NH EMI Unit cannot deal with MIL's behaviours

mumof3

Registered User
Feb 6, 2006
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My MIL has been in a NH EMI Unit for the last 14 weeks. After initially seeming to settle not too badly, things have declined dramatically over the last 6 weeks or so.

We have had various concerns about the care provided in respect of lack of personal care (MIL is increasingly dishrevelled, not showered for days on end, no attempt to brush hair, stained clothing, no underwear or socks at all in her room yet she is left to dress herself somehow. Her room has sytematically been stripped of all personal possessions as apparently she transports things around the unit - she is very mobile.

There is little or nothing in the way of stimulation offered despite reassurances to the contrary and communications with the foreign nursing staff are met with silences and repeated statements that she refuses care and her behaviour is bad and upsetting the other residents. We were in the process of drafting a complaint to the NH and had gone as far as looking at alternative EMI unit when we were asked to attend a meeting with the Deputy Manager yesterday.

At the meeting we were told that staff in the EMI unit were unable to manage my MIL's behaviour. She displays aggression towards other residents and male staff (lashing out etc), aggressive bad language, constant banging, kicking and spitting on locked doors etc. She is unpredictable and the manager feels that other residents are being put at risk - 2 ladies having to eat their meals in the rooms as staff couldn't manage my MIL's behaviour in the dining room. Basically the EMI unit has asked for my MIL to be placed in a hospital assessment ward but the ward is full and we know first hand that the doctor feels this would be inappropriate for my MIL.

Nights are a big issue with my MIL routinely only sleeping for an hour or two despite night medication.

We have witnessed first hand my MIL's volatility at visits - first the bad language starts and has been directed at husband, myself and the grandchildren. She has also been rough with them, tugging at arms and legs, kicking out and being generally threatening to the extent that they are scared and I don't want to take them to visit any more.

Quetiapine has been prescribed for last 2 weeks (last antipsychotic apparently had a negative effect) and diazepam doses adjusted and the EMI unit has agreed to try this new regime despite saying that they cannot cope with her behaviour and she requires one-to-one care all the time she is awake to safeguard the other residents.

We are still a bit shell shocked being told that MIL's behaviour is too extreme for an EMI unit and don't know what we should be doing now. It seems very unlikely that any other EMI home would be willing to accept my MIL given the current circumstances yet it seems only a matter of time before something bad happens. She has fallen twice in the last three weeks. Is unsteady on her feet, wears wrong footwear on wrong feet and literally runs along the corridor.

Everything feels out of our control. We just can't believe that there is no facility that can cope.
 

sue38

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Mar 6, 2007
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Wigan, Lancs
Hi mumof3

We are in a similar position as my dad has been in his EMI Care Home for 6 weeks, and at the weekend was aggressive and violent (lashed out) at a member of staff who is pregnant. The home are to have a meeting to see whether they can continue to manage him. As you say, if an EMI unit can't manage him, where do we go from here?

I would imagine he would go back to the assessment unit at hospital, where he was prior to going in the home. There seems to be a greater ratio of qualified staff in the unit, and they are not doing jobs like laundry and so on on top of their nursing.

we know first hand that the doctor feels this would be inappropriate for my MIL

Do you know why the doctor (consultant?)feels it would be inappropriate for your MIL? They are not the most pleasant of places, but I would imagine your MIL would be better managed there whilst they try her on different medication.
 

jenniferpa

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Jun 27, 2006
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The first question I would be asking is why do you believe that the doctor would feel hospital assessment would be inappropriate for her? Because, with dementia, things can change so rapidly that while it might not have been appropriate before, it may well be now.

I do think EMI homes vary (a lot) so just because one can't cope, does not mean another might not be able to. Still - I think that assessment is going to be necessary. She must be very unhappy as she is and the doctors have a duty to attempt to stablize her and further, any decent EMI home is probably going to want to see the result of that assessment.
 

mumof3

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Feb 6, 2006
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Thanks Sue and Jennifer.

I have spoken to my MIL's doctor, a specialist but not a consultant as we initially thought, 3 to 4 weeks ago when she told me that the staff were struggling to cope and had asked her to organise hospital assessment. Her response was that it was not the correct environment as it was full of large aggressive men.

There has been a huge downward decline since then yet the EMI manager said yesterday that the doctor still doesn't feel that hospital assessment would be appropriate for the same reason and that there were no beds in any case.

