1. Cymbaline

    Cymbaline Registered User

    Aug 23, 2007
    Hi everyone. This is my first post here. Like everyone here, I wish I never had reason to come anywhere near an Alzheimer's forum but unfortunately here I am.

    My mother has had Alzheimer's disease for over a decade now. She's in her early 60s and has progressed to a stage where she's wearing incontinence pads, has to be fed by hand and is incapable of doing anything for herself. My father is her fulltime carer. I try to travel home most weekends to help out and to give my father a break.

    Until about a month ago, my mother was relatively easy to look after. She walked around the house all day and was content to do so. She was usually fairly placid, though she could get upset and start crying or throw a tantrum. But overall, I'd have said she was as content as you could expect.

    Now, she's gone into a phase of the disease where she does little more than scream her head off all day and can be aggressive. The only break would come while when her meds (mainly Antivan these days though she’s also taken Seroquel) kick in and make her drowsy and quieten her down for a while. To the best of anyone's knowledge, she's not in any physical pain.

    Until very recently, she was reasonably easy to look after and my dad was able to put her into respite care and into day care to give himself a much valued break. Unfortunately, this time around, they couldn’t handle her in the care home because of the screaming and the aggression.

    My dad reluctantly allowed my mum to be admitted to a special unit in a hospital where they would sort out her medication and calm her down again. A week down the line, all that’s happened is that my mum has turned into a zombie. She walked into the hospital last week. Now she can’t get out of her chair and she’s drooling. Last week she was on her feet all day and didn’t drool.

    My dad is convinced that if she spends more time in there, that they’ll kill her. He wants to walk in there tomorrow and take her home. His logic is that it’s better that she screams her head off all day than if she’s a bedridden zombie. In her current state he won’t be able to dress her or bathe her etc. I’m worried as hell about the consequences of him bringing her home. If she continues in her current state, he won’t be able to leave her into daycare or respite and he won’t get a break at all. From a purely selfish point of view, I'm terrified of the consequences. Everything depends on my father staying healthy and he has to have breaks. I can't be his only means of getting out of the house and doing normal everyday things.

    I've visited my mum in the unit a few times since she went in and I can't help but get the impression she's nothing but a lab rat to the staff in there. They're polite enough etc. but I know all they want is a quiet life. It suits them to have her sitting in the chair rather than walking around disturbing the peace.

    I foolishly thought that when my mum went in there, that they would try out different meds on her and that my previously placid mother would emerge in the near future. Am I really stupid/naive to have though that? Are we faced with a choice of my mother screaming and aggressive, walking all day and unfit for being left into daycare or my mother with sunken eyes, drooling in a chair?
  2. connie

    connie Registered User

    Mar 7, 2004
    Cymbaline, warm welcome to TP.
    You quote:
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Cymbaline, welcome to TP, although I agree, no-one really wants to be here.

    The situation you find your mother in is horrifying and I really don`t know what to say to you.

    I have cared for my husband for only 2 years and it`s taking its` toll. Your father has been brilliant, caring single handed for 10 years and I`m sure is badly in need of as much respite as he can get.

    I have read on other posts, that trying to get the balance of medication right, can have some dramatic effects. It does take time to know which is the correct dose.

    But such change in one week must be very frightening.

    I hope other members who have had this type of experience will be able to tell you more, but I would certainly ask the doctors in charge to explain what`s happening.

    Please let us know how you get on.
  4. j.j

    j.j Registered User

    Jan 8, 2007
    dear cymbaline
    my mother went into an assesment unit seven weeks ago and has gone downhill rapidly, she was admitted because she had been inadvertantly given to many calming drugs over a two week period ( oh how the barbara and malcolm documentary struck a chord when she said malcolm had went into hospital for respite and been over medicated!) mam was then prescribed risperidone but the side effect of that has been for her chin to touch her chest and drooling it took weeks for us to get the dosage reduced and even then i don,t think the the doctor wanted to reduce it i think he thought well 'she is calm that is good'. i think there are drugs available to help but you have to be on the ball in asking what they are, how they work, and the possible side effects and it is a case of trial and error for a while, we are already losing our loved ones to this disease without losing them quicker to the drugs
  5. Cymbaline

    Cymbaline Registered User

    Aug 23, 2007
    Hi Connie. Thanks for replying. I'm a bit upset this evening and need to talk (even in a forum like this) to people who understand.

