MOVING TO THE UK WITH PARKINSONS


#1

Hi ! have a problem with my husband who has Parkinson’s with lewy body dementia … he has been advised by the doc that he should think about going into a care home …however he denies any illness or problems (has the usual PD things …balance …has fallen every day in the last week…slowness and stiffness of movement, eyesight problems, aggression. anger and is really hard to deal with, There is no one only me to care for him and I am finding it increasingly difficult. He refuses respite care …we live in France and he cannot speak French, but also refuses any help from English speaking carers …I recently had to go to the UK to arrange a funeral ,worrying about him was difficult The doc arranged care but, as usual, he refused to go. He had neighbours looking in on him each day …but it is not their responsibility and they are all busy working, etc. Every day he was on the phone to me asking where this, that or the other was (despite my leaving easy to understand lists, I cooked all the meals (mostly stew which he loves) and froze them in single portion containers …with directios to remove them from the freezer to defrost and reheat in the evening, He ate nothing whilst I was away (3 weeks) the neighbour bought him in things to eat …I found everything wrapped in foil still, and put into a bin in the garage …I think he was punishing me for having to go away. The evening before the funeral of my brother, he rang me to see when I was coming home …not one word about the funeral, not even any hopes that it went well ! Just about himself …I had to turn my phone off during the funeral, or it would have rung all the time with him asking the same thing ! Sadly the morning I was due to return, the airport was under threat of being closed due to snow …I shouldn’t say it, but I HOPED it would be …but it wasn’t !

My problem now is, we cannot stay here as there is no care and we live in an isolated rural area and the house we live in is difficult to manage as he can no longer safely do any diy or gardening (although he will climb a ladder if I am not looking …one day he will fall off and kill himself ! then everyone will blame me !) and I can find no one to do odd jobs …

I have inherited a house in the Uk BUT have read care for people with Parkinson’s is not very good …and again, there would be a problem with acceptance back into the health service (we worked until retirement age all our lives in the UK paying taxes etc …my husband is 85 I am 70 (second marriage, he was a widower)…and the biggest question is WHERE to live ! The house there is not suitable (steep stairs, no place for a stair lift, etc) have looked into retirement flats but those that can supply care if required are too expensive (charges of 6,888 per year, NOT including council tax, insurance, etc etc plus care is additional cost)…so concerned trying to work out what to do …seems our only option might be a short trip to Switzerland ! Any ideas ?


#2

Hello BOURGEOIS,

It sounds like you’ve both been having quite a tough time of it lately. I’m so very sorry to hear about your brother, my condolences to you.

I’m sure the lovely forum users will have some ideas and suggestions for you, but I also thought I’d weigh in. Are you able to make calls to the UK? If so, our helpline team will be able to chat with you about possible options, and steps to take to make the move (if it does happen) more smooth for you both. You can reach them on 0808 800 0303, Monday-Friday from 9am-7pm, and Saturday from 10am-2pm. If emailing would be easier, you could get in touch at hello@parkinsons.org.uk.

I hope this is helpful for you, and best wishes to you both.
Min
Moderation Team.


#3

Hi,

If you move back to the UK, both you and your husband will be entitled to NHS care immediately. There should not be any issues related to having lived abroad. I used to live in Canada, and have contributed for years to an Expat forum. This issue comes up frequently, so I’m quite confident that you won’t have a problem.

You have doubts about the quality of NHS Parkinson’s treatment. From what I’ve observed, NHS care for Parkinson’s is a bit of a post code lottery, but is generally good. Based on my own experience, the biggest difficulty you are likely to find is a long wait to see a consultant. In the end I chose the private option. My private neurologist cost £250 for the first consultation, and £130 for each 6 monthly check up. Apart from that I get the drugs and physiotherapy free on the NHS.

Having moved back, you could sell your house and buy something more suitable, but I realise that is easy to say and more difficult to do. You can get help from Social Services to adapt your home. I’ve had that done twice for both my parents and each time it was free. They will usually lend you equipment too.

Arranging care for your husband may be the biggest challenge of all. There are a number of different options for care. The one you describe, which sounds like sheltered accommodation with extra care is probably one of the more expensive. Carers can come to your home. That is probably the cheapest option, if night care is not needed. My father who had Lewy bodies was looked after by my mother at home, with the help of carers, until his death.

If you bring your husband back to the UK, you should waste no time in getting a Social Services assessment of your husband’s needs. Even if you do not qualify for any financial assistance, the advice of the social worker will be invaluable and put you in touch with agencies which can help you.

State aid for care is available, but it is means tested. There was a similar case to yours on the expat forum and the value of the house in France was taken into account in the means test, meaning the family did not qualify for state aid. This will become a major issue for you if your husband deteriorates so much he needs residential care. You should probably get some advice about this from Age UK or the Citizens Advice Bureau, but you should probably be thinking of selling the house in France.

Best of luck to you. The road ahead of you must appear daunting.


#4

I wanted to respond to this post but couldn’t find the words Jane. Your post has been of more help than I could have offered to Bourgeois I hope she sees it and is able to take on board your valuable advice.

Les


#5

Thank you so much for your kind answers and taking the time to respond ! Forgot my password and had to re set it, which is why I have not responded sooner !!

The difficulty in relocating is my husband cannot travel …(well, he could but I am not able to drive from here to the UK ¬ The doctor says he should go into a care home here, and I am quite willing to sign the house over to the authorities as would be required .but he does not even want to consider it ! I have found a lovely retirment flat in the UK but it it 338,000 plus around £10,000 per annum charges and of course all the normal outgoings …extra care is available at extra cost, but sadly because of the expense this would not be an option !!!

Still looking !! I have contacted Age Concern, Housing Carem etc etc etc but the problem is the illness …same here in France some options availablem, but not to cater for the health problem. Have even thought of buying a place in the UK for us both and not telling them about the Parkinson’s…and suddenly 'discovering ’ it once we are there …although the fact that he takes a lot of meds which are for this illness may prove an indicator ! onward…