care homes - where to start

jikkie

Registered User
Aug 23, 2015
64
0
Last week progress was made, visited an Alzheimers Soc day care place... and had an assessment by ss. I think he will be given two days a week.

But now it raises more questions. Firstly, since the two "adventures" last week, my OH has been so much worse I can hardly believe it. I think if he does go to day care, he will be very difficult indeed later in the day. So will it be worth it I wonder? (That's rather a rhetorical question, I know I have to start somewhere.) But then, if he is difficult in the centre.... starts undressing, won't sit down... whatever, will they allow him to stay? When we visited I noticed all the people seemed "normal", all sitting, some chatting, some reading, some painting, having lunch.

Next I think I need to do the legwork on care homes, both for respite and for long term, as if the current rate of decline continues, I don't think I will manage for long. I will need eyes in the back of my head to keep him safe, apart from the obvious difficulties. I had always thought that the tipping point would be when he no longer knows who I am, but I am not so sure of that now. Are respite homes different places from long term places, or do some offer both?

So, how does it work? It would have to be fully funded. The social worker did not have a list of homes. Alzheimers Soc just gave me the link to bettercaring.com. Does the home have to be in our LEA area (we live on the edge)? Do I ring them all and find out if they qualify for fully funded places... narrow it down like that? I am not going to be able to top up at all, in fact if he goes into care I won't have enough money to live on. Or do the LEA tell us where he must go? The social worker, who was kind, friendly and seemed very professional offered no info whatsoever.

I'd like my fingers to do as much of the walking as possible, get fully informed, before I start visiting. That part will be grim.... the plain research not so bad.

We are in Cardiff.

Any info and advice where to start, how to proceed very welcome!
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hello jikki. Im sorry that your husband has arrived at this stage. I was sad, but also relieved when mum went into a CH.
Have SS agreed to him going into a CH? If he is to be fully funded this is where you have to start. Once they agree that he needs to be in a CH then they will give you a list of places that they will fund - it is very restricted though. I think the tough bit will be persuading them to accept that he needs to be in a CH. They seem to have to show that they have tried everything else; 4 carers visit a day (tick), day centre (tick)...... and if he refuses to go they will often say that they cannot force him :(

Many places that offer respite care (probably most, if not all) are in fact CHs and many people have taken respite care as prelude to permanent residential care. I think this is probably the place to start. Contact SS and say that you are needing respite.
 

jikkie

Registered User
Aug 23, 2015
64
0
Thanks for responding. So are you saying the legwork cannot start until they agree he needs to go into a CH? That's awful, considering the wheels turn so slowly.

Yes, working on the respite side. Social worker on hol currently. I asked for a week's respite.... she asked where i would want him to go and did they have vacancies! Of course I hadnt a clue.

Seems to be rather chicken and egg. I just want to inform myself, so when the time comes (3 - 6 - 12 months, who knows) I will be somewhat prepared.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
As mum is self funding I looked around at local CHs before she moved into a CH and talked to the manager. I dont see any reason why you could not do the same. When you talk to them ask them whether they accept residents who are fully funded and explain that you cannot afford top-up fees. This will give you an idea of when she could go. I agree, though - the wheels of SS do run exceedingly slowly.
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
Jikkie there is no reason you can't go and take a look around some homes, ask your questions as to what type if care they give, what level of dementia can they handle and of course do they accept the Local Authority level of funding. You also need to know if they have a waiting list, some homes have really long waiting lists.

It will be much better to do it at your leisure than be running around like a headless chicken when the time comes.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Hi jikkie
I'm just wondering how much home care you already have in place, as you are concerned you may not be able to manage much longer with your husband at home.

As it appears that SS in general are reluctant to agree to a move to a care home until every other avenue has been shown to fail, it may be worth having as much home care (4 visits a day), day care and respite as is possible asap and then keeping a record of how your husband reacts (maybe a daily diary of his behaviour and your concerns) so that you have evidence for SS that, sadly, it is no longer enough to care for your husband satisfactorily at home.

you've probably already seen these
https://www.alzheimers.org.uk/local-information/dementia-connect#!/results/list?q=%7B%22place%22:%22CF23%205DA%22%7D
http://www.carehome.co.uk/care_search_results.cfm/searchunitary/Cardiff
http://www.cqc.org.uk/search/services/care-homes?location=Cardiff%2C%20United%20Kingdom&latitude=51.48158100000001&longitude=-3.1790899999999737&sort=default&distance=15&mode=html&f[0]=im_field_more_services%3A3659

and to check about your own finances, maybe talk with CAB - and there's the AS helpline
0300 222 1122 or by email at helpline@alzheimers.org.uk.
The helpline is usually open from 9am to 5pm Monday to Friday, and from 10am - 4pm at weekends

best wishes
 

Florence.

