Not a great start to Christmas

[Feezee]

Hello again
Happy Christmas to everyone. I've posted a few times about my dad (lives in a park home alone, recently got his licence taken away).
My dad's been in an assessment ward for the past two weeks and yesterday we had a meeting with the Consultant and various other professionals and we were told that he's got mixed vascular dementia (I think that's right) and a probable life expectancy of between 2 months and 2 years. He's deteriorated so rapidly in 3 weeks (mostly since he's been in the unit) - it's like he's fallen off a cliff in terms of his understanding of the world and his grasp of "today". Poor old dad ;-(

They believe he is no longer capable of independent living (he lives alone) even with care support and they recommend residential care - preferably somewhere that when he gets worse, he won't have to move again and that could deal with his eventual increasing medical needs. Part of me is shocked and upset it's happened so quickly but part of me knows their conclusion is right and it's the best place for him to be. Would that be a "dementia care home with nursing" that would prevent him from having to be moved again? Is that the same as EMI and what does EMI mean?
They've contacted Social services to do an assessment and I assume the SW will contact us for our input but meanwhile they've said we should start looking for suitable homes. I suppose they are one of the few places that are all open over Christmas!

I'm probably worrying myself unecessarily (I generally do) but what's the likelihood of the SW going against the recommendation of the doctors/consultants and not coming to the same conclusion? Will they try and say he can cope (with a care package) and send him back to his home alone? I want to be able to visit him regularly too, so don't really want them to suggest a home that's miles away from where I live.

I'm dreading the whole thing - particularly the financial side (I have an active Lasting Power of Attourney with my brother).
Does anyone have any tips on what to look out for at this stage? We've found lots of Age Concern Links on the financial side and also I found a post on here that linked to a copy of the Assessment Form (really interesting).

Not a good start to Christmas ;-(

Feezee

[Izzy]

Good morning. Sorry I haven't the xperience to help I just wanted to say hello and I hope you manage to have a peaceful Christmas. Izzy x

[Vonny]

Hi Feezee, sorry you're not having a good Christmas. EMI stands for Elderly Mentally Ill and is recommended for people with dementia.

As to if the SW can over-ride the medics, the multi-disciplinary team (psychiatric, medical and social) should all come to a mutual decision.

I think all you can do is wait for SS's input and then if you disagree with their ruling you can appeal. Be ready for them when they contact you for your input. Make a list with bullet points as to why your dad needs care and make sure you include "at risk", "vulnerable adult", "duty of care" etc. Make it easy for them to read because if you write a narrative it's easy for them to ignore key phrases.

Good luck and I hope you manage to enjoy some of Christmas

Vonny xx

[susiewoo]

This was me 3 years ago. the way you say 'falling off a cliff' is exactly the feeling. This is a desparately sad time for you and all that I can say is 3 years later my Mum is settled in a residential home and is happy as she can be with this terrible disease eating her up.
But when Mum was in assessment unit she was so ill and to be honest they did nothing to help infact caused a lot of her problems with over medication/boredom/being frightened etc.
The choice of home is a myth. the SS can tell you were the places are and there aren't many so what choice do you have?
If you are self funding you have greater choice but still have lack of places.
the main reason to go and see some homes is to get a view of what is the reality. If like me you have never set foot inside a home you may well be appalled and there will be places you wouldn't put your cat in so you will know to refuse those.

try to be as informed as you can be about everything...don't be shy about challenging the people in power.....what do you want for your Dad? Be vocal and write evrything down so you can keep it all straight in your head cause its so confusing and you are so sad.this all takes energy,look after yourself too.

I kept a daily log of events and reading it back I am amazed at the things that happened.
This message board was my lifeline and even if you don't post there is a lot to learn from others experience.

[Nebiroth]

EMI stands for Elderly Mentally Infirm. It just means that they specialise in the care needs of geriatric patients who, as the name suggests, have mental health issues as well - virtually always dementia. They are usually secure - sounds awful but it is to prevent the residents from wandering out. They tend to be smaller and have fewer residents because at that stage people don;t cope well by being in "crowds", also the staff-resident ratio will be higher and they will (or should) all be trained to cope with challenging behavior. There should be a nurse to deal with the medical requirements.

The decision as to placement will be a co-decision between the hospital and social services - a patient cannot be discharged until an agreed plan is in place. I think it unlikely that social services will contest the hospital's recommendation that your dad needs residential care.

One thing - you say your dad is on an assessment ward. Was he placed in hospital under Section of the Mental Health Act? If so it would be a Section 2 which is for intitial assessment, although he may be under Section 3.

This is important, because people who are discharged from Section may remain under Section 117 - a recognition that they have a continuing need for treatment but no longer have to remain in an actual hospital. It's important because people under 117 get all their care funded by the NHS - just like they would in a hospital.

There have been cases where local authorities have charged people under 117 when they should not.

[hazytron]

I have no experience of this stage of Dementia, I'm sure my turn will come,my thoughts are with you.
Hazel

[Feezee]

Izzy
Thanks so much for your early morning wishes. Didn't get much sleep last night for worrying!

Vonny - thanks - I will include all those phrases in some notes for the SW. So when a care home says demetia with nursing does that mean EMI?

Suziewooo - thanks for your kind words - yes - it's hard trying to be strong and to keep on the ball at the same time. If his little park home is sold (and I imagine it will be) then initially he will be self funding but we would still be limited to cost as we couldn't supplement any difference in the cost of a nicer home.

