Worried about losing home - Mums Care

[Snafs]

Little update:
Managed to be 1st in-line this morning at a local walk-in CAB office. (not main one, but a local one where a general CAB person comes round)
He started of very cold, I explained the very basics, he looked at his screen and blurted out something like. Well you will lose your home.
I was a bit taken aback at this cold straight faced reply, but it got a bit better from there.
He was bit, how can I put it. "matter of fact" not someone you would wish to see for any care/sympathy, but I guess that's not his job, and he was just dealing with facts.

Long story short, was in there for about 45 mins (good long time) and he wrote, a fairly long document about all my details. Nothing really about any of my "personal/mental issues" as that was not really the point of this meeting. Just that I had currently no official disability as such.

This is going to get passed on to someone else, and I have an appointment set up now for the start of Feb at the main CAB center, with, I hope someone who specializes? in this area and knows what's what, and will read his notes, and give me something more concrete?

I do feel better for getting this started as it's something, a lady at work has been telling me to get started for weeks, but as I've never known what the hospital will say (mum coming home next week) I did not feel I knew what problem I was going to face, so I did not feel I was in a position to ask them about a problem I did not know I had yet.

Also gave me a phone number of a free legal advice local solicitor, they were engaged and have not rung back, also the NHS talk people to start dealing with my long term "issues" were busy and not phoned back yet, but I need to get to speak to them.

On the mum front.... The Social Care lady called, and again reiterated that she had now talked to her superior ? and she also agreed re the hospital opinion of mum needed more than just temporary care. (residential/home) and the next thing is going to be a meeting (family meeting) with myself, her, her boss and my mum, to discuss the plan of action.
What mums going to say about this I don't know.
I fear I'm going to find this upsetting as, almost always, when asked a question by a stranger, mum looks at me for the right thing to say as she trusts me, and knows I'm the person she can rely on, so if I say something then in mums mind it's right.
I feel mums thinking "coming home", they are going to say "somewhere else" and mums going to look at me, and I;m going to feel terrible, as I know she wants things to go back as they were, when she knew she was safe with me.
Mum may get argumentative about the idea of not home, in which case I'm not sure what they will do, or she may just look at me, with big mum eyes, and accept what I say is best for her.

Making me a bit upset writing this.

I did mention to the Care Worker, I'm at the same time as having mum on my mind, having myself on my mind also, and praying I could get my issue sorted out first, then devote 100% totally towards mum without worrying about myself.
She was understanding (though I know it's not her concern other than wanting all family members to be happy with whats happening)
She did reassure me, that the hospital were not putting pressure on, and mum is ok there for a little while longer (not bed blocking she said) which is nice to hear, but of course, I know the wheels need to start turning.

I'm just typing here, to keep things up to date and keep a record, plus is nice to put things down, as it helps unload my mind a bit.

So even if no one reads this or replies, it helps

 

[nita]

I just thought you should be armed with this from the Age UK factsheet "Property & Paying for Residential care".

This is from Section 4.1 (mandatory disregard):-

What ‘incapacitated’ means
Guidance says it is reasonable to conclude a relative is incapacitated if
either of the following apply:

they receive any of these benefits: armed forces independence payment,


attendance allowance, constant attendance allowance, disability living

allowance, incapacity benefit, personal independence payment, severe

disablement allowance, or a similar benefit, or

they do not receive any disability related benefit but their degree of


incapacity is equivalent to that required to qualify for such a benefit.


Medical or other evidence may be needed before a final decision is


reached.

https://www.ageuk.org.uk/Documents/...erty_and_paying_for_residential_care_fcs.pdf?
epslanguage=en-GB?dtrk=true

You will also notice that there is a 12 week property disregard once a person goes into a care home during which this can perhaps be sorted out and hopefully will be decided in your favour.

With regard to your mother looking at you, I would advise you not to step in and just let her speak her mind first before you say anything. She needs to express her own opinion but whether it is decided - if she says she wants to come home - it is not in her best interests, that will be taken into account along with other opinions.

I think, from the point of view of medical evidence and what you present to any doctor, you need to go over your own life (painful, I know) and think of any difficulties and problems you have had and, as I said before, where these have prevented you from taking another job, leaving home or having a social life.

 

[nita]

https://www.ageuk.org.uk/Documents/...tial_care_fcs.pdf?epslanguage=en-GB?dtrk=true

The link reposted.

