is it the medication?

Discussion in 'ARCHIVE FORUM: Support discussions' started by alfjess, Dec 5, 2007.

  1. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi All

    Mum since being admitted to the assessment ward of the local hospital has become much worse.

    When admitted she was extremely agitated, but was continent, could talk (not sensibly, but understandable words), could walk and her posture was OK for her age and condition

    Now, she has to be wheeled in an armchair, is wearing incontinence pads and and he leaning forwards, last week she listing to one side and another day she was falling backwards.

    I am told she is still very agitated.

    The medication she is now prescibed I think is Diazepam family. It seems to me as if she is, as the saying goes drugged up to the eyeballs. If this is the case and it is to give Mum some relief from the torture she was suffering, then I suppose it is the worse of the two evils.

    Does anyone have any experience of this and did their relative eventually get weaned off the high dose of seditives to a more appropriate dose?

    Panorama programme?

    Mum had been taking quietiapine for apporx 18 months, but then refused medication and so was prescribed risperidone, which she had for approx 10 days -2 weeks and everything went pear shaped.

    Mum has always been anxious, but after risperidone it was chronic and things didn't improve after stopping this med. even with the introduction of Diazepam.

    I feel Mum has been given more medication than enough now and I would like some way fo telling if her great deterioration is the illness or the medication?

    Thanks for listening, reading?
  2. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Alfjes,
    When they try to sort out medication, doseage etc., it is one of those difficult things to encounter. Can you talk to the Doctor in charge or even the Consultant?
    When my husband had to go into Hospital and he was doublely incontinent, on visiting him with our Case Worker, Peter was soaked. We changed him and spoke to staff. They had the cheek to ask me if I could go in each day to take him to the toilet !!!
    My Case Worker explained that as I was disabled it was out of the question.
    After 4 days of him being in Hospital and visiting daily, I went with my younger daughter and the Doctor was sorting out Peter's medication. It broke our heart to see him yet again, sitting on the bed soaked. We changed him and I told the Doctor, just give me his medication he is coming home now. So we left the Hospital with Peter in his p.j.'s, dressing gown and slippers.
    I wish you the very best. Christine.
    p.s. keep on at them, don't let them fob you off.
  3. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Dear Alfjess,as a medication trained person,i can only suggest you speak to the's not within my boundaries to say what should and shouldn't be given.i can sugest that the medication you say is being prescribed can have side effects,which can be overruled by other the GP for clarification on this.
    love elainex
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Alfjess

    John has all the same signs of loss of mobility that your mum is showing. He was put on Quetiapine in hospital, and has recently come off it, but there is no sign of his mobility coming back.

    I don't think in his case the medication was to blame, I think it was the infection, made worse by the re-infection.

    No-one knows, though. Natural progression of the disease is also a factor.

    Certainly talk to the consultant, and ask about trying your mum without medication, but be prepared for the agitation to increase again.

    It's a difficult decision, and really, no-one can tell what is going on in the brain. Don't worry about the Panorama programme, I think there were other issues involved there.

  5. germain

    germain Registered User

    Jul 7, 2007
    Hello AlfieJess,

    Our Mum has developed all of your Mum's problems and worse but she's never been on a great deal of medication and never used the drugs mentioned.

    We now think its a combination of AZ development, several infections , a now cleared Prozac reaction and a series of TIAs -which were only confirmed last Friday.

    The only hint we can give is that in our case the infections caused the worst symptoms - get her checked for UTIs and chest asap.

  6. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi All

    Thanks for your replies. I did speak to the consultant last week and he said, he thought Mum had a UTI and was prescribed a broad spectrum antibiotic until the results of the urine sample came back.

    To-day, I spoke to a nurse who said the antibiotics had been withdrawn because there was no growth in the urine sample? Which means there was no infection to begin with.

    I'm afraid, thinking Mum had a UTI muddied the waters a bit and gave us hope, that once the infection was dealt with, maybe we would see an improvement.

    I asked the nurse do you have a plan, and if so I would like to be in the loop, eg. medicate Mum at the moment to give her some rest and try to break the cycle of agitation, then try to reduced the sedatives?

    He didn't know, but said speak to the consultant. The consultant told me last week that we won't have another meeting until January and any problems speak to the nursing staff!

    I have no real answes and I am worried.

    Meanwhile everytime myself or my daughters have visited Dad in the care home in the past two and a half weeks, he has either been in bed sleeping refusing to get up, or sitting in a chair in the lounge sleeping, refusing to open his eyes.

    I am worried about him also, but care home staff don't appear to be worried, saying he is alright.

    Thanks again everyone
  7. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    the fact that home staff don't apear to be worried doens't mean they don't care.being a carer in a care home i can tell you that they do care,its hard for families to come to terms with illness.But please respect that it can be hard for staff olso.Their complacency may be due to that they have dealt with this before now.give a litle to the staff.they work hard
  8. germain

    germain Registered User

    Jul 7, 2007
    Hello again Alfiejess
    Forgot to say that I originally joined TP with a question about closed eyes (we took her to see GP and she tried to go to sleep in the surgery) - our Mum spends most of her days like this - even tho' she's not actually asleep all the time.

