Debbie and I left Albuquerque after work on a Friday, it’s about a 6 hour drive to Denver. The evening visiting hours were 7:00 – 9:00 pm, we drove into town in time to check into Ronald McDonald House and go straight to Eating Recovery Center. It was late so nobody was working at the reception desk. The place Caitie was placed was an adult unit so 18 years old and over, so she was one of the younger patients in this particular unit. It was locked but not from the inside, Caitie could leave anytime if she so chose to, however we couldn’t just walk in. Girls were coming down into the reception area but we didn’t really know what to do to get in to see her. Eventually a nurse assistant came down into the reception area. She had us fill out confidentiality agreements saying we would not tell people who we saw in the unit, and that we would not take photos of anyone we saw there. She had us sign in and then took us past the locked door and upstairs on an elevator, we got off and waited for them to get Caitie. There were designated areas for visitors and apparently there were many visitors at that time and they were trying to figure out where to put us. We were not allowed in her room, we were not allowed to walk around the unit without an escort. We ended up in a small room with three chairs and a little side table, we could close the door mostly but not all the way. It was an awkward visit. Caitie told us about how different the rules were there and how sad she was that she couldn’t have many of her personal items and mostly upset about having to turn in her phone. However, day two had been better than day one. Here she was allowed to talk with the other people there, they did group therapy together, she also had one on one therapy. There was opportunity for art therapy, music and meditation. She told us that the rules would loosen up over time as she progressed through the program. For now she was in the highest level of treatment and the rules were quite strict. She told us some things that she needed, warm socks, a robe, and I can’t remember but basically that was all. Just like at the Acute hospital she would be eating 6 times per day, meals were timed and if not finished they would supplement with ensure calorie drinks. Here however, she did not have a nurse assistant with her 24/7, so she slept alone in her room. Bathrooms were locked, they could only use them at allotted times. They called the bathroom “the spa” while we were visiting they announced over the speaker that the spa was now open, she hopped up and went. This was probably the thing that was the hardest to accept for Debbie and I, she couldn’t use the bathroom except when they said it was okay. It is odd to see your child in a place where basic freedoms, like going to the bathroom when you feel the need are taken away. I knew she needed to be there, but what if it wasn’t the right place? Why did she need to be punished? She was sick, not a criminal. It was confusing and painful. My sister in law, Debbie, did a good job of holding my hand that weekend, allowing me to process what was going on without telling me what do so, just being there. If there is one thing I have learned over this past year it is that often we don’t have all the answers, and often we don’t have too. It’s just comforting to know someone is there to support you, even if you are screwing it up. On the weekends the visiting hours were a bit odd, they fit them in between meals and therapy sessions. So we could go in the morning from 9:00-10:30, we could return, 1:30-3:00 and again 7:00-9:00. On weekdays they only had the 7-9 pm visiting session. They were quite strict about these hours and there really wasn’t a good plan for getting in and letting them know we arrived. Caitie wasn’t allowed to go outside on outings at this point so we would wait in the lounge until people who were allowed to go out came down, usually a staff member was with them at some point and they would notify upstairs that someone was here to visit. It felt very disorganized but it did somehow happen. Debbie and I stayed through until Monday so I could meet Caitie’s treatment team. It wasn’t until this meeting that I started to feel like we were doing the right thing having her there. I met her one on one counselor,and her dietitian, the doctor was supposed to join us but he didn’t make it. That doesn’t sound like a great meeting, but the counselor met with me alone first and she listened as I told her our story from my point of view. I told her my concerns about the unorganized feel of the facility and my worries about the rules. She sympathized with my frustrations and explained the rules. Caitie had a very difficult job in front of her. Gaining back the weight for one was going to be painful both physically and mentally. Figuring out how to cope and maintain a healthy lifestyle after treatment was going to be a big job but an important one toward her recovery. She talked to me about the nature of eating disorders, and the way they twist and change the person who is suffering with them. She explained that because of this fact freedom in a bathroom just can’t happen. There is too much risk, of purging, or self harm, or whatever else, even if that wasn’t an issue in the past, with the torture of “re-feeding” it very easily can become an issue. I thought that once Caitie just started eating regular food again she would gain the weight back, and that now that she had been to acute she should be able to do that. Unfortunately, that is not the case. Re-feeding is the complete opposite of a diet. Calories must be gradually added in order to continue the weight gain process, activity must be very limited. Even just walks down the street are discouraged during this process. So here she is, struggling just to get a peanut butter sandwich eaten without feeling