 

[Snafs]

Thanks Nita. I appreciate your time in posting that answer for me.
I just find it hard not stepping in, when I see mum confused and looking at me for reassurance as she wants to give the right answer, and is so used to looking to me, to make sure she's right.
But yes, I don't wish to put any words into her mouth.
I just have felt the need to ask them to rephrase the question in a less confusing way.

I'm a bit the same you see. Throw questions at me, and my mind goes into a kind of phased out/panic mode and I'm thinking about other things.

I've had it at work, been in a training meeting, they throw some info at us, and 5 mins later ask us to write down some aspects of what we've been told, and my mind is just blank.
I've been so worried about what they are saying I've lost what was told to me.

I guess I get that from mum!, Will admit, I'm more hands on than academic.

You last point. You said:

"I think, from the point of view of medical evidence and what you present to any doctor, you need to go over your own life (painful, I know) and think of any difficulties and problems you have had and, as I said before, where these have prevented you from taking another job, leaving home or having a social life."

Not sure what meant here, as I did say I went to see my doctor on Monday, he boosted the pills for me to try and gave me the leaflet to the NHS talk people, but so far no luck getting thru to them. Annoying when you work full time. makes all this hard, when others don't answer phones.

As I've seen my doc (monday) I suppose I feel I need to talk to others now who are better trained to help me, with my long term issues. Feels like wading thru syrup all of this.

 

[nita]

Hallo again, @Snafs. What I meant to point out was that you have to prove you have had ongoing issues all your life, not just now with the anxiety about your Mum and losing your home. Don't forget you can be eligible for PIP and still be working.

When you say you can't focus and your mind goes blank - is that only now or something you've had a long time? Because that sounds like lack of the ability to concentrate - another point to note on your list of problems. I don't want you to exaggerate what is wrong with you, just to emphasise where you find things difficult and that might make life hard for you to cope with. Do you have a "mental health advocacy" in your town? They could be able to help you articulate any issues which could help in your case.

I would advise you not to intervene in any meeting held with SWs, etc. I know the temptation - I have done it myself, rephrasing questions in a different way to help my mother understand - but in this case it is best not to do that. I don't think it will help your case or reflect well on you - it could look like you're trying to influence your mother one way or another.

 

[Snafs]

Thanks, but not sure I ever really even considered any PIP. Not a path I was thinking of.
Yes, I've been told to keep quiet in the meeting tomorrow with myself, mum, the social worker? and her manager, who has decided she wishes to do an independent mental assessment on my mum. I'm guessing it's because the last thing my mum said the previous week was that she'd like to come home, and then the hospital saying she's no be safe, so that's left them with a bit of a quandary legally, so again I'm guessing she needs to be sure that mum in not able to know what's best for her before they can go down the path they are thinking of.
I went to visit mum yesterday, and she was in good spirit.
As far as I can make out, she's happy there.
Funny thing is, she thinks it's all sorted out. In her mind, she's there, being looked after, I'm at home. She's happy I'm at home and said to me, "You are free now" as she has this image of now she's being taken care of, the home is safe and mine and I can progress.
Of course I can't tell her what I'm going thru and that her lovely image, whilst one I'd love to share is a long way from a reality at the moment.

It was a bit funny as I could literally have brought mum home yesterday. I was allowed to talk her from her bed, down the corridors and right up the the doors to the hospital, only 20ft from my car parked outside, with no one watching. Of course I'd never do that, but did make me wonder, what would happen if I have just carried on! I suspect a phone call at home within the hour when they noticed she's gone!

Anyway, that was just a silly thought that ran thru my mind at the time.

Busy week ahead.

Monday morning, meeting with mum and social people
Wed Morning phone assessment with the Time to Talk people
Thur Another Doc appointment
Fri Doc Blood Test

Also I called "Advocacy in Surrey" and the lovely lady said she was sure I qualified for their help and she emailed me a document/questionnaire, but it almost looks like someone else should fill it in and not me, so I've emailed her back asking if i need to fill it in.
Like box's to fill in with odd questions that feel like someone with experience should put down the answer, not the person (me) doing it.

I feel like I'm getting to a point where I'm going to start getting some support but it's feeling like it's going to be a few weeks away yet, and I'm feelings mums case is going to be presented to me as a problem, before I get there on my side.

