Worried about losing home - Mums Care

[Snafs]

Please don't anyone give up on me!

There is just a lot of mix and unknown going on right now, and people I have contacted getting hear to 1st meetings.
As of TODAY nothing bad has actually happened to me, it's all "threat" and what I think's going to happen.
As someone said, It's hard to cry for help when you don't even know for sure what really will happen.

In my mind I am expecting a letter asking about mums finances for me to fill out?
(how would they know how much she has anyway)
I fill it out honestly, and perhaps send it off?
Albeit I have already verbally told the social people she has less than 10K so they may not bother with that.
And I may just get a letter on my (I say my!) doorstep any day saying:
"We have assessed your mothers finances and needs and are going to require valuation and sale of her main asset - Home"
Or something like that.

And I'm not even going to get a mention...... I really don't know.
This is new, I'm lost and so so tired,

 

[love.dad.but..]

Sorry you will have to remind me what I've not done that you have suggested.
I'm bee trying to put over that I'm not really up to this, which is why I'm trying for help myself.
I'm totally blind, and just want to crawl into bed now and pretend it's not happening.

Been so on my mind recent days that a large wave of tiredness has swept over me and I almost don't know what I want anyone.

OT assessment?

All I've done is been called into one social workers 1st meeting, where my mum said she's like to come home.
This person said, I'll contact the doctor and the hospital and gather data and get back to you.

Ok, so I waited. A few days later, the lady rang me up and said.
"What have you decided?"
I said, I don't know, I was waiting for you to come back with your results/findings.

She said she'd get in touch soon as she's going to get her boss (american as it turned out) to come with her soon to do a follow up meeting, which we had yesterday.

The both looked at mums notes at the bottom of the bed, asked mum where she wanted to go from here, mum said stay, but they tried to explain why not.

Spoke to me, saying hospital says 24/7 care due to balance.
then never tested her walking, just taking this as it's written down.

Mum was taken away and they basically asked me about pro's and con's of a full care home.
I had to be honest and say, well, there are lots of pro's can't really fault the idea from mums safety point of view I guess.
And my cons, well not much, just the funding aspect (not to be talked about of course)

They said ok will be in touch with details for you to look at some care homes (like I know what I'm doing!) and I went back to mum, who was insistent in her mind the home was mine.

So now I;m waiting for their next call.

What did I do wrong? I'm feeling just like a passenger here as I've no idea the chain of events, it's all new and baffling to me.

I have Time to talk person phoning me tomorrow.
I've been assigned a gentleman from Advocacy in Surrey to come visit my home in 2 weeks time, and the CAB a meeting next Friday who were supposed to call me today to perhaps bring meeting forward but have not been in touch.
A blood test appointment checkup with Doc (making sure I'm ok as dad died of prostrate cancer so I wanted to get checked out)
And another doc appointment about a pain in my hip I've had for two years now (worried the pain won't go away and my uncles both had bad hips)
Perhaps to do with poor circulation in legs I've had for many years and was prescribed some sock things for.

Oh yes, I recall someone asking why I was pointing out "American"
Please....... I have nothing whatsoever against Americans
I simply felt it was pretty stupid/unfair to have someone assess an elderly lady, with hearing not as great as it was, and understanding not as great as it was.
And have someone do this assessment who had a quite strong American Accent.
Seems stupid.

That was me...I was not suggesting that you had a problem with her being an American...my dad was assessed by a mental health practioner that I couldn't understand let alone dad but they often are experienced enough to pick out enough verbally and from body language...just that to help you to stop going round in circles prioritise what you can hopefully influence and not dwell on what may annoy you. I hope my suggestions were of some use however and that you find a way forward

 

[Beate]

Well he can't help being American and having an accent. He still has a job to do. There are quite a lot of different accents where I live in London - you can't say it's stupid for having them in jobs where they might have to talk to people.

Anyway, I think I see the problem. You were asked for cons of your mother going to a care home and you pretty much told them there weren't any, but agreed on the pros. So they went away thinking you agreed. If you think your mother should come home to your care, you have to make a proper case for it. However, I think in your current tired and confused state you might not be able to do that so you need someone to do it for you. It's great you have an appointment with the advocacy people, but two weeks' waiting time isn't really good enough in your situation. Have you got a local Alzheimer's Society office you could ring, or a Carers Centre?

