in agony couldn't stand or walk, an ambulance had been called and she had to go to A&E, they thought she had broken her hip.
    I went with her to the hospital, after they did X-rays they said there was no breaks, Mom was sent back to the ward still in agony, we got back at 4.30am.
    The ward returned Mom back to A&E the next morning beacause Mom was still in really bad pain, still couldn't walk and had high blood pressure of 217, went back in with Mom hours later they moved her into CDU she was there till she was sent back to the ward in the early hours of Friday morning with painkillers.

    Mom is walking but again still in pain but thankfully not as bad as it was, I'm really concerned because when I visited tonight she is again walking all bent over almost like she can't lift her head up and shuffling along hardly able to walk, her voice sounds different, her eyes look droopy, she couldn't even lift her head to look at me, she wasn't even asking me to go home which she has done for the every day for the last 7 weeks!

    She isn't eating, has pains in her stomache, I had mentioned to the nurses she had really dark coloured urine in hospital which she usually has with a UTI, so I thought she might have one but they didn't think so, tonight she went to the toilet while I was there and her urine was still whiskey coloured and smelt bad, but the nurses said it was because she hasn't been to the toilet a lot :confused:

    Im sorry for the long post, I really would appreciate any advice I'm so worried about her, could Risperidone cause her to be bent over and shuffling like this?
     
  2. Tin

    Tin Registered User

    May 18, 2014
    4,407
    UK

    This sounds awful for both of you and very upsetting for you. Check the side effects for this medication, you have mentioned 2 in your post. Can you insist on a meeting with the doctor that prescribed it. Are they trying to find a medication to ease her restlessness? because it sounds like its not working.

    Hope someone with more experience of this medication comes along soon.
     
  3. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,349
    Female
    Auckland...... New Zealand
    Oh your poor Mum :(
    My Mum has recently had a rough time and admission to hospital from her care home with a suspected UTI and subsequent delirium.
    The UTI was suspected as a cause, as she wouldnt cooperate to do a urine sample, and she did have a few antibiotics, but once they managed a sample in hospital it was clear.
    My Mum has been on Quetiapine ( Seroquel) for previous 8 mnths but by the time she was admitted to hospital she was also stooped and leaning to one side.
    They thought she could have had a mild stroke, but a head CT showed nothing.
    In hospital Mums delirium was worse but she was highly agitated and physically aggressive, refusing food, fluids & meds for 4 days.
    Once she started eating & drinking and catching up on a lot of missed sleep ( sleep deprived even before hospital) she was standing more upright again.
    Hope things improve soon, but yes I would insist on a UTI test for peace of mind.
     
  4. 70smand

    70smand Registered User

    Dec 4, 2011
    101
    Female
    Essex
    Hello Daisy Pie, sorry to read your post. Dad has Alzheimer’s and was put on risperidone for aggression a few years ago and it seemed to help with no adverse effects and then he was taken off it. His behaviour gradually became more challenging so he was put back on it with seemingly little effect, so as it was a small dose his consultant suggested increasing it and we started noticing his neck bent over and he started to shuffle with no improvement in his mood and he ended up in a psychiatric unit ( he could become extremely volatile and aggressive). Within a few days he couldn’t walk and was stiff and rigid and getting leg cramps and sweating profusely. This was all within 10 days of increasing the risperidone, he went from walking miles daily to to being unable to stand up without being hoisted. He also got punched by another patient within minutes of us leaving him by another patient who was an ex boxer with dementia! I googled the side effects as dad’s condition was alarming and it turned out he had an extremely rare reaction to the risperidone, but the effects you are describing do sound quite typical of risperidone. They stopped the drug immediately and it took a few day for him to return to normal. He had also been on diazepam, which hadn’t helped in combination either.
    When he came off them we realised that even the low dose of risperidone had been affecting his mobility and coordination as it improved beyond belief and he was commenced on memantine, which helped, although didn’t eradicate his challenging behaviour.
    If you look up the side effects of risperidone you will be able to see if your mum mirrors some of the side effects described.
    A year later dad ended up back in the psychiatric unit and the first thing the staff said who remembered him said was ‘don’t give him risperidone’! He was commenced on another antipsychotic, olanzapine, which he immediately showed side effects too but, not quite as bad so this dr was less sympathetic and wouldn’t reduce it so dad became hunched over and shuffling again, and this has definitely hastened his decline but his mood was good whilst on it. It’s such a horrible trade off. I suspect a lot of the patients brought in were commenced on some sort of antipsychotic as they all walked in upright and then started displaying some strange behaviour, sleeping a lot and walking with a shuffling gait within a week.
    Sorry to go on but I feel so incredibly angry about the lack of treatment options for people with dementia who have challenging behaviour.
    I ended up keeping a diary, logging dad’s behaviour and all his medication changes, with drugs and doses and it has been very useful.
    Everyone reacts differently to medication so until they try something it’s impossible to say if a drug will be of benefit. Risperidone is supposed to be the antipsychotic of choice for Alzheimer’s, but is definitely not for everyone.
    Good luck and be prepared for a fight for your loved one.
     
