communication

[alfjess]

Hi

As you probably all know Mum is in the Psychiatrict ward of the local hospital.

She has been there since 8th Nov. When admitted she could walk, reasonably normally, she could talk, after a fashion, her gait was normal, she was continent.

Now she is stooped from the waist, almost at right angles to the floor, cannot walk without support, cannot talk much, just makes noises and is wearing incontinence pads.

For the past 10 days she has been wearing the pink zoot suit (I call it) to stop her stripping of.

In the beginning she was prescribed, Diazepam, lorazepam,(when required) mistrapine(sp) parecetamol senna(when needed) as well as her standard heart meds etc.

She was then prescribed Haloperidol once a day. Then the lorazepam was discontinued and Haloperidol was prescibed as required.

This was when she developed the, right angled from the waist, stoop and Haloperidol has been reduced, as has the Diazepam.

When questioning the staff nurse to-day, I have discovered that she is also receiving a morphine based painkilling patch. Why?? "Just in case she is in pain" and Tamazepam to help her sleep. Must admit it is doing it's job, but when she wakes her batteries are charged and she has to be moving.

I haven't been informed of all these meds or changes, but that is of secondary importance.

What worries me is the deterioration in Mum's condition. If Haloperidol can cause a posture failure as bad as Mum's, what are all the other drugs she is being prescibed doing to her?

I feel like asking the consultant to stop all drugs and see where we are at.

Could I do that???? Would it be a bad idea??

I just feel that it isn't Mum, I know she will never be what she was, but maybe without this massive cocktail of drugs, there maybe something left.

Sorry for going on
Thanks Alfjess

 

[elaineo2]

Hi' alfjess
My word,what a concoction of drugs!Diazepam and lorazepam,maybe?but in what dosage?Halopreidol does tend to have a sedating effect to the point of feeling numb,therefore co-ordination of limbs is limited.I can only say this because i have been trained in mediaction and their effects on patients.If you feel the treatment is not right,then speak up,i personally have issues myself with medications of residents and will speak up gor their sakes.it's all well and good me spouting about knowing how medication works,and the effects on residents/patients,but your involvement as a family all adds power to the stick.Get your point across and make it heard.i for one am behind you.
all the best elainex

 

[Margaret W]

Dear Alfjess

I am just replying cos no-one else has, I suspect cos they don't know what to say, and neither do I. I looked up Haloperidol and it seems it can have some muscular side effects and of course Diazepam is primarily a muscle relaxant, as probaly is Lorazepam, so perhaps your mum's muscles are too loose to hold her upright - I don't know, I am guessing.

I also read that Haloperidol does have the effect of making people feel "charged up" when it wears off, so perhaps the consultant is trying out different dosages until he or she gets it right. I would certainly speak to him about the effects of the drugs (if indeed it is due to that, it sounds possible from my limited medical knowledge. Not many people realise that Diazepam is muscle relaxant, we think of it is an anti-depressant).

I would be slightly concerned about the morphine patch, but perhaps it is common when a person reacts to the above drugs by developing a stoop for them also to suffer pain as a result, but you should ask about the dosage.

I googled mistrapine paracetamol senna and got nothing with them all together or separately. Senna of course is a stool softener, so perhaps coupled with the muscle-relaxant your mum has had a couple of accidents, and the incontinence pad is a precaution.

But you need to talk to the nursing staff, the consultant probably won't be on tap when you need him, but the senior nurse or sister should be able to tell you what is being tried and why.

I don't think the fact that you haven't been informed of all the changes is unimportant cos it is clearly distressing you by not knowing what is going on. If you had been told "we are going to try.... for a few weeks cos it might help with ...., but it could result in your mum losing control over her bowels for a while, or poor muscle tone" then you'd have understood what was going on and why.

Ask.

I hope you get a clear reply.

Love

Margaret

 

[jaws]

Hi,
Could you ask to speak to the pharmacist who deals with the clinical area where your mum is? - through the switchboard of the hospital. They are the best people to speak to for expert advice regarding concerns like this. I understand how horrible it is to have concerns like this. One of my biggest fears is that meds are 'misused' in my dads treatment.
Jan
XXX

 

[inkypink]

bad combination

stopping & starting the lorazepam will most likely be the cause of your mams stoop.it should never be stopped like that.all these drugs are highly addictive & not all of them are needed to have a positive affect for your mam.no wonder she can't speak properly the sedative affects of these drugs would most likely slow all her abilities to function properly.
seek a second opinion,your mam should have been assessed by now & her drugs been sorted out so the right combination is given.
if she is taken off all these drugs in one go though it will have a negative affect for a while because they are so addictive but with the right help & support things could get better.
hospitals are known for drugging patients up with dementia as its easier for the hospital staff to cope with as they just don't have the patience to cope if things get difficult.
good luck to you.

