3.8.20: Waiting to Exhale

Hours after I listed all the things that had happened in the previous week in my last post, Kay came home from school telling me, “Mom, I’ve been feeling suicidal for the past couple weeks.”

She came in for a big, long hug and cried a little bit. I thanked her for telling me, asked her if there was anything I could do, and assured her that these feelings would pass. She assured me that she wasn’t going to do anything about the feelings, but the thoughts and feelings just wouldn’t leave her alone.

I felt relieved.

That felt shocking.

I felt relieved because she was able to name the feeling and about it.

I felt relieved because she was willing and able to bring those dark feelings and thoughts into the light and not let them fester in secret.

I felt relieved because she trusted me in that moment to keep her safe. Even if all the other moments she isn’t sure if she trusts me or wants to trust me, right then, she did. And that moment was a good moment for trust to pop up.

I felt relieved because it created a context for what had been going on with her. It didn’t excuse it or make it ok, but it did create a context that helped me make sense of things. A little.

I felt relieved while I felt terrified for her.

Having a child who is feeling actively suicidal is tough. Knowing that she has to feel this pain and there is no way I can take it away is hard. Giving her the space to feel her feelings without trying to change them or interfere in them might be one of the biggest challenges of my life as a mom.

We have safety precautions in place. We are watchful. We are checking in. We are not treating this lightly. And we are reminding her that these feelings aren’t going to last forever. And feelings, no matter how strong, don’t control actions.

And we are waiting until this storm runs out of rain.

3.2.20 What Next?

We have just passed the one mine mark for Kay being home from the hospital. In the last 10 days, she has:

1. Been offered drugs at school
2. Taken those drugs
3. Sought out the person who gave them to her and those drugs again
4. Burned her arm with cigarettes
5. Cut up her thigh with a razor blade
6. Been over an hour late for curfew the first time she was given the opportunity to get herself home
7. Gotten drunk
8. Hit, punched and kicked her sister whole in a tage
9. Put holes in her bedroom walls while continuing that rage
10. Lied more times that I can count

I’m really not sure what to do at this point.

2.11.20: Home Again

Kay came home two weeks ago. It was unexpected and a bit of a whirlwind. Getting back to a normal at home has taken some adjustment time for all of us. And working through the feelings about the unexpected discharge has also taken some time and energy.

Things are good here. Kay is thrilled to be out. So happy to be back in her own bed. Glad to be back at school and with her friends. She’s accepting that there are some strong rules that she is going to have to abide by. Well, mostly… she is 16, after all, and as a teenager, she is morally obligated to gripe about some things.

We are not having deep talks, but I don’t feel as shut out as I did before. She seems to be making some good choices about which friends she wants to spend time with. And her choices about what she is doing with her time are more positive as well. Again, she is still a teenager.

Em is happy to have her home. She is also really nervous that something will happen to her sister and she wants to stop it before it happens. So, lots of anxiety. And, lots of love there, too. I think she is starting to relax as she sees that things are ok.

I am ok, too. Kay’s abrupt discharge, stemming from a combination of her bad behavior and the staff’s need to diagnose it rather than understand it even when the diagnosis didn’t fit created an untenable environment. For the week prior to the discharge, Kay was miserable and essentially isolated from both the other residents and her creative outlets. And the staff could not understand why not being able to talk to any of her peers or write or draw her feelings and thoughts had a negative effect on her.

For a long time, Kay has used bad behavior to distract from her emotions. The bigger the feeling, the bigger the behavior. It is an incredibly frustrating and effective strategy. There is simply no way to ignore the smokescreen. The PRTF got her to a place where she had to feel BIG emotions. She was there. They all saw it. The acting out that followed did not truly surprise me. It was big. It was bad. No one was hurt. Nothing was broken. She was put on restrictions and lost privileges. She had her shoes taken from her. All they had been working on was pushed to the back seat while they focused on her behavior.

After a week, they decided she could no longer stay. Also, insurance was pushing back AGAIN, and they weren’t sure they’d be able to win the next round of reviews. They told me both those things around noon, and asked me to get Kay the following day. After thinking about it, I decided I didn’t want her to stay over another night, so I picked her up that afternoon and brought her home.

It took a day or two for all of our adrenaline to settle down. And things are continuing to settle.

There were good things about the PRTF that I think really helped Kay. There were also some things that I know did not help her at all, and I think there was a little damage done. Overall, I think there was a bit more good than harm, so I’ll take it. Really. What choice to I have?

1.22.20: The Middle

We are in the middle of this story. Somewhere… maybe near the beginning parts of the story, maybe we are further along. But we are no longer in the very beginning, and this is not the end. That much, I know.

