Desperately Seeking Help for my Brother

[Rosie1958]

Graham, Arthur, Sweetnote and Andy, thank you so much for your very kind and appreciated comments.

It’s been a couple of months since my last update so here is another.......

My brother was assessed in December to see whether he still qualifies for Continuing Care at the nursing home. When he first went there last year, he had FIVE major areas of need. Now he has been assessed as having TWO. This means that although there has been some definite progress, he is still bad enough to qualify for Continuing Care that is paid by the NHS and has secured a place at the nursing home for another 12 months.

I have mixed feelings. On the one hand, I am glad that he has the funding to look after his care but on the other hand, I am concerned that he may not given the opportunity / help to progress further, particularly as GPs appear to avoid getting too involved with care/ nursing home residents. Due to his brain damage, he still has psychological and behavioural difficulties, particularly with his cognitive ability. He doesn’t have any sense of danger and can’t look after himself. He constantly wanders off and he still has double incontinence which causes no end of problems for him. He struggles with his left hand side, there is a noticeable weakness. His vision on the left is affected, when for example he is trying to put a glove on his left hand he struggles and he can’t hold a fork in it. He is becoming far more emotional and was understandably very distressed when his immediate family returned to the Philippines for Christmas as he was unable to see them, god bless him. (They are now back)

On a positive note, his walking and posture is now much improved. He no longer looks gaunt and has put on a bit of weight. His speech and ability to hold a conversation has improved but he can’t concentrate for long and constantly walks off. However, he appears quite clever at avoiding certain questions if he can’t remember the answer. His long term memory has definitely improved as he can now recall many of his life experiences and there is evidence of short term memory improvement too.

I have discussed the long term possibility of rehabilitation with the Continuing Care Specialist and I have managed to talk her into referring my brother to a local hospital for an assessment to consider whether he is now suitable for some neuro-physiotherapy . I have asked to be present at the assessment as he doesn’t always co-operate with strangers in a strange environment and I am keeping my fingers crossed that he might be suitable for the one- day- a week session. Fingers crossed .

[Doc Alan]

It’s been a couple of months since my last update so here is another.......
Fingers crossed .

Thanks Rosie, I'm sure all members also have their fingers crossed for your brother.
I was in the Philippines and missed your last update. Since you first posted over 15 months ago you've had 180 replies and approaching 23,000 views. It shows the interest and support your thread has generated .
It would be understandable if neither you nor most members had ever previously heard of the condition affecting your brother. You are now an authority, but for other members, just a brief reminder : ADEM ( acute disseminated encephalomyelitis ) is a rare type of " demyelinating " illness due to damaged myelin. That's the " white matter " protecting nerve fibres. Multiple sclerosis is the commonest type. Acute = sudden; disseminated = widespread; encephalomyelitis = inflammation of brain and spinal cord. The cause of ADEM is often not known, although it may follow an infection.
Early treatment is aimed at suppressing the inflammation. Additional treatment is symptomatic and supportive - what your posts have shown so clearly is just how true that is ... well done Rosie .

[Englishman2010]

Thanks for keeping us updated Rosie. It's encouraging that he is showing some signs of improvement, but it still sounds like you have your hands very full caring for him. You're an angel, keep up the good work, I'm sure he appreciates everything you've done for him

[Terpe]

Thanks for continuing the updates Rosie.
It sounds he's come a long long way from those early days.
Still a way to go, but with your support and his family around I'm sure he'll overcome many more challenges.

[Rory]

I have only just come across this thread because of the latest few posts than have been added. I have subsequently had to read all 7 pages and found it very moving and emotional to say the least.
I have no advice to give as i do not work or have had much to do with the medical health in the UK. All i can say is that our hopes and prayers are with your brother to get more of his life back to normal if possible.

[Arthur Little]

Hey Rosie..

I wish I had a sister like you.

I wish I had HAD a sister ... ...or do I?

It most certainly WOULD'VE been lovely to have had a sister like Rosie ... !

[Arthur Little]

, Rosie ... while looking back through the previous page, my eyes alighted on a post of Fred's from August last year ... and I just couldn't resist making a jocular comment on it!