 

[Skye]

Hi alfjess

It does sound a heavyweight cocktail for your poor mum. I thought she was in there so that they could sort out her meds? Normally they do this by adding one at a time over a period, to monitor the effect.

I'd definitely be asking for an appointment with the consultant to find out what's going on.

I don't think coming off them all at once would be a good idea, too much of a shock to the system. But you certainly need to know why she is on them all, and if some of them can be gradually tapered off.

When John came off quetiapine, it was tapered off gradually over a few weeks. I asked that he be kept on Reminyl for a while until his system had got used to not having quetiapine. He'll start coming off Reminyl, also gradually, very soon. As far as I know, none of these powerful drugs should be stopped suddenly.

I'd definitely be wanting some information. It must be awful seeing your mum like that.

Love,

 

[botanico]

My mum stooped too

Alfjess I am sorry to hear about our mum/

My mum has vascular dementia and she started to stoop from the waist and would walk along like that, she was walking that way when she was discharged from the psychiatric ward to the nursing home. I am ashamed to say I don't know what drugs she was taking but that was before my awareness was raised about side effects of drugs and I started to wonder. I don't know if it was drug related or not I can only say that my mum was doing what it sounds like your mum is doing.

 

[Nell]

Dear Alfjess,

Thinking of you and sending you my best wishes. This is a very difficult situation - I can only agree with others who say the Consultant needs to explain it al to you. Perhaps you could write out a list of questions before hand so you don't forget anything in the stress of the moment . . . . ??

 

[alfjess]

Alfjess I am sorry to hear about our mum/

My mum has vascular dementia and she started to stoop from the waist and would walk along like that, she was walking that way when she was discharged from the psychiatric ward to the nursing home. I am ashamed to say I don't know what drugs she was taking but that was before my awareness was raised about side effects of drugs and I started to wonder. I don't know if it was drug related or not I can only say that my mum was doing what it sounds like your mum is doing.

Hi
sorry your Mum was poorly like mine, but did she ever get back to a normal posture?

Thanks for your reply
Alfjess

 

[alfjess]

Hi All

Thanks for all the help and replies.

As I have titled this thread "communication" or in my case lack of, unfortunately I cannot answer many of the questions because I haven't been kept in the loop. I don't get told about medication unless I ask, which I do frequently, but the administrator, who files, has been of sick for a month and patients notes have not been kept up to date in the files.

If the Lorazepam, was tapered, I don't know! I do know Diazepam and Haloperidol have been reduced.

Mirtasipine (SP), I don't know if this has been stopped in favour of Tamazepam.

Paracetomol has been replaced with a Bupenorphine patch, although it hasn't been proved Mum is in pain.

Now they want to extract her teeth. Her teeth are bad, but have been for years and don't appear to bother her, but again it is "just in case", they are causing infection.

Wouldn't infection show up in other ways?? Couldn't the dentist X-ray for pockets of infection? I don't know if at this late stage, I should consent to teeth extraction, where Mum might be subjected to unneccessary pain for not a lot of gain.

Because team meetings haven't taken place over the holidays the first one will be next Wednesday, so I have made an appointment to see the consultant a week on Wednesday. Consultant is only there on a Wednesday

It seems ages away, considering the condition of Mum at present.

Thanks again everyone, I will keep you posted re answers developements

Alfjess

 

[j.j]

hi alfjess, our mam has also been on a cocktail of drugs in an assesment unit and she too began to stoop terrible, it was more her neck onto her chest but she looked very uncomfortable. We believed it to be the risperidone mainly responsible, the doctor said it was probably the progression of the disease, we had to fight and insist the drug be stopped and after a few weeks her posture was almost back to normal. I think the doctor was happy for her to be stooped and calm, but for us and her it was unacceptable. She is now on olanzapine and her neck again is starting to stoop slightly but not so much as to alter her quality of life. I would say to voice all your worries and concerns at the meeting.

 

[alfjess]

Hi j-j

When I spoke to the nurse on Thursday, she said that sometimes the anti-psychotic drugs makes the head droop and when these drugs have been discontinued the posture returns to normal.

