Can anyone share ways that family, friends and caregivers have helped support you to recover, or things you wished others would do/not do to help you?
I don’t want to be overbearing and am looking for ways to be a better support system. Thanks in advance!
If your brother has cirrhosis, you may find this publication useful:
britishlivertrust.org.uk/in...
However, no one here will be able to provide the specific medical assessment and guidance he needs. It is important that he reviewed by a liver specialist.
Thank you for the information. He says he wasn’t diagnosed with cirrhosis, but hepatitis. I’m also not looking for medical advice in this post, but rather ways friends and family can help to encourage a loved one.
For instance, I was on video chat with him for hours the other day but I didn’t want to discourage him by saying his stomach swelling was a lot more than it was last time. Maybe I should have brought it up, or maybe be in regular contact more before bringing it up. I’ve also been writing letters and getting ready to mail a box with an exercise book and stretching bands, etc. I’ve even painted some encouraging quotes. It’s been a month since I visited, but the swelling has gotten worse so I’m worried about what else I can do to encourage him to go to the doctor and exercise more.
I can only imagine how uncomfortable it must be with both the Ascites and edema, I feel so bad for him. Anyone would be discouraged having to deal with that.
Hello. It's a tough question. I hate asking for help and would rather do everything my way. Sometimes I have to give in and listen to my friends and family. Just suggest gently that you have a chat about what is expected from you, but always be there to listen. We are all frightened and sometimes struggle to accept weakness.
Good luck☺️
Yes, he does NOT like to ask for help, but is one of the most thoughtful people I know towards everyone else. It’s true, I need to ask him what he needs from me instead of trying to think for him. That’s exactly what I needed to hear. Thank you so much!
Personally I would say that there are some things to avoid. For example, many people with liver issues suffer from fatigue, which is different to being tired. However, when (as someone wth liver issues) you say you are tired, most people respond by saying "me too". So not helpful. Instead: are there jobs you could help with (tidying garden, watering plants, cooking food- I don't know how far away you are from him).
If you're not sure about mentioning the swelling, why not have an honest chat about this? Rather than mention it, it might be better to say "So if I notice any changes from the last time I saw you, do you want me to mention it?"
Remember if you ask how they are feeling to actually listen. So many times I get asked this and either people can't wait to tell you about how they are feeling, or they blank what you've said altogether. Neither of these are actually helpful. Make sure if you ask, you have the time for a full answer. (I'm sure you are doing this, but others might not be)
Finally, it is impossible to guess hjat each person would find helpful, so why not ask, "would you like me to send x, y or z? Me personally, I would love it if people would write back to me when I write to them or even send a card with some well chosen words of their own in it. (Rare as hen's teeth btw)
Other people could help by planning meals or even by cooking meals (if he has ascites low/no salt) or even ordering shopping.
Good luck and I hope you find a way to help him. Also, it is always helpful to have someone to drive you to appointments and take notes for you (a second pair of ears) 
Thank you so much! You have given me a lot of ideas. I live 8 hours away from him, but my mom is close so we can come up with a plan to take meals over to him.
I am also anxious to ask him more than just “how are you feeling today?”, so thank you for the ideas about how to strike up a conversation. And you are so right about how we unconsciously say “me too”, I know I do that sometimes without thinking.
I really appreciate every word. Thank you.
So glad to have been of some help. Cooking meals for yourself can be a bit of a burden, so when someone adds in different meals that you wouldn't cook yourself (or even cooks something you really like, but don't have the energy), it's a real bonus. Recently I was listening to a podcast about how people can help others in a similar situation to your brother and they made the point that if other people make food to bring round, it is better if they provide the food in take-away containers, so that the recipient doesn't have to worry about returning the clean containers. I'm assuming this won't be an issue for your mum, but if others want to help, it's something to mention.
You sound like a great sister to have. He is lucky to have you. I wish you and all of your family the very best
Thank you again! Great points, I appreciate it so much. I will mention this when we bring food to him.
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