Once again, thank you so much for your encouraging update ... and God Bless.

[Rosie1958]

Thank you to Doc Alan, Englishman, Arthur and Rory for your kind and very appreciated comments. You’re a great bunch of guys.

I met the neuro-physiotherapists today who suggested that my brother doesn’t need their help as he is moving and walking well. They were astounded by the progress that he has made on his own but agreed that he needs help with his cognitive ability, so it appears that a referral was made to the wrong department. However, some good has come out of this meeting because the neuro-physiotherapists are going to refer my brother for a consultation with the neurologist consultant responsible for this treatment when he first arrived in UK from Philippines. This is a definitely a step in the right direction and I am feeling optimistic. I just want someone in the health service to help me with him as I strongly believe that he can improve further with the right support.

My brother so misses being with his Filipina partner and his eyes well up every time her name is mentioned. I am sure that many of you on here can relate to that. My own partner suggests that being able to feel these emotions is a positive as most of those around him in the care home are lifeless and unable to communicate and function properly.

I am desperate to keep my brother’s family together, time is ticking by and the 2 year settlement visas runs out end of this year/ beginning of next. We will attempt to apply for a British passport for my nephew but can someone please advise me whether my sister-in-law will need to apply for Further Leave to Remain or Indefinite Leave to Remain?

A huge to everyone for reading this thread and for the support shown. I so hope and pray that there is a happy ending.

[RickyR]

Rosie, it's good to see that progress is being made. I really hope that your brother recovers enough to live a normal life again, it all seems so positive again now.
Your brother remains in our thoughts and prayers.

[Rosie1958]

Thank you Ricky for your very kind words of support.

It's now April, some 20 months after my brother was taken ill in Philippines during a business trip. There has been some further progress and my brother has now had three sessions with an Occupational Therapist and also been to see his Consultant Neurologist. As a result of this, he has just been offered a 12 week placement at a residential Brain Injury Rehabilitation Unit where he will undergo therapy and assessments to establish his ongoing needs and suitability for further rehabilitation. I couldn't have asked for more, it's exactly what he needs and I am delighted! He moves on 1st May which also means that he is a bit closer to us.

My brother and his family still need all the help that they can get and your continued prayers and support are all gratefully received.

Rosie x

[Doc Alan]

My brother and his family still need all the help that they can get and your continued prayers and support are all gratefully received.

More good news Rosie . I'm sure all members do support your brother and his family, through you.
Happy Easter to you and yours .

[mickcant]

Hi Rosie
Am pleased that your brother is getting some help, you are all still in my thoughts.
Mick

[Vische]

Hi

I have just returned from Makati where my brother has been taken seriously ill whilst on business. Although he is British, he is resident in another part of the Far East and is self employed. He is currently in a private hospital and it appears that he doesn't have travel insurance so his own funds are being used to pay for his treatment whilst they last. I am desperate to help him and his family to return to the UK but cannot afford an air ambulance (I have been quoted £91k) and he is currently too ill to fly anyway.

He is not married to his partner of 7 years and they have a little boy. His partner is Filippino and has been to the UK 3 times previously on a visitors visa. It is not known whether my brother will recover and if he does, he will need long term care from his devoted partner.

I have reported the situation to the Consular office. Any advice about immigration in these circumstances and anything else would be greatly appreciated.

Thank you, I am so worried.
Rosie xx

So sorry Rosie, i wish i could help you, but i don't know anything about those things, i guess i'l just pray for your brother to get well soon and be cured immediately. God Bless

[raynaputi]

So sorry Rosie, i wish i could help you, but i don't know anything about those things, i guess i'l just pray for your brother to get well soon and be cured immediately. God Bless

Vische, if you would read through all the posts, Rosie's brother and family are all here in the UK now and he's recovering well, small steps at a time but great accomplishments I may say..

Rosie, nice to hear about your brother's progress and we all hope everything would be better for him and his family and to you too.

[Vische]

Vische, if you would read through all the posts, Rosie's brother and family are all here in the UK now and he's recovering well, small steps at a time but great accomplishments I may say..