My Mum is bending down from the waist and the same nurse has said. it may be due to haloperidol, which I think has been discontinued from 27th DEC. but with no improvement.

It worries me I am not kept informed and that the staff can administer all these drugs. I also wonder for whose benefit these drugs are being administered? Mum's or the staff!

Mum was supposedly only admitted to hospital to stabalise her agitation.

She is now 100% worse physically and is still agitated.

It is difficult to challenge the professionals. At least I find it difficult. I need to be very sure of my facts before I can argue or question and as I am a lay person I find it difficult to question them, but I have started to make a list of questions ready for the meeting with the consultant

I would be grateful to know of any question anyone can think of to add to the list.

Thanks again everyone
Alfjess

 

[Grannie G]

I`m sorry I can`t be of any help to you Alfjess, but I`m horrified by your story.

Your mother has been given so many different drugs in the two months she has been in the ward, I would like to ask the medics if sufficient time has been given between change overs to clear her system of one drug before they started with another.

When my husband was prescribed his first anti-depressant it disagreed with him. He developed an allergic type itchy rash over the whole of his body. Before the GP changed the drug, he had to wean him off it, and give him one week drug free, before starting with the new one. The GP called it a `wash out` and said it was essential.

Obviously I`m no medic, and accept a little knowledge is a dangerous thing, but the number of drugs your mother`s body has had to absorb in two months, is daunting.

 

[DeborahBlythe]

Hi
If Haloperidol can cause a posture failure as bad as Mum's, what are all the other drugs she is being prescibed doing to her?
Thanks Alfjess

Hello Alfjess. Sorry I have not kept up with your thread and postings about your mum.

My mum was also prescribed a morphine-based patch over a year ago because at the time she was constantly complaining of niggling pains: backache, headaches, tummy aches. . I tended to think that all those niggling pains could be treated 'as and when' either by an antacid for the tummy, or laxative if it was constipation, by better hydration for the headaches which I think we were told could be caused by the heat in the home. Or by better handling and turning and the occasional paracetamol for the back aches. But the patch was recommended by a Palliative Care nurse who was attending my mum at the time and the discomfort was almost constant: one thing following another in the space of a few minutes. ( We had been told , during her stay in hospital in March 2006 that she only had a few months to live!) My mum had other ideas. She was 93 in December.

Between November 2005 and August 2006 my mum's mobility did go downhill very noticeably and she is now bed- or, in the mornings, wheelchair-bound, but I think this might have happened anyway because her appetite started to fluctuate. My mum is still on the morphine-based patch but it is quite a low dose, changed weekly, and she does seem more comfortable: at times even very happy as you might expect, so I am a bit reluctant to question the use of the patch.

However, these are some things that occur to me which I would have asked at the outset if I had thought about them. Are there any side effects of the patch such as reduction in appetite? I'm told that people on morphine DO have a loss of appetite, which perturbs me considering the struggle we had to get my mum interested in food whilst she was in hospital and her subsequent marked weight loss. (She does enjoy soft food and sweet things now so maybe her metabolism has adapted to the morphine by now.)

The other thing is that she sometimes gets very itchy around the site of the patch and has been known to pull it off if she can access it usually without the carers noticing. When they do, a new patch is put on which means that the weekly strength of the morphine must occasionally be higher as a new patch replaces the lost one earlier than usual. She also gets dry and itchy areas elsewhere which I suspect is a side effect of the patch but these calm down with the application of Aqueous cream.

Every so often my mum has a day when nothing in the world is going to wake her. I have been very alarmed by these over the years, but now I just think she needs to 'crash out' sometimes to make up for lost sleep at other times. She has been prescribed Lorazepam 'as and when' but I'm not sure when or whether this have ever been needed. On days when I find my mum' dead to the world' I do ask whether she has been given Lorazepam the night before but it doesn't seem to be the case.

I'd hesitate to ask for everything to be stopped all at once, tempting though this is. But definitely make sure you have that list with you when you see the consultant. Is there anyone who could accompany you on the visit, to give you moral support? Does you mum HAVE to stay on the ward? Have they got a discharge plan in place for her?
I do wish you well and hope I have not added to your worries. Just thought you might want to hear what happened with my mum.
Love Deborah

 

[alfjess]

Hi Deborah

Thanks for letting me know about your Mum.

