Care Home can no longer care for mum

[zena285]

My mum has vascular dementia, she has been in a care home since December 2012. My sister and I visit her every day as it is quite close to our homes, two miles away(one of the major reasons for picking this home!)
My mum has never allowed the care staff to care for her, she only allows my sister and I to wash her and deal with all her personal care. She will take tablets from the care staff but if they need to take bloods or any other tests either me or my sister have to be present to calm her down. She can be quite aggressive to every one else but me and my sister, hence she is now on medication for the aggression, it hasn't really worked! Brief scenario over:
We have had a phone call from her SW this afternoon saying that the care home feel that they can no longer care for her. The SW says she feels that mum now has to be placed in an EMI unit with nursing care, we know this will just make mum more aggressive. The only home available about six miles away, is not one we would even consider placing her in! Question is how far away can they place her from us we don't want to restrict our being able to visit her too much! She is currently funded by LA and means tested so pays most of her pension towards her care.
Sorry for this being a bit long winded but any advice greatly appreciated.

 

[matt27]

perhaps you could ask SW if mum has had any dementia care mapping by a home treatment team which will look in to the aggression mum is displaying also my experience is that sometimes pain relief can be key to agitation and the fact that some times pain relief can change a person with dementia behaviour depending on the dose and finding the level which mum might need. ask if they could use a pain scale to judge mums pain if she has any she might not but I think before mum has to go to nursing they should look in to every avenue before they make a decision.

Sent from my GT-I9300 using Talking Point mobile app

 

[Alison12]

Emi

So sorry your mum is having to move from the home she is in. We are also having problems finding a home for my father who suffers with lewy body and has violent outbursts. Please could you let me know what is the difference between an EMI unit and a nursing home. I am sure unless my fathers medication is sorted he will have these outbursts where ever he is.

Hope you get things sorted very soon.

Many thanks ,Alison

 

[Saffie]

An EMI registered nursing home means a nursing home that are able to admit and care for residents with dementia as opposed to one that isn't registered a such.
The same applies to an EMI care home. I hope this helps.

 

[zena285]

Mum is already on painkillers plus other medication so not sure that pain is an issue with her.
SW said the difference between emi and emi nursing is there is a better staff to patient ratio, and they will be better able to deal with her outbursts. Don't think this will solve anything as mum just doesn't want to be around strangers or anyone else with dementia.
Asked SW what happens if the next place decides that they can't care for her, she said then she will go to a unit for people challenging behaviour, don't know what this is as I thought challenging behaviour was what dementia was!
If she is moved too far away we will no longer be able to help with her care as we do now, the care home she is in now quite regularly used to phone us up to come and help them deal with her as they said they were limited by the law in what they could actually do to care for her, if mum said no then they had to respect her wishes even if that meant she wasn't washed, had clean clothes on etc. I don't understand how they said she had to go into the care home as she lacked the mental capacity to make any decisions about her day to day life and yet when she is in the home she is deemed to have enough capacity to make decisions again!

 

[Witzend]

If she is moved too far away we will no longer be able to help with her care as we do now, the care home she is in now quite regularly used to phone us up to come and help them deal with her as they said they were limited by the law in what they could actually do to care for her, if mum said no then they had to respect her wishes even if that meant she wasn't washed, had clean clothes on etc. I don't understand how they said she had to go into the care home as she lacked the mental capacity to make any decisions about her day to day life and yet when she is in the home she is deemed to have enough capacity to make decisions again!

An EMI home should be better able to manage things such as bathing. It was a nightmare trying to get my mother in the shower or wash her hair before she went into the CH, but the staff seem to manage it fine. She's always clean, with nice clean hair, and all the residents are the same. It is a specialist dementia home, and I would guess they don't actually ask anyone whether they want a shower, only to be told no. I would guess they have a matter of fact way of just getting on with it.

 

[Haylett]

Zena, can you get a list of possible homes for your Mum? I would do your own "research" and visit whatever might be proposed by the SWs. It's possible that with more specialist care, your Mum will feel more secure and cared for.

I also think (though have no experience of homes at all) that just under a year is a relatively short space of time for someone with dementia to settle. However, the sad fact remains that if the staff aren't coping now to care properly for your mother, you have to wonder what will change for them to be able to cope better in the future.

I completely understand why you'd like her near you to be able to help, but I'd try to get a realistic idea of what your (and your Mum's) options are; and also find out how any "new" home might deal with challenging behaviour because you don't want the answer to lie in increased sedation.

 

[zena285]

Mum is already in a specialist dementia unit, they have a seperate dementia nursing side, another reason for placing her in this particular home, we thought that should she deteriorate then all she would have to do is move to the nursing side. So if a dementia unit cannot cope with her then what next, how many times does she keep getting moved on when they can't cope with her?

