British expat with dementia in Spain

Kafka’s Cat

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Jun 2, 2015
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London
In March my 92-year-old mother was admitted to a care home in Motril after a fall at home. She has lived in Southern Spain for 30 years; for 10 years on her own after my father died. I live in London and have been over twice since she was admitted. Last month the resident psychologist gave an initial diagnosis of dementia; the type has yet to be ascertained. This came as quite a shock as it had never crossed my mind that she was anything other than eccentric, elderly, and a bit cranky. In retrospect, however, a number of things have started to make sense, especially since I have begun to educate myself about this condition.
Since her fall she has lost command of Spanish (semantic amnesia) and struggles to communicate with the staff, being the only Anglophone resident. She is very unhappy in the care home and implores me to take her to Britain. Even if I found a way to transport her to the UK it is not practical to move her into my small rented flat, so I would need to find a suitable residence or care home. She is unable to walk unassisted and has double incontinence.
This is all quite overwhelming for me at the moment and I am unsure how to proceed, although I would like to bring her over to the UK. My own funds are quite meagre, and whilst my mother is in receipt of a British state pension, her only capital is tied up in her house. Does anyone have any suggestions or advice?
 

Pickles53

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Feb 25, 2014
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Radcliffe on Trent
I read another recent thread on here that indicated you may need to establish your mother's position if she becomes a British resident again, in particular whether she would entitled to free NHS treatment and assistance from social services. I will try to find it and post the link.


Think this is it. It's about France not Spain but I think some of the issues are the same.

http://forum.alzheimers.org.uk/show...ied-son-and-mother-in-France&highlight=France
 
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Kevinl

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Aug 24, 2013
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Salford
If she's registered as a resident in Spain and can get a Spanish European Health Insurance Card (EHIC) then she should be entitled to free care from day one as far as I can see. "most people, who live or work in another EEA country or Switzerland will continue to get free NHS care using a European Health Insurance Card (EHIC) issued by the country they live in. This means the NHS can reclaim healthcare costs from the original country of residence. " and "Citizens who return to the UK on a settled basis will be classed as ordinarily resident, and will be eligible for free NHS care immediately."
the link to the UK government website is below.
https://www.gov.uk/government/news/new-rules-to-improve-overseas-visitors-contributions-to-nhs-care
 

starryuk

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Nov 8, 2012
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Having just read kevini's post, it doesn't look as if there would be a problem with NHS healthcare.
 
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RedLou

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Jul 30, 2014
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Kafka's Cat - first thing you should be aware of is that she may be begging you to take her back to the UK but then be desperately unhappy in the UK, too. I've been dealing with long-distance caring for my father, who was resident just across the border from Spain (Gibraltar) until last week when he died. It is a difficult and stressful experience. My father did not want to return to the UK - indeed was adamantly opposed. However, the story went like this - initially he was at home with carers coming in and he used to moan about them constantly and tell me his life was a misery. Then he was taken into a long stay ward due to bad UTI/neglect of self (long story) and moaned about how he wanted to be home with the carers. Then he was transferred to a lovely nursing home and moaned about how he preferred the hospital and it was like Bedlam. What he was moaning about was illness, old age and what he wanted to return to was the happier past. You may find this is the case with your mother. A lot of dementia sufferers talk endlessly about going home; often home is a metaphor for a place where they felt happy and safe.
So, in short, I'd think very hard and long about whether to repatriate your mother, depending on her MMSE tests, her general health and what 'stage' of dementia she is at. She may be envisaging some life in Britain that has nothing to do with a British care home.
 