Mum does have to stay on that ward, because until she is stablised/assessed I don't know which type of care home would be suitable, but the vibes I am getting from the nurses on the ward, it looks like continuing care, because of her very challenging behaviour.

I do mean to ask the consultant about a discharge programme, I also mean to ask him if he has a strategy or plan. To date I cannot see any plan or strategy. I see Mum being medicated so far, as an experiment, try it and see.

Glad your Mum has happy days

Thanks
Love
Alfjess

 

[Margarita]

When I spoke to the nurse on Thursday, she said that sometimes the t drugs makes the head droop and when these drugs have been discontinued the posture returns to normal

Not sure what she mean by returns to Normal.


As you may know my mother not on anti-psychotic dug .

My mother head droops , when siting down , also when standing up, she finding it really hard when walking to keep her head up straight I use to say to her stand up straight lift your head up . yes her head just droops in to her chest when siting down , now more so when standing walking, but try her best to keep it up when walking to day center bus

 

[alfjess]

Hi' alfjess
My word,what a concoction of drugs!Diazepam and lorazepam,maybe?but in what dosage?Halopreidol does tend to have a sedating effect to the point of feeling numb,therefore co-ordination of limbs is limited.I can only say this because i have been trained in mediaction and their effects on patients.If you feel the treatment is not right,then speak up,i personally have issues myself with medications of residents and will speak up gor their sakes.it's all well and good me spouting about knowing how medication works,and the effects on residents/patients,but your involvement as a family all adds power to the stick.Get your point across and make it heard.i for one am behind you.
all the best elainex

Hi Elaine
Forgot to say, I love your dog/puppy.

Is it a boxer? He/She is so cute.

I love dogs, in fact to-night I have just had a phonecall from a dog rescue, to ask if I can help out with a Newfoundland X.

Though I would have loved to, I had to decline, I just don't have the time to give to the dog, with all the visiting of hospitals and care homes

Love
Alfjess

 

[alfjess]

Not sure what she mean by returns to Normal.


As you may know my mother not on anti-psychotic dug .

My mother head droops , when siting down , also when standing up, she finding it really hard when walking to keep her head up straight I use to say to her stand up straight lift your head up . yes her head just droops in to her chest when siting down , now more so when standing walking, but try her best to keep it up when walking to day center bus

Hi Margarita

Thanks for your reply.

Maybe it is then just another stage of dementia.

My Mother-in-Law's head also droops somestimes and she isn't taking anti-pyschotic meds, but it only happens when she is tired.

My Mum is bent from the waist all the time. Before she was listing to the left, which staff said was constipation

the double over, has only happened in the last 2 weeks, but she has been on such a cocktail of drugs, for the past 2 months, I can't help wondering, if she would be better of being weaned from all drugs and starting again with a clean slate.

Thanks for your concern

enjoy your holiday

Alfjess

 

[j.j]

hi alfjess
when mam was in hospital and very agitated like your mam it was truly awful and i feel for you,i am not a forceful person and when we went to meetings i would try and say my piece calmly and rationaly but i always broke down, emotions got the better every time. I did try to convey to the doctors that while i appreciated they were the trained proffesionals and i would never tell them their job there was nobody who knew mam as well as me and i could tell when things were just not working, i felt drugs were introduced willy nilly and at the finish we didn,t know which ones were doing what. We too could see no end to it, felt we were at their mercy, we know it is all trial and error trying to get things right but we must be included and involved with the decisions bieng made about our loved ones. Fingers crossed we are in a stage of calm mam on continuing care in unit for challenging behaviour, we don,t really know if it is the drugs or the place or a different stage of the disease but it is a lot less stressful than the agitation, i do hope your mums agitation can be helped. x

 

[alfjess]

Hi J.J

It is encouraging to know that someone else can understand and it very encouraging to know that your Mum has calmed down. It gives me hope for my Mother.

I also think that drugs are given willy nilly and I am definately not kept informed, but hopefully I can get some answers and things sorted with the consultant next week.

Had a very bad visit with Mum to-day. She was very agitated and kept striping of. When I stopped her from removing her clothes, she just screamed.

Although it is terrible to see her in the pink zoot suit, it does, more or less work, but the suit was at the laundry.

One would think on a ward like that they would have more than one suit. What if 2 patients need to wear THE SUIT.

I tried putting her blouse and double breasted cardigen on her, back to front. It didn't help much.

I would be grateful everyone, for any ideas on clothes, which Mum would have trouble removing.

Thanks
Alfjess