My husband and I are caring for our 25 year old son, who has lost the ability to do anything for himself and has to have 24 hour care.
We are trying to keep him at home as there are no longterm facilities here except old age nursing homes. We do have 50 hours a week of support workers, that allows us to work.
I am exhausted, fighting tears daily, so very sad watching your childs life being sucked away by this monster MS and frankly how do you keep hope when all you hear is "there is nothing more we can do but keep him comfortable"
His case is so different than RRMS that finding someone to relate to has been difficult.
Anyway I will keep my head up and go on as I have been living only one day at a time, but would really like to talk to someone.
We are trying to keep him at home as there are no longterm facilities here except old age nursing homes. We do have 50 hours a week of support workers, that allows us to work.
I am exhausted, fighting tears daily, so very sad watching your childs life being sucked away by this monster MS and frankly how do you keep hope when all you hear is "there is nothing more we can do but keep him comfortable"
His case is so different than RRMS that finding someone to relate to has been difficult.
Anyway I will keep my head up and go on as I have been living only one day at a time, but would really like to talk to someone.
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