Hi, everyone. I, 46f, take care of my brother, 44m. He's a lifelong cancer survivor, stroke, bedridden, quadriplegic, nonverbal, total self-care deficit, respiratory issues, feeding tube and so on.
When will I know to take this step? When will it be the time? What markers am I looking for? And have I missed them?
Any guidance or advice is welcome, thank you.
Don't know who to turn to. Don't know what to do. And my exhausted mind feels broken.
I take care of my disabled brother full time. We live in a house with our mother and stepfather, but there are days they dont even say hello as they walk by him. He's nothing to them, not even a person.
My brother can't walk, talk, communicate in any way. He has a feeding tube, dysphagia, aspirates, wears diapers and has a catheter. He's contracted from years of neglect, all of his teeth are broken causing immense pain when I have to suction him to prevent him from choking on his saliva. He has no muscle control, I have to move him and hold his head to prevent it from being hyperextended forward or back. We had a hoyer lift, but our mom threw it away. She literally had our stepfather take it to the dump. So I have to manually lift and move him for everything. I've injured my back repeatedly, and God knows the damage I've done to him in just trying to wash him, let alone lift him into the car to go to his appointments.
I've tried to get help. He has Home health come once a month for a catheter change. He cant have PCS because he's too complex, but doesn't qualify for private duty nurse because he's not complex enough.
I dont want to put him on hospice because he has beautiful moments, every day, he's alert and awake, he smiles and enjoys. Putting him into a home would be the same as leaving him with our mother, a path towards neglect and abuse.
I dont know what im doing. I'm falling forward and ever day its something else, and I Google and try to figure it out and im drowning. I'm drowning.
I cant leave him, not more than a few minutes, ever. He has seizures and I've got him on a anti-seizure medication for the first time in his life and he's reacting to it paradoxically, as he does every other medication. I sleep with a hand on his arm because they are silent sometimes and im scared I'll miss it.
I have nothing and no one. What am I supposed to do.