    What I would like is for my mother to return home to continue to be cared for by my dad. He retired early and is happy (in as much as you can ever be happy as a carer) to look after her. Until she began the screaming/aggression, things were manageable. She was relatively easy to look after and was in a fit state to go into day care and into respite.

    I forgot to mention that my father wants to speak to a doctor tomorrow. I honestly don't know if that will happen. Unfortunately due to work commitments I can't get out of, I can't get involved in this but I've spoken to my father. What I really want to know, I suppose, is is my mother going to have to be drugged up to the eyeballs and zombified in order to stop her screaming her head off? Or is there an alternative? I don't want my father to do anything too hasty without knowing the facts but to be honest, I'm worried about her as well.
  6. connie

    connie Registered User

    Mar 7, 2004
    No, drugs play an important part. The secret is in the balance.

    Dad needs to speak to someone: social worker/doctor/specialist. There is a balance to be found, not always easy. Yes on the one hand we need to stop the aggression/screaming etc. On the other hand, noone needs to be drugged up like a zombie.

    I do hope you find the answer. Questions, questions. If you don't ask, you will never know.
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    I can't answer that even thought I would also like to know the answer , I do hope your father ask that question to the doctor . also could your father not ask to make an appointment to see the consultant so then you can both be they to talk about medication
  8. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Your Mum and Dad

    I cried my eyes out on your story, I do think you should try to find out why your mum has gone from a screaming nuisance to a zombie in such a short space of time. It is obviously drugs that have done that. You need to see the consultant who prescribed the drugs to find out why they were prescribed and for how long mum is going to be on them. Maybe it is just a temporary thing to calm her down, maybe they will help her heart rate/blood pressure or something, and once that is stabilised she may come off them. I don't know, but you must ask.

    I agree with your dad, I would rather have the screaming person than a zombie, hard though the former is to deal with, but really neither extreme is right. Whatever medication your mum has had, it obviously needs to be changed to something that causes a less dramatic change in behaviour. Calming is one thing, but the situation you describe is not acceptable to most of us.

    Do ask the doctors for an explanation. Stick out for it. You might find they have a good reason, but you are entitled to know what it is.

    Let us know how you go on.

  9. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    The screaming may not be due to drugs

    Unfortunately, screaming or calling out can simply be part of the disease. My mother has started a sort of chanting (quite annoying) and has been doing this for 3 or 4 months now. There is a gentleman in her unit who has been chanting loudly for about 2 years.

    Your mother should definitely not be a zombie. You should get a list of all her drugs & then look them up for side effects and, VERY IMPORTANTLY, interactions with other drugs. What I have done in the past is to go to a reputable website (I've used the Mayo Clinic in the U.S. for instance) and check out what they say about each drug. You must be very careful where you look.

    I've found this website to be very helpful. http://www.nlm.nih.gov/medlineplus/
    It is a U.S. gov't website.

    Drugs can be very helpful but yes, it can sometimes take quite a while to find the proper balance. Don't despair but do stay on top of everything (as much as you can). Once the meds are sorted out, I see no reason why your father cannot bring your mother home. If you feel that the hospital is letting you down, perhaps bringing her home and adjusting her meds with her doctor will be best.

    Good luck.
  10. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    My mother for a while became quite aggressive and required medicating. The NH staff spoke to me (we all lost the plot with her GP who is the only doc who ever sees her and only appears once in a blue moon normally when the NH staff have something they can't deal with!! :mad: ) about the level of drugs the docs had prescribed. After he first one she sat and slept and became inconitnent. Up until then she had mostly managed the loo by herself.

    The staff didn't give her another for 4 days ans on day 2 & 3 she was calm and peaceful. Again on Day 4 she started getting agitated and on day 5 aggressive. She was supposed to have one every day!! :eek:

    The staff in her NH commented that they did not like sedative drugs as it frequently gave them more problems due to the side effects. They use only when necessary. Also they feel that because of the altered brain in the individuals they could have widely varying effects.

