1. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Long story here.

    Because of my mother's aggression, agitation and violence in 2006, which resulted in her being sectioned in the fall of 2006, she was put on a lot of different drugs to try & control her behaviour. It's been a long process and she was taking high quantities of meds for quite some time without any noticeable adverse effects.

    About late fall/early winter 2007, Mum started getting quite sleepy. She was even drowsing during meals - while eating! I mentioned this a few times to the staff. The drowsiness continued. My dad died in Guatemala Dec 27 so I was gone for nearly two weeks & had lots of things to keep me busy for several weeks afterwards.

    The staff became concerned with her swallowing. I pointed out she was sleeping a lot & maybe that was the problem. They got the speech therapist in to check her swallowing. God bless that woman (I've forgotten her name) but she said Mum's swallowing was fine, Mum was simply over-medicated.

    So the "Let's reduce Doris's meds" dance began. Because of Mum's violence in the past, the staff was really loath to reduce any of her meds. I got the geriatric mental health team in (again) and after about 3 months, we started (FINALLY) to reduce the meds. One thing I found out is that Mum was getting lorazepam every morning at 5:30 am., presumably to keep her properly drugged up for morning care. It must be much easier to deal with dead weight than with a 71 year old woman who's been confined in a wheelchair for nearly 2 years. I got rid of that. I also got of the anti-seizure meds. When I say I got rid of, I worked with the geriatric team from the hospital & got them to recommend these things.

    By the way, the anti-seizure med was prescribed off-label for Mum's behaviour. She's never had a seizure that I'm aware of.

    Lo and behold, we started getting somewhere. Mum is awake and alert, she's saying a few words (not making sense but that's okay), she's focusing on me when I talk to her. She even fed herself a few spoonfuls one meal. It's better all around.

    Then one nurse thought Mum should go back on the Epival (divalproex is the generic name) as she said Mum was starting to get agitated. I got the home's dementia nurse to check Mum & she said she felt Mum was a lot better off the meds.

    I was informed a week or 10 days ago that Mum is suffering from TWO UTIs and is now on 2 different antibiotics. Do you think those idiots might consider that TWO UTIs would cause confusion, agitation and general upsetment in an Alzheimer's patient?? NOooooo, because they such morons.

    What brought this all on is my imbecilic aunt (God help me) called me today to say they were going to start Mum on a low dose of Epival as she had a long chat with the house doctor today. I know I was upset but I thought I was reasonably well-contained. Apparently not - because my aunt quickly got off the phone - unheard of behaviour for her.

    I instantly phoned the home & spoke to the doctor. He thought my aunt was the POA (read the bl**dy chart, you rectum you) so since my aunt said it was probably a good idea, he thought that was consent. I quickly disabused him of that notion. We had a fairly good conversation and I reluctantly agreed to the Epival. But 15 minutes later I phoned back and told him to discontinue the order. I told him I would be setting up a meeting with the director of nursing & a few other people there to sort out what is a physical issue.

    My mother was drowsy for months. She didn't speak, she didn't focus, she couldn't feed herself. She was over-medicated and I lost all that time I could have had with her at least saying a few words and focusing when we spoke to her and feeding herself a bit. This are not big achievements in general but they are so huge to me.

    So although in principle I agree that meds may be necessary, I am thoroughly annoyed, angry, irritated and evilly p**ed off with current events. I feel that my mother's behaviour nearly 2 years ago is still influencing how she is being perceived and treated now.

    I've made the first call to get the meeting organized. God help them, as I am my mother's daughter. If they think she's trouble, wait till they deal with me, who is not demented (yet).
  2. gigi

    gigi Registered User

    Nov 16, 2007
    East Midlands
    Hello Joanne,

    I can understand your anger..

    I cannot understand how your mum can have TWO UTIs..?

    At the same time?

    Love gigi xx
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear, dear Joanne.

    I just wanted to say that I completely enter into your feelings over this. And what exactly is your aunts problem? (you don't need to answer that). I suppose it's fortunate that she called you so you could put a stop to this "plan". 2 UTIs? Well of course that's going to contribute to her confusion. Duh. In fact, even a major dose of antibiotics might just do that (I was once on antibiotics for a UTI and actually forgot how to write out a cheque :eek:)
  4. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Oh dear Joanne - what a load of morons you are dealing with. I do understand cos it was similar when David was in hospital a few months back.

    I wish there was a way of getting these folk on track.

    Good for you for fighting your Mum's cause - I am so sorry it is such a nightmare for you.

    Keep us posted and rant on and on if you have the need.
    Love Jan
  5. connie

    connie Registered User

    Mar 7, 2004
    Joanne, Can quite understand the anger and frustration you must be feeling.

    If it helps to let off steam here, well thats partly what we are here for.