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Kafka’s Cat

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Jun 2, 2015
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London
Many thanks for the replies everyone.
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pickles53: I followed the thread you posted and found much of LWCARAB’s harrowing account to be pertinent to my own situation, most certainly on a personal level. I suppose the practical difference is that my mother desperately wants to return to the UK as a permanent resident. As RedLou points out below, however, whether she will be any happier is an open question. She is a UK citizen with a valid passport although as others have pointed out, this in itself will not necessarily entitle her to immediate NHS treatment.
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KevinL: Following on from this, I believe she has an EHIC card albeit one issued in the UK, if I remember rightly. The fact that Britain and Spain have a reciprocal healthcare arrangement is a plus, as is this: "Citizens who return to the UK on a settled basis will be classed as ordinarily resident, and will be eligible for free NHS care immediately."
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Starryuk: It certainly seems positive; I just have to find that EHIC card…
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Chemmy: That is indeed a useful link; much obliged.
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RedLou: I’m sorry to hear about your father. Very wise words: “What he was moaning about was illness, old age and what he wanted to return to was the happier past. [..] A lot of dementia sufferers talk endlessly about going home; often home is a metaphor for a place where they felt happy and safe.” I was thinking very much along these lines when I visited my mother last month and am still slightly conflicted as to whether this is the right course to take, but on balance I believe it is for the following reasons: She will be amongst Anglophone people and media (TV, radio etc.) and be more able to express her needs in her first language. Not having to take a 2,000-mile flight and a three-hour bus journey means I can visit her more frequently and be available immediately in case of emergencies; I will also be able to understand medical staff without the help of a translator as my basic Spanish is not really up to the task. She loathes the cooking in the care home and pines for British dishes; this worries me as she seems to eat very little and has lost weight quite noticeably. I also worry about the minimal amount of therapy, exercise, and stimulation on offer. She seems to be left alone in her room all day in her chair next to the window, and then carried back to bed at night. I’ve also noticed some of the nurses are quite perfunctory and simply reply “habla Español” when she tries to communicate with them, although I’m sure perfunctory and brusque behaviour is not unknown in the nursing profession the world over.
Realistically speaking, I can’t expect her to be much happier, just to feel less angry and more content. I think having me closer to hand would be a comfort and a help. Of course this may be a false hope as she still retains enough awareness to rage against the dying of the light and the situation in which she has been placed.
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I’m not looking for the NHS to shoulder the entire burden of my mother’s care but, as I said, funds are running low. At the moment I am paying around £1500 every month for the care home and this is depleting resources at an alarming rate. In March I applied for assistance from the Andalucian social security; they will subject my mother’s income to a means test and then cover a percentage of the care home costs, but the wheels of bureaucracy turn slowly. Unless I can find a magic money tree in the garden I will have to sell her house to provide some breathing space and free up some capital, although there are unavoidable delays in obtaining the power of attorney required to set the process in motion. As I understand it, before I can get POA there would need to be a judicial ruling on her mental competence based on the official clinical report; I am told the latter will be delivered within the next two months, after which I can proceed to the next stage. In addition, POA would need to cover both jurisdictions i.e. the UK and Spain. Hoping against hope, I would still like to bring her back to the UK during my next visit in July.
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There are currently around 300,000 official British residents in Spain, many of whom are pensioners. However, according to the BBC and other sources the figure may be as high as a quarter of a million or more. There must be other people in a similar position to my mother and myself, given the economic crisis and the parlous state of the property market together with the simple fact that people are living to a greater age than ever before.
 

Pickles53

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Feb 25, 2014
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Radcliffe on Trent
Sorry if you know this already, but in the UK your mother will still need to be financially assessed and it's likely that the value of her Spanish home will put her over the threshold for funding by the LA. So she would still need to pay her own care home fees, unless of course she qualifies for CHC funding by the NHS..

Does the £1,500 per month come from her savings?
 

starryuk

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Nov 8, 2012
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Kafka's cat:
I brought mum back from Australia in 2012. We had POA for her in Australia, but it was not valid for UK. We had to apply for a UK one, the forms for which were downloaded from the internet. Mum understood enough to know that I was going to take over responsibility for her money and signed the forms. We certainly did not have to get any authority to say she had mental capacity. That was done by a personal friend who had known her for years. Not sure if the rules are different when 2 EU countries are involved.

Anyway, I am thinking it might be an idea to get a UK one ready now if possible. You don't have to register it with the Office of Public Guardian until you need it and perhaps it might save complications later...just a thought.
 

Kafka’s Cat

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Jun 2, 2015
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London
Pickles53:
Yes, I thought that would be the case, although it's not entirely clear-cut because I am the legal owner of half the property. Fortunately I have managed to retrieve the deeds.

The £1,500 monthly care home fees are funded in part by her savings, partly by my savings, and a few thousand euros I found secreted around her house last March which I am also using for unpaid bills and essential repairs etc. I managed to persuade her to sign a couple of cheques for the residencia fees but since then she has refused to sign anything as she believes I am trying to steal her money and her house. The rest of her savings are in the same bank account into which her pension is paid and to which I have no access. Hence the money problems and the need for POA. A further worry is that if the fees or any bills or council charges are not met there will be, at some stage, an embargo put on the house or some kind of judicial order seizing the property in lieu of unpaid monies.

