Last week, I blogged about some good news: Ben, my son, was discharged from the hospital and is getting his life back. He went back to his job, is taking his meds, signed up for fall college classes, and will begin his outpatient program soon. So – some pieces are in place and that sudden lack of structure that triggered his schizophrenia relapse two months ago is gone.
So far so good. But here’s the thing. We made a discharge plan that included his “visiting” the family for a couple of weeks while we get the plan cemented, so right now I’m in charge of schedules, medication supervision, and transportation. And yes, I have a “real” job so I can’t do this forever. But I am reminded of how much better Ben does when he has a supportive community around him.
Family Caretakers of Adult Children Make Tough Decisions
The question remains: How do we do this? How much caregiving is too much when your “child” is almost 30 years old?
He’s getting a little sick of Mommy reminding him to brush his teeth, though – and the dynamic won’t be great for long. Plus, there’s a business trip coming up for us – we won’t be home – and Ben has to be back into his program by then.
So – checking out the options.
I remember clearly the first time I had to make the decision to make Ben homeless. 2003, the year of five hospitalizations. Finally balanced on clozapine, Ben could no longer stay in the hospital – but I knew that, if discharged to my care, I could never get him into the system that could manage his care when I could not. He needed his Social Security, Medicaid, Medicare – and, ideally, a bed in a group home. I made the decision then to be his mother, not his social worker – and it was so difficult. The guilt I felt!
I will never forget the social worker who came up to me after the meeting and said something unexpected that guides me to this day: “Randye, I know that was so hard for you to do – but I applaud your decision. Ben will get into a group home and learn how to grow up. Living with parents, he’d probably never do it. Do you know how many patients we get in here, in their forties or fifties, who still live with their parents and never learned to take care of themselves?”
I took comfort in her words and treasure them now. The reason Ben has accomplished so much since 2003 is due to the fact that he had his own life – albeit guided by the family of caretakers in his group home. Now, in a new “independent living” situation, how do we recreate what worked before? How to guide him from the wings? That’s the challenge, and our goal. We are building a new foundation – I hope.