This post was hard to come up with. I wasn’t sure how to put in to words the emotions of what has been going on. I’m not even sure if I truly understand them. In the last year, Phoebe graduated from her program, moved out of her house of 23 years, moved in to a mobile home, moved out of a mobile home, moved in to my house with her Nana and I, tried an AFC home, and then finally got her own apartment. To say that’s overwhelming is an understatement. One small change for most people can be debilitating. Throw in a whole slew of impairments and we have ourselves one walking time-bomb. How did I not see that? I think I thought “ripping the band-aid” would work best. Boy, was I wrong.

Organizing someone’s care 24/7 is exhausting—it’s like having another part-time job, especially doing it all by myself. It’s overwhelming at times to remember it all, and to make that many decisions each week. (Especially when you’re 55 years-old) Oh, and I also have a job that I work 40 hours a week at. Phoebe has had no less than 20 appointments in the last 6 months. We have adjusted, added, and taken away meds.

Phoebe and I rented an apartment and got about 70% of her time at the apartment paid for. The financial burden on funding 24/7 care for Phoebe is nearly impossible. I’d literally have to work 4 jobs, or win the lottery. This truly seems the only solution at this time, while I fill in the gaps with having her myself. I have yet to find an AFC that works for the “Phoebes” of the world. She’s just her own category of special needs. She has been since day 1. You can’t put 2 different types of disabilities together in an AFC and hope for the best. It just doesn’t work. This is the solution….for now.

I hired a group of ladies that are amazing at caregiving and understanding Phoebe’s differences. She is unpredictable as most people with an emotional impairment are. In the meantime, we have added quite a few more medications to ease the behavioral issues we are seeing. At the apartment, I reverted back to visual schedules and sticker charts for rewards. Back to the basics was all I could think to do to help. I’m sure that will change too.

To say this has been a learning experience is putting it mildly. We both have endured a lot this year, and finding the right fit is still a work in progress.