 

[nita]

Request another meeting with the SW and say you were tired and mixed up. I think you perhaps should have put the 'pros' for your mother staying at home - it is familiar to her, you can look after with the help of carers, etc. Put it to them that she could come home with carers coming in. Is there a local day centre she could attend? They would arrange transport for that. Raise that point again that you made earlier, that she had falls due to the medication she was taking and that she is no longer on that medication. State what the drug was - is it one known to give problems with balance or cause drowsiness? I think you need to write down all the relevant points.

They were asking you of the 'cons' of her coming home from her point of view, not yours so that's where you should have said that, with support, you could still have her at home. Then it would be up to them to raise any fears for her safety/care.

Why have they not suggested a trial run at home first? You need to ask them.

It is disappointing that the Mental Advocacy are not coming to see you for 2 weeks. Is there any way you can visit them or get the appointment brought forward in view of the urgency of the situation? Phone them and find out. Can you get some time off work to sort things out?

The SW, in my case, handed me the financial assessment form for my mother. This has to be completed regardless of how much or how little savings/assets a person has so that SS know the full situation.

Do you visit the hospital - have you spoken to the sister on the ward? You should be able to find out if physios have visited your mother and what their assessment of her walking is. If you speak to the SW again, point out that your mother needs to be assessed by them in any case, before she is discharged. You could also mention that you have seen her walking unaided and that, with a frame, she would be safe.

Did you manage to find out whether that was in fact a "best interests" meeting? I really think you need someone to come with you to any meetings as it is hard for you to grasp all the details if you are emotionally involved.

 

[Snafs]

Well he can't help being American and having an accent. He still has a job to do. There are quite a lot of different accents where I live in London - you can't say it's stupid for having them in jobs where they might have to talk to people.

Anyway, I think I see the problem. You were asked for cons of your mother going to a care home and you pretty much told them there weren't any, but agreed on the pros. So they went away thinking you agreed. If you think your mother should come home to your care, you have to make a proper case for it. However, I think in your current tired and confused state you might not be able to do that so you need someone to do it for you. It's great you have an appointment with the advocacy people, but two weeks' waiting time isn't really good enough in your situation. Have you got a local Alzheimer's Society office you could ring, or a Carers Centre?

Well I have a hospital notes and a SS person saying mum needs 24/7 care.
So I don't know how I could stand up and say, forget all that, mum will be better at home. I would have thought that would have seen to be a bit silly, esp after mum just basically said she wanted to stay there (or a place like it)

If I may hark back to the language issue, of course, there any many languages any people.
It was just a elderly very English old lady, who having issues understanding, I guess I gentle very clear English accent she was more used to, would have seemed a bit fairer, but anyway, it was just an observation. No worries.

I've just picked up some voicemail (how I missed the calls I don't know. Bloody work")
The local law center (free advice) apologizing (she was off sick) asking me to call back, and the CAB gave me a number to call back to try and shift my date forward.
So I have a number of things to do in the morning now!

I'm not looked for any local Alzheimers numbers as that would be with regards to my mums welfare and that side of things I'm sure it well in hand by social.

 

[nita]

If you can get to see someone and they will accompany you to any meetings, find out first when that person is available and then speak to the SW about arranging a suitable time/date for meeting. You need to say that you need support yourself in these dealings.

 

[Snafs]

Request another meeting with the SW and say you were tired and mixed up. I think you perhaps should have put the 'pros' for your mother staying at home - it is familiar to her, you can look after with the help of carers, etc. Put it to them that she could come home with carers coming in. Is there a local day centre she could attend? They would arrange transport for that. Raise that point again that you made earlier, that she had falls due to the medication she was taking and that she is no longer on that medication. State what the drug was - is it one known to give problems with balance or cause drowsiness? I think you need to write down all the relevant points.

They were asking you of the 'cons' of her coming home from her point of view, not yours so that's where you should have said that, with support, you could still have her at home. Then it would be up to them to raise any fears for her safety/care.

Why have they not suggested a trial run at home first? You need to ask them.

It is disappointing that the Mental Advocacy are not coming to see you for 2 weeks. Is there any way you can visit them or get the appointment brought forward in view of the urgency of the situation? Phone them and find out. Can you get some time off work to sort things out?

The SW, in my case, handed me the financial assessment form for my mother. This has to be completed regardless of how much or how little savings/assets a person has so that SS know the full situation.

Do you visit the hospital - have you spoken to the sister on the ward? You should be able to find out if physios have visited your mother and what their assessment of her walking is. If you speak to the SW again, point out that your mother needs to be assessed by them in any case, before she is discharged. You could also mention that you have seen her walking unaided and that, with a frame, she would be safe.

