In Part 2 I left off with Chris being admitted to inpatient care, not knowing that this was the last place he would receive OCD specific treatment. I talked about the relief I felt at the ER, how great the staff was and how I had a renewed sense of hope. The staff was great until the shift change. At that point it was like we didn’t exist. We were waiting for transport from the ER to the hospital where Chris would be admitted (as required) and as the hours ticked by, I became increasingly more frustrated and angry.
I won’t go into too much detail as it really isn’t that relevant, but by the time Chris was picked up it was 9pm, a full 8 hours after we had arrived. As Chris was wheeled out to the ambulance, I had a teary walk to my car. The reality of the situation was sinking in, and there were also tears of relief. Finally, professionals would be caring for Chris, he was about to get help and start to get better, or so I thought. I drove home to pack a bag with clothes and allowed personal care items. There are very specific rules for inpatient care, rules to keep the patient and the staff safe. While Chris was not a danger to himself or others, it didn’t matter, we had to follow the rules.
It was surreal, standing over the trashcan and cutting the drawstring out of his shorts and pants before I could pack them. I packed a couple of books at his request and felt the need to include more. I grabbed an index card and quickly wrote how much Syd and I loved him and how much we missed him. I also grabbed a picture Sydney had drawn and put it into the suitcase as well. I cried for nearly the full drive, 2 hours round trip. I knew I wouldn’t be able to see Chris when I pulled up to the entrance of the hospital, so I was completely surprised when my phone rang and it was him. Residents were allowed to use the phone whenever they wanted, though generally not this late, but considering the timing of his admission, the night nurse made an exception. Chris didn’t realize I was outside, dropping off his things. He was exhausted, scared and feeling alone. We chatted quickly, I reassured him that his parents and I would visit tomorrow, I dropped off his suitcase with the night nurse and headed home. I drove in silence, trying to process how we ended up here, how quickly his OCD had escalated and wondered how our almost 5 year old daughter was going to cope with this.
The next morning I had an appointment with Sydney’s psychologist to discuss how I could minimize the impact all of this would have on Sydney and her anxiety. The psychologist and I went over the events of the last week, how Sydney had been responding, and we came up with a game plan to keep things moving in the right direction. At that visit, Sydney’s psychologist who is very familiar with OCD and treats it in children, highly recommended the two OCD specialists I had left messages for. I found her recommendation reassuring, though I had yet to hear back from one of the specialists and the other was about to go out on maternity leave. I left that appointment feeling encouraged and ready to visit Chris at the inpatient facility. I was meeting Chris’s parents there and I was certain that no matter how Chris was, he was in the right place. As I look back on it, I now realize that Sydney’s therapist had hinted at the possibility of Chris not being in the right place, but my focus in that moment was on Sydney, so I didn’t catch it at the time.
I met Chris’s parents, Cathie and Bill, at the inpatient facility. We were all nervous and for Cathie and Bill the realization that Chris’s OCD had escalated to this point was a real shock. Chris had hidden what he was going through for so long and without living with him and seeing his day to day, they had no way of knowing how bad it had gotten. We entered the lobby and were informed that only one person could visit at a time. Cathie went in first and Bill and I sat in the lobby discussing the little bit that I had learned about OCD in the last week. While we sat there, I watched Bill repeatedly go over to the hand sanitizer – and I saw it for the first time – a glimpse of possible OCD tendencies. Cathie came out and at first seemed ok as Bill took her place and went in to see Chris. As soon as the door closed, Cathie looked at me and exclaimed, “This is NOT good at all. He is miserable. He wants to come home. He is so anxious.” My immediate reaction was not warm. My immediate reaction was one of resistance. It didn’t matter, Chris needed help and here they could help him. I could not help him, so he had to be here.
It was my time to visit. Chris was sitting in a room, by himself, with a lunch tray in front of him, extremely anxious. He started to explain how the psychologist of the facility told Chris point blank that inpatient care was not the right place for someone with OCD. They weren’t trained to treat OCD. They were trained to help people stabilize and to no longer be a threat to themselves. Chris’s medication was going to take up to 12 weeks to reach therapeutic doses in his body and there was no rushing that. So essentially, he was as stable as he could get right now. With my permission, Chris would be discharged. Immediately my attitude changed. Chris explained how the well intended nurse had placed his lunch tray on top of the trash can for when Chris was ready for it. Chris had to remind her that he is terrified of contamination and asked her to get him a new meal. I knew in that moment, he needed to come home.
I asked to speak to the psychologist – our first savior – who explained why inpatient was not the right place for Chris and how we could try to manage with adavan while the SSRI built up in his system over the next 11 weeks. The doctor also explained that he had originally tried to deny Chris’s admission as he knew they were not going to be able to help him. This was news to us as the ER counselor stated that the admitting psychiatrist suggested we first make sure insurance would cover Chris’s stay, conveniently leaving out this other, more pertinent detail.
It was settled, we started the discharge process. At that point the nurses all took turns telling me how they new inpatient wasn’t the right place for someone with OCD, especially one who was not in danger of harming himself. We could’ve saved 24 hours of distress and grief if any of the medical staff outside of the facility had echoed these sentiments, but really, this is just a small indicator of how little people truly know about Obsessive Compulsive Disorder.