We know that my MIl is desperately unhappy and our gut feeling is that where she is is not the right place for her yet we agree that no decent unit would accept her at the moment as things stand.
 

jenniferpa

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Jun 27, 2006
39,442
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I'm a bit out of touch with the NHS now but .. Have you asked about other assessment units? I know theoretically you are supposed to now have a certain amount of choice regarding hospitals: does this option exist for assessment units? To be honest, while I 'm sure that every unit has large aggressive men in them, many of them are able to manage them and the small aggressive women they get. I can't help feeling this doctor fobbing you off in a somewhat patronizing way. By saying that that wouldn't be a suitable placement then it means she doesn't have to find a place for your MIL. I may be being unfair, but frankly, you and your family can't continue like this.
 

Margarita

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Feb 17, 2006
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london
We know that my MIl is desperately unhappy and our gut feeling is that where she is is not the right place for her yet we agree that no decent unit would accept her at the moment as things stand.

Go with your gut feeling .Look around for another EMI home , that can handle your mother very high needs of challenging behaviors.

yet we agree that no decent unit would accept her at the moment as things stand.

They is lots of decent EMI unit out there that can take your mother, even with challenging behaviors .

Just that may be its the staff in the EMI unit your mother in now , that are not trained in knowing how to handle you mother in not triggering her aggression, when your mother needs washing, help with dressing .

We have witnessed first hand my MIL's volatility at visits - first the bad language starts and has been directed at husband, myself and the grandchildren. She has also been rough with them, tugging at arms and legs, kicking out and being generally threatening to the extent that they are scared and I don't want to take them to visit any more.

My mother was like that with my family when I started to first care for her , but then that stage did pass . As it took a long time for my mother to adjust ( sp ) to living with us, because she was not thinking with a Logic mind .

So you have to find EMI unit one that is able to care for your mother. if your doctor saying that s/he does not want your mother in a assessment unit. stick with it , your mother will have to stay put in that EMI unit till you find another one .

unless EMI unit evict your mother from there unit, then it must be back assessment unit. but that must take a long time to do evict someone from a EMI unit, so that giving you time to find another decent EMI unit .

Have you look at other EMI units ?

How long has your mother been in this EMI unit ?

Does your mother care come under social services?
Or are you all self funded?
 
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jenniferpa

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Jun 27, 2006
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Maggie's absolutely right, and to add to what she said about funding: if your MIL really does need 1 on 1 care and has such challenging behaviour then she should be receiving fully funded NHS continuing care, if she's not getting it already.

P.S.

You may have to go further afield to find the "right" emi facility - I know it's a pain but sometimes it's necessary.

Best wishes
 

JPG1

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Jul 16, 2008
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Hi mumof3,

My heart goes out to you and your MIL, because the situation you are now in sounds unbearable all round.

Your MIL is very young, and I think you’re in Scotland, so I’m very wary of commenting on your situation because I have absolutely no experience and very little knowledge of nursing homes in Scotland. You say MIL is in a NH EMI unit. Is this a specific unit for people with dementia, or a more general unit for the ‘elderly mentally infirm’? (I ask because if the latter, then there may well be people with very seriously challenging behaviour, but not dementia-related, and that can sometimes cause additional stress all round. It may also mean that the staff are not “as well trained in dementia” as they should be!) Are those ‘large aggressive men’ also dementia patients, or are they ‘elderly mentally infirm’?

If it is a unit specifically for people with dementia, and if it was via Social Services that your MIL came to be there, then why not go back to the SS and ask why that unit was considered suitable for her? Presumably a full assessment was carried out before your MIL came to live there - and yes, I know that behaviour can change radically and quickly (you say over 6 weeks), but any dementia unit worth calling a dementia unit should have staff trained to deal with the varying behaviours of dementia. And they should be aware of the fact that a medication change can take time to ‘kick in’ and be evaluated or even changed again, in the best interests of the patient. It’s unfair on the residents for them to ‘have to move’ if that move comes about just because the staff are possibly unsuited to work there. It’s the staff who should move on, not the residents!

You sound unhappy with that unit anyway (and quite rightly so, if even the personal care is as bad as you describe it), so ask the SS for a list of NHs with dementia units that are suitable for someone like your MIL with the behaviour they are already aware of. If they say there is no dementia unit at all that is suitable, then that requires explanation too. And you then need to ask: what now then? Put the ball in the court of the SS. Ask the questions, and ask for answers.

In England, assessment units are often few and far between, so the degree of choice that Jennifer suggests may not be an ‘overnight thing’ here, if at all. And there is nearly always a fairly long waiting list, and again they are not always specifically for dementia patients; there are sometimes people with extremely challenging behaviours, which may cause MIL even more distress. In my experience of assessment units, the staff are often as foreign and linguistically challenged as the staff you describe. Some staff were excellent; others less so.