Did you manage to find out whether that was in fact a "best interests" meeting? I really think you need someone to come with you to any meetings as it is hard for you to grasp all the details if you are emotionally involved.

Nita, you sound an amazing person who gets things done.
I'm just now feeling shattered.
I have all these appointments looming and docs
the social meeting with me not knowing that's going on.
Them saying to me, and what about getting up in the night.

Every single day and night this is occupying my mind, and at work, I'm just literally running out of steam, it very nearly too much to deal with on my own.
I've tried to explain this is why I'm at home. I can't deal with this stuff.
I want to hide at home like I always do,

The social lady did not get back to me to tell me if it was a best interests.

I am about the email the Advocacy guy perhaps I can ask if this is the soonest.
It's hard to explain to others I know, but i just want to run away at the moment

 

[Snafs]

It's hard to admit this, but I need to.
As you know I've said I've live at home since age 7 and just alternated for the most part between work and home. Parents were always there and dad went and mum was always there.
Whilst I was doing a lot, it was still mum and me.
Now mum is gone I'm alone and never having, perhaps grown the hard skin of the harsh cold world I'm struggling with the concept of anything other than I've known.

I appreciate this is a hard concept for most adults to grasp, but it's how I am.
I can function, but only really in the two environments I know.

 

[nita]

I'm sorry, I know all this is very hard and emotionally gruelling. I think you need some time off work not just for appointments, but for your own health. You need to get some rest. I'm sure they'll appreciate that at work.

Can you request time off - if not special leave, perhaps you could take some of your annual leave entitlement? Then you would be free to attend appointments with these different organisations.

Try to keep calm. Keep a list of what you need to do and points you need to make. Then put it aside and try to switch off from it all.

 

[nita]

I can function, but only really in the two environments I know.

This is precisely the point you need to make to the Advocacy team. Your mental health is precarious and you have needed support all your life. I know exactly what you mean as things have been similar for me.

 

[Snafs]

This is precisely the point you need to make to the Advocacy team. Your mental health is precarious and you have needed support all your life. I know exactly what you mean as things have been similar for me.

Thank you Nita.
I have been taking time off work, probably will be every morning this week.

I have tried to get all I can get done for the day THEN go into work (mostly for the afternoon)
There is not really much else I can do at home once any phone calls or appointments have been arranged than just sit around, which is why I go into work.

Honestly I am of the mindset now if ANYONE dare have a go at me at work, I'd just come home and say I'm going off sick.
As I am using up holiday hours right now.
I think when "the bad bits" hit I may need more time, so I may see the doc for official time off then.
there is no-one there to cover my work (their fault) so they get a bit upset.

The meeting with the Advocacy guy is 2 weeks from tomorrow. I just emailed him and said, earlier if possible, but that date is fine.
I'm going to feel very embarrassed admitting my mental feelings to a man, as I find it easier to open up to a woman as men are not supposed to be like this in front of other men (stupid I know, but it was how things were when I grew up)

If I need time off, I take time off and that's that.
I'm also trying my best to keep notes of everythings and I have many blue folders now with A4 hand written notes as I was totally losing track of everything.

thanks

 

[nita]

Even if your mother does go into a care home, you still have to find a suitable one as she is self-funding. So I think you have leeway with time, especially as you said earlier your mother was not yet regarded as a bed-blocker. Is she still not regarded as medically fit for discharge? Perhaps all the discussions with the SW are just preparatory.

I am a bit concerned you have folders full of notes. Can you condense them down to the most important points in a logical way. Perhaps a list of notes regarding the "mandatory disregard" issue, notes of what to say to the SW, etc.

Another list to make! Things to say to the advocacy person. I know it is hard admitting to your personal problems (keep in mind they are not failings) especially if you haven't really opened up to anyone before. You have to remember why you are doing this.

I hope I am not giving you false hope that you can keep the house. I just think you should pursue every avenue before you give up. The legal person you are seeing will know about other options for staying in the house, such as a deferred payment agreement if your mother goes into care.

 

[Beate]

Snafs, you're very eloquent on paper. If you're feeling tongue-tied talking to anyone in person, why not put it in writing and hand it over? You could just print out or copy and edit this thread, to be honest, it's all in here.

 

[Snafs]

Even if your mother does go into a care home, you still have to find a suitable one as she is self-funding. So I think you have leeway with time, especially as you said earlier your mother was not yet regarded as a bed-blocker. Is she still not regarded as medically fit for discharge? Perhaps all the discussions with the SW are just preparatory.