  5. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    13,092
    Ireland
    @Daisy pie I'm sorry to hear about your mum's condition. What you are describing, the stooping, the shuffling, can indeed be side effects of risperidone. Risperidone is a very useful medication but it does carry risks, and when used with the elderly & people with dementia, it needs to be carefully monitored. We were very lucky. My husband was on 1.5mg of risperidone per day for over four years, and it had no adverse affects on him at all, thankfully. He was seen by the prescribing consultant every 6 to 8 weeks for monitoring.
     
  6. Tragicuglyducky

    Tragicuglyducky Registered User

    Apr 4, 2016
    34
    Hi, my dad was on risperidone for paranoia and delusions before he was actually diagnosed with dementia. The only side effect he suffered from was a slight dopiness (he was a bit droopy and drooled) so he was given procyclidine to counter it. However he is prone to falls and after a particularly bad fall he was stopped over and shuffling about slowly for 2 months. He mentioned his back hurting because of the fall but was more bothered about how he felt more like his stomach muscles were tight and causing him to hunch over, he seemed to straighten up again when he was fully recovered. When we spoke to his doctor about it he explained that risperidone can cause muscle spasms and that there was a chemcal shift that his body needed to adjust to - if I remember correctly he had not too long before had his memantine dosage increased. My own experience is that hunching over sorted itself out and he as back to pottering about the house and walking to the shops as normal
     
  7. marmarlade

    marmarlade Registered User

    Jan 26, 2015
    154
    my hubby passed away a year ago. but the home put him on risperidone and when I went to see him [he had only had 2 tablets] he couldnt walk ,talk hold his head up eat drink they had to get the hoist to put him to bed,I told the carers and the manager I would take full responabilty and they were to stop the tablets.Dr didnt like it but you have the final say,two days later he was his old self again with the dementia,I had several run ins with problems with medication, but kept fighting for him, and you need to do the same
     
  8. elvismad

    elvismad Registered User

    Jan 8, 2012
    122
    Mums just has a review from the Elderly Metal Health team - due to her wandering and anxiety - and they have recommended a dose of 0.5 risperidone (with caution and to be withdrawn if any side effects as she has had very low electrolyte recently that resulted in a hospital stay).
    We are awaiting comment from her GP - this is all so worrying.
     
  9. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    13,092
    Ireland
    See how it goes. It can be a useful medication when used with caution and closely monitored. And 0.5mg is a small dose. My husband was on 1.5, and was fine. Like all meds, different people react differently. Some show severe side effects, and some show none at all.
     
  10. elvismad

    elvismad Registered User

    Jan 8, 2012
    122
    Thanks @LadyA its just progressing so quickly now. Mum has declined a lot in the last couple of months after years of being on a relative plateau. Only in the Assisted Living since Sept and already the Elderly Mental Health team think this is no longer suitable. Its so sad to see her so anxious and distressed. I'm so worried they will have trouble placing her in a care home if she is labelled aggressive and because of her night (and day ) wanderings.
     
