The Lake House

 In the Spring of 2022, as we waited to get in with the new psychiatrist, our life spiraled. Teale’s moods were so unpredictable, that every aspect of our days were controlled by her. I was fearful of the explosive behavior, scared that by myself, I wouldn’t be able to stay safe. Teale’s weight had increased much also as the doctors added more medications, to try and stabilize her moods. She was so much bigger than I and, in a rage, ruthless. The PTSD was wrecking me, every time I heard a change in her voice, or saw it in her expressions, fear rose in me. I lived in constant uncertainty. On top of that, Mark was in a tough career at that time. He was trying to keep his head above water at work, while we were drowning at home. His job was always stressful, but had turned toxic, with a new regional manager being appointed. His office was struggling, most of the employees felt unappreciated, overwhelmed and deeply unhappy. The shift from a difficult job, to the feelings of complete despair, was felt throughout the office. Covid had been difficult and the hope that the new regional manager would help the office rise up, soon faded. As time passed, it became obvious that she would not help the office heal, but would create such division, frustration and fear, that many would leave. The cycle of employees leaving, meant overextended workers would never “catch up.” The ones that stayed, just got more to do, hiring replacements was tedious, and training them was slow. New hires quit often, with no ties to the job, they felt how unhealthy the work environment was, and left. Mark was in such an awful place, trying to lift me and help our family survive, while his work life just got worse. The increase of Teale’s explosive behavior was brutal at home. I was thoroughly exhausted mentally and physically. I was getting up with Teale, all hours of the night, her sleep sporadic, her mood manic. It all seemed hopeless and endless, making me question God and why our family was put through so much pain. Mark and my love was strong, but, without hope, I wasn’t sure if any of us would survive this. I knew I was struggling mentally, I knew my mental health was in danger of going so low, it might be tough to get me back. I had very little joy, and although I pretended to keep my head up, inside, it all hurt deeply. 

My Birthday would be the hope we needed. A girlfriend owned a house on a local lake that her family rented out for extra income. She hadn’t rented it out for a few days around my Birthday and offered it to Mark and I as a gift. The timing and the location perfect, it was close to Teale’s program, so we could drive her and have the days free. I’ve always had a tough time with the five years and this one was a big one. I was turning 55. At the lake, I could invite friends and and family to celebrate with me. We needed this break from our normal life. It wasn’t easy to plan and do it, but, in the end, this gift would change Teale’s sleep pattern, for the better. Suddenly, at the lake, she was sleeping all night. I had seen this before, an occasional trip, could trigger an interruption in bad habits at home. I had been questioning if Teale’s obsession with her iPad, was the cause of the sporadic sleep schedule? Sadly, deep fear, had paralyzed me from making a move forward on this. At this time in our life, we met weekly with Teale’s PCP and a psychologist, in her PCP office. To say they were worried about Mark and my mental health while dealing with Teale’s mental break, would be a gross understatement. Video conferencing weekly, to discuss Teale, had become a lifeline. We even had a meeting set up from the lake house. I shared my theory, that Teale was sleeping, because we had not brought her iPad with us. This theory had always been in the back of my mind on vacations where she slept in. Maybe, her getting up was because she wanted to get on her iPad? The problem was, I had no idea how to change this at home. I couldn’t image the rages, the bullying she would use to get her way at home, if, we somehow limited her iPad in the morning? The discussion was insightful with her doctors and with Mark. Mark had never seen the connection between us not bringing her iPad on vacations and Teale sleeping differently. Talking out that we had broken the cycle on this short trip, (because we didn’t have her iPad and she had slept all night) helped us to brainstorm a plan for home. After finishing the video chat with the doctors, Mark and I would talk incessantly. We would weigh the pros and cons, the risks and the advantages, if only we could develop a way, to stop this vicious cycle. Because I was the one that would get up with her, my fear was higher. If we took away the iPad and told her she couldn’t have it in the middle of the night, the rages could be very violent and dangerous. Her screaming or hurting me would make me want to give it to her, and then where would we be? If we were to do this, we would need to stick to it, not give in to her, no matter what. I knew this was our chance. Mark saw the benefits, I previously had had a tough time explaining it all to him. The lake house trip had changed her sleep cycle back to a normal, healthy schedule. Plus, I felt a million times better, because I was getting a normal night’s sleep too. I was able to stay up in the evenings with Mark, regaining some balance in my life. Teale went to bed early, and instead of me also going to bed exhausted, I was staying up with Mark. This special time together, had been a huge loss. For over a year and a half, Teale’s sleep schedule had been so messed up, I barely saw Mark after work. We ate dinner and then, both Teale and I, went to bed. Neither of us were able to stay awake in the evenings. I was missing my husband, but, to help us all, it had to be me that got up with Teale. Mark had to go to work, to care for us, financially. We couldn’t afford him not getting sleep. 