Rosie, nice to hear about your brother's progress and we all hope everything would be better for him and his family and to you too.

Sorry i was just shocked on Rosie's story that i just reply on her first statement cause its something i had some similar experience with my auntie five years ago.

Sorry also to Rosie, but still i will pray for your brother for his full recovery.

[Rosie1958]

Thank you for your kind comments, Viche.

I haven’t posted for a while about my brother as I was waiting in the hope that there would be good news to share ......... but I am afraid there isn’t. My brother went to the brain rehab unit on 1st May and was supposed to be there for 12 weeks. Unfortunately, he was very unsettled, his behaviour became worse and the rehab unit couldn’t cope with him. He was discharged after just 4 weeks and he is now back to square one in the nursing home, minus some of his clothes/ coat which were “ lost” at the rehab unit. I am still waiting for a report to be written about his condition and in the meantime, he appears to have been swept under the carpet again.

The situation appears hopeless at the moment and on top of this, his partner’s settlement visa expires in November. I pray that at least his family might be able to stay here in the UK, there is far more hope for them here than back in Philippines, unable to work or go to school (nephew can only speak English so there would be language problems in a state school) ............ Life can be so cruel sometimes.

[imagine]

im right sorry reading your update that it isnt the good news we all would hope for,

god bless my prayers to you and your brother

[Vische]

I agree on you Rosie that Life can be cruel sometimes right now this month my mom was diagnosed to have a tumor in her right pelvic bone, and it might be the cause of the cancered breast which was remove 5 years ago since there's no advice that she must take an annual blooad cancer cells check up we thought my mom is already saved and last May my mom is experiencing a lot of pain in her right legs that we thought its only rheumatism but when the Doctor suggest to have an xray they found out that her right pelvic bone is diminishing or the tumor is eating up her bone and making her bone weak and then she had a CT scan and there they found out about the fatty tissue/tumor in her right pelvic bone. Now the pain is getting stronger mostly at night that she can't walk or step in the stairs that we had to let her sleep downstairs for its is really painful when she move her right legs. The choices the Doctor have given is no assurance that it will prolong her life neither her health to go back in the right condition. Im so afraid right now what might happen, i don't show her that iam afraid so i always laugh and tell jokes to her but every night i cried and cried. I can bear the pain of watching her when she suffered the pain at night. All i can do right now is let God do His thing, i just do whatever i can to cheer her up and make everyday of her life a happy moment.

[CBM]

Rosie - it's just a thought, and I'm not an expert, but surely your nephew is a British citizen by descent through his father?

(The only circumstance that I can see where that might not be the case is if your brother was born overseas and he did not register his son's birth with the Embassy)

That being so, your nephew surely has the right to remain in the UK and since his father cannot care for him his mother must surely be given indefinite leave to remain (and hence citizenship in due course) in order to care for him.

The UK does not deport its own citizens.

Terpe and Joe will know more but from my own experience I think am right here.

[Doc Alan]

I’m sorry and disappointed to read your latest news Rosie. The number of views and replies on this thread since you started it almost two years ago is testimony to the concern and sympathy it has generated. Life can indeed be cruel, and I wish I could give you good news about advances in diagnosis and treatment of the rare condition afflicting your brother. As I have said before, not surprisingly most people have never heard of it – Acute Demyelinating Encephalomelitis, or ADEM, is still not well understood. As a reminder, it’s one of the demyelinating disorders, the commonest being multiple sclerosis. Nerve function is affected due to damage caused by an inappropriate immune reaction to the myelin sheath around them.
If nothing else, reading your thread and the responses should put life’s problems into perspective for members – count your blessings ! Your brother may be unable to fully appreciate it, Rosie, but YOU are a blessing for him .

[Rosie1958]

Thank you so much to Imagine, CBM and Doc Alan for your kind words of encouragement, as always they are very much appreciated.

Viche, I was so sorry to learn about your mother’s illness and I can empathise with the pain that you are feeling. I wish you and your mother strength and hope that there may have been some improvement.

