Hi Mrs. E. is is frightening to see a family member go through this. Lots of folks here are in your shoes and will have great tips. We also are pretty good listeners. Sorry you had to seek us out but glad you decided to join us. Cindy
Hi Mrs Tomlinson
I look after my husband who has bulbar palsy. there are lots of ways you can help and in fact you could play a critical role in ensuring his quality of life. We have a very good support network of friends and family. As his primary carer I am basically tired all the time. I have had to learn to ask for help. some of the help that is fantastic - is literally taking over from me for a few hours each week. My brother-in-law has a regular slot every wednesday and comes over and takes over from me. He will do chores around the place, and he also brings a cooked dinner for the family (we have three children) . The two brothers then have some quality time together and over the past few years I have seen them grow closer and closer. If you are not sure how to help - ask. Just love him and be there for him. get movies on DVD and watch them together... whatever your shared interests are..... support him and support his carers .... he needs you
Mrs Tomlinson...I also live in london, if you would like to leave a visitor message on my member page and can leave your email address, I would be only too happy to share any knowledge I have gained to help you to help your brother..like making sure he his getting all that he is entitled to here in the UK.