  11. elvismad

    elvismad Registered User

    Jan 8, 2012
    122
    Following mums review from the Elderly Metal Health team, we have discussed their recommendations with mums GP are in agreement that the recommended dose of 0.5 risperidone should be started with immediate effect, to hopefully help with her nightly wandering and constant anxiety. The GP has assured me he will be keeping a close eye on mum and the medication will be withdrawn if any side effects. I just want mum to be less distressed. Feels very odd making these decisions for her.
     
  12. Daisy pie

    Daisy pie Registered User

    Nov 24, 2016
    62
    West Midlands
    @Tin thank you for your reply, Its horrible to see my Mom like this. they took her in so they could change her medication to ease the aggression and aggitation she has. They gave her Lorazapam when they needed to, after a couple of weeks they increased the Quietapine that she was already on which didn't work They then took her off it and put her on Riperidone. She seemed ok on it to begin with no side effects, unfortunately there was no improvement in the aggression. We saw the consultant at a meeting last Monday he said Mom is resistant to these drugs and there is nothing else they can try.
    I googled it and found some accounts of people having similar side effects with this drug. I just can't believe the change in her she is like a different person but they are still giving her this medication.
     
  13. Daisy pie

    Daisy pie Registered User

    Nov 24, 2016
    62
    West Midlands
    Hi @Linbrusco thank you, I'm sorry that your Mom has had such a horrible time but glad she improving a bit, it's so hard isn't it, my Mom was also on Quetiapine for a year then they took her off it and put her on the Risperidone which is now causing these problems. They have now done a sample and said there is no UTI which I am really surprised at, she is still getting pain and refusing to eat much, she was eating fine around a week ago.
     
  14. Daisy pie

    Daisy pie Registered User

    Nov 24, 2016
    62
    West Midlands
    Hi @70smand, wow! Your experience with your dad sounds similar to Moms experience, she was also sectioned to try to help the aggression and aggitation she had, I didn't want her to go in but was told it was going to help Mom and she would be ok, apart from the demetia she was physically very active up to last week, she hardly sat down, She is only 71 but now looks a lot older shuffling along and bent over.
    I totally understand your anger about the lack of treatment options and I said the same thing to the consultant when we saw him at a meeting about Mom last Monday, he had told me Mom is resistant to these drugs as they have seen no improvement in her behaviour and would not be trying any other drugs which really upset me. He also told me he thought there would be a cure within the next 10 years as there was a race on to be the first to find a cure, sadly this won't help our loved ones now but does give us a hope for future generations. I will fight for my Mom I know she would have done the same for me.
     
  15. Daisy pie

    Daisy pie Registered User

    Nov 24, 2016
    62
    West Midlands
    Hi @LadyA, I totally agree with you they affect everyone differently, my mom has been on Quietapine for a year with no side effects but unfortunately it didnt help with her agression and aggitation. I had hoped it might be the same for the Risperidone, obviously it's not for her but I'm glad it helped your husband, I have read before on other posts where you talked about the distress your husband suffered it must of been a relief to find something that helped him.
     
  16. Daisy pie

    Daisy pie Registered User

    Nov 24, 2016
    62
    West Midlands
    Hi @Tragicuglyducky, I wonder if this is happening with my moms stomach she keeps getting bad pain there? but they don't seem to be taking notice of it, the consultant has said this drug isn't helping my Mom and that she is resistant to these drugs, I'm not sure why he is insisting in keeping her on it. That was great that your Dad was ok in the end on it, also that his walking improved so he was able to get to the shops.
     
  17. Daisy pie

    Daisy pie Registered User

    Nov 24, 2016
    62
    West Midlands
    Hi @marmarlade I'm really sorry that your husband passed away last year.
    It sounds like my Mom has had a similar reaction to Risperidone to what your husband had, when I visited this evening she couldn't lift her head again, she couldn't look at me as I was talking to her and her walking was really bad, sometimes I feel like I am hitting my head against a brick wall trying to get them to listen to me and they probally think I am a pain but I don't care I won't give up.
     