 

[Haylett]

Mum is already in a specialist dementia unit, they have a seperate dementia nursing side, another reason for placing her in this particular home, we thought that should she deteriorate then all she would have to do is move to the nursing side. So if a dementia unit cannot cope with her then what next, how many times does she keep getting moved on when they can't cope with her?

I'm so sorry - that certainly is hard and it seems extraordinary that they are saying that they cannot cope, when clearly you are also supporting them to give the best care to your Mum. How sympathetic/easy to talk to is the Matron? I hope you get it sorted soon. It's an awful position for you all to be in.

 

[nita]

I would get the SW to come out and visit you and your sister to discuss this fully. You need to put your point that you and your sister are the ones providing the main care and calming your mother. You are concerned for her welfare if you are not able to visit her easily. Why is the nursing side of the current home not suitable? You just need to have a full discussion about all the issues involved. I hope you can get this sorted out satisfactorily for you all; I can understand how worrying it must be.

PS You say your Mum is already on painkillers but is her pain any worse and perhaps not being controlled completely? My mother is so much better since her medication was got right. In her case she needed pregabalin but she does have severe osteoarthritis.

 

[zena285]

Got to see the 'dementia' doctor that has been treating mum for the last few weeks, just by chance I was at the home when he was visiting, was a bit surprised to be told that he had been visiting regularly over this time, we thought she had only been visited by the local GP! He has updated her condition from 'just' having vascular dementia to having AD now aswell, he says this is what is now making her behaviour a bit more challenging and for them to get the medication right. He is starting her on a new medication for the AD and will look to maybe giving her risparadone? if necessary. He explained why he thought mum should be moved into emi nursing in that the higher staff/patient ratio is better. He says the new medication will take a couple of weeks to work, but how do we know if it is working if we now have to move her to a new home that will add to the disturbed behaviour!
We have an appointment with the mental health nurse this morning, first time we've seen her since February! And after that we have an appointment with care home manager, she wants to explain her decision to not keep mum at their home, not that I think I even want an explaination now, she did say she didn't have a choice as she said the 'safeguarding people' had told her that mum had to go, so will the same people say the same thing in the next home...and the next home....
Have also spoken to a lovely lady from local Alzheimers group, she was very supportive and most helpful.
I really don't know how anyone does this all on their own, I am so lucky in having my sister to go through all this with, we have long discussions into the night with copious amounts of tea! (We have other siblings too but they are quite happy to leave all decision making to us).

 

[sistermillicent]

hi Zena, my mum takes risperidone, it is an antipsychotic and it worked immediately. She takes it because otherwise i don't think anyone would be able to look after her, in the first instance, but also, we feel, her family, that living with the aggressive feelings must have been very hard for her.
She has respite in an EMI nursing home quite often and also goes to day care there, they are very lovely people but the place is not buckingham palace to look at.
My initial feeling was that mum didn't fit in with the other residents, but now i don't notice and think she is just fine there.

A new care home should really do a very thorough assessment of your mum to ensure they can meet her needs and look after her well. This should avoid the need to keep transferring her from one place to another.

i hope you have the name and proper job title of the dementia doctor as you will then be able to communicate direct with her/him.
All the best x

 

[Shash7677]

Hi Zena, I'm sorry to hear about the problems you are experiencing with mum in her CH, unfortunately it does happen that people need to be moved. My mums first home could not cope with her level of dementia, she was moved to an EMI NH and we've never looked back. Can I salt why you wouldn't consider the home SS are recommending? Have you heard bad reviews?

When mum was moved we were looking at distances of up to 40 miles from where we lived for suitable homes, unfortunately close to home homes don't have places very often and to get mum the best care then you may have to travel. The home mum is in doesn't seem to be able to cope, you and your sister should not have to be doing mums personal care every day.

Just going back to your point about only having seen a GP whilst mum has been in the home and not seeing the Mental Health Nurse, as far as I'm aware as soon as a sufferer enters a care home they are discharged from community care, this means no visits from the community psychiatrist etc, they see the GP that is attached to the home who will refer to the mental health team should they need to. Mum hasn't seen her community psychiatrist since the day she entered the psychiatric assessment unit she was in which was back in July 2012.

As others have said I would speak to the home manager, maybe arrange a meeting with yourself, sister and social worker at the home and discuss what is happening with mum and see where you go from there.