My brother appears to be getting worse, he’s very unsettled, withdrawn and often unco-operative when it comes to personal care, so the powers that be have decided that he isn’t suitable for any further help at the moment. This leaves us in a daunting place as without help, he will not improve which makes me feel so sad for him and his family ……….

On a happier note, my brother’s partner passed her Life in the UK Test today and we will be completing her ILR visa application together next weekend. We will then be making an appointment to submit/ attend the application in person rather than by post. I’ll let you know what happens and will be keeping everything crossed and praying for a successful outcome.

[Arthur Little]

Hello again, Rosie ... it's really good to see you continuing to post here in spite of the strain you're under due to the uncertainties surrounding your brother's long-term prognosis and their unsettling effect on the lives of his loved ones. Perhaps the fact that you feel able to discuss his illness with your many friends on the forum will, to some extent at least, help to ease the pressures. I certainly hope so.

Congratulations to your brother's partner on successfully completing her 'Life in the UK Test', no mean feat (with its extremely high passmark of 75 percent) - especially in the light of all she's gone through over the past couple of years - and very best wishes to her when applying, in person, for ILR.

[Rosie1958]

Thank you so much Arthur. It is a comfort knowing that there are numerous people or this site who are genuinely interested and very supportive about my brother's situation and that of his Filipna partner and sons.

Having a Filipino family and living in Philippines for a good number of years before he moved to Malaysia does of course mean that he had a lot in common with so many of the British guys on this site. He loved Philippines and became very successful there, even taking tea with the President a few times. The bubble has now burst and it is doubtful that he will ever return ............... god bless him. My heart feels so heavy for his sons who may never see their dad again.

Life and freedom is so precious, live for today and enjoy life everyone as you never know just what's around the corner .................

[Vische]

Rosie thanks a lot, and with the prayers to the Lord im so glad that my mother's health is doing ok, she can walk again, now a little bit slow but we're very happy that there are lots of improvement. Im also glad that my father's operation is successful and i wish both of my parents will going to be ok.

I will pray for your brother's health, wish he will be ok sooner. Nothings impossible to God, more prayers. And take care Rosie, i know its really hard going through this kind of situation i myself had experienced lot of stress and depression but with the help of prayers i became strong for them. Its really hard when my two brothers heard about my mother's health they also get sick and for that im the only one who must carry on, sometimes i just cried at night but in the morning i must not show them any sign of sadness. Both physical and mental is affected, i even loss weight.

Take care Rosie and prayers for your brother, and also congrats to your brother's partner for passing the test. Thanks again

[raynaputi]

God bless to your brother and your whole family Rosie.

[Rosie1958]

Thank you so much to my caring friends, Viche and Rayna for your very kind words

My sister in law's ILR application was finally posted last week. We had hoped to attend in person but like numerous others on here, we couldn't source an appointment and then found out that partners had to attend with applicants anyway so that idea went out of the window since my brother can't travel due to his illness. So we've joined the queue and will await the outcome ............

[imagine]

wish all the luck for the ilr

[Rosie1958]

Thank you Imagine, we need all the luck we can get. Thank you also for the rep for good luck, that is so kind of you and very much appreciated

[Arthur Little]

Hello, Rosie ... I've duly unlocked this thread at your request and look forward to reading your latest positive update.

[Rosie1958]

Thank you for unlocking the thread, Arthur and apologies for my long absence due to unforeseen circumstances............

Anyway, I am delighted to share with you all that my sister-in-law was granted indefinite leave to remain last month!! Unfortunately, her residency card contained a spelling error so had to be returned for correction but we are very nearly there and it is a huge relief. My 8 year old nephew can now continue his education in UK and have the chances in life that this will bring.

Sadly, my brother hasn't made any further progress and is still in the nursing home. After 2 years, his situation doesn't look good but at least his family is now able to remain here in the UK indefinitely and can continue to re-build their lives making the best out of a desperate situation when their whole world fell apart.

Thank you so much to everyone for the prayers, kindness, help and support that you have given, I shall be eternally grateful to you all

Rosie