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Early stage alzeiheimers - future help ?


chessie
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My OH is, sadly, showing clear signs of early Alzy - and it's already causing problems for me - which is wrong, but there we are.

Do have the UK Lasting Power of Attorney, signed several years ago, so that's one hurdle not to worry about.

Thinking long-term - if we remain here in France, both pensioners, what help would the French health/social be kind enough to offer us ?

Care home fees - anyone any idea ?

Or should we be thinking about returning to UK earlier than planned ?  What would be the financial implications.

Personal experiences/practical advice anyone ?

Would be very welcome.

Thanks - Chessie

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I can only give you some small insight into the UK side: which is obviously still relevant as you need to weigh up your options.

My B-I-L passed away in October after suffering from Alzheimer's and vascular dementia. He then suffered a cerebral haemorrhage which resulted in his hospitalisation.

Firstly, prior to this, he was living at home, alone, with little input from medical/social services, largely due to his total denial of his diagnosis. He could have received some help, but would have been required to pay for it (which he also steadfastly refused to do ).

Ultimately, with his hospitalisation, much of the decision making was taken from him. By this time he was unable to communicate, sit unaided, move, feed himself or indeed do anything other than lie in bed. It was clear that he would need to be moved from hospital to a care home. At this point, meetings took place between the family, hospital staff and social care team where his condition was assessed according to a checklist of criteria, and his condition judged to be "severe" against most of the listed indicators. Under such circumstances, the cost and type of care required is generally judged to be severe enough to be met by the NHS/social services.

Some short while later, his relatives were informed that in fact his condition was not severe enough, didn't meet the criteria, and he'd be allowed £160 a week towards his care, the balance to be met from his estate. On asking for details, the family found that the original assessment outcomes had been revised downwards to ensure he didn't meet the criteria for full funding.

Subsequently, whilst this was still in dispute (and by now he'd been bed blocking in the NHS for eight months) the hospital said that they could offer him no further treatment and his condition was stable so he should be moved to a care home. This was agreed with the family and they were advised they'd be notified. They weren't, he was moved without their knowledge, and the first news came when the care home phoned to advise that his condition had deteriorated. He died within 24 hours of being moved, and it was only sheer good fortune that prompted the care home to notify the family that he was even there.

Among other things, I'd just add that the health visitor who had been supposedly keeping a check on him at home and making sure he took his medication (he didn't) turned up at his house over a fortnight after his admission to hospital, blissfully unaware of his whereabouts.

Naturally, the postcode lottery comes into play, but there are a couple of forums, one on the Alzheimer's Society website, which give lots of insight into the ins and outs of living with the disease in the UK. These are useful and contain lots of practical advice.
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For us a translated LPOA was accepted for everything in France except the sale of principle residence. For this the Notaire insisted on a tutelle.

You can get the fees for care homes in your area online, you need to look for an EHPAD with an alzheimer unit.  Fees vary a lot as do the standard of the unit.  State pay APA (need to claim) which is a contribution to medical care based on severity of condition.  The cost of accom/food and rest of medical care fees for us 2018 = 32K.  You can get State assistance for all the fees but they will normally be reclaimed from the eventual estate.

I would never place anyone, irrespective of condition, in a French care home who cannot speak french.

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I can, sadly, comment on this from experience.  The help here is pretty good. I would not totally agree with the above comment on not sending a person to a Home if they did not speak French - it can depend on circumstances. My mother developed what we, as a family, described as Alzeimers. Having been referred to a specialist he organised a brain scan and as a result we were told she had Vascular dementia (resulting memory loss is the same but very different reason). To cut a long story short in April (of the year it happened) she needed some care but could talk and understand what was said but as my father was in his 80's we applied for APA à domicile. This mostly covered the cost for carers every day. On advice from her doctor we put her name on waiting lists for a place in a Home - there was an at least 18 month wait locally.

By September the same year she had lost all ability to talk and understood nothing that was said to her in any language at all.  She did not recognise her husband. My father had a heart attack brought on partly by stress. Emergency hospital admission for both of them. Help!!
Super hospital social worker gave us a list of Homes with an available room. The EHPAD we chose, about 12 km from their own home, did not have a dedicated Alzheimer unit but was totally secure and they cared for a mix of oldies. Quite wonderful care and the staff spoke as much English as they could to her to no noticeable reaction.
APA transferred to Home seamlessly. She lived another three years, quite calm and seemingly content but not recognising any of the family.