She has lost most of her friends due to her suspicious attitude which latterly had tipped over into outright paranoia. Almost all of them she had accused of stealing from her, firstly quite insignificant items such as teaspoons, cutlery and plates, even food and bin-bags at times, and later, more seriously, money. At first I was inclined to believe her but as the accusations continued, I rationalised that it could not be possible that absolutely everyone she knew was a thief. I suppose bells should have started ringing but I still considered this as a epiphenomenon of old age. She has two friends left, a German woman and her English partner, who have been an enormous help and are looking out for the house (I'm very worried it will be broken into or worse) and caring for her cats etc.

When she was admitted to the residencia I set to work clearing and tidying the house. In the ten years since my father died she hadn't allowed me to tidy or throw out anything, even food that had gone out of date; I found cans dating back to the 1980s amongst other items. I hired a large skip and within days it was full; she had hardly thrown anything away since 2004 and would go absolutely spare if she could see how sparkling clean the place is now!

What's more I discovered some very disturbing things: she hadn't paid the council rates for years; she had cancelled the insurance payments so the property is now uninsured; there are unpaid mobile phone bills; and I couldn't find the formal will she told me she had made, only a single sheet of paper granting me her effects on her passing in an unsteady hand. It was an absolute mare's nest, especially financially as this aspect is ongoing. Oh, and there were used incontinence pads piled in the bathroom and both toilets were blocked, requiring the attentions of a plumber to set them right. It was clear she had gone downhill rapidly after I visited her last Christmas and it is absolutely heart-breaking.

StarryUK:
I'm afraid it's unlikely at the moment that my mum will sign anything, as explained above in my reply to Pickles53. I still don't understand enough about her condition but it seems clear that I can't rationalise with her, at least at the moment when she is so angry and resentful with me for, as she sees it, abandoning her in a home.

I contacted a Spanish lawyer who could acquire POA for me but this would cost €800 plus further fees for an abogado (a sort of notary), which seems pretty steep, especially as money is tight. I thought it best to wait for the official medical report and judicial declaration of non compos mentis but now I'm not so sure. I didn't realise you could download a form from the internet. I don't suppose you have a link by any chance or is it easy enough to find via google or whatever? Of course, this is assuming she will sign it. As I said above, I’m going out again at the end of July and am trying to set everything in order - whilst going to work and looking after my two teenagers. Oh well.
 
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Kafka’s Cat

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Jun 2, 2015
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London
Pickles53:
Yes, I thought that would be the case, although it's not entirely clear-cut because I am the legal owner of half the property. Fortunately I have managed to retrieve the deeds.

The £1,500 monthly care home fees are funded in part by her savings, partly by my savings, and a few thousand euros I found secreted around her house last March which I am also using for unpaid bills and essential repairs etc. I managed to persuade her to sign a couple of cheques for the residencia fees but since then she has refused to sign anything as she believes I am trying to steal her money and her house. The rest of her savings are in the same bank account into which her pension is paid and to which I have no access. Hence the money problems and the need for POA. A further worry is that if the fees or any bills or council charges are not met there will be, at some stage, an embargo put on the house or some kind of judicial order seizing the property in lieu of unpaid monies.

She has lost most of her friends due to her suspicious attitude which latterly had tipped over into outright paranoia. Almost all of them she had accused of stealing from her, firstly quite insignificant items such as teaspoons, cutlery and plates, even food and bin-bags at times, and later, more seriously, money. At first I was inclined to believe her but as the accusations continued, I rationalised that it could not be possible that absolutely everyone she knew was a thief. I suppose bells should have started ringing but I still considered this as a epiphenomenon of old age. She has two friends left, a German woman and her English partner, who have been an enormous help and are looking out for the house (I'm very worried it will be broken into or worse) and caring for her cats etc.

When she was admitted to the residencia I set to work clearing and tidying the house. In the ten years since my father died she hadn't allowed me to tidy or throw out anything, even food that had gone out of date; I found cans dating back to the 1980s amongst other items. I hired a large skip and within days it was full; she had hardly thrown anything away since 2004 and would go absolutely spare if she could see how sparkling clean the place is now!

What's more I discovered some very disturbing things: she hadn't paid the council rates for years; she had cancelled the insurance payments so the property is now uninsured; there are unpaid mobile phone bills; and I couldn't find the formal will she told me she had made, only a single sheet of paper granting me her effects on her passing in an unsteady hand. It was an absolute mare's nest, especially financially as this aspect is ongoing. Oh, and there were used incontinence pads piled in the bathroom and both toilets were blocked, requiring the attentions of a plumber to set them right. It was clear she had gone downhill rapidly after I visited her last Christmas and it is absolutely heart-breaking.