I am a bit concerned you have folders full of notes. Can you condense them down to the most important points in a logical way. Perhaps a list of notes regarding the "mandatory disregard" issue, notes of what to say to the SW, etc.

Another list to make! Things to say to the advocacy person. I know it is hard admitting to your personal problems (keep in mind they are not failings) especially if you haven't really opened up to anyone before. You have to remember why you are doing this.

I hope I am not giving you false hope that you can keep the house. I just think you should pursue every avenue before you give up. The legal person you are seeing will know about other options for staying in the house, such as a deferred payment agreement if your mother goes into care.

Well, this is how crazy I think it is right now.
Cart before the horse!
Is she self funding or not, I don't know?
If they take our family home then yes, if it's decided my situation has enough merit to save our home, then she won't be self funding.
So how can I go around looking at homes till after all this is done.
Unless it's put her in some place then have to pull her out again.
It's all back to front in my mind.

Not sure about medically fit as such
Only real issues I can thing of is the worry about balance and her ability to know what's best for herself.

Folders:

CAB Folder.
Doctor Folder for my doc issues
General appointments and notes folder
Advocasy in Surrey folder
Time to talk folder
Social worker stuff folder
And a Folder just about me as I started a couple of weeks ago, to write my life history/issues down, things that stuck in my mind from the wooden cane dad used to hit me with between the ages of perhaps 5 thru to 10 ish, being literally dragged screaming and fighting mum dragging me into infants school the 1st day and standing in the corner of the classroom crying.
thru bullies at school, going into hopital and being left there on my own age 13 to have operation on hand done. And only child.
I know it's sad to say, but I've been so lonely since as long as I can remember.....

Yes I'm aware of just coming out with lots of stuff and needing to focus.

 

[Snafs]

Snafs, you're very eloquent on paper. If you're feeling tongue-tied talking to anyone in person, why not put it in writing and hand it over? You could just print out or copy and edit this thread, to be honest, it's all in here.

Thanks it's not for lack of being able to speak it's lack of focus.
Like now I do feel part of what I'm doing is pointless, and perhaps some I am going to see or speak to are not going to be helpful in the 1 single point, Why I need help from the guy

I could speak for hours and hours to a Councillor I'm sure.

 

[nita]

It seems to me, but I may be wrong, that nothing definite has been decided yet. The first issue is definitely where your mother is going to live and this is what was being debated recently. This is what should have come out/maybe still has to be resolved at any Best Interests meeting. If they are telling you to look at care homes, it looks as if they think this issue is resolved. You seemed to concur that your mother would be best looked after in a care home.

However, you were confused and didn't put your perspective properly on this - that your mother has always lived with you; will obviously respond better to someone she loves; you can care for her with help, etc. if possible, you need to get the people involved back again round the table to talk. You need to listen to their point of view regarding her safety/risk of falling etc.

Once this has been decided, then the funding is looked at. This is when they will do a financial assessment and see if your mother's property should be taken into account.

You have got it all confused in your mind because you were not sure which way this was going or whether you could have your mother at home. I think you need to get it straight yourself whether you think your mother could/should come home (disregarding your own interest in the house) - whether she would be safe and properly cared for. Once you have got this straight - perhaps you feel in your heart of hearts that she would be best looked after in care and she is definitely happy with this - then consider the next step.

If you decide she ought to go into a care home, then you think about the funding issue and possibility of your losing the house and do all you can to get it disregarded either by a mandatory or a discretionary disregard and, if all else fails, a deferred payment agreement.

 

[Snafs]

It seems to me, but I may be wrong, that nothing definite has been decided yet. The first issue is definitely where your mother is going to live and this is what was being debated recently. This is what should have come out/maybe still has to be resolved at any Best Interests meeting. If they are telling you to look at care homes, it looks as if they think this issue is resolved. You seemed to concur that your mother would be best looked after in a care home.

However, you were confused and didn't put your perspective properly on this - that your mother has always lived with you; will obviously respond better to someone she loves; you can care for her with help, etc. if possible, you need to get the people involved back again round the table to talk. You need to listen to their point of view regarding her safety/risk of falling etc.

Once this has been decided, then the funding is looked at. This is when they will do a financial assessment and see if your mother's property should be taken into account.

You have got it all confused in your mind because you were not sure which way this was going or whether you could have your mother at home. I think you need to get it straight yourself whether you think your mother could/should come home (disregarding your own interest in the house) - whether she would be safe and properly cared for. Once you have got this straight - perhaps you feel in your heart of hearts that she would be best looked after in care and she is definitely happy with this - then consider the next step.