    I was so pleased that they were sensible. Luckily for me Mum only required them for a short space of time as she had a bad UTI and thereafter never seemed as bad.

    Talk to the staff and try if you can to speak to someone who cares for the patients well and who will explain to you the ins and outs. Mum's NH are great at being advocates for their patients when GP's just want to dope them up thinking quiet is good!


  11. Kate P

    Kate P Registered User

    Jul 6, 2007
    Hi Cymbaline,

    What a difficult time for you all.

    I think, as everyone else has said that the answer is to ask questions and get answers and let them know that you are not a child to be pacified but an intelligent adult who wants truthful and full answers. I find that sometimes doctors just assume you won't understand so skip over important details.

    It may help for you to go with dad and ask the necessary questions yourself - I find that my dad is sometimes not willing to question the authority of the doctors where as I have no problem with it.

    Purely my opinion but I would try and encourage your father not to remove your mother straight away but try for answers about the medication first. Although it is awful that your mum is like a zombie at the moment, to make her go back home where she is screaming and clearly distressed is not a good solution for her and her feelings need to be considered too.

    I hope I haven't spoken out of turn and I really hope you find an answer to this that can satisfy everyone.

    Best wishes

    Kate P
  12. linjean

    linjean Registered User

    Aug 20, 2007
    hi cymbaline. what a magical name.

    a couple of years ago my mom was extremely difficult to manage - more than I could handle at the time. I put her in the local nursing home and right away quick she was an incontinent, non-verbal little zombie with tremours. I expressed concern to the doctor and to the nursing staff but nothing ever changed.

    since then my circumstances have changed and I recently brought her back here with me. when I researched the different medications she was on, the one she was receiving four & five times a day was listed as an anti-psychotic, two others were anti-anxiety drugs. the nursing home said the anti-psychotic was what they called a 'chemical restraint'.
    when I brought her home I quit the chemical restraint. she is still incontinent and still nonverbal but she is clearly not a zombie. more like an eighteen month toddler. this is better.

    those drugs play an important role.
  13. carolr

    carolr Registered User

    Jul 12, 2007
    Hi Cymbaline

    Sorry to hear of your worrys, my Dad has been in an assessment unit for 2 months, during this time he had been up and down, very up and very down. His medication has been constantly changed with various results, however through all of this the staff have kept my mum and I advised and we have had an imput at the ward rounds etc.

    I have never felt that the staff were trying to keep dad quiet infact they have juggled the medication to keep his mood constant not drowsey but not agitated. I did resent them at first but they pointed out to me that whilst dad was agitated he was unhappy its not a case of keeping him quiet but keeping him happy.

    Having said all that this is your Mum and your Dads wife ask ask and ask again let them know that you mean to be included and they will let you.

    Just to finish I found myself envious of the staff last night when I visited Dad because he was so close to them even holding their hands, they really care about him and that means I can sleep.

    Best Wishes
  14. Cymbaline

    Cymbaline Registered User

    Aug 23, 2007
    #14 Cymbaline, Aug 25, 2007
    Last edited: Aug 25, 2007
    Hi everyone.
    Thanks for your kind words and for recounting your own experiences. I found last night and today very tough and it meant a lot to be able to read what you had written in this thread.

    Anyway, my dad rang the hospital this morning and went in to see the deputy consultant (the head of the unit couldn't get to see him, presumably because of a pressing golfing engagement) and made clear his feelings about what's happened. He wasn't particularly impressed with the attitude of the consultant and that they seemed to consider my mother being able to walk with the help of staff as her being mobile :mad: Utter nonsense - when she's at home she walks around the house all day and never sits down. Ever.

    Anyway, they're taking her off the medication she's been on and changing it for something else. She looked a lot better today and wasn't as drooly (if that's a word). He did manage to get her to stand up but she's unsteady on her feet and sat straight back down into her chair again.

    He noticed that the staff were making more of an effort to be seen doing things for my mum when he was in there. It's a dreadful shame that it came to this for that to happen.