Hope you get sorted,
Sharon

 

[zena285]

Mum had been signed off from the Community Mental Health Nurse and transferred to A Mental Health Nurse that looks after people in care homes. The dementia doctor is a consultant psychiatrist that had taken over her care a couple of months ago, she also does occasionally see the GP for day to day issues like infections. The consultant has started her on some Alzheimers medication, starts with an 'm', can never remember the names of all the medication she is on, she is also still on an antidepressant that they hoped would have calmed down her agitation, started on a low dose and is now on a higher dose, it worked for about a week!
While we are looking for a new placement for her, I now pick her up after breakfast to bring her to my home and we take her back at 7pm, she then just goes straight to bed, she isn't a problem at night she tends to sleep really well and soundly.
The care home and medical team are quite happy at this arrangement for the time being as she is no longer posing a threat to anyone in the care home! And we get a bit of breathing space to sort out her new living arrangements.

 

[zena285]

Looked up the 'm' drug, its memantine!

 

[zena285]

Update on Mum: We have waited three weeks for a place in another home, Mum was assessed last week and they said they would be able to take care of her, so she is moving into her new home today. This is a relief as we have spent the last three weeks picking Mum up from her old home at 10am and returning her at her bedtime(she is no bother overnight) as this is the only way they would keep her at the old place while we found another placement, we didn't want Mum to be given an emergency placement just to have to move again after a couple of weeks, there was a possibility the emergencey placement would have been thirty five miles away!
We are going to move all her things into her new place while she is being occupied by one of my sisters at her home. Hopefully that will limit any distress she may have about moving.
The move from the old home is probably a blessing in disguise as the new home manager is making a few changes that we wouldn't be keen on should Mum have stayed i.e. she has had all carpets taken up and replaced by laminate flooring, even in the residents lounge, everything is so echoey now! Even Mum says she doesn't like being in this 'hospital' because that is what it looks like now and I thought care homes were meant to be just that, people's homes, not clinical cold places.

 

[CINDYJANE]

Risperidone

hi Zena, my mum takes risperidone, it is an antipsychotic and it worked immediately. She takes it because otherwise i don't think anyone would be able to look after her, in the first instance, but also, we feel, her family, that living with the aggressive feelings must have been very hard for her.

My mother lives alone with two safety checks a day, but as her short term memory is almost non existent now , I am looking at care homes as she is also 60 miles away from me. At the moment she won't let anyone help her- except for me sometimes, and her carers say she can get aggressive if they try. So I am worried what kind of home I should look for and how she would react.She is a naturally anxious person and her doctor had prescribed RISPERIDONE, but as it has been difficult to administer her tablets, he has decided to take her off them. I didn't know they could help with aggressive outbursts? Her latest dose had been reduced to just 0.5mg once daily (though sometimes she would take 3 or more in one day....) What dose was your Mum on sistermillicent?

I was advised to look for a home which had mild to moderate dementia residents. Would this mean I should only look at homes specifying dementia care, or would some ordinary residential care homes be able to cope, provided they were secure? Zena, It is worrying to hear that your mother's home caters for dementia sufferers but they can't cope. I do hope you find a solution to your dilemma.

 

[sistermillicent]

I don't remember what dose mum is on, dad takes care of the tablets but i think it is 2 a day.
You need to go and look at various homes and see what you think of them, there is no obligation to put her name down at any of them. lots of people here say don't make appointments, just turn up, but i never did that because i felt it was invading peoples space without an invitation. You may find it helpful also if you can ask to have a chat while you are there with the person in charge because that gave us great advice about what kind of home mum would need (for respite). It turns out she needed a proper 'EMI nursing home to keep her safe - the CPN and social worker had got it quite wrong in our case.

Zena, I agree about laminate flooring, what is there to like about it, only suitable for conservatories in my view unless you have awful asthma. I have even covered over proper parquet flooring in my own house because i like carpet, it's cosy and comfy to sit on.
I am glad your mum has a place somewhere you like.

 

[Shash7677]

My mums Nh removed all the carpets from upstairs and replaced with a laminate type Lino, basically it was because they just could not keep the carpet clean, residents having accidents on it (toilet wise), general spillages etc etc. Upstairs in mums home used to smell awful, no matter how many deep cleans the carpet had it was never clean. Some residents in mums home including mum are fond of walking round in bare feet.

The laminate/Lino is put down as it's much easier to clean, doesn't smell and is more hygienic, if someone does have a wee it can be mopped up and disinfected. Much more difficult to do with carpets.

Not everyone's choice I know but that's generally why they have it in place.

I'm so glad you've found a home you like, I hope mum settles well.

Sharon

 

[sistermillicent]

Oh I understand why they can't have carpet, I think Lino is ok as it is warm and a bit softer, not so echoey and certainly not lethal when wet.