Advice on care options for mother with Parkinson's (poss dementia) returning to the UK

[BigLittleRedOne]

My mum is 73 and lives abroad (Europe).

Last year she was diagnosed with Parkinsons. Her physical symptoms are relatively mild and seem to be helped by medication but in the last 6-8 months her cognitive abilities are worsening - very withdrawn, problems with conversation and language, seemingly apathetic about things she was interested in, some confusion. It often seems like she's in a daze. She's lost her emotional range and her empathy. She's been sent for further tests and scans and we have an appointment in a couple of weeks for the results.

I am expecting some kind of dementia diagnosis, and then will have to work out what to do for her care ongoing. However the other complicating factor is that she's told us she wants to move back to the UK. Her siblings live here and she has said she wants to move close to them.

I'm looking for advice and information about what might be the best options for her. We need to have a confirmed diagnosis first, but it feels like there is a lot to do and I'm not sure where to start! She has a property to sell, and I think some savings, although not sure exactly how much. My brother and I have power of attorney in the country she lives in but we need to work out how to get that recognised over here.

Any tips or pointers on the kind of care that would be possible and any similar experiences would be great.

Does she have a uk passport? Can she live independently or are you looking for a care home?

What country does she live in, is she a uk citizen

You might find this information useful too.
https://www.gov.uk/guidance/using-the-nhs-when-you-return-to-live-in-the-uk

Sorry should have said, yes she is a UK citizen and has a British passport. As for care - I don't honestly know whether I'm looking for a care home or not. I think in the future she will need a lot of care - at the moment she is independent but how long will that last? I don't know...

I guess a big thing is can she pay for her own care. If not I’m thinking you may have to engage with a social worker for a care assessment first of all .

I don't have any professional experience in this area, only from my own DMum, but I think you need to be very careful before you move her if she would be entitled to care in the country she is currently in (unless she will be entirely self-funding). I will explain what happened to us as it may help you but I do not believe it's easy to get funding just because she is a UK citizen.

Background: both my parents were UK citizens (actually had never even left England!) My DDad passed away and my DMum was not able to cope alone at all. She moved to be with us temporarily (this was during covid). She needed to go into a home as she had high care needs - and she wanted to as well (provided we found the right one). However, her original local authority where she had lived for 84 years wouldn't give any funding because she was no longer resident (although her house was still there) and our local authority wouldn't fund her as she had only lived with us a few months. So you could get "stuck" with no one supplying funding if you see what I mean.

We managed to sell her house which actually didn't raise much, but it was enough for private care (£3200 per week). As she passed away fairly soon after it was entirely self-funded. Local authorities also take absolutely ages to get back to you (well in my experience) and of course want to see all sorts of assessments and doctors reports which can take ages to arrange and provide.

To be on the safe side I'd do 2 things (1) investigate what funds your mum has including any property and other assets (2) get a LPA for health and finances registered in the UK as soon as possible if she is willing.

Age UK also have a helpful advice line https://www.ageuk.org.uk/information-advice/money-legal/benefits-entitlements/

I have Parkinson’s, nearly 64, had it nearly 9 years ago, apathy is a thing, it varies greatly the symptoms, one person , gets to another.
Personally apathy ( diagnosed at 60, told I’d had it for probably 5 years), at times, tremors, meds every 3 hrs, symptoms can vary at times of the day too
Parkinson’s uk, is a great site, full of help, and support , Parkinson’s nurses too, tho a postcode lottery it seems, mine is great
There are Parkinson’s groups around too.
i hope this is of some help

Why does she want to return to the UK specifically, other than her siblings are here? Where is she intending to live when she returns to the UK? If she returns to the UK to be near her siblings, would you or other relatives be able to help with her care? Do you or your brother live in the UK or are you resident in the European country she's currently in? What is the process you/she are able to take to buy or rent somewhere in the UK for her? Or are you considering moving her directly into a care home near her siblings?
I'd also contact the local authority in the area she's intending to move to before she makes the move to find out what sort of help they are going to be willing to give her and whether there is any sort of residency period required for that (as described by @FlapperFlamingo.

She hasn't explicitly said this but I think she realises that her condition is getting worse and she wants to be nearer to family. Yes, my sibling and I live in the UK (London), and she is talking about the South coast, Sussex area which is where she grew up. She has become quite reliant on a friend that currently lives near her but she is returning to the UK this summer, which has also added to my mum's desire to move I think.