Registered User
Nov 7, 2012
116
0
Last week progress was made, visited an Alzheimers Soc day care place... and had an assessment by ss. I think he will be given two days a week.

But now it raises more questions. Firstly, since the two "adventures" last week, my OH has been so much worse I can hardly believe it. I think if he does go to day care, he will be very difficult indeed later in the day. So will it be worth it I wonder? (That's rather a rhetorical question, I know I have to start somewhere.) But then, if he is difficult in the centre.... starts undressing, won't sit down... whatever, will they allow him to stay? When we visited I noticed all the people seemed "normal", all sitting, some chatting, some reading, some painting, having lunch.

Next I think I need to do the legwork on care homes, both for respite and for long term, as if the current rate of decline continues, I don't think I will manage for long. I will need eyes in the back of my head to keep him safe, apart from the obvious difficulties. I had always thought that the tipping point would be when he no longer knows who I am, but I am not so sure of that now. Are respite homes different places from long term places, or do some offer both?ñn

So, how does it work? It would have to be fully funded. The social worker did not have a list of homes. Alzheimers Soc just gave me the link to bettercaring.com. Does the home have to be in our LEA area (we live on the edge)? Do I ring them all and find out if they qualify for fully funded places... narrow it down like that? I am not going to be able to top up at all, in fact if he goes into care I won't have enough money to live on. Or do the LEA tell us where he must go? The social worker, who was kind, friendly and seemed very professional offered no info whatsoever.

I'd like my fingers to do as much of the walking as possible, get fully informed, before I start visiting. That part will be grim.... the plain research not so bad.

We are in Cardiff.

Any info and advice where to start, how to proceed very welcome!

Hi jikkie. I also live in Wales and have found the Age Cymru fact sheet on moving into a care home etc very useful as things can sometimes be slightly different in Wales to other places. I'm also going along the route of respite now. My husband is at day centre three days a week but I need a break at night. I wouldn't worry about how your husband will be at day care as they are very used to handling people with different situations and it will be a break you need. He will settle when he comes back and get into the routine. My advice would be to get some respite built into your social services package and look at care homes. If your husband has medical conditions as well as mental health problems you will need care homes that offer nursing as well. The nursing cost is covered by the NHS which the SS assessment will cover. If your husband goes into care they will not leave with without enough money to live on and you can have your own financial assessment done to see how much you need. Take a step at a time. Maybe have care coming in to start as well as day centre, combine with respite when you need and see how you go. You can view care homes when you want to but home care, day centre and respite can all be increased if you need them. Do ask again for help here as it's a big subject. Good luck.:)
 

arielsmelody

Registered User
Jul 16, 2015
515
0
My MIL lives practically on a county boundary (in England) and she's moved into a care home in a different county although only a few miles away from her home - it hasn't caused any significant problems, so I wouldn't restrict yourself to looking at only homes in the original county.
 

jikkie

Registered User
Aug 23, 2015
64
0
Thank you all.

Florence, I know this sounds a silly question, what is actually meant by nursing in this context? The only other problem my OH has (currently) is parkinsonism.... so he is very rigid, and tottery on his feet, really struggles now dressing from the physical angle as well as the knowing what to do mental side.

He isnt incontinent either, just very messy. And it is now very difficult to get him to shave or clean his teeth, but thats mental...

Quite hard to split these things between physical and mental sometimes.
 

Florence.

Registered User
Nov 7, 2012
116
0
Thank you all.

Florence, I know this sounds a silly question, what is actually meant by nursing in this context? The only other problem my OH has (currently) is parkinsonism.... so he is very rigid, and tottery on his feet, really struggles now dressing from the physical angle as well as the knowing what to do mental side.

He isnt incontinent either, just very messy. And it is now very difficult to get him to shave or clean his teeth, but thats mental...

Quite hard to split these things between physical and mental sometimes.

