What to do for the best - Help !

[Keely]

My sister and I moved mum to a small dementia unit consisting of 8 residents. It has 2 day staff and one night staff. However, when we made the decision (a decision which mum also took part in) we were given assurances that should mum deteriorate this would be her home for life and she could stay in the unit unless her behaviour had a significant negative impact on other residents lives. We were also led to believe that "negative impact" was equated with violence.
My mum moved to the unit six months ago and although her diagnosis was Alzhiemers she had some type of TIA or stroke three weeks ago. Physically she recovered relatively quickly over about a 5 hour period but mentally she has deteriorated very significantly. She is not able to recognise where she is or me and my sister and has lost much of her ability to verbally make her self understood and seems unable to understand what is being said to her and is very anxious.
The staff seem well trained and carrying out all the main aspects of good dementia care. I am concerned though that the manager may suddenly deciside that mum is impacting on other residents and she may be asked to leave. I say this because despite the reassurances we were given before hand with in the last 3 months 3 residents have suddently left. There has been no mention of them but I have asked what has happened to them and the staff and the manager just say they had deteriorated and they could no longer manage to care for them. The manager has recently also said to me that the only way they can care in the face of increasing need is if the resident gains continuing care funding so the unit can employ extra staff. The unit is not a home it is classed as supported living with full time support. The first words from the manager following mums GP visit after the TIA/stroke was we are not a nursing home if she can't transfer with one she has to go to hospital. I am very concerned now that the manager may at any point just say the unit can't cope with mum and then what? Should i start looking for another home? I don't know what to do - if I start looking for other homes what is the difference between a nursing home which takes dementia residents and an EMI unit?
Any support and advice would be welcomed. I really thought we had covered all basis before moving mum and now feel we may be back to square one! I am realy upset and stressed and feel dealing with mums deterioration is difficult enough. We haven't even managed to sell her previous supported living appartment yet and feel we have only just got her fully settled at this unit. The thoughts of starting searching again sends me into despair. Help!

 

[jenniferpa]

Hi Keely

I'm sorry you have been mislead about this. And I do feel this: if you were told that your mother would be able to stay in this "supported living with full time support" facility indefinitely then you were mislead. It seems clear to me that in the event the person needed nursing care this would no longer be a suitable placement for them and it was very unfair (and yes, deceptive) that you weren't told that at the outset.

Of course, this doesn't mean that they are about to to ask her to leave, just that I can really understand why those other residents have been moved.

In your situation I would corner whoever is running this and ask for a clear statement with regard to what they can or cannot manage in the future. It's very unfair that you and your mother have been put in this position, but the sooner you have a firmer idea about what they can handle the better with regard to your future planning.

 

[FifiMo]

This might not be what you want to hear but I don't think they would be legally allowed to continue to care for your mum if she needs nursing care. These places are subject to limitations on the care which they are licenced to provide and given the current staffing levels which you describe, it is clear that they do not have the ratio of staff that would be required if nursing care was needed. When recently trying to find a home for my mother, no residential home was allowed to take her as she was deemed to need elements of nursing care, despite the homes themselves saying that overall they thought residential care would be preferrable for her. They would have been in breach of their licence which did not let them provide nursing care.

I saw they said that she could stay if continuing health care was approved but my question would then be, so they can buy in nursing staff, but do they have all the equipment that a nursing home would have at its disposal for those nurses to use? I suspect not.

I'm with Jennifer on this one and I think you have been mislead somewhat. If it was me, then I would be looking for a registered nursing home in the longer term. Not necessarily because they will try to kick your mum out but because you will want to ensure she gets the proper level of care that she might require.

Fiona

 

[Keely]

Thank you for your honesty and information. I want to sort out a fall back position if I can but I don't understand if there is a difference between a nursing home which will take a person with dementia and and an EMI unit? Are there seperate criteria?

 

[ooster22]

EMI with nursing Homes

When sadly we realised mum would not be able to come home after her months in hospital we started to look at Homes. My experience was that it is really, really difficult when someone needs both physical and mental care (as my mum did). We looked at many homes and our favourite was a lovely, homely place with caring staff. The home had both residential and EMI patients and it was a lovely mix of 'abilities'. However, after being assessed by the Home and talking to the nurses at the hospital, sadly they could not take mum as her nursing needs were more than they could deal with. We also 'phoned two Nursing Homes (which we had had good reports about) but they did not take EMI residents - NIGHTMARE.

There were 3 Homes in our area that we looked at that took EMI residents AND could take people with nursing needs. Two were incredibly depressing, dark and smelly with all the residents slumped in chairs HOWEVER, we were so lucky - we found a Home (which happily was the closest to where we live) which is bright and cheerful, where there is a mix of residents needing nursing care, EMI care and both. SO THERE IS HOPE. My advice would be if and when you have to start looking for somewhere else for your mum, phone the Homes first and find out if they take both EMI and Nursing needs residents - it will save you wasted journeys.

Then when you do find some you want to visit - ALWAYS go unnanounced, go with your initial gut feeling about the place and visit several times at different times of the day.

Good luck and I am so sorry you are having to think about moving your mum.

Love and support xxxx

 

[Keely]

Ok thats a good help I will start the hunt and you give me hope that there may be something suitable out there! As mum has recovered physically from the stroke I think I will start with EMI and then just incase she does have another incident and requires nursing I will look there next. At least I can get her name down and hopefully then not be in an emergency situation or force to have mum in hospital. I am afraid the episodes of hospital admissions have been less than positive experiences as there is no account or care for the dementia side.
So glad you found something close to you for your mum. Thanks again.

 

[ooster22]

Just wanted to clarify what I meant

Hi Keely,

Glad my experience with my mum and finding her a suitable place was of help. Just wanted to clarify what I meant by 'initial gut feeling' - for example - we visited a home that looked like (from their glossy brochure and in 'real life') a hotel. However, when being shown round by a member of the staff there was no interaction (that we saw) between staff and residents and the whole place had a depressing air about it. On the other hand the CH (that sadly could not take mum because of her medical needs) wasn't the smartest or 'posh-ist' but the staff were so caring and kind with the residents and it had a real feeling that it was the residents' home - not that they were in a 'Home' (if that makes sense!).

The other comment I made about residents being 'slumped in chairs' - Just in case anyone reading my reply to you takes offence (!) .... I feel there is a huge difference (and one I believe people can spot) between residents who may have physical problems sitting comfortably in chairs and those who are simply 'plonked' in a chair because it is more convenient for the staff. Of course in mum's CH there are residents 'sitting around' but on all our visits staff interact with these residents, making sure they are comfortable, chatting with them etc.

Hopefully, your mum will be able to stay where she is - but I think it is a really good idea for you to start a 'just in case' hunt for a CH, at least then you will know what is out there and which places would be possibilities should there come a time when your mum does have to be moved. I would strongly advise however, that if you think there is any possibility that your mum's medical needs may increase in the future, you should look at EMI homes with nursing capabilities as if you do have to move your mum, you don't want to be faced with the same problem again further down the road.

xx

 

[Keely]

I have a meeting for monday with the manager and the social worker but I have started the hunt ! and rang a few places to day - and will just do some on the hop visits. Although I can hardly face moving poor mum again neither can I face her going into a hospital or an emergency admission to an EMI/nursing as the ones that have a place a short notice are unlikely to be the best of the bunch. Thanks for the support. I don think the suggestion of EMI and nursing facitlity is a good idea.

 

[ooster22]

Good luck for Monday

All the best for the meeting on Monday and good luck with the 'hunt'.

xx