In terms of accommodation, this is where it gets really tricky. I am not sure how long she can live independently, and the process of selling there/buying here will not be a quick one. I don't know if she needs a care home immediately, or if there is something else that allows her more independence. These are all tied up with financial questions that we have at the moment.

Would she be able to move in temporarily with your or your brother or another family member while you sort out what might be best for her in the longer term? That way you can fiddle with the house sale, get her registered with a GP and establish residency somewhere to qualify for social services help and figure out what sort of accommodation she would be most comfortable in. If she's able to live independently at present, and doesn't want to stay with you or your brother (or you've no room), can she afford to rent somewhere near where she'd like to end up while doing all those things?
One thing she and you will want to consider is how far away her siblings in Sussex are in relation to where you and your brother live. Assuming they are older than you, when your DM does require more help, you want her to be closer to you as most of the care burdens are likely to fall on you rather than her siblings (unless there are younger relatives willing to take that on).

I have Parkinsons as well, @BigLittleRedOne, and I am in my late 60s. I live in the UK - and have always done so, so unfortunately I can't be of much use in regards to helping you with the logistics concerning your DM returning to the UK.

However, I do know a reasonable amount about having Parkinsons, as I was diagnosed with it quite a few years ago. It might be helpful to know where you live OP, as at first I thought you lived abroad, in the same country as your DM, but you have at least twice mentioned the UK as being 'here', not 'there', so I am slightly confused about what is confusing you. If you do live here, do you know why your DM wants to come back here to be near to her siblings, but not to you?

Anyway, you may already know about the type of Dementia most commonly found in people with Parkinsons, which is Lewy Body Dementia. If you are not already aware of it, you might be able to see whether it seems to match your DM's symptoms quite closely or not. However, even if it does seem to show that your DM does have that Dementia, it still isn't necessarily the case, as the symptoms you describe are ones that I also have, and I am reasonably sure that I have not - yet - aquired any sort of Dementia.

The most upsetting of the symptoms that you have told us your poor Mum suffers from, is to me the lessening of my emotional range - my whole personality has always been based on how much empathy and care I have always had for others. To be able to recognise in myself that I am no longer feeling such a strong range of emotions, is very strange indeed, and to a certain extent I wonder if that actually happens to most people who are just ageing, in order to help us protect ourselves against all that we lose the older we get?

Apart from natural ageing, the majority of the symptoms you say your DM seems to be experiencing, are actually part and parcel of both Parkinsons, and often the medication we take for it too. I have been taking Co-careldopa for quite a few years now, and I can't distinguish between my tablets and my actual condition.
Good luck, and best wishes, in getting the most appropriate, and best care, for your DM @BigLittleRedOne.

My OH had PD and my Mum had Lewy Body Disease. It is important that the meds are carefully monitored as sometimes it is hard to distinguish symptoms from side effects and drugs might need to be tweaked.
I am a retired hospital social worker and have been involved in organising care for many people.
I would suggest that her first port of call on her return to UK should be a temporary residential home placement. There she can be fully cared for and a full assessment of her care needs made. She could be seen by OT, doctor and physio etc. Everyone will then have a clear picture of what is needed and she will be safely cared for while housing is organised and any services are put in place.
This sort of holding placement will give everyone a chance to take stock.

Those placements are not free if you have funds and frequently not available. They won’t take much notice at SS as she has funds and relatives. My SS didn’t even bother to assess my 98 year old mother in terms of living alone! If you have funds or relatives, you sort it out yourself. My friend has very severe Parkinson’s (the stiff joint one) and Dementia. No sign of a nurse. He has a wife and money so is expected to fund what he needs. Or in his case, rely on his wife as carer.

Other areas seem much better but it’s shocking here!

Even with funds and relatives you are still entitled to proper medical input and assessments from OT, physio etc as needed.

My mum, currently 84 was diagnosed last year.
It is horrendous. She is or at least was, a hugely happy and sociable person. Her world is shrinking and she is quite upset because the dementia robs her of following conversations. Luckily my dad is suppirt8ve. She has had good input from the Parkinsons nurses locally.
She is particularly cheesed off with the continence issues too.

Would sheltered housing be an option where she has her own place and kitchen etc but an onsite warden on call with a view to transition to care home ? We lost dad to Parkinson’s and didn’t really use care home right til the end to give Mum a holiday but he would not have been able to live independently without her care. Dad had LB dementia and remained quite lucid although withdrawn and fixated on things like street lamps !

My Mum had Parkinson's and died in 2017; Surrey is atrocious, really corrupt, and it doesn't matter whether you are self-funding or not. I get the impression its neighbour Sussex is the same, and for reasons I never quite figured, some of the social workers work for both counties anyway. Try to avoid getting on their radar is my advice.