Note re APA: it is, as has been said, means tested and "they" are not as generous with the savings you can hold on to as in the UK. It is potentially repayable.
More important: If the patient has children and the spouse cannot make up the APA to the full Home fees then the children will be sent forms too for details of their income (on first applying for APA the names of children and addresses have to be supplied).  They will be expected to contribute and it is not the children that decide how much!  If a child refuses to complete the income form the APA will be denied (I have seen this happen: I am not making it up).  If they are told to pay and don't it will be enforced wherever they are.

I once asked a Notaire why the Home fees were only half that of the UK and was told that it because that State owns and runs the building so one only pays for board, lodging and care!  Ask to go and look at a local Home and ask around. You can put someone's name on lots of lists but need not take a place if offered.

I hope this helps, it is a very stressful time and occasionally things move very fast.

Good luck.

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My french friend's mother has been suffering from this for quite a number of years now.

Initially, she managed at home with help, then moved in with my friend, but really it became too much and dangerous, with the things she decided she would do.

She is in a care home now with a section who can cope with dementia and alzheimers, and she shares a room with another lady.

Both had been unable to cope 'living' alone, ie in their own rooms in the home, and between the families along with the home, they decided to try sharing and both ladies have been settled and happier.

Re the cost. I believe that the last time she told me it was about 2500€ a month, but that was a couple of years ago.

And do NOT ever suggest any sort of apology for it being hard for you. When is it not hard for carers, whether someone is ill or as in your case. 

Please remember to try and look after yourself too. It was something my Dad forgot to do, so I saw it first hand. My mother had a different illness, but as well as physical disabilities, incorporated a sort of dementia, so I have seen first hand.

As was said, get a proper diagnosis and maybe the assistant sociale would be able to help too.

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re Herefords reply regarding payment.
I had also heard, years ago, that all family members were under an obligation to contribute to the cost of care of an elderly relative in a 'Home'. Even if they live in another country.
We lived in a small rural commune, and often a funeral would be announced of a very old person, we didn't even know they were there! The family having decided to care for them at home. Maybe partly because of the cost in a Home.
But if it's shown that the family is very poor, then the state will pay.

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We were told by an Avocat (on a different occasion) that, even if poor, family members have to contribute a little bit even if 10 euros a month|!  The money is collected by the Department authorites and they pay the bill to the Home direct. They will chase wherever in the world you are.  The pension of the patient is taken apart from a pocket money amount - I seem to remember they take 90% of the pension or less if income very small.You can also deduct the cost of, mandatory, third party insurance from the pension to cover them running amok...

As I said before the amount the state pays is repayable if there are asets on death.

When we had APA à domicile some of the hours were for the "carer".  Some places have clubs for sufferers and their carers - worth looking into if you speak French.

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Yes, my neighbour had family in Italy and her aunts/uncles and cousins all had to help towards her grandmother's care costs, as did she.

I often think that family things in France from the outside sometimes seem one sided and unfair....... ie that children cannot be disinherited... but the other side to that is, that children and their descendants also have responsibilities towards their parents and grandparents.

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We moved to France when we were young, but always planned on returning to the UK for our old age.

There were always a few reasons for this. The first was, french inheritance rules, which have changed in the mean time, but used to be horrific.

We also discussed, what if, and we used this term, 'one of us lost our marbles', how would that work. Would we remember our french if we ended up in a home in France, wouldn't that be frightening?

Also, I never fancied dealing with french bureaucracy in my dotage.

There were several other reasons too, but these three things were the principal ones.  The last was if I ended up on my own, I would never live in France on my own.No way.

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[quote user="idun"]
We moved to France when we were young, but always planned on returning to the UK for our old age.

There were always a few reasons for this. The first was, french inheritance rules, which have changed in the mean time, but used to be horrific.

We also discussed, what if, and we used this term, 'one of us lost our marbles', how would that work. Would we remember our french if we ended up in a home in France, wouldn't that be frightening?

Also, I never fancied dealing with french bureaucracy in my dotage.

