at a loss what to do

Discussion in 'ARCHIVE FORUM: Support discussions' started by j.j, Oct 14, 2007.

  1. j.j

    j.j Registered User

    Jan 8, 2007
    things are so bad for us at the moment mam is in assesment unit for 14 weeks and is just going from bad to worse, she has been on so many different drugs to keep her calm and nothing is working, she is on sodium valproate, remynl, zoplocain to sleep and injection on top to calm her when she is really bad. she walks the corridoors all day kicking the doors has lashed out at other patients and nurses, she is only sleeping a few hours and is up again kicking the doors, the residents whom live near to the unit have complained about the noise mam is making well into the night. The only drug that did help a little was risperidone but the side effects were awful. I truly don,t think she can go on much longer like this, she is losing weight her face looks haggard and we dont know what to do. We go every day and take her for a walk outside and she loves it not a pick of bother while walking in the sun or wind. I know nobody can have an answer on tp but just to get it out to people who understand helps. x
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear j.j.

    Have you asked why this is so? If your mother is so agitated in the assessment unit, I would expect it to continue when you take her for a walk.

    Love xx
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    As Sylvia says, it does seem that the assessment unit is the problem. Is it possible to move her somewhere else, not necessarily home? Have you told the medicos she's fine when she's out walking? They may not want to admit that the unit is agitating your mother. Try to approach the staff in a non-confrontational way, I find staff tend to be quite sensitive.

    I've just moved my mother to a new room in her old unit & keep finding her at different tables for meals. When I mentioned this to the nurse on staff, she denied it. I had to point out that during the evening shift, she's placed in a different area. Since she's a day nurse, she wouldn't know this. But she continued to deny it until I had repeated myself several times & she finally started to listen to me.

    So unfortunately, on top of all our troubles, we have to handle the staff also.

    IMO, I would investigate the possibilities of moving your mother.
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006

    Am I not right in thinking your mother ended up in assessment due to overmedication? Possibly all these medications are necessary, but it does look like she may be on that slippery slope again.

    Have you possibly tried writing down your comments re her lack of agitation when she's outside? Sometimes, it seems impossible to get a point over verbally to people whose hearing seems to be selective (just gone through this myself with a doctor), and sometimes writing it down makes the point more effectively than frequesnt repetition.

    Best wishes
  5. susiewoo

    susiewoo Registered User

    Oct 28, 2006
    Bromley Kent
    When My Mum was in the asessment unit she was on a mixed cocktail of drugs. She was also constantly walking and agitated although not openly aggressive. One day when I went in, and I went everyday, she was unresponsive and unable to talk or focus...I thought she had had a stroke and alerted the staff. They couldn't have been less interested. I decided she was over medicated as the pupils in her eyes were pin point.
    The next day I saw the consultant and asked for the medication to be cut down but they kept saying they had to leave her on the same dosages to settle.
    I kept questioning the reasoning of this as I was frightened that in this state Mum would fall and injure herself...they finally agreed to cut the meds.
    Keep asking questions....challenge what is happening and note everything this in front of the staff so they are aware what you are doing......fight your corner if you feel things are not accept what they are doing is right just because they are the doctors.... you know your loved one far better than they ever will.
  6. Cymbaline

    Cymbaline Registered User

    Aug 23, 2007
    All I can do is agree with what the others have posted. My family had a less than positive experience with an assessment unit during the past few months. Even though your mam has Alzheimer's, she quite possibly still has the ability to know which staff members she likes and dislikes. She sounds like she's unhappy in her surroundings (an understatement I know!).

    All I can suggest is that you keep a close eye on proceedings in the unit. You can't assume that the staff in there have her best interests at heart. Ask questions. Watch them like hawks. Take notes.
  7. sammyb

    sammyb Registered User

    Sep 19, 2007
    I have no experience of nursing homes (yet!) but after 5+ months of my husband being in 3 different hospitals and 6 different wards, I can only say monitor the best you can, write letters to the doctors about your concerns, leave notes in your mum's care notes for the staff to read and ask to speak with them and the doctors whenever you feel the need. Be polite, nice, non accusatory, but firm. I do know that had I not done all of the above my husband would, I suspect, still be on tramadol and morphine and hallucinating like fury, would most definitely still have a catheter and being treated for UTI's, and certainly wouldn't have been diagnosed with anything other than depression. Doctors don't always like you standing up to them and it takes a lot of courage to do so because you always think they must know best. But my friend always says 'Trust your instincts because we weren't born with them no reason'. Good luck.

    Love from Sammyb
  8. j.j

    j.j Registered User

    Jan 8, 2007
    thank you all for your kind replies, i sometimes feel i take from tp far more than i can give at the moment, i come across big hurdles and dash to the keyboard in a panic. Unfortunately mam had a fall last night in hospital unit and cut her head fortunately it was not serious, but WE could see it coming. Today the staff, and i must say some of them are wonderful, said they had tried walking with mam and found her to be much calmer when with someone. I think what you said jenniferpa is right and again to many drugs, they prescribe one to sleep and one for agitation and another for something else and before we know where we are we are back to square one because we do not know which drug is doing what. If mam is still as agitated by friday we are going to ask for all drugs to be stopped to get a clearer picture of what is what. Thank you all, x
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi j.j
    please don't be concerned because nobody is counting.