Chris’s OCD showed up in true fashion as we waited for the discharge process to be completed. First, he wavered, wondering if coming home was the right decision. Chris was petrified of contaminating Sydney with whatever illnesses his OCD believed he had contracted from his fellow patients and the staff. He was terrified to touch his belongings because of something someone may have come in contact with before touching his things. His hands were raw from washing, and one of the nurse’s offered to show Chris the proper way to was his hands without going to excess. OCD had literally retrained Chris to use scalding hot water for well over a minute while washing all the way up to his elbows. I was thankful for the nurse who offered this, unaware that he would see a red mark on the door frame during the lesson, think that his shoulder may have brushed what his OCD thought could have been dried blood, and that he would obsess over this for the next few days.
The entire hour drive home, Chris was in agony, wrought with anxiety, deep in despair. He didn’t feel like he could be near Sydney, it was too terrifying; the OCD was telling him he was being callous and risking her life by being near her. After a lot of discussion, we decided that Chris needed to stay at his parent’s house, thankfully just a few minutes up the road. His bag was already packed, his parents had the air mattress, so before I had to pick Sydney up from daycare, I brought him to their house and got him settled as best I could. On my short drive home I was numb, not able to process what was happening. As I pulled up to our garage my phone rang, it was the OCD specialist. Dr B, we will call her, reiterated that inpatient care was not the right place for Chris and that she thankfully had one spot available for a new patient. We scheduled Chris’s initial appointment for that Friday.
Over the next few days I would get Sydney off to daycare and then head to my in-laws to help take care of Chris. First on my list was getting an appointment with his psychiatrist to discuss Chris’s current meds and the possibility of making some changes. Next, the new patient forms for Dr B. Included were a couple of assessments that evaluated Chris’s level of depression among other things. I was the scribe, reading the questions to Chris and notating his answers. It was a sobering experience to realize how depressed Chris was at the time. He had lost all interest in things that previously brought him joy because OCD had taken away his life. Chris was living in a very small bubble, unable to sleep through the night, only able to eat shakes prepared for him, not able to be near his daughter, unable to do pretty much anything without paralyzing levels of anxiety and fear.
Before I get to the description of Chris’s first appointment, I want to share a little more about how I was handling all of this. I believe in transparency and in authenticity. I knew that we were going to make it through this. I knew that we would find the right help for Chris, whatever that was. I knew that Sydney was going to be ok and that we would once again be a happy and united family. While I was optimistic, I was dealing with a lot of stress. I used food to cope and gained close to 20 lbs in 2 months. I wasn’t sleeping well, I was binge watching a lot of tv and I was mindlessly scrolling social media late into the night. I sometimes yelled at Chris, frustrated beyond belief and feeling completely helpless when he wouldn’t (really couldn’t) stop the compulsions.
I found myself retreating, screening my calls, waiting to respond to messages, and isolating myself whenever I wasn’t caring for Chris or Sydney. Despite all of this, I never lost hope. I was very aware of the behaviors I was using to cope and I knew that they needed to be short term so as not to create long term issues (I will share how I broke out of these stress induced habits in other posts). I gave myself grace as I knew I was mourning the life we once knew and that I was processing all of the new information we were learning each day about life with OCD.
It is ok to not be ok. It is ok to withdraw, to retreat in order to protect your nearly depleted resources. It is important though, to keep the door open and to not completely shut others out. It is ok to need help. It is ok to need support. It is ok to need to vent. It is ok to need a break. I am so deeply grateful for the family and friends that were there for us (and continue to be) while still respecting our need for privacy and space. Thank you all from the bottom of my heart.
On Friday, I packed Chris into the car and we drove the 20 minutes to Dr B’s office. The fear and anxiety Chris was experiencing was so overwhelming that he struggled to walk down the street without being guided. He struggled to ascend the stairs, certain that some hidden contamination danger was present on the staircase itself. Once at the top of the stairs, convinced he had stepped on something, Chris begged me to go back down the chairs and check to see what was there (there wasn’t anything of concern). When we entered Dr. B’s office, Chris couldn’t sit down on her couch. He stood, in the center of the room for nearly two hours, with his head down, eyes closed and holding his aquafor covered hands up in front of him as though he were scrubbed in and ready for surgery. Dr. B explained what Exposure and Response Prevention therapy (ERP) would be like, she gave us our options, and most importantly, she without a doubt new exactly what Chris was experiencing and how to help him through it.
I knew at that moment that we had found the right person to help us. Dr. B was not only an expert on ERP, she had trained under the best, Dr. Foa, the woman who literally wrote the manual on this type of evidence based therapy. In addition, Dr. B’s approach and personality seemed to be the perfect fit for ours. In that initial session, Dr. B recommended a book that would be a huge resource for us, Freedom From Obsessive Compulsive Disorder by Dr Jonathan Grayson. Dr. B was a godsend, such a good match, with so much compassion, so much understanding and so much experience. Chris’s first official session would be the following Tuesday and in the meantime, she assigned Chris his first homework – he was to return home and be with us, anxiety, fear, compulsions and all.
Coming up in one of my next posts will be a detailed look at Exposure and Response Prevention (ERP) therapy, the facts and the reality of what it has been like taking this on as a family. Until next time, thank you for reading and remember – inch by inch you can do anything.