When we got home from the lake, on the very first night, Mark decided he was going to take the leap. We had thought out a plan to hide the iPad, and explain to Teale that she would not be allowed to use it before her program. It was terrifying, especially the first night. I wasn’t sure how I was going to get her to go back to bed and not attack me. It was the middle of the night and she thought she could just go on her iPad but I had to stick to the plan. There was no going back now…

I would love to report that it was easy, but it wasn’t. There were violent and scary nights, when she woke up and demanded her iPad. I was determined to stick to it, and after maybe just a week or so, we saw improvements. She started sleeping a normal schedule. She knew that we weren’t going to give her the iPad, if she woke up at 2 o’clock in the morning and there was really nothing to do, but go back to bed. There were kinks to work out. We had to figure out what the carrot was going to be on the weekends. No iPad until after the family grocery shopping was done on Saturday. No iPad, until after we went to church on Sunday. I was so proud of us. We had done it, together. The doctors had been no help. They just threw more medication at us, to try and get her to sleep longer. The medications had been a problem, many times they would snow her the next day. Her sleep wasn’t better on medication, and she was even more crabby. 

Mark and I had been strong throughout the process of not allowing Teale her iPad. It was very satisfying, seeing the changes helping to return her schedule to a normal one. Almost 2 years later, and we continue to use this system. Sometimes we have exceptions, but because she is used to the schedule as is, it doesn’t seem to throw her back into the old habits. 

One year and a half, of waking up as early as 1:00 AM, just so Teale could go on her iPad. It was such an unhealthy, stressful time. I am forever, grateful for my girlfriend, who gave us the break at the lake house, that ultimately changed everything. 

Months

Months of unsettled, mental illness, would plague Teale… Months of abuse, violence, fear for myself and Mark. Teale would control every decision and move we made in life. She would struggle in herself. Her sleep would be sporadic, exhausting both her and us as her caregivers. She would wake anytime between 1:00 AM and 4:00 AM. I would start to look at 4:00 AM as sleeping in. With her sleep so off, her moods just became more and more sporadic. The antipsychotic she was on, was no longer working to stabilize her mental illness. Her doctor knew nothing about how to help stabilize her. We were stuck in a horrible position. The psychiatrist we had been working with, in Teale’s doctor’s office, had moved on, and nobody had been hired. We were alone. Her doctor tried to support us, and tweak medication, but, because we had exhausted her current antipsychotic medication, there wasn’t anywhere to go. She had failed at many antipsychotics over the years. We needed, what they were referring to, as a last resort, antipsychotic. This medication was strictly controlled, and only certain psychiatrist had certifications to administer it. It could be deadly to people, because it would drop their white blood cell count very low. Blood draws would be required every week for six months, after she was at a therapeutic level. If her body was affected by the medication negatively, we could not continue. First, we need to get in with the psychiatrist that could prescribe it. That would take many months…