Nursing is anything that isn't covered by personal care and needs a nurse to do. Care home charges cover bed and board which includes personal care. A persons assessment includes what is covered and what is needed for the persons condition. Most homes have either a nurse there or ones that come in. On the mental health side my own opinion is that I would always look at care homes that can take people when they reach the advanced stages to avoid moving them. Until recently these were referred to as EMI (Elderly Mental Impairment) registered homes and take patients up to end of life. Keep asking hon.:)
 

Kevinl

Registered User
Aug 24, 2013
6,050
0
Salford
If it would have to be funded by the LA then firstly you'd have to have an assessment and get them to agree it's the only option and that's a bar that is set very, very high.
Wherever possible they like to keep people at home simply on the grounds of the cost of care in a home, so don't expect they to give in too easily.
I (somewhat grudgingly) managed to get a list of the suitable homes, I asked which one's didn't need a top up and was told they didn't know, I'd have to ask.
I visited 8 or 9 place and all wanted a top-up, I think £80 a week was the lowest and £450 a week the highest. I went back to the social worker, gave her the list back with the top ups written next to them and asked her to go back to the funding committee and ask for more money, she then produced a couple more place not on the original list and by coincidence neither needed a top up and both quite nice, not the best but still as good as many that wanted a couple of hundred a week that I don't have.
This was section 117 funded so they had to offer her somewhere without a top up that could meet her needs, I don't know that this applies to all LA funded care though.
When I visited homes I just turned up and they show you round there and then, that seems to be the accepted thing. I was asked about my wife but as we were walking round, then it's off to the next one and do it again, no one ever as me to prove anything I could have just been someone who likes visiting care homes.
As I say though I think getting the LA to agree to fund won't be easy.
K
 

jikkie

Registered User
Aug 23, 2015
64
0
Without going into the details, just had a major meltdown here....

I was asked by the social worker which of 3 choices applied, a) happy to continue caring b) happy to continue but only with help/respite c) not willing to care any more

so i think here, option c is possible. not quite at that point yet....but at this rate of decline, it will be nearer than i ever expected

from what i understand, they cannot force you to care.

gosh i sound brutal, but at this precise moment I am feeling brutal !!!

To think it was only a week ago that I succumbed to getting ss involved....
 

pamann

Registered User
Oct 28, 2013
2,635
0
Kent
Hello jikkie, 1yr ago my husband went into a CH, l had carer's breakdown, l let things get to bad befor seeking help.
He went to a day care centre once he was to difficult for them. Would not have carer's in the home, l was not happy to have them either. SS found a CH for 2 wks respite, l was not well enough to have him back home, CH said they didn't know how l looked after him for so long. It was a great relief for me. I do have to pay £60 top up fee's, they also take all his government pension, and half of his two private pension. It is expensive, maybe it is different in Wales, we live in the South East.
 

Kevinl

Registered User
Aug 24, 2013
6,050
0
Salford
a) happy to continue caring b) happy to continue but only with help/respite c) not willing to care any more.QUOTE]

I got a similar question but it was phrased differently, option C was "not able to care" rather than "not willing to care". I went for option C as I just couldn't go back to the situation where I was constantly being shouted at, hit on a regular basis (including in the face with a tin of beans), having things thrown at me, getting no sleep...I could go on and it's a long list. Bottom line was she was sectioned and they asked me this after she's been in a secure unit for a few weeks, it was a hard on to answer but I went C.
She's now well looked after 24/7 by some lovely staff and calm as anything most days, then as happened the other day, while I was visiting she completely lost it with me and the old her came back, I know I did the right thing , but I've still never really come to terms with how much I miss her.
K
 

jikkie

Registered User
Aug 23, 2015
64
0
Thank you all again.

We have an appointment with the specialist on Thursday, lovely man- no doubt just a tinker with meds - but will see if i can talk to him.

Also get an appt with our lovely GP, see what she has to say about "medical" grounds for care, as opposed to what some might think of as me throwing toys out of my pram. Some people seem to cope with so much, but I know I cannot.

And speak to the social worker in somewhat different terms when she gets back from holiday.

Call all the dementia homes in Cardiff for the basic info. Though I am afraid I will put off the visiting part if I can.

I am just appalled at the decline in a week... I really am... tonight he wouldn't sit down for his dinner, instead put his hands in it and threw it everywhere. Unfortunately there was tomato based ratatouille... you can imagine the mess on aqua carpet.... I'm afraid I had a meltdown, first ever actually, shouted at him and bawled my eyes out. I seem to react very badly to any damage to the house.

