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mild and seem to be helped by medication but in the last 6-8 months her cognitive abilities are worsening - very withdrawn, problems with conversation and language, seemingly apathetic about things she was interested in, some confusion.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.

Thanks for your update @BigLittleRedOne. It would be worrying me that your mum is making decisions without having fully thought them through. It's fine that she has a preference to being by the sea and near her siblings. And we don't know how old those siblings are or what health they are in or whether any of them are in a position to have her stay with them or help her in any way, but I wonder if she has thought any of that through or talked to any of them about moving near them. If she isn't initiating communication with you, perhaps you and your DB can ensure one of you calls her every day to find out what's up and perhaps get her thinking and talking about her situation. She may be just caught up in the excitement of "moving away from where she is" rather than considering what she's moving into and how her illness is likely to proceed. It must be difficult for you, and I certainly don't envy you, but just getting PoA isn't going to really change anything, especially if she is still relatively competent.

One consideration that you may want to raise with your DM is how often you and your DB's family will be able to visit with her if she is in Sussex and you are all in London. I realise you're not visiting her very often if she's living abroad, and she may be happy at present with that level of interaction, but as her circle of friends and siblings shrinks, immediate family may be more important to have around.

It sounds to me like a warden controlled flat with visiting carer a few times a week might be ideal for her. You could start researching those sort of options even though you don’t have the exact financial information yet.

Something to consider is that the move itself could trigger further cognitive decline. This is very common.

You could look at respite care in a Care Home to start with then go from there.

I am assuming your DM will be self funding.

When my DM moved into a care home (recovering from a hip fracture and starting to show signs of dementia), something I looked for was 'through care', somewhere that would mean DM's care could be increased as she declined. She was in her mid 80s so I knew this was inevitable.

As DM's condition (physical and mental) has declined she has moved from residential care and is now receiving EOL nursing care. She has stayed in the same home throughout.

Care Homes arent cheap, we are in a relatively cheap area and DM is paying £1,400 per week.

When DM was discharged from hospital there was no interest from 'officialdom' where she went.

@GnomeDePlume That's cheap for a home with dementia care and nursing. A standard home here is £1500 if you want a good quality one. Dementia and nursing is a lot more.

@BigLittleRedOne is an urgent visit needed? You need a face to face don’t you? Questions need to be asked and answered honestly. Elderly relatives won’t be carers. Do have a look at sheltered housing but are you buying or waiting for the council? Definitely start some research.

She will have to pay a fortune for care over here - even if she qualifies for local authority care it won’t be great

@MeetMeOnTheCorner East Midlands. The small town DM lives in has a number of CHs. Possibly competition is keeping the price down.

@BigLittleRedOne my DM's decline has been very swift. In less than 18 months DM has gone from independent living to EOL care.

IME you will constantly find yourself solving 'yesterday's problem'. I have lost count of the things I have bought/sourced/sorted only to find that DM has declined beyond that particular problem.

This 'yesterday's problem' thing would make me very cautious of making long-term commitments. Rent dont buy, be prepared for care needs to escalate quite suddenly.

@GnomeDePlume We’ve quite a few but when a friend was looking for a dementia care placement 6 years ago they were 33% minimum more expensive than regular care. Nothing has changed here but the DM here might not need that. His relative was lashing out so more challenging.

Other things to consider ...

• changing country when you are ill and frail is hell
• finding and buying a new home is very stressful at any time but with her challenges will be more so
• both the above could cause deterioration in her condition and physical/cognitive difficulties
• she needs a temporary secure base when she first returns from which assessments of her condition and needs can be made. Buying a property must take into account her needs both short and long term. Just buying somewhere she takes a liking to won't cut it. It needs properly assessing for her needs and that can only really be done on the spot.

@MeetMeOnTheCorner dementia care in that circumstance quite possibly meant secure which means DOLS and higher staff ratios. Fortunately by the time DM started lashing out she had lost all strength so carers just needed to be quick on their feet.

@Mischance also, I cant stress it enough, potential future needs.

My DM has had use of multiple versions of stand aids, hoist, wet room seat. Each needed for a short time. From the start DM has had a hospital style bed which could be lowered to the floor for sleeping (safer than side rails) from the get go.

Might nit be feasible, but Almshouses are generally adapted.
I'm a home carer and go to 3 different properties.
I'm not sure how you qualify though.

@GnomeDePlume Yes, maybe, but he wasn’t deprived of liberty.

However future needs can be some years down the line because getting worse isn’t always quick. Our friend with Parkinson’s dementia, I think, had early stages of dementia before the Parkinson’s was obvious. DH and me had been concerned for years but other friends thought it was a personality trait! It sort of is, but it has a name.

My thinking was that decline can be sudden. Having the possibility of 'through care' can mean there is less upheaval as care needs increase.

It is difficult for people to understand dementia in any form if they havent experienced it. Memory loss and can be part of it but not the only part by a long chalk.

Sheltered accomodation can work for someone who is physically frail but be totally useless for someone who is confused, hallucinating, distressed. These symptoms of dementia arent always obvious (at least to start with).

I’ve not seen sudden decline in Parkinson’s or dementia. Obviously most people stay with spouse if they can but eventually, and it can be years, a care home is needed. Some people can decline rapidly at the end but tend to die from other issues, not dementia or Parkinson’s. So I think Op really needs to know how ok or not DM is but many years isn’t unusual for Parkinson’s.

You might want to have a look at rental properties from a site like this one: https://myfutureliving.co.uk/

@SylvanMoon Not sure they have any care staff though? Or wardens?