    Think its a coping mechanism- when she can't make sense of what's going on - in hospital last week she didn't open them for more than about 2 minutes per day - yesterday at her CH she was opening much more.
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Alfjess,

    It is getting more and more difficult for you and I`m so sorry. But however upsetting, is it easier to see your father, eyes closed but peaceful, than your mother so agitated?

    They are both very poorly, and it`s only my opinion, but I`d opt for peace everytime. The constant agitation is heartbreaking.

    I hope something can be done to help your mother.

    I wish there was something I could do to help you.

    Love xx
  10. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    Dear Alfjess,

    Following your story with concern and interest as we are such a similar situation. I do feel for you.

    My mother seems to have deteriorated too, but she was violent in the hospital and as you have said, perhaps the medication to calm her down is the lesser of two evils. She was such a tortured soul, I would rather see her calm even if she is on medication that is making her a bit more confused/dozy. We still know so little about this awful illness and as others have said, maybe our mothers would have deteriorated anyway! I'm not sure the Panorama programme was a good idea, it couldn't go into enough depth, there were too many gaps in my opinion.

    When my parents where together at home, I did notice that my father dozed a lot and I felt at the time that this was a sort of "coping mechanism".

    Also one does sometimes feel that nurses/carers are perhaps not doing as much as they should, but generally they are more experienced than we are (well me certainly) and do see this everyday, so I have to hope that they are getting it right.

    Not sure this helps, but I'm travelling this road with you.

    Much love,
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    When Dhiren`s time comes, I think my priority will be for him to be pain free and anxiety free.

    I know I`m not yet in your positions Alfjess and Fiona, but perhaps it`s why I didn`t question too much the treatment[medication] given to my mother.

    I knew she would never recover, she already had no quality of life. She didn`t appear to know me. What more could have been done?
  12. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi Elaine

    I have great respect for the staff at Dad's care home and yes you are correct, the majority are all very caring and Dad seems to be weel liked by the carers.

    You are probably correct in saying that they have seen it all before, but it is my Dad and I can't help worrying about what causes him to want to sleep all the time.

    Is he depressed, is he ill, is he bored, not stimulated enough, is his heart rate slow again? I have asked for a pulse an BP check and although they did try to do it immediately, Dad was in bed and wouldn't allow it, but I have had no feedback that they have tried again.

    They are very busy and have a lot of elderly to care for, I just don't want Dad slipping through the net, because he is quiet

  13. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi Germain

    You may have a point, while visiting Dad yesterday, although he was out of bed and sitting in the lounge, with me beside him he soon fell asleep.

    I observed him sleeping, he was talking,(couldn't undestand) pointing his hand and very restless, maybe this is a coping strategy. I hadn't thought of that

  14. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire

    Hi Fiona

    So sorry that you are travelling the same road as me. My mum is also a tortured soul when not heavily sedated. I just hope for a middle road sometime in the future.

    Mum is dressed in the pink zoot suit to-day, so she has probably been trying to strip of again, although I didn't ask any staff.

    I feel that if I ask for a blow by blow account everytime I visit, the staff will think I am a pest and they only ever tell me the same thing, still very agitated.

    Hi Slyvia

    Thanks for your virtual offer of help, wish you could, but you have more than enough to do looking after Dhiren, but please look after yourself as well

    I would rather have Dad peaceful than tormented like Mum, so thanks for the reminder

    Thanks all for your replies it helps
  15. Lynne

    Lynne Registered User

    Jun 3, 2005
    My mum still lives in her own home, with me, and this is exactly how she is beginning to act.
    Yes, I agree that it's an escape mechanism. Sometimes I wish it would work for me too!! :eek:
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    #16 Margarita, Dec 8, 2007
    Last edited: Dec 8, 2007
    My mother also living with me sleeps all the time . I also wonder why

    like Alfjess I think like that
    Or is it her

    My friend look after mum the other day , I ask her how she got on , she said she sleep a good 3 hours soled , woke up and Said '' I wish I could sleep , find it so hard to sleep :D ...10 Min later she was sleeping
  17. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi Magarita

    Are we worrying for nothing?

    Just to prove that, my daughter visited Dad to-day and he was very alert, even knew who she was and called her by name. That hasn't happened for approx 2 years

    Mum is now at least walking and not listing so much, but still very sedated.

    It is true what some member, (was it Norman?) says, "Dad by Day"

    Thanks again, will keep you all posted
  18. eiggam

    eiggam Registered User

    Jan 5, 2007

    Hello Alfjess,
    This is much longer than I planned:

    It’s my opinion all the different drugs they have to use on Alzheimer’s patients is not helping in the long run. My Mother has been on all the drugs you mentioned and more over the past 3 years.