As we waited for paperwork to go through, Teale would become more and more unstable. She would be violent towards us, if something set her off. Her rage, intense and scary. I would be at risk constantly. There was no telling what would set her off, something simple, or unknown to Mark and I. The rages could result in hours of lost time, trying to get her back, or waiting her out. She not only would try to hurt us and cause damage anyway she could, but she also was biting and hitting herself. It was a heartbreaking, and terrifying, eight months. The psychiatrist had not gotten back to us, and we were stuck in a holding pattern. We sadly assumed, she wasn’t getting back to us because she did not have room for another patient. We would find out Teale’s Care Manager, who was supposed to submit specific documentation, had not done it. All of us endured months of agony, only to find out, after the Care Manager quit her job, that the application had not been submitted at all. Let me reiterate this, the Care Manager had done nothing! We would also find out she had not submitted the paperwork she needed to do for Teale to go to camp. Camp Haccamo is something Teale looks forward to every year! Us as a couple, and a family, look forward to the break from Teale’s care. For five nights, Teale goes to a rotary camp nearby, free of cost, thanks to donations. The camp was developed for children and adults with special needs, to have a typical overnight camp experience with peers of “like abilities.” The paperwork was long overdue, and I was devastated to learn she might not be able to go. How could somebody who acted like they cared about us, do such heinous things? The Care Manager knew we were suffering greatly, and needed to get in with the psychiatrist, to possibly, hopefully, stabilize Teale. I talked with her constantly about the agonizing wait, not knowing, that it was her, that was causing the delay. When our care manager quit, they had nobody to replace her, so the supervisor would contact me. This is how I found out, that the paperwork was not done. Apparently, she hadn’t done her job for many people. I would have to jump through hoops to catch up on the paperwork that Camp Haccamo would need, for Teale to go. I would beg for a spot for Teale at camp, even though the deadline had passed. Explaining how I thought our care manager had submitted the paperwork, I asked her to, they would take Teale. One hurdle cleared, but we would still need to submit paperwork to the Arc of Monroe. Teale desperately, needed to get an appointment with the psychiatrist, that was housed there. 

The wait would be months… 

Almond Milk, the final chapter

 Mark would tell me about the rage slowly, over several hours and several days. Details would hit him differently, and at moments, he didn’t expect. The kind people who would offer care and support would suddenly come to mind. There were many, friends and strangers offering to buy Teale something, I’m sure they felt paralyzed and hoped that could help. The pharmacy technician who sat with Teale and the other staff who checked in. Mark saw one woman from a far, making Mark tear up as he shared the story, she is a kind, gentle soul. Teale loved seeing her weekly. She didn’t come close, but caught Mark’s eye. I’m not sure if he was heartbroken for her, himself, or for Teale. Seeing Teale at her worst, can change a person’s perspective of her. It’s scary and sad. You worry if she’s ruined relationships when others see it. We know, she’s just in a bad moment. We know she’ll come back to us and eventually her joy will too. He tells me of the fear of having people walk by her, without concern for their own safety, and the police officer that came. I am thankful it was Mark and not me, with her. I know I would have had trouble sharing the right information, in a stressful situation, with a police officer. With Mark’s size and demeanor, plus his being a man, I’ve seen plenty of people give him more respect, than they give to me, when it comes to Teale’s rages. I’m smaller than her, and admittedly I suffer from PTSD when these rages kick in. I’m stoic on the outside, but inside, I’m terrified. My fear of a police officer getting involved, may have literally paralyzed me. I may have struggled to ask him to stay back and out of the situation. Teale can’t be reasoned with in a rage. It must just run the course. Our reactions to her, are very flat, we stay calm and stoic because we’ve learned this is the best and fastest way to “get her back.” Talking to her, reasoning, threatening, scolding, none of that work in the moment. To an outsider, it most likely looks like we are giving in, letting her get her way and act this way. Our skin is tough and for the most part, we try to not care what anyone thinks. It’s not an easy situation to be in. Our hearts are truly breaking when we see Teale in a rage, out of control and unable to calm. But, we’ve learned, we must just wait her out. I pray my way through, I’m pretty sure Mark does too. I also keep reminding myself this is not who she is and that none of it is her fault. Doctors messed up at her birth, she was breach, sat in meconium, had no pulse for 8 minutes when born and suffered severe brain damage. Her mood disorders are a direct result. Mark and I both believe she may have chosen this path, her soul came to us to teach. We have contradicting feelings on her birth. We know the doctors could have done an emergency cesarean section operation and she may have had a “normal life” and we believe her soul chose this journey for all of us. I believe in an afterlife, I believe in a God and I believe someday, I will know the truth to all this. It sustains me in the tough moments to not lash out at her, to stay calm, knowing it is not her fault and that God trusted me to love and care for her. I’m not perfect, I’ve lost it in moments of her mental breaks. Staying calm and not lashing out, is what helps my soul, the most. It gives me peace to know I’m loving her, through these most difficult moments. I process it all slowly, through writing and talking, after a rage has happened. Mark tends to go into himself, he will talk when asked but, he may not offer information, without encouragement. 

After this rage, we knew we needed help. We both knew it was a turning point in our lives and unless we changed the course, it was going to continue to get worse.