Nebiroth- I was there when it was decided to "take him in" for assessment/get his meds under control. The consultant and nurse clearly asked him if he wanted to go into hospital to "get it all sorted" and he said yes. The nurse did say to me as an aside that if he didn't agree he'd be taken in under the mental health act. Also, when he was going through the admittance process they asked him if he was happy to stay there and he said yes. Of course he didn't know what he was agreeing to at all. So I am assuming he is not under section. Perhaps I should ask as this may have changed as he's been trying to escape all the time.

Hazytron - thanks so much for your thoughts. It's difficult right now but I'm hoping as Suzywoo said it will get easier.
Feezee

[fredsnail]

Feezee, my Grandfather has vascular dementia and he initially went into a residential home as we were told that was what he needed - however within 4 months they couldn't cope with him.

He is now in a residential/nursing home (ie they have 2 sections - one residential one nursing) and not an EMI home.

The home went to assess him at the hospital before he moved in and they assessed him as requiring residential care (even though his residential home said they couldn't cope with him) but they assured us that if/when he needed nursing care he could remain in the same room and have the same carers but would have the extra care as required.

This has worked very well - he had a fall and broke his hip so now requires nursing care and the home have been wonderful with him.

If I can help some more or you have any questions just pm me.

fs

[Sandy]

Hi Feezee,

One thing that might be relevant when it comes eventually to financial matters is that 'mobile homes' are viewed differently (ignored in fact) from other types of property by the authorities.

This is a thread that explored this topic some time ago:

http://forum.alzheimers.org.uk/showt...ht=mobile+home

Now, I don't know in which way a 'park home' compares to a mobile home, but it might be possible that it won't be counted by the authorities as a property.

Take care

[Willowgill]

Hello Feezee - your story is very like mine 6 months ago when my mum ended up in hospital after a fall at home and deteriorated rapidly in 3 weeks. She went from being able to shuffle around holding onto furniture and able to get to the toilet unaided to being unable to walk at all and totally incontinent, her mental state also deteriorted (she had already been diagnosed with AZ). They then wouldn't allow her to go home and I was told to go and look for a suitable care home with 24 hour nursing care - they didn't think she needed EMI care. I can sympathise with you and can only tell you of my own experiences with the Social Services/hospital care team which more or less took over once the decision had been made. I too wanted her close by so that I could visit daily and take my father too who also has dementia. I visited two homes in the near vicinity one of which was literally round the corner and wonderful but was EMI and also full. The other one is also only a short distance away which is where she was transferred to from hospital. I visited unannounced and was welcomed by both places and shown round without asking which I took as a good sign. Both smelled and looked clean and the residents all looked clean and relaxed although in varying degrees of mental and physical health. The staff were very friendly and the residents seemed to have a good relationship with them - something which six months down the line I can only emphasise is so important. Mum was assessed by both the home and care workers - they all agreed this was the best plan for her. She has had two assessments since going into the home with the hospital discharge care team and social care, and then again with the social workers a few weeks ago to make sure she was still in need of 24 hour care. Both times all have agreed this was the case. At the moment she is funded by both social services and the NHS as my father is still living in their home - we had to have a financial assessment as well to determine how much she needs to contribute.

As others have said this is a very sad, worrying time for you but in some ways like me you appear to have had the decision taken away from you which does help a little. I'm sure that your father will be better cared for in the home you choose than he would be on his own and wish you well in your search for suitable accommodation.

[Feezee]

Fredsnail, thanks very much for sharing this with me - I'll watch out for this. And thank you for the generous offer of help.

Sandy - this is invaluable, thanks. I think that the park home is the same as a mobile home - that it is not on the land registry and therefore would not be considered capital but of course the minute it's sold the money will be taken and go towards care.

And Willowgill - thank you. I am starting to get my head around it now. I just hope that whatever is available is relatively near and not horrible. Looks like we'll be paying some places a visit.

I can't thank you all enough for your help and support. It makes a big difference.
Hope you have a peaceful rest of Christmas holidays.
Feezee

[suejb]

I have been going through a very similar situation with my Dad who we have managed to place in a care home last week on a trial basis. I found it extremely difficult with the SW particularly as they visited Dad in his own home when we werent there and he said he didnt want to go into a home. They decided I was doing it for my own convenience (we live 60 miles away) despite both his GP and hospital consultant saying he wasn't safe to leave living in sheltered accommodation. I found that I had to be extremely forceful in insisting that he needed full time care (he has AZ and vascular dementia)and itemising all the circumstances which posed a risk to him. They were convinced that because he wasnt wandering out at night (which would be impossible because he cant walk through arthritis) he wasnt at risk. I was alos given good advice about a Local Government Circular (LAC(2004)20 which you can download from the Department of Health's website. It deals with the question of choice of a care home and is very useful to quote in your discussions with the SW.
I really do feel for you because its so difficult and heartbreaking. Good luck.
Sue

[Feezee]

Sue
I'm sorry to hear that you are having such a difficult time of it too.
Can't quite believe that a SW could take that approach with you but glad to hear that it has worked out OK so far.
Thanks for the hint on LAC 20.
I visited my dad today and he thinks he's popping up the road to visit me later so I'm not sure he knows who I am or where I live, although he recognised his grandson OK. I'm getting my "case" ready in case the SW decides that a home is not the answer. Wandering at night, drilling holes in walls, trying to break through PVC windows, inability to know when the front door is locked or not, talking about setting electrical traps for the "thieves" in the living room - hopefully these will help, along with an obsession with digging holes and cutting small trees down. You have to laugh at the list, really - he was still quite active until 3 weeks ago and can still get around quite well without any help. I'm hoping the SW is a reasonable person!

Hopefully your trial period goes OK and thank you so much for your post.

Feezee