There were several other reasons too, but these three things were the principal ones.  The last was if I ended up on my own, I would never live in France on my own.No way.
[/quote]

Idun. We used to think like you, and left the UK in 1963.
But having made regular visits there over the years, up until 2010, when we stayed only 3 days, the thought of returning there fills us with dread. We're going to take our chances in France. We decided it was better here than Spain when we moved here in 2000.

We moved back to the UK "forever", after a few years in Australia, the Middle and Far East, and N Africa, in 1978. We even burned all our packing cases and all the carefully saved boxes in which items were bought, on a ceremonial bonfire.

After two years we were completely disillusioned, hated it there for a multitude of reasons, and lived to Spain for 20 years, before we realised that Southern France is the place for us.

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I have a good and very very comfortable life in England, we are financially fine and yes, England has changed, but France did whilst we were there, and that is what happens.

Maybe I am just a very adaptable person. But there is nothing wrong with my current life at all. Good friends, more decent restaurants around here than I had in France. The weather is temperate enough for this northern lady. And I live in a town, with 'stuff' to do when I want, if I want.......and that is good for me.

If we move back to France due to Brexit and it could happen, then I would get on with my life.

But as you mentioned that feeling of being filled with dread, well I know that feeling because it really does worry me that one or both of us would lose the plot and what if we couldn't speak french any more??? 

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Chessie, I'm sorry to read about your problems.  Sadly, I know very little about what happens here in France, though one our English friends here did get Alzheimers and they did find an excellent home here ...though that is not any use to you, they do exist ... and not too expensive.  The mairie, local social assistant should surely be able to help you locate one, and help with what has to be paid.

You may also have, as we do, an association for relatives, which helps you to keep going and understand it all, and indeed, they also do activities for the sufferers themselves, if they are not at too advanced a level.  If you could find one of those it could be of the greatest help too, as they will know what to do and who can help.

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[quote user="idun"]
 ......................... But as you mentioned that feeling of being filled with dread, well I know that feeling because it really does worry me that one or both of us would lose the plot and what if we couldn't speak french any more??? 
[/quote]

Listening regularly to TV from the UK, I'm not too sure we can speak English in its current form[:(]

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How right you are, nomoss;  I too have the utmost difficulty sometimes in understanding what is said in English on the TV!

I tried to listen to that chap (can't remember his name) explaining why he posted a picture of a monkey with "royal baby" in the caption but I didn't understand at all!  AND, I am told he is a prominent broadcaster on Radio 5......!!!

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Oh but Mint, it's not radio 3, you know ... I agree, he was hardly speaking in any understandable manner, but what do you expect from someone who was so stupid in what he did ???? 

Is it me, or does everyone mutter and not finish the ends of words these days?  Lost count of the number of times I shout "it's got a 'T' on the end of it, you twit!" or some such ... "D's" another missing consonant now!!

Grumpy old woman, here I come!!

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Oh you are funny, and you have made me laugh........ complaining about people NOT enunciating english 'properly' when you live with a language that literally knocks the ends of so many words  that it always shocks me when one actually has to say them every letter[:D][:D][:D]

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Back in Geordieland I'm starting to revert to my mother-tongue. When we were in France I was so pleased if I met someone from Tyneside. Or had to ring the pensions people here. Just to hear the accent.
Do you find that, Idun? I know you're not far from me.
And that reminds me, having a Geordie accent helps a lot in french pronunciation.
(How did we get onto this?)

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A big 'thank you' to everyone who took the time and trouble to respond to my OP and for all the very helpful advice and comments given.

Seems as though whatever one ends up paying, the French system might actually 'work' better than the UK one (as in Betty's posts which was a horror story, and so sad).

I'm just trying to obtain as much info as possible at the moment, to try to weigh up options before situation deteriorates and decisions have to be made.

We have a house in the UK, and we have family in the UK - as a support for me if nothing else.

We have friends out here - but it's not quite the same is it ?

OH's french isn't very fluent, but with Alzy (or VascDem) - as it's language that seems to be the first to fade then it's more likely the french language memory would vanish, before the english ? 

But I'm extremely grateful for all the helpful comments;  certainly pointed me in several directions to get further advice.

Thank you everyone - and for the kind wishes - that was nice.

Chessie

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