Finding the ‘right’ dementia unit – I’m sorry I have nothing to suggest there. There are no guarantees, either with assessment units or care homes. But your MIL’s Social Worker and doctor are duty (and honour?) bound to do what is right for your MIL. They can’t evict her, (well not in England, anyway), so stay positive.

Good luck.

.
 

Mameeskye

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Aug 9, 2007
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Hi Mumof3

You have had some good advice. I would also suggest that your first port of call should be social services as in Scotland (if you are situated there)it is usual for a review to be carried out a couple of months after a resident moves into a home to be sure it is meeting their needs...and in this case it patently is not.

I can understand why the mix of residents in the assessment ward could cause a problem. it is one of the issues NH look at when assessing patients for entry too as they have to work out how the home dynamics may change. I am also aware of how difficult the mental health legislation can make it for the nursing and care staff when a resident patently refuses to be helped. I often had this discussion as to whether this would class as neglect if it was a child and you were the parent.

If the NH cannot manage your MIL there should be some alternative, either with a different EMI unit which may have a different mix of residents and staffing ratio, more funding may be available due to your MIL's complex needs for a one to one carer etc. The home manager may also be able to advise you and bring pressure to bear on Social Services, who can be slow as they are sorely understaffed too.

Good Luck. it is not easy and if, as you suspect, the home isn't that good anyway, you might find that this is a silver lining, although it is a pain in the neck to deal with right now!

(((((Hugs)))))

Mameeskye
 

JPG1

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Jul 16, 2008
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Thanks, Mameeskye, for reminding me of the review that is normally carried out, in England too, after 6 weeks or so. To ensure that the care home is suitable.

And, mumof3, you were talking about your MIL's changed behaviour over about 6 weeks - so back to SS, and ask for that review. Means that the SS will then have to advise you, rather than leave you to work it all out.

.
 

j.j

Registered User
Jan 8, 2007
91
0
mumof3
We were in exactly your position last year with mam, i could of wrote your post word for word. Our social worker maintained that because it was an emi unit and the council paid to have people there whom required emi care then it should be able to cope. But in reality they couldn,t and we were devastated. Mam had to readmitted to the assesment unit again for four months, fortunately there were two homes in our area which dealt with challenging behaviour. Mam has been there a year now and because the staff have the training and knowledge to manage difficult situations things have improved. It may be wise to check out if there are any such homes in your area, i mean hopefully it would be nice if your mums situation improved but failing this, for us what we were dreading actually turned out better for mam.
regards j.j
 

Margaret W

Registered User
Apr 28, 2007
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North Derbyshire
Dear Mumof3

This is exactly the situation I envisaged my mum being in a matter of months, but that she passed away last month. I am glad she has been spared the trauma.

I had already started to investigate EMI units that could cope with her, and had already been turned down by ones in our locality. There is an organisation called Care Choices that might help - I cannot recommend them as all I got was a brochure and a phone call and did not then need their services, but they did give me a list of EMI homes outside the area to consider.

My mum was totally self-funding and I never investigated what would happen if she was in need of nursing care, but I do not believe that it would be fully covered in England, but Scotland is a different matter.

Everyone is right in that every home is different, so do keep searching. And don't be too scared of the Assessment Unit. If you could get to the Cavendish Hospital Unit in Buxton, Derbyshire, you would find one of the best places on earth. Pity it is not a care home. Your MIL will surely benefit from a spell in a good assessment unit, where her needs can be reassessed and a new plan of care forumulated for her.

I wish you luck. Let us know how you go on. Although my mum has passed away, I do still care about how others in similar situations might be coping.

Much much love

Margaret
 

alfjess

Registered User
Jul 10, 2006
1,213
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south lanarkshire
Hi Mumof3

I was in your position last year.

Mum was self funding in a residential care home and I was told they couldn't meet her needs.

She was admitted to the psychiatric assessment ward of our local hospital. It wasn't the best of places. Different cocktails of medication were tried, but didn't work. Mum became more zombified and after 9 weeks, I was told she didn't "have long" and she was being moved to an NHS continuing care facility.

This facility is owned and managed by B--- and is for residents with very challenging behaviour.

Mum is no longer a zombie, all right, still not wonderful, but I only have praise for the staff and how they manage difficult patients. I have moved Dad to the private unit of the same facility.

I am also in Scotland, so what happens in one area should be good for all areas??

PM me if you want or think I could help

love
Alfjess
 

mumof3

Registered User
Feb 6, 2006
82
0
Thank you so much for your responses everyone. We have picked up lots of useful points.

