I am keeping you in my prayers and close to my heart. I am sad you are feeling so alone right now. Thank God your Mother is able to be at home right now. When my time comes, I pray it will be the same for me.
I can relate somewhat to what you are saying.This year, when I became ill (in bed for 3 days) after my husband had a very serious hospital stay (7 days on ICU, 3 of them on a vent) for pneumonia, (he is chronically ill also), he had the nerve to ask me what are we going to do if he gets better and I get sick. Guess he totally missed the two years I spent praying to die, prior to my DX. He drove me for my scope,was told by the G/I Doc, before they came together to wake me and tell me that I had Crohns. Then three years later asked me "Do you really have Crohn's" after hearing the illness described on T.V. He has been disabled for sometime, I have been the major bread winner for the last 25 years, and continue to work full time in an effort to keep health insurance on us both. He came home from this years hospital stay better off than he has been in years. They took him off all diabetes drugs, including inject-ables. Is he really that afraid he will have to stop barking orders while flipping the channels with the remote, long enough to bring me a sandwich? LOL.
My youngest daughter (25yrs.old) , who is the most like me in her way of thinking, and very smart, read the spoon theory story this past summer. If you have never read it please goggle spoon theory and read it. Her joints pop and crack already, and her stomach often grumbles loud enough to be heard all over the room. She realizes that all 3 of her Sib's suffer 2-3 autoimmune symptoms already. After she read the story, I told her that one so young as the girl who wrote that story, was very lucky to have a friend who stuck by her for so long, and they were both insightful young women. She asked my to explain, and I offered a few explanations, and used one of her sisters reactions to my DX as an example . After I told her that some Crohn's patients were even abandoned by their family, she asked me why I thought so many of our support network disappear from our lives. I told her it is terrible enough to fear a disease that can make you be crazy, ill, and possible cause you bleed and pooh yourself into a hospital stay, surgery, or worse... But, I said "the only thing I can think of more horrible than that would be to have to watch someone you love go through all of that". For her that point hit close to home, because a few years ago her then 6 mo.old Niece (my Granddaughter) had emergency G/I surgery . I think the denial we tend to suffer from with this illness, extends to our loved ones, who don't have to live with our uncooperative bodies everyday, and it is not so "in their face", so they get kinda flaky. When we have a real good day, just like us they choose to think everything is fine. "But you don't look sick"
So... next time they seem so insensitive, I will say a prayer of forgiveness, not just for them, but mostly for myself, because ,(especially if I'm in pain) I will need forgiveness for my anger and hurt, I am sure they love me and are doing their best to cope, just as I am, even when they are not by my side. Oh, and them being my husband and children, I have to eat some of the blame for their sometimes self centered thinking, but after my husbands "what are we going to do" whine I don't let any of them get away with it any longer.
Please ask your brother to reconsider. IMHO (I'm no expert but know all to well about grieving), you should tell him again that you need him there, and give him a chance to get past, "But big sis is supposed to take care of me". It is probably hard when he is dealing with "I have to care for and/or let go of the person who took care of me", a normal part of grief for adult children, not just young children. He may need the chance to get over himself, so he has no regrets. Sometimes we miss so much when we are grieving, and in retrospect, wish we had pulled closer to our families.
One more time Thank You! for always being here for us all, even when you are under such stress yourself ((((( )))))
Never go faster than your guardian angel can fly!