    Dear Joanne, your comment:
    really made me smile (although I realise the issue is no laughing matter). 'Mother's daughter......I can detect more than a touch of your dear dads indomitable spirit there'
  6. hendy

    hendy Registered User

    Feb 20, 2008
    West Yorkshire
    Dear Joanne
    I can only say that reading your post about mums over-medication resounded completely with my dads story. He too was paranoid, aggressive etc.He had a very complex diagnosis. I spent two years visiting a sleeping man. I could have had those two years of converstaion with Dad. He could have watched his very young grandchildren growing from babies to children. Yes, he was very poorly when given the meds orginally. But I now believe he was over mdeciated for too long. I think it is sometimes called a 'chemical kosh'
    I share your anger. I'm sorry
    take care
  7. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Go get 'em, Joanne.:D

    Why do so many of these 'professionals' assume we are all thick, and that they can walk all over us?

    Picked the wrong one there, Joanne!:D

  8. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    Don,t get me started:mad:
    I beleive that Ron has been given the wrong medication for a very long time.
    It is a long story, won,t bore you with it. Ron now takes none for his Parkinson,s and I have to say, he is better for the lack of medication. Everyone is different, so I do not recommend this for all, but his consultant agreed on Tuesday this was the best course of action, and I did this myself;) Ron does not have bad dream,s now, and does not see thing,s:), and he is a little more alert.
    Barb & Ron XX
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Oh Joanne

    I don`t envy these people when they come face to face with you. But they will deserve every ounce of your anger, for what they have taken can never be replaced.

    Drugged for convenience. How often does it happen?

    Joanne, I`m so sorry you have been deprived of some life with your mother. It is unforgiveable.

    Love xx
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    I must remember that one! ;)

    Good on yer, Joanne. I have sworn these last few weeks especially - it would be ME needing specialist care not my mother ...... I'm not sure what the treatment is for apoplectic fits - in my case usually brought on by my aunt or the medics (I thought doctors were supposed to be clever - how about a degree in common sense as a pre-requisite for training?) 6/7 weeks ago I was told mum had throat infection/possible UTI and viral infection ... you know where I am now ....... if we don't badger and bully the docs just don't listen ....

    And mood I'm in right now - if you want to spit - I'll spit with you - in fact - here's one coming straight over the Pond to you ...... with love and hugs, Kaz, x
  11. andrear

    andrear Registered User

    Feb 13, 2008
    HI Joanne

    I have not to date had anything to do with nursing homes etc. but why has someone listened to your aunt in the first place? Sorry, if I sound stupid but surely they should be some sort of system in place that they only take notes from someone i.e. yourself. I am dreading the time/day that I have to consider somewhere if at all for my dad.

    Love Andrea
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    Good go you give them hell . spit away :D ( in privet of course )

    sometime it does make one wonder if its just the staff want a easy time , your mother in a wheelchair for 2 years and they need to still medicate her! sounds to me its just the staff that can't meet her challenging behaviour .

    OK yeah if your mother showing sigh of being distress , well they is medication for that , but why use medication to Zonk her out .

    Let us know how you get on at the meeting .
  13. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    I'm calmer now

    Andrea, the reason why the doctor spoke to her is that she's been going faithfully for over 5 years (like me - I have to point out quite sharply to her at times that I see my mother as often, if not more, than she does) and she seems to be always present. The doc confessed it was his fault - all the nurses & PCWs know that I'm the POA. He won't be making that mistake again.

    Don't get me wrong, folks, overall I have been very satisfied with the care my mother has been given. The issue is that one of the daytime nurses was on the unit my mother was on when Mum was at the height of her violence. So I think this colours her perception of Mum's capabilities. Apparently Mum can be grabby in the morning - the way a little baby is grabby. I suggested they give her something to hold.

    I am not saying I will never give permission for meds to calm Mum down. I simply want to give it more than a few weeks. Plus, let's get the UTIs out of the way first and let's see what happens.

    Sylvia, I bet it happens to a lot of people who don't have someone to fight for them. And it's a fight. Fortunately, in Ontario the POA is the be-all and end-all when it comes to decision-making. That's why I was able to tell the doc to cancel the med order. To be fair to him, he actually seemed relieved.

    Jennifer, my aunt has the intellectual capacity of a goldfish. She also has the tenacity of a rabid pit bull once an idea actually makes it into her head and will go on and on and on about whatever moronic thing she's picked up on. She has no spouse, no children and a very limited social life (gee what a surprise that is :rolleyes:). She spends her time buying things and returning them 5 or 6 times because they're not "right". She complains constantly and bitterly about grocery stores, how all the food she buys is rotten, she's fighting with her landlord regarding a drafty door (she's in a seniors residence geared to income) and I could go on and regale everyone with stories about her but it's best done over vast amounts of alcohol. Here's just one - several years ago the bee in her bonnet was that she was convinced that someone was breaking into her apartment and trolling through her underwear drawer.

    It's 8:30 am here and I am happily waiting for a call from the home. I'm much calmer now and I'll start preparing my list of questions and suggestions for my meeting. I don't expect they want to see me too soon but I will be available whenever they are. I have a fabulous boss so I know I can go there at the drop of a hat.

