Helping my brother who has MSA

[scarke]

My brother is currently in hospital 11 months now with MSA as a result of cronic alcohol abuse for many years. He is double incontinent, is suffering from rigours in his limbs and is refusing to do physical therapy. He is in hospital in the philippines and we are trying to find out if a nursing home in Ireland would take him. There is a trust that pays for his care. No one seems able to tell me how long he might live for but they are afraid that if he is released from hospital he may do something stupid. He feels like he has nothing to live for. He is 57.

[FredaE]

Your brother certainly has problems. You say he is 57 which means that he is responsible for himself. Chronic alchohol abuse does not cause MSA - there is no known cause, but it will not make his care any easier.... for him or for you. He may indeed go further off the rails if he is out of hospital but it will not be easy to find a nursing home for him if he does not cooperate. Many nursing homes have problems with accepting MSA patients as the illness is not well knownand very unpredictable. It is known as a complex condition and nursing homes who can cope are thin on the ground.

I am afraid that it is not possible to predict life expectancy. When my husband was diagnosed first we were told that he could live 6 months or 12 years or anywhere in between.

Can I ask why you want him nearer home? Is it possible that he is better off where he is. Care costs in the UK are astronomical and I doubt if it is any different in Ireland. You may be able to pay for better care where he is?

There is no cure except love and care and nothing apart from physio and a will to fight that makes any real difference to the quality of life. if he feels as he does there is nothing you can do to force him

I am sure we have members who can tell you about Ireland

[scarke in reply to FredaE]

There are many complications to his story...moves to Philippines to escape dealing with his alcohol abuse, marries a local, loses all his money to her, then gets involved with another, has a child, mother (prostitute) abandons them both before the child is 1. Child in state care for 3 years now.. One hell of a mess. Looks like the mother is going to be given custody back, hence my brother being held in hospital as it was the only thing that gave him hope. I go from one extreme to the other, I have no relationship with him, and in fact twice in the last year members of the family had to go out and have him admitted with my power of attorney. My late Dad set up a trust fund so that my brothers inheritance would go to his son eventually when he turns 21.

I feel awful about him being over there on his own but the care is cheap compared to Uk or Ireland. I just would like to know if it is possible for him to get care in Ireland or is it impossible...we reckon we only have enough for 3 years care from the trust, and because he never paid taxes in Ireland we are told he cannot access free health which is a huge worry.

I certainly do not want to be looking after him after the destruction he has caused over the years but yet I feel we need to do the right thing also.

[FredaE in reply to scarke]

What an awful mess. My grandfather was an alchoholic and created havoc too. there seems to be little you can do without his co-operation and the nature of his problems makes it very unlikely that he will co-operate.This leaves everyone else to clean up the mess with as little further damage to yourselves as possible and as much benefit to him as possible He chose to go to the Phillipines and has lived there some time by the sound of it so to him it is not the banishment it would be to you and if he comes to Ireland he will be just as much on his own as you cannot and should not give up your life to be with him. Three years is not long and if the money will last better in the Phillipines it seems to me that is probably the best place for him and everyone else.There are times when other people leave you little chance of helping them without wrecking your own life and you may need to accept this without guilt

[Hellebelle]

Hi, what a difficult position you find your self in. I agree with FredaE that it seems more practical for your brother to remain in the Philippines if the money for his care will last longer there. The situation in the UK (and Ireland i would imagine) is not easy as the care is so expensive and family savings are drained very quickly when you consider that a week in a nursing home will cost £1000 + MSA is a very complex condition and not every home will have the expertise necessary to manage it. There is the possibility of getting CHC funding, but as we found, it takes a lot of advocacy, time and a supportive team around the person with MSA to achieve this. Unless you want or are able to devote your life to this cause, then perhaps your brother is better where he is.

It can be very guilt inducing as he is your brother, but there are other ways you could support him by keeping in touch with him by phone, social media and written correspondence. I don't know whether you would consider using Skype? It is the next best thing to being there.

There are no easy answers, but your life is precious too and it sounds as if you will be devoting most of it to your brother if he moves to Ireland.

[Fgsm]

What a truly sad situation you find yourself in . Your heart and your love for your brother is heart wrenching . I am sure you wake up with the guilt and go to sleep with the guilt . I have come across a similar situation but brain scans and dat scan ruled out msa and parkinsons . The tremors were the result of alcohol and a particular anti psychotic medication . The specialist said the medication was the poison .This is being followed up at the moment . Perhaps if you visit him , you might be in a better position to make decisions . I know other members of family have . Wish you luck .

[scarke]

Thanks everyone, I do call him every week. Yesterday the nurse asked me to stay on the line after I chatted with him. So he complained that they would not give him sleeping tablets, no sleep very agitated, said they had run out of the sleeping tablets...I asked about the new physical therapy they had started and he said he could only do 15 minutes on the bike because he is so tired with not sleeping. I explained he would have to get fitter in order to go home and he changed the subject. I then spoke to the nurse and she told me he is sleeping really well and gets sleeping tablets and that he just refuses point blank to do the physical exercises and this is is way out. She said he took 5 steps and said no more!....so at the moment I am not going to visit. I was going to but if he is lying like that to me on the phone, there is no point.

[FredaE]

Alchohol is awful stuff. destroys people completely. I think you are right. He will only lie to you face to face if you go so you will be no further forward and there is absolutly nothing you can do for someone who will not help themselves.. I am afraid that people think they can help alchoholics but the sad fact is that no-one can help unless the drinker accepts the problem and really wants to do something about it . Otherwise as I am sure you already know it just destroys everyone else's lives as well. You seem to have done all you can and more so try to rest easy with your actions

[scarke]

I guess the problem with have with him is that he has not had a drink since last September but this was not thru rehab or him agreeing to give it up, he has been in hospital and there fore no access to alcohol. He lasted 10 days out in his apt with a carer and then asked to be readmitted as he was hearing voices again. He now is in this hospital with good care but sees no point to life as the custody of his child will most probably be given to the mother despite our concerns re her lifestyle. Hard to imagine how awful it must be. From what I have been reading on this forum, the future is bleak and it seems like a dreadful dreadful disease particularly in the end stages.