I know I need to be patient. and it just takes time.
Right now, I'm still 100% alone, and just praying there is time for me to get what I need together.

Mum is totally fine in my mind either way.

 

[nita]

I'm glad you contacted the Advocacy service. They will probably go through the form with you and help you fill it in as they have the experience. Don't forget, you don't need to actually have PIP or claim for it, just be eligible for it, i.e. fulfil certain criteria like the need for some sort of supported/sheltered working which it sounds like you have.

Even if they start the financial assessment and look into the property, there is a 12 week disregard in all cases so you have time to sort things out. In the worst case scenario, if you can't get the mandatory or discretionary disregard on the grounds of disability after that, what about the deferred payment route where the house doesn't have to be sold until your mother passes? Depending on how long your mother lives, there may still be equity left after care home fees have been settled and you will have a home for that time.

 

[Snafs]

Thanks Nita
I'm totally making up numbers here, but I don't feel there is any reason why mum should not carry on for many years, which is great.
So let's say she lived another 10 years, that would mean, I reach retirement age at the same time they come to take my home away.
As I hope you can see, that's not a concept I'm finding appealing!

Side note: Went to see mum yesterday, and I'm so happy to say she's fine.
She seems totally happy and content where she is. She's very sweet
Saying to me, She is pleased I am free now (she means she is out of the way) and telling me I can sell her jewelry..... It's nothing of value, but it's just her way of saying do as you wish, all is fine.

In mums mind right now, all is settled. she is being looked after, fed and watered, Her Son is at home (free) as she wanted and all it good with the world.

Or course, that's a scenario both I and her would like to share, but it's not reality as we have the financial side to deal with that in her mind does not exist.

I took her for a walk yesterday, I asked permission if I could take her beyond the ward, the nurses (not doctor) said sure, didn't seem to mind, so I walked her down a few corridors right to the entrance, about 20ft away from my car!

I'm still not really getting this "Danger from Falling" issue.
She can walk, if I encourage her, without any assistance. Sure there needs to be something in case she overbalances, as she does not have the speed/agility or mental ability to correct a fall, but a stick would be enough I'm sure.

I asked her how she is, and she's happy
She's not screaming to come home, she's just contented.
Personally I'd be going nuts in there, but for her, she has no demands and is just ok.

Someone told me, and I'd appreciate some backing here.
If mum was ok with coming home, and I wanted her to come home as I felt she was not as bad as they are making out, then legally there is nothing anyone can do.
They would have to get a doctor involved, section her under some mental health act to step in, and go against everyone's wishes?

I feel torn, part of me thinks mum would do well in care, however I know she would also like to be home, I don't know if she would be able to get back to how she was before the fall.

Mum, of course cares a lot for me, and would hate to be anywhere and learn about the home being lost. Naturally she wants in her mind to know everyone happy.
The same as we all would do. If I had a son/daughter I'd want the best for them also.

I guess I want to wind back the clock, and thing be back as they were 4? months ago, and we could carry on as we were, at least for the time being, till perhaps in years to come there is a need to consider something else.

 

[Amy in the US]

I think wanting to bring our loved one/PWD home is a normal response for many. I do understand that, especially when, as you say, she is stable.

I'm not completely clear as to her medical history and diagnosis, but if I recall correctly she had a fall and is in hospital due to this/complications of same.

It may be different in the UK, but here in the States, if an elderly person has had a fall with injuries, they are generally classified as a "fall risk" afterwards.

I can understand you wanting to bring your mum home, for a variety of reasons. But first and foremost you have to consider her safety and what she needs for her care, and if the home, as it is, can supply that.

I am sure none of this is news to you, or especially helpful; I'm sorry. I am sure this is all very upsetting and wish you all the best.

 

[Snafs]

She had some falls due to the side effects of medication which she is no longer on.
And she had falls a year earlier due to the same reasons (side effects)
She's now off these pills (I understand she is on some alternate version)
I feel in reality she would be safe now she's off this medication. I've walked with her, and se can walk without anything for 20ft easy, though as I said I would be happy if she had a stick with her as she can use it, if she feels tired or needs some support.

At home, she would only ever be a few feet away from a wall, a table or something to steady herself against. Not out in the open like a hospital wars or corridor

I appreciate, they have perhaps 20+ people they need to keep an eye on at the same time. they have been warned my mum will get up on her own accord, and were told by the last hospital she had falls (on medication) so they stuck an alarm on her.