Yes financially same here in Wales, but in the guidelines I did find a saving grace, i think they have to leave enough to enable me to continue living here.... para 34 of the income annex i think. Need to print it out and keep to hand.
 

Kevinl

Registered User
Aug 24, 2013
6,050
0
Salford
I know we have different NHS systems so would ask is "para 34 of the income annex" a piece of English or Welsh legislation? I tried looking it up without success. I'd always taken it that that the usual rules (all state pension, half occupational pensions, lose some benefits...and all the rest too long to list) were non negotiable .
I've never some across "i think they have to leave enough to enable me to continue living here" it's a new one on me (not that I know everything, or indeed anything).
As I say it's new to me and who decides the amount you need, what can you claim is reasonable; a roof over your head, food, bills paid, shopping in Waitrose, what's reasonable to keep you living there.
I'd love to know is this a welsh thing or something I've missed.
K
 

Jinx

Registered User
Mar 13, 2014
2,333
0
Pontypool
Jikkie, I live in Wales too and had to deal with Caerphilly and then Torfaen Council after we moved. They both had different rules and regulations but they can't make you move out of your house. They will take 100% of any state pension your husband may be entitled to and 50% of any occupational pension he may have. They cannot take any income that is in your name into account when making their assessment.

As has already been recommended look at as many EMI residential homes as you can within Cardiff and surrounding areas. You can get some idea from the inspection reports for each home available on line but there is no substitute for a physical visit. Don't give them any warning but out of courtesy try to avoid mealtimes. You should find a list of homes on the council's web site.

Hope you find somewhere suitable soon. xxx


Sent from my iPad using Talking Point
 

Florence.

Registered User
Nov 7, 2012
116
0
Thank you all again.

We have an appointment with the specialist on Thursday, lovely man- no doubt just a tinker with meds - but will see if i can talk to him.

Also get an appt with our lovely GP, see what she has to say about "medical" grounds for care, as opposed to what some might think of as me throwing toys out of my pram. Some people seem to cope with so much, but I know I cannot.

And speak to the social worker in somewhat different terms when she gets back from holiday.

Call all the dementia homes in Cardiff for the basic info. Though I am afraid I will put off the visiting part if I can.

I am just appalled at the decline in a week... I really am... tonight he wouldn't sit down for his dinner, instead put his hands in it and threw it everywhere. Unfortunately there was tomato based ratatouille... you can imagine the mess on aqua carpet.... I'm afraid I had a meltdown, first ever actually, shouted at him and bawled my eyes out. I seem to react very badly to any damage to the house.

Yes financially same here in Wales, but in the guidelines I did find a saving grace, i think they have to leave enough to enable me to continue living here.... para 34 of the income annex i think. Need to print it out and keep to hand.

Oh jikkie I do feel for you but please don't feel guilty that you reacted emotionally. We're all human, tired and up against it in one way or the other. Try and get your social worker to sort out a package to include home, respite and day centre Try and get transport included as well. If it's in place you can call down what you need as you go along. As for finance,yes, if your husband is below the £23,750 limit for Wales and you need residential care, they take his State pension and half of any private pension, as stated. Your home cannot be included in the assessment and only half of any assets held in joint names, including bank accounts and savings, can be counted. He will be allowed to keep around £24 per week for personal expenses like toiletries. I like to have all my information like this ready in case of need. You might find this present situation passes so do consider having help in, respite and day centre first. You can still look at homes when you are ready but don't think you have necessarily reached the residential stage because there was a difficult situation and you had a melt down. I had this last week but it passed and now onwards and upwards.x
 

jikkie

Registered User
Aug 23, 2015
64
0
I know we have different NHS systems so would ask is "para 34 of the income annex" a piece of English or Welsh legislation? I tried looking it up without success. I'd always taken it that that the usual rules (all state pension, half occupational pensions, lose some benefits...and all the rest too long to list) were non negotiable .
I've never some across "i think they have to leave enough to enable me to continue living here" it's a new one on me (not that I know everything, or indeed anything).
As I say it's new to me and who decides the amount you need, what can you claim is reasonable; a roof over your head, food, bills paid, shopping in Waitrose, what's reasonable to keep you living there.
I'd love to know is this a welsh thing or something I've missed.
K

Kevin, this is what I found:-

http://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance#annexes

Annex C, para 46 d)

Sorry, I had remembered the para wrong.
 
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