StarryUK:
I'm afraid it's unlikely at the moment that my mum will sign anything, as explained above in my reply to Pickles53. I still don't understand enough about her condition but it seems clear that I can't rationalise with her, at least at the moment when she is so angry and resentful with me for, as she sees it, abandoning her in a home.

I contacted a Spanish lawyer who could acquire POA for me but this would cost €800 plus further fees for an abogado (a sort of notary), which seems pretty steep, especially as money is tight. I thought it best to wait for the official medical report and judicial declaration of non compos mentis but now I'm not so sure. I didn't realise you could download a form from the internet. I don't suppose you have a link by any chance or is it easy enough to find via google or whatever? Of course, this is assuming she will sign it. As I said above, I’m going out again at the end of July and am trying to set everything in order - whilst going to work and looking after my two teenagers. Oh well.

I’ve had a quick look and there are indeed plenty of online POA forms. I’ll investigate further sometime tomorrow. Many thanks.
 

Raggedrobin

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Jan 20, 2014
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KC, just one thing to consider, she will be self funding when she arrives in the UK, as she will be expected to use her house to fund the fees unless you have another way of doing it. Just a thing to remember if you think £1500 is high, the fees for many homes here are around £3000 a month. It would be worth you checking the rates of good homes near to you to see how they compare. When she had used up most of the money from the house then you get the help from the local authority or NHS funding in some cases. i wonder if you need to check with your local authority if her being new to their area affects anything? Sorry more questions than answers.
 

Kafka’s Cat

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Jun 2, 2015
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London
Raggedrobin:
Good grief, that’s quite a hike from £1500. I hadn’t really considered this. The state of the property market in Spain is pretty dire; there are something like 2 million empty or uncompleted homes so it’s a buyer’s market. My mum put a hugely unrealistic value on her house which was the main reason why she didn’t move; no one would even consider buying it for the price she was asking.

It’s good advice though. I’ll have to get in touch with my local authority as you say, although unfortunately it’s Westminster. They’d could serve as a first port of call I suppose, then maybe I'll look at the suburbs or further afield. Something else to think about.
 

Bod

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Aug 30, 2013
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Kafka's cat:
I brought mum back from Australia in 2012. We had POA for her in Australia, but it was not valid for UK. We had to apply for a UK one, the forms for which were downloaded from the internet. Mum understood enough to know that I was going to take over responsibility for her money and signed the forms. We certainly did not have to get any authority to say she had mental capacity. That was done by a personal friend who had known her for years. Not sure if the rules are different when 2 EU countries are involved.

Anyway, I am thinking it might be an idea to get a UK one ready now if possible. You don't have to register it with the Office of Public Guardian until you need it and perhaps it might save complications later...just a thought.

Modern UK POAs you register them immediately, then use only when required.
There can be a delay of 3 months, between sending and receiving back, during which you have no power.

Bod
 

Bod

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Aug 30, 2013
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Raggedrobin:
Good grief, that’s quite a hike from £1500. I hadn’t really considered this. The state of the property market in Spain is pretty dire; there are something like 2 million empty or uncompleted homes so it’s a buyer’s market. My mum put a hugely unrealistic value on her house which was the main reason why she didn’t move; no one would even consider buying it for the price she was asking.

It’s good advice though. I’ll have to get in touch with my local authority as you say, although unfortunately it’s Westminster. They’d could serve as a first port of call I suppose, then maybe I'll look at the suburbs or further afield. Something else to think about.

I fear you may well find your mother is better off in Spain, both financially, and care wise.
She may be already too far gone, to grant a UK Power of Attorney, which means you would have to go the route of Guardianship, which is much more difficult.
Her Spanish property will be means tested in the UK. Selling a Spanish property from the UK is fraught with difficulties, and cost. (Just sold an old type timeshare so I know what the Spanish system is like!!)
Care costs in the UK are staggering! Look into the costs and speak to your local authorities regarding help from them, I doubt NHS funds will be available at all.

Sorry to be so disheartening, but you are facing a difficult situation, its better to know that now rather than be shocked later.

Bod

P.s Are there any English speaking organisations in Spain that could help?
 

Chemmy

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Nov 7, 2011
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Yorkshire
I have to agree with you, Bod. Even the journey back to the UK, if she is unable to walk and is doubly incontinent, would be dreadful.

I would have thought it is likely to be the LA's responsibility, not the NHS's, for any financial assistance.

