I’m really frustrated and need suggestions with how to express my needs to my brother, who has paranoid schizophrenia.
He was diagnosed 22 years ago. We worked together as a family through the crisis’ of getting diagnosed (a nightmare!), getting meds, staying on meds, not self medicating, getting SSi, etc.
Thankfully, my brother has done very well - on meds, consistent care, not self medicating - for 15 years. He no longer sleeps all day. His affect can be pretty animated. He has a great sense of humor and is now able to hold entire conversations and stay focused. And he can read books - that was a huge success for him as he loves to read.
Here’s my issue: He hasn’t done anything to socialize, attempt a part time job or volunteer to get out with other people in this 15 years.
He ‘helps’ my mom clean his house, which really means she does 95% of it. He ‘helps’ my dad do maintenance, which again means he does very little. In my opinion, my parents have created an unrealistic environment for him… he lives in his own house (there is a budget in place I’m told but they financially support him for the most part), he doesn’t clean it or upkeep it, he eats with my parents, he shops on line, he goes on family vacations with all of us and I feel like he ‘rules’ everything.
Trips, get togethers, vacations, holidays, birthdays… it’s around his needs and he plans nothing, prepares nothing and cleans up after nothing! He monopolizes conversations with bits of trivia that are irrelevent.
There are certain foods and ways to prepare food that he won’t eat, so we accomodate him always. He says that his illness causes him to have no motivation (I understand it effects motivation… is this something he can work on, though? He’s motivated to do only things he wants to do. It’s like dealing with a child without any consequences!), so he rarely helps with anything. Dinner’s done, he pushes from the table and goes to the couch.
I would like to visit with my parents without him always being around. I would like to go on a trip without discussing his sleeping needs, his activity needs, and his obsession with food.
My parents are getting older. There has been no discussion with what happens next… what’s the plan for my brother when they are unable to keep up with this level of ‘care’ for him? I’m so frustrated that they have not included me in any of these talks. And I’m feeling guilty and angry because I don’t want to keep up this level of caregiving that they are giving to my brother.
I support him, love him and want to understand him better but I’m not willing to give up my later life - having adult children, grandchildren and traveling with my husband - because my brother is ill and, in my opinion, acts as if the rest of us should work to make any aspect of his life, within our power, less hard because the voices have made (and sometimes still do) much of his life extremely difficult.
And now that my children are becoming adults, I really don’t want them to fall into this expectation of his… I’m ready to push back a bit… Please offer suggestions…
Am I being too harsh? How can I communicate my needs to my brother? Have any of you had to deal with the ‘what comes next’ conversations? Thank you so much.