  18. Daisy pie

    Daisy pie Registered User

    Nov 24, 2016
    62
    West Midlands
    Hi @elvismad
    Hi @elvismad, I agree with LadyA try not to worry to much, my Mom has been on another antisycotic drug called Quietiapine for a year and although it hasn't helped her agression it didn't give her any side effects at all, but this one has not agreed with her but it doesn't mean it will do the same to your Mom, you have an idea now of what to look for if she does show any side effects. I know what you mean it's hard to see your Mom anxious and distressed, I hope the Risperidone helps your Mom with with these problems.
     
  19. 70smand

    70smand Registered User

    Dec 4, 2011
    101
    Female
    Essex
    My dad was 69 and fit and well apart from Alzheimer’s when he was first admitted to a psychiatric unit and one thing I hated was that as a family we no longer had any control over his care. All the NICE guidelines state that all these drugs should be given with caution and stopped with serious side effects. If you go armed with some facts and threats of complaints maybe they will listen to you and stop the risperidone for your mum. It took a severe life threatening reaction to stop it for dad called ‘neuroleptic malignant syndrome’, but why would they keep your mum on a drug that has no benefit, only side effects? Unless they consider a ‘drugged up’, incapacitated person with dementia less trouble.
    I do feel that these acute beds are like gold dust so we are so grateful someone is trying to help a desperate situation that the Drs seem to just want a quick fix and then ship our loved ones out!
    We thought there was no other medication suitable to dad and were surprised he was sent back into the psychiatric unit. At the time we felt lucky, but he had a different consultant who seemed very heavy handed with the medication dosage and refused to listen to us as family. Once on olanzapine dad once again was hunched over and could barely walk, or feed himself but his mood was good and no longer aggressive so this was considered a success by the dr and he wouldn’t even try to reduce the dose even a little. The olanzapine also caused dad to have a seizure and probably a pulmonary embolism, which was not properly diagnosed or treated whilst in hospital, but that’s another story.
    The Drs kept asking me if I had found a nursing home yet as he was the ‘best one in there’ which made me very angry because to which I replied ‘I don’t care about everyone else, he’s still not half the man who walked in here!’. There was no consideration for quality of life at all. And finding a nursing home who would take dad with a history of aggression was easier said than done!
    Dad remained on the olanzapine for over a year and has just come off it after lots of attempts to reduce it unsuccessfully because he became agitated as soon as it was reduced. He is now on Trazodone 50 mg but can barely stay awake on it - we’ll have to wait and see if this continues when his memory clinic consultant reviews him in a few weeks time. Now he has forgotten how to walk and the deterioration in him is huge over the past year, which, although is inevitable with his Alzheimer’s, I still contribute the speed of it to the olanzapine as he has had Alzheimer’s for about 14 years - he’s 72 now.
    I am constantly searching for trials on other drugs for aggression and aggitation that do not have all the side effects on the internet and feel there is little I can do medication wise for my dad but good luck in your continued fight for your mum. I read something about gabapentin being helpful but there is not enough research on it, although to be honest I would try anything as all the recommended drugs have not been much good. Whilst I embrace news of a cure in the future there is little out there helping my dad, your mum and others like him, which is obvious from this site.
    By the way dad often also had leg cramps whilst on risperidone, which we never realised must have been caused by the risperidone as they stopped as soon as the risperidone stopped.
    Sorry to go on again for so long but arm yourself with as much information as you can if you feel a drug has no benefit then insist on evidence as to why your mum should stay on it. Once again, good luck and let us know how you get on. What on earth would happen to our loved ones without us here to fight for them?
     
  20. 70smand

    70smand Registered User

    Dec 4, 2011
    101
    Female
    Essex
    Im also guessing this is also rather all consuming for you too if you are up in the small hours posting, take care of yourself too x
     

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