Every piece of help and advice possible please - I am at the beginning of a journey

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Where do I start, well at the beginning of course. I am working in Qatar with my wife Viktorija (Vika), we came here in June 2023, both of us working. Then in September 2024, whilst at a fashion show Vika had an Intracranial Haemorrhage with intraventricular haemorrhage right side resulting in temporary left side paralysis, after four weeks in hospital, with two weeks intensive inpatient rehabilitation we were back at home and the recovery process was moving forward.

25 weeks to the day from the first ICH, we came home from dinner and walking back to the apartment when Vika said she was having difficulties with walking and speaking, we got back to the apartment and I called the ambulance, they took her to the hospital and admitted her, immediate craniotomy and 5 mm midline shift a massive Intracranial Haemorrhage, it was touch and go and they talked about DNR, I was at my wits end, we got through the first few days but right side paralysis and global aphasia. We were moved several hospitals but refused the rehabilitation institute for reasons undeclared but minimum mobility standards was the reason.

Progress was slow, but we made some and after almost nine months we came home on Christmas day, I have a carer in the day, we have home medical support with physiotherapy, speech therapy, doctor’s regular visits and pool access. The aphasia has improved but not the paralysis, the mood enhancing sertraline (50mcg daily) had to be stopped and that was a tough six weeks but we got through that. Some days we have hours of screaming but at least it is my Vika in the room and not some smiling unreal person. I don’t know if that was the right decision or not, but Vika knew what the medicine was doing to her and wanted to refuse it, so that s what we did.

We will be coming back to the UK, for a short visit for legal reasons next month and not long after permanently, nothing has been registered with her GP or with the NHS, the intention is that I will be her full time carer, I don’t think I have a choice or want anything else for her, but I need to make a plan and I don’t know where to start.

I am sure that there is lots more relevant information but I just wanted to share an outline and seek the communities valuable information and support - thanks in advance.

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Hello Mark,
Welcome to the Community !
I am sorry to hear of your difficulties; I will not beat about the bush but you need to brace yourself for those that lie ahead. I too was an expatriate (Malaysia and Dubai for 15 years.) My brain bleed was long (30 years) after our return to UK but I drove my Range Rover home to Leeds from Dubai (passing through Qatar!) and I’d had plenty of time to prepare.
I don’t think there is much I can help you with as I do not know your circumstances but finance had a part to play for me; I was not wealthy, but comfortable and I had a “rainy day” reserve of about £25K, which meant I had little help from the state(there was a £23500 savings limit). I was in hospital, semi-conscious for 5 months and then discharged home quite suddenly, in an unseemly rush: they needed my bed ! The council funded some alterations to my home (ramps to permit access/egress), and because I could not walk - I was confined to a wheelchair that I’d had to buy expect £2K to £12K) Plenty of used ones around at the lower end! We had just had new carpets fitted throughout the house but it hurt when we had to have them ripped out and replaced with quality lino (to permit easier wheelchair access around the house) another £2K, and a hoist for emergency lifting in/out of bed plus various physical alterations to the house(wider doors etc) another £5K, A WETROOM cost £10K - and my emergency reserve was fully utilised! Then there was Carers - the hospital organised a “full care package” which included 2 carers 4 times per day but after a few months they reneged on that and I had to pay over £2K per month. My physiotherapy was covered by the NHS but it ran out after 12 weeks and I then had to pay £2K per month and (after 5 years) still do ! I have bought new wheelchairs for different purposes .(don’t commit to buy until you’ve tested them at home). Which leads to your getting home - ARRANGE FOR AIRPORT ASSISTANCE WITH YOUR AIRLINE. Getting on/off the plane can be awkward and those airport corridors can seem like a marathon ! And assistance on arrival is vital too. Do you have a home available for your use on arrival? Health insurance? car? you may need a wheelchair accessible vehicle (WAV) You might be able to pre-book one for your trip from airport to home (firms such as Airline Connections -there are plenty of others. Remember that if you are in a wheelchair you need some help with suitcases etc !
Any specific questions you have please feel free to let me know.
All the best; hope some of that helps !
Bob. Isle.

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There is a Carers’ Allowance which is not means tested - well, there are two, lower rate and higher rate. We only were awarded lower rate despite the fact I need 24 hour care. But it’s a help towards paying for my private physio sessions, as NHS physio care stops after 6 months. Hope that helps. Sorry you/ we are having to go through this.

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Make time for yourself. It won’t help Vika if you burn out. Take any help you are offered from friends and family. This could be as little as bringing round a cooked meal or sitting with Vika for an hour so you can get out.

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Hi @MARKH

Welcome to the community, I’m sorry to hear about Vika’s strokes, it sounds like you both been through a tough time.

I know you’re not in the UK yet but do give our Stroke Support Helpline:0303 3033 100 a call for advice about when you do get back here permanently, they will be able to point you in the right direction for the things you may need.

I hope you’ll also find this community helpful, there is lots of knowledge here from our members. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

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Hi @MARKH & welcome to the community. Sorry to hear of Vika’s strokes & the ongoing difficulties.

I can’t give specific advice for your circulation but a couple of things to think about perhaps.

Check eligibility for any benefits. For some you have to have lived in the UK for a period of time before you can claim.

Definitely make full use of assistance at the airport. You might also need a fit to fly letter from a dr.

Registering with a GP when you return should be a priority so you can access any treatment and meds she may need. You should also register as her carer with your GP as they can provide support to you too.

Good luck with the move.