My biggest worry about son Jim is what will happen to him after we parents die. My husband and I have done everything legally and fiscally possible to prepare. Our capable daughter will manage his trust and oversee her brother’s care, but she lives far away. Roger and I are long in the tooth; we must face facts. I have heard stories of disastrous relapses after supportive parents aren’t around.
My mission is to get Jim and others like him situated in supportive housing. Thankfully in Minnesota, there are a few lovely, publicly funded places that provide full services for people with serious mental illnesses, and more are being built. The conundrum is that there are not nearly enough spots for people who are unhoused, who generally come ahead of people like Jim who have apartments and supportive parents. I do not subscribe to the politics of scarcity that pit people against each other.
People like Jim also need supported housing, especially after parents die, not just a lonely apartment with sparse assistance. A large group of families and I toured excellent supportive housing programs and are advocating for more opportunities. I believe Jim would have died this summer when he got pneumonia if he had been in his solitary apartment. A mental health worker had just met with him and thought he was doing the best ever. She wouldn’t see him for three more weeks, long after he had become so ill he couldn’t walk or talk coherently. Luckily, Jim was with us parents when he became ill. He rarely stays in his lonely apartment. There is growing research highlighting the negative effects of loneliness, which too often accompanies schizophrenia.
A silver lining of Jim’s hospital stay for pneumonia is that they recommended supported housing. He and I toured a site the families and I had toured earlier. Jim likes it. He’s on the waiting list. My fingers are crossed, and I hope and pray it will work out for our family. I will continue to advocate for others, as well, and am sure I will find a new mission. Nothing is really done for families like ours, is it?