bloated and stuffed, and they plan to keep upping and upping her calorie intake so she will gain 1-2 lbs per week. As soon as they see a plateau they know to add calories. Weight and numbers were never discussed, they would not give a number of what she needed to gain, or say if she hits this weight she will be good to go home. They believe this did not help the process. Caitie had been an obsessive calorie counter so I believed this to be true in her case. I will say by the time Caitie was in the end stages of treatment she was consuming close to 4000 calories per day. It did not get easier, it was like Thanksgiving meal every single day. One good thing I can say about that is that her hatred of that time and nightmarish remembrance of that experience has been a motivator for her to stay on track in recovery. She has often told me about when she would lie in her bed at night feeling nauseated and stuffed trying to sleep, her back hurting from so much sitting and lack of activity. Uncomfortable, tired from the constant hashing out of feelings and emotions, what felt like a never ending drama. She felt like she would be there forever, that she would suffer like this for the rest of her days, unsure if she could keep going day after day. Something about feeling that desperate, that kind of physical discomfort, and fear of never feeling better, as horrible as it was, it sure has made her grateful to not be in that place today. They teach a lot about mindfulness there. About really living and feeling your moment, she did that and now when she mindfully appreciates being home, with friends, and family. Mindfully appreciates just getting up and using the bathroom whenever she feels the need. It helps to stay on track, it helps to keep Ed away, on the outskirts and not taking control of her again! One thing Caitie’s team told me in our meeting that day was that Eating Recover Center offers a week long family days educational training for the loved ones of their patients. She strongly encouraged my husband and I to attend. They have them every month and she told us it would really be a good idea to try to attend. It seemed a bit excessive, a whole week of training for bringing her home? Good grief how much learning did we need? I couldn’t help but think of the mom I met at the Acute hospital who had talked about not knowing how to parent, then I wondered if a week would be long enough? She actually recommended that our daughter Amanda attend as well, she said Taylor was just under the age limit. We were unable to figure out how to get Amanda there, she would have had to miss a whole week of school and games, although I think it would have been good for her after going. I attended in January with my mom, Chris went by himself in February. It was the only way we could make it work out with the other girls schedules and work and just life. It truly is the best thing we could have done for our ability to help Caitie. Those days were so hard, hearing other families stories, meeting the other parents, hearing the statistics, the heart wrenching facts of this illness. Each day was difficult, I’ll tell more about that another time though. They know what they are doing there, I think the fact that people really don’t understand eating disorders and don’t really know what they are dealing with is part of the problem of successful recovery. There are so many misconceptions and understandings. Eating Recovery Center understands that, and they offer the education needed for successful recovery. It was impressive to say the least. With all the talk in life about terrible heath care, this place is trying to do it right. Trying to empower families to help their loved ones succeed. I’m not sure, but I believe that if Caitie had not gone to this place that we wouldn’t be in the place of recovery we are in today. Caitie was admitted to Acute December 1, 2017, to Eating Recovery Center December 14, 2017 and was released on February 19, 2018. She was there for Christmas, New Years Eve, and Valentines Day. She started in the highest level of inpatient treatment and gradually worked her way into the out patient program. We brought her home and she started the highest level of outpatient treatment at Eating Disorders of New Mexico, and worked her way into what they call IOP, and then discharged on May 17th, 2018. The day before her 20th birthday. From start of treatment to discharge, (she still see’s a counselor there 1 time per week), Caitie spent 6 months of her 19th year of life treating her eating disorder. Everything else was put on hold. School, relationships, her sorority, time with family, church life, all the things a 19 year old girl should be doing she could not do, during that time. Everything else had to stop, so she could focus her fight on this one big demon, the thing that was trying to take her from this earth. All her strength had to go to fight ED off, to get her life back! Again, I can’t seem to stay focused on one topic today, I want to end this blog here though. There is obviously much more to tell about the two and a half months at ERC. I want to tell you what it was like for her to be hospitalized for Christmas, and New Years. I want to tell you about what I learned at family days. About a weekend visit with her best friend. Then a little about treatment here at home and lastly about how things are now, how we cope, how Caitie has picked up her life again. If you don’t already please follow her blog, she writes about her recovery life now and it is very fascinating to read. https://caitiebme1.wixsite.com/firstloveyourself
I want to quickly thank everyone who has given me such wonderful feedback since I started writing this blog. It has been very encouraging. Feel free to share with anyone you think it may benefit, we certainly are not alone in this battle.
Supermom? 