So, as I got older and came to accept that Angie would need life-long care and that I wasn’t going to be able to provide that care by myself, St. Joseph Home was the one place I would consider and the only full-care facility where I put her name on the waiting list. Know that I did go visit other places, but none of them gave me the same feeling of peace that St. Joseph Home gave me. So, we waited for years. If I remember correctly it was eleven years. During that time, she finally got a waiver from the State of Ohio, which meant that she would have enough money from the state to pay for her care whether it be in my home, in a certified care giver’s home or in an approved facility.
The first benefit Angie received were visits by home health care aides twice a day. This was absolutely a great help. An aide would come in the morning and help get her up and ready for going to an adult day workshop and another aid would come at 4:00 in the afternoon to help get her bathed and settled for the evening. We had help now with lifting her. By this time, my parents had passed and my back was too weak to really pick her up by myself, so I always needed to arrange for help. At one point, one of our favorite aides offered to take Angie into her own home, so she went about getting certified by the state and setting up a place for Angie. It seemed like a good idea. It was a chance for Angie to have more of her own life. And she expressed the desire to try it, so she did with support from me. It was working really well for a couple of years when St. Joseph Home called and told me there was a place for Angie. I still remember the day when her aide Deanna, begged me not to move Angie, not to take Angie away from her. I agonized over the decision and in the end, decided that Angie could stay with Deanna.
This arrangement worked very well for Angie for several years. Deanna and her family were wonderful with Angie and included her in almost everything they did. I completely trusted Deanna and I knew she loved her. I could stop by anytime and felt welcomed as if I were family. They invited us to cookouts and family birthday parties. We invited them to our house too. For Angie’s thirtieth birthday they organized a party in a restaurant with a dance floor and dressed her in sparkles and a rhinestone crown. She loved it! Deanna said she cried when she went to get her ready for bed. She wanted to keep her sequence covered top on forever. She was so very happy and well taken care of at that time and I felt so positive about how her situation, I actually applied for my dream job.
Ever since my university experience in a study abroad program, I had hoped to work overseas as a teacher, but after Angie was born I had given up on the dream. I had never imagined that it would be possible. But with confidence that Deanna would do the best she could for Angie, I decided to apply. I was awarded an offer to become an English Language Fellowship from the U.S. State Department to teach English as a foreign language in Turkey for 10 months. Taking this job would mean I would be gone for a little over eleven months. Since everything was going well with Angie’s living arrangements, I decided to take the assignment. And everything went perfectly.
It wasn’t until a couple of years later that the situation in Deanna’s house fell apart. We had a huge winter storm which caused a power outage that lasted for several days. When Deanna left to get supplies, she left her 17-year-old son with Angie for a half hour or forty-five minutes. In the course of chatting with Angie’s caseworker, I just happened to mention that and that set off a complete change of course for Angie’s life.
Understand that when working with the county caseworkers, they will take everything very seriously. Since her son wasn’t certified to stay with Angie, her caseworker set in motion an emergency move for Angie. The county had an “expert” home-health-care provider named Evelyn, who would take her into her house with three other young adults with very special needs. This moved proved to be disastrous and life-changing for my daughter.
When I think back to this time in Angie’s life, I can still see the utter shock on her face. My first problem was that at that time I was living in my parent’s old home and it was not designed for a wheelchair. For me, it was extremely difficult to get her in the house and once inside there was no way to get her out of the living room. There was really no room to set up a bed for what I had hoped would have been a temporary situation. So, I went to work advising and checking in frequently with the new “expert” caregiver. Since her caseworker and the State of Ohio were basically in control, they could decide where she should be placed in this “emergency.”
Since she couldn’t live with me, I’d visit often and ask heaps of questions and Evelyn and her daughter would lie to me about how well she was doing. They would tell me unbelievable stories about well she was even eating her vegetables (she always had fought me over eating veggies). But I could see she wasn’t eating well since she was losing weight, so I bought them Ensure to give her. I could also see they weren’t brushing her teeth well and I took them and Angie to the dentist. I was trying to make the best of this problematic situation and reporting to her caseworker. What I was doing wasn’t enough because of what I couldn’t see. There was a bed sore developing on her bottom from poor positioning, weight loss and maybe even from soiled depends. Eventually, Evelyn finally told me there was a big problem and when she showed me a huge 3-inch pressure sore which had been developing, I grabbed Angie and immediately got her into my car and to the emergency room.
This wound was so serious that it had become life-threatening. After a few days in the hospital, she was transferred to a long-term care facility, Daniel Drake Center for Post-Acute Care in Cincinnati, where she would remain for about 3 months. During those three months, she would be repositioned every two hours and her wound would get repacked several times a day. In addition to wound care, she was given a permanent G-tube (a tube that is surgically placed into the stomach with a port sticking off her belly). This feeding tube saved her life and changed her life. The staff at Drake were wonderful. They took perfect care of my daughter and they were fun too.
Angie was there during the Halloween season so I decorated her room and her bed. I also bought her a big plastic spider, which we would put under her covers to startle the nurses or doctors. There was one nurse who was especially afraid of spiders and when she saw the spider she must have screamed. And Angie must have laughed and laughed. We heard that story from everyone. This was a sure sign Angie was feeling better because she was playful again, having fun and being funny. There was a light at the end of the tunnel.
When she was released from the long-term-care facility, she was released back to Deanna and Evelyn was in trouble with the county. I was relieved and I had learned a lot about dealing with individual caseworkers and their supervisors, as well as the Social Services system. I understood that the county had been highly criticized for a foster home that had let a little boy die recently, but even with that Angie’s caseworker and her supervisor refused to believe that their “Expert” was neglecting my daughter. And in the end, I hadn’t fought hard enough to save her from this life-threatening and life-changing nightmare. I learned to trust my gut feelings and fight the system when the system is wrong. I also acknowledge that I was too polite.