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 .