    I will be calm, logical, rational and I will crucify anyone I must to get the care I want for Mum.
  14. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Joanne,
    I feel for you and your Mother. These blasted Doctors & Staff who THINK it is best to keep our loved ones on long term medication for their convenience make me so angry.

    I check Peter's medication on a regular basis and Doctor & Consultant do have a meeting with me to discuss situations.

    Wishing you the best of luck with your meeting.
    Best wishes
  15. andrear

    andrear Registered User

    Feb 13, 2008
    Hi Joanne

    'Andrea, the reason why the doctor spoke to her is that she's been going faithfully for over 5 years (like me - I have to point out quite sharply to her at times that I see my mother as often, if not more, than she does) and she seems to be always present. The doc confessed it was his fault - all the nurses & PCWs know that I'm the POA. He won't be making that mistake again.'

    Glad to hear that. Sounds like she thinks she is more in control of the situation than you. I hope that she realises the problems she is causing you by her interfering.

    Love Andrea
  16. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    A monkey wrench in the works

    I did get my call today. However, the nurse was reporting that Mum had grabbed a resident's hand as he/she walked by and repeatedly banged it against the table on her wheelchair. Apparently they had a problem prying her fingers off the person's hand. I do believe that.

    The nurse did seem to have a faint "I told you so" tone to her voice, as she was the one who asked the doctor about giving Mum the meds in the first place. I riposted by playing the "I'm burying my father's ashes tomorrow so I'm not making a decision until Monday" card. I also asked about the UTIs causing agitation etc. She volleyed back with "The antibiotics are finished so we should have seen an improvement." I lobbed back with "But are the UTIs cleared up?". They'll be testing soon so I'll look at that too.

    This was the second time I was offically told about mum's aggressiveness so I've asked that Mum's file be faxed to me today at work so I may discuss everything with my sister on the weekend, as my sister is the other POA. I'm sure we'll come to the decision to put her on something but I will put in writing that I want her on the minimum dose and I don't want the dose increased. The nurse (also called Joanne, isn't that a kicker) said Mum was more relaxed but still alert on the minimum dose twice a day so we'll see how that goes.

    But why oh why did Mum have to do that? Why can't she settle without medication? She's in the last stage, probably has only one to two years left and she's still fighting. And here I was posting about calm waters a few weeks ago. Well, they were calm a few weeks ago.

    Bless Mum, she has so much determination and fight still in her.
  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Oh, Joanne, wouldn't you? I bet you'll fight to the last breath!:D

    I know they can't have your mum attacking other residents, but I bet the staff have a sneaking respect for her! The staff in John's home adore the ones who fight back.

    Bless her indeed! I hope they manage to caml her without turning her into a zombie.

  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    #18 Margarita, Jun 13, 2008
    Last edited: Jun 13, 2008
    When my mother went into a emergency respite in a nursing home near me for late stages of AZ in 06 for 3 mouths. there was a man that would grab anyone hand that was walking by , he two would grab people hands very tightly as they walk pass him and would not let go of the person hand & would swing the person hand up down not letting it go .

    He was not medicated, the nurses would position him in a place that he could not grab at people as they walk pass him , but still be included in sounding of other residents .

    Don't ask why you know why , it’s a common symptom of dementia .
    ( sorry to sound harsh ) but Y is a crochet letter and you ought to know better .

    Don't let that make you feel that way with her "I told you so" tone to her voice "

    I would telling her you know what my mother like , can't you just position my mother in a place that she cannot grab other people hand as they walk by , she may just want to connect to someone & is expressing it in the wrong way , are your staff Not trained in how to handle someone with AZ , who are challenging without medicating them

    You or your mother are paying theirs people to provide a service to your mother so make them provide it in the way you would want your mother to be cared for .

    Your doing the right thing by your mother , stick to your guns in what medcation you want your mother on . I can undertand you must be feeling low because of burying your father's ashes tomorrow .

    Good on your mother :D is all I can say , even if she does your head in & the staff she sounds just like my mother .
  19. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    My sister & I did discuss everything at length & she did read the files I had brought. We will (reluctantly) agree to putting Mum back on the meds but only on a minimum dose. Also, I will stipulate that the dose is not be to increased without my PRIOR consent. I'll also point out that they were advised to decrease the meds by the specialist team in January but didn't start doing so until April. So all med changes will have to be approved by me (or my sister) in writing.

    I'm playing hardball now. I will be very polite but I don't want the over-medication again. So, I feel this is the only way to really keep a tight check on things. I'll also be asking for the med charts periodically as I don't trust them. I mean, I do get the bills but they're always 1 to 2 months behind.

    We'll get there eventually.
  20. May

    May Registered User

    Oct 15, 2005
    Sorry to hear you are having such a tough time of it with the meds situation. Have to say, not had that to contend with and the home Mum is in tend to try and use distraction & dementia management techniques rather than over medicating.
    My Mum is and we have a soft toy that the carers give her although she has once or twice' got' them, they just tells us they consider it part of the job bless them.:rolleyes:

    Hope you get things sorted and that you don't have to 'blow your stack' too many times before the home get the message.:eek: (high blood pressure's not good for you:D)

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