Have spent the evening helping my husband to write a letter to my MIL's care manager setting out our concerns and asking for their professional guidance on what should happen next, and where ideally myMIl should be placed as we feel completely out of our depths. We definitely don't feel that this EMI is the right one for my MIL and feel that the environment there has contributed to her decline. We also have limited confidence in the EMI units ability to cope with my MIL during a period of adjusting medications given the shortcomings they have displayed so far. We were fully expecting to be told yesterday that they could no longer care for her and are surprised that they are effectively risking the safety of the other residents in the unit.

To clarify a few points. We are in Scotland and my MIL was in receipt of a home care package before we had to place her in the EMI unit as a result of the care package being suddenly withdrawn because of an alleged assault on a carer. The placement was initially an emergency but we had looked at a number of care homes prior to that and had identified this one as the best option. It's new, purpose built, very close to us for visiting and most importantly was only one of 2 with vacancies at the time and who accepted smokers! (Smoking is now not an issue as my MIL has stopped completely).

Maggie - My MIL is self funded and we feel completely unqualified and on our own in terms of finding a suitable EMI unit which can deal with 'challenging' behaviour.

Jennifer - In the correspondence we have also requested that my MIL be assessed for continuing care given her decline since entering the unit and their view that she requires 1-on-1 care. This is of secondary concern at the moment but it something that we will pursue when we manage to recharge our energy levels.

Thanks everyone for your input. It's much appreciated. I will let you know how things develop.
 

mumof3

Registered User
Feb 6, 2006
82
0
My MIL was moved to the local assessment ward this afternoon after a bed became available. We are glad that at least new medications will be being given in a more controlled environment with properly qualified staff - we found out today that the EMI unit my MIL was in has no qualified RMNs.

We are hopeful that a combination of medication and a different environment can stabilise things and that my MIL can get some relief from her obvious torment. I know assessment beds are in short supply but we are determined that my MIL's needs are fully assessed before moving to any other EMI Nursing Home.

Thanks for everyone's experiences.
 

sue38

Registered User
Mar 6, 2007
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55
Wigan, Lancs
That's good news. I hope that the right meds are found for your mum. We found the staff at the assessment unit were much better qualified than at any Care Home, and that they were just as caring.

we are determined that my MIL's needs are fully assessed before moving to any other EMI Nursing Home.

I know this may be weeks down the line, but when you MIL is ready to leave the assessment unit, you should ask that she go to the new home on leave for a couple of weeks before being formally discharged, so that the door to the assessment unit is left open should things not work out at the new home.
 

Lynne

Registered User
Jun 3, 2005
3,433
0
Suffolk,England
Fingers crossed that you may have a couple of more peaceful weeks and relief from worry.
.
 

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Mameeskye

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Aug 9, 2007
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Hi Mumof3, glad that your MIL got the help that she needs.

On the funding note make sure that your get the Nursing Element of the care home fees if she is assessed as needing Nursing Care. Although Continuing care is virtually impossible to get in Scotland you should at least get the Nursing Care element if her needs are complex. This is normally assessed by the social worker in the hospital prior to her discharge.

At least now you will be able to ensure that your MILs next placement meets her needs.

Mameeskye
 

mumof3

Registered User
Feb 6, 2006
82
0
Thanks to you all for the continued support.

We have called the assessment ward this evening to see how mum has settled and unfortunately the nurse we spoke to has said that she is very agitated and has been agressive to the other patients. They have had someone with her all the time. We've been advised to wait until the weekend before visiting.

Mameeskye - MIL has been receiving the nursing care allowance since she went into the Nursing Home. She just turned 65 last month and so will now be eligible for the personal care allowance too. I know from this site that continuing care is very elusive however we have at least now made the request to have an assessment whilst my MIL is in a hospital environment.

Thanks again.
 

Margaret W

Registered User
Apr 28, 2007
3,720
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North Derbyshire
Well at least you know they have the staff to have someone with her all the time, so she is safe. Delaying visiting is not a bad idea, it might get her used to the surroundings.

Be prepared for a plea to "take me out of here", and say "I hope it will be soon mum".

I hope the Unit works with your mum to determine what her needs are, and then you can look for a place that suits those needs. Sadly, it may not be in the most convenient location for you, but her day-to-dare care must take priority. You might have to visit less if this is the case. A local home (Buxton) for the young disabled recently closed and residents have been moved to "more appropriate" homes in Liverpool, Runcorn and somewhere else. Not at all manageable for the relatives!

I wish you well.

Probably not appropriate but try to have a bit of a break for Christmas, knowing mum is being well looked-after.

Love

Margaret