Many of us have had to be distance carers. It isn't easy, but it can be done. As Redlou says, your mum is likely to be unhappy wherever she is. Have you considered transferring her to a home where there are some English-speaking staff? That might be a better option.
 

marionq

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Apr 24, 2013
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Scotland
Like Bod I sold a Spanish property and you will find that not only do you get a poorer price at present but the costs attached to selling are staggering. The cost of care homes in Westminster will be very high and £3000 a month is a very low estimate. She would certainly financially be better off in Spain.
 

Raggedrobin

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Jan 20, 2014
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yes, London costs may be higher, especially Westminster. I pay £4000 a month for my Mum but that does include nursing care. Thing is, it is not an unreasonable wish for her to want to return to the UK, is it? I think I would in the end. It must be so worrying her being such a distance away. I had an aunt in Rome who ended up in a care home over there, she had lived in Italy for most of her adult life and spoke fluently then at the time she went into the Italian care home she lost the ability to speak or to a degree understand Italian, so she had no one talk to. Awful illness. Fortunately the visiting doctor spoke English, as they often do, so at least her medical needs could be met. It was always a worry about how good her care was but she was too ill to come back to the UK.
 

Raggedrobin

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Jan 20, 2014
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just thought of another thing that needs to be considered, which I also don't know the answer to. What happens in Spain when the money from her (sold) house runs out? What happens in the Spanish system when you can no longer afford to pay for care? Is it like here, the local authority or NHS picks up the pieces? If they do, that means she would only get to stay at the cheapest home they could find for her, which can sometimes mean very poor cate (not always). Is it the same system in Spain? How do all their welfare cuts affect care for people without enough money to pay and I wonder how they will affect their care in the future? All needs to be considered.
Sorry, here we are talking about the pros and cons, haven't forgotten this must all be devastating for you, so difficult to deal with dementia anyway and the financial side is just such an additional blow. I remember assuming I could pay for Mum's care by renting out my house but a month's rent was only worth the same as a week's care home fees!
 

Kafka’s Cat

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Jun 2, 2015
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London
Bod, Chemmy & marionq:
After reading your comments I’m reconsidering the wisdom of moving my mum to the UK. As Chemmy said, long-distance caring is not impossible. Somewhere I have a list of English-speaking care homes which I shall have to investigate as this seems a reasonable compromise. Bod, rather than thinking your comment disheartening I’ve taken it as a salutary dose of reality. The situation is complicated enough without what could turn out to be a quixotic mistake. So I'm having a bit of a re-think.
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And then there's the problem of physically moving her from Spain to the UK. At first I was thinking I'd book a couple of tickets then accompany her on a flight from Málaga, but of course she'd need constant medical assistance; an ambulance to the airport; a trained nurse in attendance. And that’s assuming she would be fit to fly in the first place. The journey could indeed be terrible.
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Raggedrobin:
“Thing is, it is not an unreasonable wish for her to want to return to the UK, is it?” No, it’s perfectly understandable and I'd still love to be able to bring her to the UK but I’m not confident that it is practicable anymore. Although it is a terrible worry her being 2,000 miles away. As I said, I think I'll turn my attention to English-speaking care homes further up the coast on the Costa del Sol.

"What happens in Spain when the money from her (sold) house runs out? What happens in the Spanish system when you can no longer afford to pay for care?" This is a very interesting question and I don't know the answer. I have applied to the Spanish social security system for assistance; they are currently means testing her income (which is a British state pension and a very small private pension) and have indicated that they might pay up to 75% of the cost. I'm hoping to hear from them within the next six weeks. If she is given this aid she will be much better off financially staying in Spain. Yet she so desperately wants to return to the UK. It's a dilemma. However, as I said before, if I can't pay the care home fees they will put an embargo on the house, seize it and probably try to sell it at auction for whatever they can get. As I own half of it this may present problems but I'm determined it won't get this far. There are certainly considerable problems in the Spanish system since "la crisis", the economic crash of 2008.
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I think basically I have not come to terms with my mother’s illness and I still see her as essentially a rational agent. Intellectually I can well understand that she has a serious degenerative disorder but emotionally to me she is still the same person. The psychologist in the residencia told me I need to understand, in his words, that “this is not your mother” but I can’t really accept that; it may be objectively true but to me it sounds cold and clinical and much too materialist. After all, people undergoing the trauma of dementia retain their consciousness and humanity.
Anyway, If I do decide I can't get my mum back to the UK it will come as a bad blow to her. I'm not sure how I'll be able to tell her.