    As an aside, he says that she'd been bathed and her hair washed. I noticed the last day that her hair looked dull and that it hadn't been washed since she went in almost a week before. She'd also had a nosebleed earlier in the day and there was dried blood in her nostrils. I know that someone's hair being washed is a small matter in the grand scale of things but it's indicative of the second-rate care she's being given in there. As everyone here knows, just because someone has Alzheimer's doesn't mean they're not a human being with feelings and emotions and dignity. If my mother is wearing nice clothes that she likes, or hears some music that she likes or gets washed with nice smelling lotions, it genuinely does brighten up her life even for a short while. I cherish those moments.

    He's going to talk to the consultant in charge of the unit in the coming days. He's made it clear that the issue is not resolved.

    PS To the poster who commented on my user name, it's the title of an old Pink Floyd song
  15. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Cymbeline, I'm glad your husband's comments have had an effect. It does pay to complain if you are unhappy -- even if claims are denied, there is often an improvement afterwards.

    Well done, both of you!:)
  16. Cymbaline

    Cymbaline Registered User

    Aug 23, 2007
    #16 Cymbaline, Aug 25, 2007
    Last edited: Aug 26, 2007
    My dad and I went into the unit to see my mum today. She was asleep in a chair in her room and would wake for maybe a minute at most before falling asleep again. We were hoping we'd be able to get her to walk but the sleepiness put paid to that. In the brief times she was awake though, she did smile a couple of times (what a wonderful sight) and chatter. According to the staff, she was able to walk unaided last night - here's hoping they told the truth. To be honest I don't trust them in there and until I see her walking I won't be happy. Anyway, now that her ability to walk is an issue, they're going to have to make sure she walks out of there.

    I did notice today (the first time I've been in since my father's meeting with the second in command) that they're a bit warier of us and more at pains to tell us what's going on. She's also cleaner - they're washing her hair more often and changing her pads more often. This is a welcome change. From the amount of urine soaked clothes we were getting to wash (we do her laundry) it was clear that this was not happening.

    We're far from out of the woods on this one but my tale does go to show that you really can't lie back and hope that the so-called professionals do their job properly. You have to watch them like a hawk and ask questions.
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I agree Cymbaline, and often fear for the residents who don`t have family to watch out for them.

    I know there are good homes and I have experienced both, but when you lose trust, it takes a lot to regain it.

    Take care xx
  18. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex

    Those smiles are priceless, aren't they.

    Good for you and your Dad, never accept anything but the best for your Mum, she deserves nothing less.

  19. Cymbaline

    Cymbaline Registered User

    Aug 23, 2007
    #19 Cymbaline, Aug 30, 2007
    Last edited: Aug 30, 2007
    Hi everyone. Sorry to keep flogging this dead horse of a thread but I'm a bit annoyed this evening. Went to see my mum in the unit this evening. It was a disappointment to me because she was agitated again, just like she was the day she went in. I made the staff bring her to the toilet because I thought I smelled something. After lots of screaming/struggling, they managed to get her into a wheelchair and to the bathroom. According to them (who I wouldn't trust as far as I'd throw them), she hadn't soiled her pad but did go to the toilet when they brought her there. One thing I know for certain is that toilet matters drive my mother crazy, be it a wet or soiled pad, constipation or a need to go to the toilet. In my opinion, the nurses in the unit were more interested in trying to watch EastEnders and I got a bit of sadistic pleasure out of my mum's screaming spoiling their viewing :)

    She calmed down fairly soon after the toilet trip so I took her for a walk along a corridor or two of the hospital and she was happy then. Only thing is, I am getting the distinct impression that the staff in the unit really don't want her walking about at all. A nurse came in search of us. Same thing happened last time I was in on Monday night. They made a big deal of locking the doors which are half a corridor down from the entrance into the unit when we got back. Then I walked along with my mother up and down the unit and to the little lobby area that's outside it. A nurse came along and asked me us to come back in. She was behaving oddly, as if my walking alongside my mother outside the front door of the unit was going to land her in big trouble. What's that about? :confused:
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Cymbaline,

    If you have any anxieties about the do`s and dont`s of your mother`s care, or what is expected in the unit, why don`t you ask to speak to someone in charge, next time you go, and clear the air.

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