    That is the strength of the TP community - there is always someone there to give when we need, for a while, to receive. :)
  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    j.j, you are talking so much sense. I've been working on John's care plan with the charge nurse at the NH this afternoon, and he was saying exactly what you are.

    Firstly, over-medication causes loss of balance and spatial awareness.
    Secondly, agitated patients need to walk, but need someone to walk with them.

    This is exactly what happened during John's UTI. Unfortunately, hospital staff often don't have time to give patents the attention they need, but in an assesssment centre this should be possible.

    Have you asked to see the risk-assessment sheet for falls? There should be one, and if the risk is assessed as high, and it certainly sounds as if it is, then the medication should be looked at.

    I'm sorry you're having to fight this, it's stressful enough, without having to fight over medication. That's supposed to be what an assessment centre is for!

    Don't worry about your posts, we're all happy to help all we can, just as you support others when they need it.

  11. jacqueline100

    jacqueline100 Registered User

    Jun 16, 2007
    Hi j.j,

    Sorry to hear about your troubles my dad is also in an assessment unit and at first we felt that dad was getting worse. However after 6 weeks he does seem to be improving. I would suggest that you keep a diary as it helped us pinpoint positives (like going for a walk) and negatives. This helped us present dads case when a meeting was held to discuss treatment, like you we sometimes felt our comments were ignored but try to stick with it and present your worries calmly and with evidence to back it up. Putting things in writing does seem to give it a more official bent as far as staff are concerned.

    Hope things improve for you and your family soon

    Kind thoughts Jacquie
  12. TinaT

    TinaT Registered User

    Sep 27, 2006
    How sad to read of your difficulties. My husband has been in a long term EMI unit for nearly 4 months now. At first I accepted everything I was told unquestioningly. It has taken me a long time but at last I am beginning to have the courage to speak out about his care. I'm glad you made your post as it has helped me as much as you. I see from the threads that there should be a care plan which I can ask to read. I wouldn't have known this if you hadn't posted. So, don't think you are not contributing when you 'rush to the keyboard' - you and the replies you receive help many, many others. xx TinaT
  13. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Tina, the care plan should be drawn up as soon as possible after admission. We're working hard up here to get through to hospitals and NHs that the primary carer should be involved in drawing up the plan. We're having limited success. With the hospital, they didn't consult me at all, though I did insist on being involved with the discharge plan. I suppose the fact that it was an emergency admission made it more complicated, but we've still a long way to go.

    At the EMI unit, I've been involved at every stage.

    You have the right to see it at any time, whether it's hospital or NH.
  14. nice

    nice Registered User

    Aug 24, 2006
    My mother was given amisulpride and now is a joy to be with, it cut out all of the pacing, violent rages etc. She has VD, and has been on just one 50mg tablet of amisulpride a day for nearly a year now and it's done wonders for her mental state.
  15. j.j

    j.j Registered User

    Jan 8, 2007
    mam update

    Thank you for your replies to my post, the assesment unit has brought in some extra staff so mam can have one to one a lot of time to try and alleviate her agitation. When i went in on saturday mam has a very bruised face with a black eye! Looks awful but no one knows what has happened. Her bed has had to be removed from her room with only a mattress to sleep on and i fully understand why this is but it is nevertheless upsetting. We have asked for the sodium valproate to be stopped because we couldn,t see any benefit from it and mam has been started on olanzapine again. We are hoping and praying it does something for the agitation aggression and hallucinations that torment mam at the moment.
  16. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Dear JJ,

    First of all do not worry about taking more from the site than you are giving. I'm the other way round at the moment, thankfully, and probably haven't got as much to give as I got (if you see what I mean?).

    I am so thankful that my mum's assessment unit was not like yours, and others who have posted - they were absolutely brilliant. Mum wasn't a problem to them behaviourly, but several were, and the staff coped with them admirably. I recall at one of the meetings they held on the ward for carers, one woman was so apologetic that her mother was so violent that I almost cried for her, and then when I saw her on the ward visiting her mum, I realised how awful it must have been for her, cos her mum was, indeed, very violent, to furniture, the staff, and other residents. My mum said "that woman is really nasty" and all I could say was "she doesn't realise it, mum, she doesn't know what she is doing, she doesn't mean to be nasty". I just couldn't believe this awful woman was the mother of the lovely lady I had just met - but of course I was new to AD then, and I now realise that the awful woman was probably once an extremely nice lady.

    We do have to remember how they were, don't we? Not to get sad about (though we do), but to remind ourselves of the care they now deserve.

    I can only add what others have said, if you don't think your mum is getting the right support SAY SO. It isn't always easy to do so if you are not a very assertive person (as I am not), but sometimes a friendly word "I am concerned that......" "Is it possible that......." Who could I contact to discuss it further?". are reasonable things to ask without getting shirty.

    Much luck and love,

  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi jj

    I'm glad the unit is taking more notice, and giving your mum some one-to-one.

    I hope the change of medication helps, and she sttles a bit. Keep us informed.


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