I'm not for one moment worried about her balance I;m totally sure at home in a much more confined and well known environment she's be fine.

I'm not however sure how she copes with regard the bathroom/toilet side of things.

She changed her jumper/sweater whilst I was there ok.

they tend to stick all patients in adult nappies, which I understand, but unsure how much this is needed.

I do feel a bit torn right now.

 

[nita]

You can put this point of view (that the medication made your mother unsteady and that you think she could walk all right with an aid) at the "best interests" meeting between you, the SW, your Mum and others. The danger they can see and you have to appreciate is your mother, for example, being left on the floor in pain, possibly with a broken bone, having had fallen with no one there. Would she know to press the Careline button? Even then, the damage could have been done.

Has the physio/OT been working with your Mum to get her walking on the ward? They usually do this before they discharge a person anywhere.

As I said to you before, if they agree to the idea of a trial at home, there will first be an assessment in your home with an Occupational Therapist to see how she copes getting around the house. They would probably also check the "toileting" issue to see how she coped with it. You would have to make sure there are no "trip hazards" such as rugs. Is everything accessible downstairs?

I suppose you have to bear in mind that the illness gets worse and your mother could develop other behaviours such as wandering, for instance, so even if she could cope at home with carers coming in four times a day, the situation could arise again that care would be considered.

 

[Pete R]

Someone told me, and I'd appreciate some backing here.
If mum was ok with coming home, and I wanted her to come home as I felt she was not as bad as they are making out, then legally there is nothing anyone can do.
They would have to get a doctor involved, section her under some mental health act to step in, and go against everyone's wishes?

If at the Best Interest Meeting it was decided that your Mum had capacity to decide where she wanted to live then yes she could go home. If it was felt she did not have capacity to make that decision then SS may well go to the Court of Protection to make the decision for her.

 

[margherita]

If at the Best Interest Meeting it was decided that your Mum had capacity to decide where she wanted to live then yes she could go home.

Here in Italy things are different, so my words are likely to sound useless or silly.
If your mother still has capacity, it means she can decide what to do with her life and her property. Couldn't she donate her house to you?
It would take time (in Italy, at least) to have her donation annulled and you could approach the age of sixty.
And time is what you need.

 

[Saffie]

Here in Italy things are different, so my words are likely to sound useless or silly.
If your mother still has capacity, it means she can decide what to do with her life and her property. Couldn't she donate her house to you?
It would take time (in Italy, at least) to have her donation annulled and you could approach the age of sixty.
And time is what you need.

Not once dementia is diagnosed I’m afraid and it could be seen as a deprivation of assets which would mean the Local Authority could and probably would still count the house as an asset.

 

[margherita]

Not once dementia is diagnosed I’m afraid and it could be seen as a deprivation of assets which would mean the Local Authority could and probably would still count the house as an asset.

I wish it were the same here in Italy. I wouldn't be so worried about husband making "wrong" decisions .
I'll ask again my lawyer .

 

[Snafs]

Not going well.
Meeting this morning, with 2 social care people.
Asked mum what she wanted, and she said she wanted to stay where she was.
Tried to explain, she could not stay there, as it's hospital, but to another place like that, but nicer with her own room.
she did not want that, and wanted to stay there.
She got upset and was on the verge of getting angry with these strange people telling her she could not stay.
The person asking questions was nice, but had an American accent which not help with regard questions.
(be easier if I had power of attorney, as i feel they are on the verge of stepping in and overruling things)
Asked me about pro's and cons of care home, and I could not really say there was anything bad with the idea as mum would be safe of course.
I did mention the financial side of the home, and the American basically told me, the fact I've been living at home for almost 50 years meant nothing she reckoned.
Mum is adamant that the "Home is mine" and got angry afterwards at the thought they would take it, she's so sweet. Even telling me to go get the solicitor and she would sign paperwork now for me.
I explained it does not work this way unfortunately.
Quite naturally she's upset as in her mind the home is mine as she always wanted.

American lady gave me a number to call at the financial benefits office who she said would be able to give me clear answers.

I phoned them when I got home, and the lady was nice but said whilst they would be the ones to look into mums ability to pay, she alone could not really help me of advise me.