If you decide she ought to go into a care home, then you think about the funding issue and possibility of your losing the house and do all you can to get it disregarded either by a mandatory or a discretionary disregard and, if all else fails, a deferred payment agreement.

Perhaps my brain is working back to front here.
If I said, go and pick a car you want.
You're 1st questions I would expect would be.

1: What type of cars are we looking at
2. What price range can we afford.

Otherwise you just walk to the Rolls Royce garage and pick that one.

If I don't yet know how the funding is going to be met or if I will lose my home, or some discretionary thing will be in place I don't know what to look at, as I can just go for the best one a mile away £2500 a week and say that one.

As I understand it the council, if they fund, bulk buy places in certain locations, in which case I'd need to see what those were like and if they were nice or not.

It seems back to front.

Again on the home front, they don't seem to believe mum needing the toilet can ever be safe at home, and mum has not said "I want home" so it's hard to push for that I'm feeling.

It just seems silly to look at homes before the funding.
I could say, yes the £2500 one, she gets put there, then say the home is disregarded, then she will get pulled out of this super expensive one and moved to a "council approved one" I guess which would not be good for anyone.

And I going crazy here?

Bluntly if the home goes, mum will almost never see me again.
home prices anywhere near here are vastly outside any budget I could even dream of, so I've be forced to move, on my own literally 100's of miles away to some cheap part of the UK.
It will be bad all round

 

[Beate]

It may seem back to front but this is how it is and the sooner you come to grips with that the better I think. It's no good rallying against things you can't change, I'm afraid.

But no one is going to put your Mum into a home then pull her out again due to funding - basically no care home will take anyone without knowing who's going to pay so the funding will need to be agreed first. So the sequence should be as follows:

1. A decision being made on what type of care
2. A decision being made on who funds it
3. A care home being picked

However, after step 1 you can go and look at care homes in your area. Social Services should be able to provide you with a list of the ones they would fund fully in any case. You know there are private and council rates? So the home you might have to pay £2,500 for while self-funding might give the council a much cheaper rate, making it affordable for them too. Also, quite frankly, expensive care homes aren't always the best. Look for quality of care not swish buildings! I was told that my OH could theoretically go anywhere in the country if I so wished. I was restricted to nursing homes and there are only two in my borough so I had to look in neighbouring boroughs as well, as waiting lists can be long. In the end we got a room in one of the borough's homes, because the SW was pushing them like crazy once I said it was my preferred choice. OH was blocking the closure of the ward he was in so they needed to find a solution fast, but I still had a say - maybe because I had the health LPA, I don't know, but they always included me in the decision making.

 

[Snafs]

Thanks, well I have Advocacy coming (2 weeks from today unless that can be changed)
And will bring this up again at the Docs tomorrow for an appointment for something else.

Right now, I'm still feeling exactly the same as I do at work. (and this is not pointed at anyone here) No one yet is taking me serious. They keep saying, "oh you can go and look at care homes soon" when in reality I'm going to bed and waking up, thinking about ways to end it all with the least amount of pain possible and making a will to leave some savings to.
Yes I know that will sound silly talk but that's where my mind is.
Not happily skipping around care homes thinking of the future.
Like at work, Until I actually quit and walk out only then will anyone think. Oh perhaps it was serious.
I have an initial Counselling meeting over the phone in just over half a hour, but no idea how good that's going to be as I've been told by my doc not to say the type of thing I have said above otherwise they won't want to know.
Don't know what else to type now, as I'm round in circles.
Got calls to make after meeting about things, so will post back a few bits later.
Right now, even though, in reality still nothing has physically happened I'm starting to get to the end of my tether. Fingers crossed there may be a glimmer of light soon.

 

[canary]

Until I actually quit and walk out only then will anyone think. Oh perhaps it was serious.

No they probably wont.
I gave up work to look after mum and OH, but everyone just shrugged their shoulders and said "your choice"
If you gave up work now before anything is decided then you run the risk of ending up with no job and your mum still going into a care home - which would be the worst of both worlds.

First make sure that the SW knows that you would prefer your mum to come home. Mention things like it is better for people to be in their own home that they are familiar with, where they recognise things and and are cared for by someone who loves them. Ask about carers and day care so that she can be kept safe while you are at work. Perhaps have an advocate with you to help you put your side. Do NOT mention the cost, or about the house at this stage.

If SS still decide that your mum needs a care home, then there will be a financial assessment to work out how it will be funded. At this point you can find out about a disregard - perhaps getting back-up from your GP.

Just dont give up your job at the moment.