    It’s not easy to restrain people when they are in an agitated state, so what can the Doctor’s do but prescribe drugs, Who wants to hear, ‘There is nothing we can do but drug your parent, so they will be less anxious”. Doctor’s have to make horrible decisions, and no one will know the effect it has on a person until the drug is given, then they can raise the dose or lower it. I do believe, a lower dose is the proper way to achieve the right dose, not, the other way around.

    My Mum after 3 years of more drugs than you mentioned ( some dropped some added ) on one night had a mild seizure, due to Her blood pressure being extremely high, was admitted into Hospital from the Care Home in a comatose like state, my Mum was admitted as an epileptic (not true, never has a seizure before or since) but, the Hospital was treating my Mum as an epileptic. Because my Sister went everyday to coax Mum to eat, and drink a little Mum started to act like Her old self, which took 8 days, Mum stayed in Hospital for 2 weeks, and left a different person, as no drugs were given, due to Mum refusing food except what my Sister brought.

    Which brings up another outrageous thing Care Homes seem to do, and that is, even when an elderly person at these Care Homes are too tired to eat, or drink, or refuse what is offered, somehow the staff still seem to give these drugs. Maybe it’s rule that the mediation must be given at all times. All I know is 4 days after my Mum was back at a Care Home, after falling 3 times, we managed to remove our Mum to a new Home, closer, and we thought better equipt to offer the help Mum wasn’t getting where She was.
    In less that a month Mum was rushed in to Hospital in a comatose state, all the family was call in as Mum was not responding. From what the Care Home said, Mum refused Her meals, so the Doctor wanted to operate and put in a feeding tube, His opinion was, Mum would more than likely pull it out, and another operation would be needed if that happened.

    Again my Sister asked for a few days to see if She could get Mum to eat. 10 days of sipping water, and taking a few spoonful of baby food Mum made a complete turn around, Eating by herself, drinking, taking and laughing with the other people in the ward. No one at the Hospital could believe it. Mum was asking for MORE food, and MORE tea please. 3 weeks at the Hospital, then when Mum left the Hospital, we brought Her back to my Sister’s home for tea and biscuits. The Doctor’s instructions was when He released Mum was ‘No more medication to be given. “ That was 3 months ago, and Mum is doing fine.

    All this said, I must stress, Mum needed to be sedated when admitted almost 4 years ago. And it has been a nightmare coping with this horrible disease, seeing a very lively, energetic, self supporting individual become an invalid in such a short time.

    I cannot tell anyone to take their loved one off any medication, no one has that right except the Doctor in charge. All I know is Mum is a much better person without any medication. That’s not completely true. Mum get’s a risperidone at night when needed.
    At the time Mum was taken into Hospital Her medication consisted of:
    Depakote 250mg three times a day ( At other Care Home)
    Risperidone 0.5 twice a day.
    Carbamazepine 200mg twice a day.
    Co-codamol 31/500 two tabs four times daily.
    Lorazepan 1mg half a tab twice a day.
    Lactulose 15mls at night.
    Terazepan 10mg at night (at other Care Home )
    Quetiapine 75mg morning and mid-day (at other Care Home )
    Quetiapine 50mg at night.(at other Care Home )
    Ibruprofen 200mg three times daily. (At other Care Home )
    Zopicione 3.75 at night

    Writing all this, it does look ridiculous for one tiny 88 year old to stomach, when all She does wrong is make up stories, see things that no one else does, and wants to move around more than allowed. A convicted criminal has more rights.
    Something has to be done to change the Care of our Elderly.
  19. Margarita

    Margarita Registered User

    Feb 17, 2006
    #19 Margarita, Dec 15, 2007
    Last edited: Dec 15, 2007
    Oh yes I was! So don't do it any more worry .

    My mother sleep of on all day not seem very alert , then the next min minute , chatting way so alert .

    she can fall asleep in her clothes , not letting me change her, as she becomes very anxious
    so I just leave her .

    Then along comes my daughter , my mother wakes up fine , so gets up, letting my daughter change her in to her night dress .

    I believe its because my mother can pick up my vibes , when I am tried so came very anxious towards me . So can perceive that happening with care staff in care home , that are under staff and under trained in care home.

    Just that I am perceiving things from more than one perspective , not saying it right , but it does happen

    eiggam pick up on a good point when she said

    I shall add sleep when she wants .

    so my point is it would be so easy for me to give mum medication to stop her feeling so anxious towards me, or another solution for me would be care home that is dementia train , fully staff .

    That the whole issue from my view point is finding the right home, I don't want trial error , meaning wrong care home , then have to change to another care home, because Care home staff cant
    cope with my mother AZ

    So shall leave trail error down to me , in trying to understand AZ, and my attitude forwards it when stressed and tried .

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