Once they (the care home, the State, whoever) assess you have lost mental capacity, you're on your way out, I give it two years in a care home, whether you like it or not.

A live-in carer might be best. In effect, we did that with our Dad in his last years, and could have done it with Mum - in effect, we were going in every day to the care home to give her drink because they were trying to kill her via dehydration, that's how they do it incidentally - but the Council stopped us moving her back home, while slyly suggesting it themselves for reasons I won't go into now.

I mean, just one banal example - in a care home, you can't get out of bed unless you are properly dressed, which takes time later down the line, sometimes with a hoist and so on. At home you can just moving into the living room in your pyjamas, no faff, less risk of pressure sores (my parents got this in care settings, in one case at Epsom General Hospital within just a few hours of arrival and he died with it, nice - neither ever got a pressure sore at home.)

I am assuming - maybe wrongly - that this lady has nowhere to live in UK to start with and that this will need to be organised. This is why I am suggesting residential home to start with as a roof over her head and a base for assessments to be made, home to be bought/found and plans made when in possession of the full facts.

There are then a number of options which you will find outlined in the Age UK website.

@Mischance Entitled? Yes some get it no doubt. Others get very little. Physio is exercise advice. You see them once. My friends DH with pretty advanced Parkinson’s and Dementia has yet to see a Parkinson’s nurse. My friend does everything. They won’t pay for carers and he keeps falling on top of her.

Getting sheltered housing is ok if you can pay. Something might be available with an on site warden. Care homes are for the very frail. Obviously life expectancy is short. Private ones offering respite care might help in this case. Here they are £6000 a month.

It's possible she has Parkinson's disease dementia

https://www.alzheimers.org.uk/about-dementia/types-dementia/parkinsons-disease?gclsrc=aw.ds&gad_source=1&gad_campaignid=2000547055&gbraid=0AAAAAD8uDw6GtlfnX56R3vDwI0mUb_0WA&gclid=CjwKCAjwqubPBhBOEiwAzgZX2kRNgwovgoew_aRYyooHsETurkJhbW2dzPKgjC4VBQ4ES_rVuleDQBoCFTsQAvD_BwE

If she is paying for her care it will be entirely her choice (or your choice, as her attorney) what type of care she receives and where she lives.

Are there any tentative plans for where she would live? She could rent a property short term and get a care agency to assess her needs. Or you could try @Mischance 's suggestion of a few weeks respite in a care home so she can be assessed, and go from there.

You say it will take some time to sell her property abroad. Is her coming here dependent on that? If dementia is involved it is common to find that while you are planning your next move, events overtake you and what you planned in May will no longer work by September.

The super Surrey and Borders Partnership I think. SABP and Epsom Hospital - what a combination. I am so sorry.

My late OH had PD so I am very familiar with the fight involved to get the necessary care. But yes there are entitlements that sadly do not come easy. The endless battle nearly broke me.

@Mischance I’m sorry to hear that. I’m very aware that it’s such a struggle! This is why I get a bit irate about glib remarks. Just asking doesn’t get anyone anywhere. Care of a person is not seen as a medical need. Relatives do it all. We are aghast our friends won’t pay for help as they have money and we think what’s happening is dangerous. But it’s care and not health so no nurse.

Thanks for all the thoughts.

In answer to a few of the questions - yes my brother and I both live in London. Mum hasn't said that she doesn't want to be near us, but she doesn't want to live in London and nor could she afford it. She grew up in Sussex and has siblings there, and we are not far. She also would like to be near the sea.

Neither me or my brother have space to accommodate her, we both have kids and work full time so it would be a big challenge for us all (on a practical note we also have staircases which she struggles with).

We have power of attorney in her country of residence and we are in the process of sorting that out for the UK. One of the things we find really challenging is that she has stopped communicating with us and is making decisions without talking to us first - we used to speak a lot more frequently than we do now. Today I discovered via one of her friends that she's been to the estate agent about selling her apartment... this is news to us and concerning as we want to make sure there is a plan in place first, and she's getting good advice etc. It's all quite hard to manage when communication is so reduced and she's far away. She seems to be making quite erratic decisions which is a real worry.

I think the best situation could be her own home with a visiting carer, if finances allow - but we don't have that information yet. Thank you for all your thoughts and for sharing your experiences, I'm sorry to hear how hard it is.

We await some clarity on her diagnosis later this month when we have a neurologist's appointment.