This lady said the CAB are the best people as they are independent, and have their own legal teams, so they are the ones I should explain things to. (which is odd as other people say CAB isn't much use, so it's confusing)
But I guess she knows what she's talking about.

Problem is, my CAB meeting is not this coming Friday, but the Friday after that.
And that's of course my 1st real meeting to start explaining things.
And today the social people were talking about me soon to start looking at care homes for my mum.

That side of things is racing ahead of me.

In mums mind (sweet mum) she wants me to be at home and be free as was always the outcome I guess for many decades. But it's not turning out this way at the moment.

So I need to try and call CAB to see if I can get meeting brought forward if that's even possible.

I'm seriously panicking right now.

 

[Lavender45]

Hi Snafs

The best organisation I found for giving advice over property was Age UK. They have a tier system the first answering more general questions and the second tier answering more technical stuff. The second tier advisor was very clued up and gave me much more information than the CAB. I'm under 60 so wasn't sure they would speak to me, but they did as it involved mum who was 81 at the time. It might be worthwhile speaking to them.

 

[Saffie]

Not going well.
Meeting this morning, with 2 social care people.
Asked mum what she wanted, and she said she wanted to stay where she was.
Tried to explain, she could not stay there, as it's hospital, but to another place like that, but nicer with her own room.
she did not want that, and wanted to stay there.
She got upset and was on the verge of getting angry with these strange people telling her she could not stay.
The person asking questions was nice, but had an American accent which not help with regard questions.
(be easier if I had power of attorney, as i feel they are on the verge of stepping in and overruling things)
Asked me about pro's and cons of care home, and I could not really say there was anything bad with the idea as mum would be safe of course.
I did mention the financial side of the home, and the American basically told me, the fact I've been living at home for almost 50 years meant nothing she reckoned.
Mum is adamant that the "Home is mine" and got angry afterwards at the thought they would take it, she's so sweet. Even telling me to go get the solicitor and she would sign paperwork now for me.
I explained it does not work this way unfortunately.
Quite naturally she's upset as in her mind the home is mine as she always wanted.

American lady gave me a number to call at the financial benefits office who she said would be able to give me clear answers.

I phoned them when I got home, and the lady was nice but said whilst they would be the ones to look into mums ability to pay, she alone could not really help me of advise me.

This lady said the CAB are the best people as they are independent, and have their own legal teams, so they are the ones I should explain things to. (which is odd as other people say CAB isn't much use, so it's confusing)
But I guess she knows what she's talking about.

Problem is, my CAB meeting is not this coming Friday, but the Friday after that.
And that's of course my 1st real meeting to start explaining things.
And today the social people were talking about me soon to start looking at care homes for my mum.

That side of things is racing ahead of me.

In mums mind (sweet mum) she wants me to be at home and be free as was always the outcome I guess for many decades. But it's not turning out this way at the moment.

So I need to try and call CAB to see if I can get meeting brought forward if that's even possible.

I'm seriously panicking right now.

The thing is the CAB can advise you and give you links to others who might be able to do so but they are not the ones who have the power to make a decision. I hope you can get an earlier appointment with someone who can help there so that you can see things more clearly.

 

[Selinacroft]

Hi Snafs
I can feel your anguish as I was in a similar place a couple of months ago.
The main difference that I can see is how "capable" your mother is and her current level of mobility. I am just offering some random thoughts to consider- approach social services and ask if they can provide a falls monitor- like a lifeline pendant but triggered if anyone falls. Is mum on the ground floor and if so can you relocate her to ground floor?

You also say your mother could go on for years- what stage do you feel she is at? In my own case Dad had got well into stage 7 before Social Services started making things really difficult, so Dad was falling every time he tried to get up , double incontinence etc and int he event he only lasted less than a month once admitted to nursing home.
If you are at home supporting mum it seems unreasonable to not let her return home with some care visits.
If you don't have POA, maybe it is still possible- I received an excellent piece of advice and the quote I remember was to "surround yourself by a group of sympathetic people" and it could still be an option for you (and avoid the nightmare court of protection scenario)
I also looked into live in care as alternatives so another thing to look into?

Wish I could do more to help.

 

[Pete R]

Asked me about pro's and cons of care home, and I could not really say there was anything bad with the idea as mum would be safe of course.

Is there a reason why there was not talk about your Mother returning home with a care package as that seems to be the norm nowadays from reading other stories on here?