In this middle part, we are all dragging a bit. Not much feels completely new. The shocks and disappointments and fears and worry are heavy with history and re-use. That isn’t to say it is easier.

The recognition of past issues and hurts in the presence is quicksand, dragging us back down when we thought we were moving out. Oh, this again. I thought we had grown past this. Rewind, review, retry and rework.

We look around and try to figure out how all these pieces are going to fit back together to build a cohesive and healthy whole. How many sub-plots are going to be thrown in to add depth? How many more layers of the same themes need to be added to make sure the characters are clear?

This story will have a happy ending, I remind myself as often as I can. All this pain will prove necessary for the growth that is in process but can’t quite be seen yet. When takes hold and becomes the focus of the story, it will be a beautiful thing.

We aren’t there yet. We are still in the dark, twisty parts of the story. Often, we wonder how this is all going to lead to the happy ending. Sometimes, I’m not even entirely sure what this story is. But I know we are in the middle parts.

1.16.20 Insurance Indecency

Before Kay was admitted the in-network PRTCF, they called and got pre-authorization from our insurance company, as they required. We got the call that her stay was pre-authorized, and we breathed a sigh of relief and prepared this next step.

A week later, we were told insurance was starting to push back about the stay. We learned then that our insurance company had approved only the first 10 days of the standard 45 day stay. The PRTCF’s team was on it; they just wanted me to know there were some issues.

I spent an hour on the phone with the insurance company, shuffled from representative to representative trying to get more information and trying to find a way to get them to do what they are supposed to do.

The approved another five days. It had nothing to do with me: the PRTCF people did the heavy lifting.

After four of those days passed, I was told they would not approve anymore days. Kay simply did not meet the medical need of “Imminent risk of harm to self or others,” so it was time to discharge.

Amazing. After 2 acute hospitalizations separated by partial hospitalizations and two weeks in another hospital… she was not an imminent risk to herself or others. So, of course, the treatment and care that is stabilizing her should be removed. Because that makes complete sense. Why continue with the plan that was set into motion with the pre-authorization call? Why be proactive?

There were more hours on the phone by me, hours on the phone by the PTRCF, a peer review, and now, and appeal with a second peer review. She could be discharged later today. She might be approved for another few days. Or a week. We might get to do all of his again as soon as this cycle is over.

I understand the insurance company’s need to make sure that patients need the level of care that is being requested. I don’t understand why the bar is set so low. We want to help her move to a time when the idea of her being an imminent risk to herself or others is a thing of the past. We believe this PRTCF is the place that will get her there– already, there are small signs of movement. Disrupting that will not be a good thing.

I am frustrated that we have to jump through all these hoops and not know what is happening. I am frustrated that the doctors who have contact with her and are assessing what she needs in person are being overruled by doctors who only know her as an account number. This seems broken.

My daughter’s stay could be extended. She might get what she needs. I am bending over backwards to do whatever I can to convince the insurance company that she needs to stay where she is. The PRTCF is moving heaven and earth to try to get my kid taken care of.

We are at the mercy of the insurance company. God help us.

1.13.20: Breathing Room

Visitation was, again, not wonderful this weekend. We are learning that it goes better if only one of us spends time with her at a time. One on one, we are better at taking little visits to of some of the things we really need to talk about and then moving away to easier topics. With all three of us, moving to neutral territory is more challenging. So, we learned something valuable.

At home, I think we are all getting used to Kay not being here at the moment. It isn’t that we aren’t worrying about her or thinking about her. But, the worrying and thinking has lost it’s white hot edge of panic that she isn’t here and we don’t know what is happening. Even her not calling has become a little more normal.

Last week, my husband summed our position up accurately: One day in September a year and a half ago, we went from being ok to being in crisis mode regarding Kay. And we have stayed in crisis mode since then. Pretty much every.single.day.

Knowing Kay is going to be in a PRTC for over a month is hard. And it is a but of a relief. It doesn’t quite feel like we have moved out of crisis mode, but it definitely feel like we have other people sharing the burden.

This is different than acute care inpatient because the goal of that was to move her just outside the edge of the depths of the worst crisis. Then, they moved us along to someone else. With the PRTC, she entered clinically “stable” and the goal is to help make sure that she not only gets out of crisis, but also gains the skills, tools, ability and desire to stay out of crisis.

She still has a ways to go. And so do we. It is starting to feel a little easier to breathe, and breathing is where it all starts.

1.9.20: The Struggle

Em is having a really hard time with her sister in residential treatment. She worries about her. She feels guilty both that she wasn’t able to keep her out and because she is healthy enough that she didn’t need to go in. There’s more, but those are the main things, I think.

Her friends simply don’t get it. They understand Kay has been struggling, and they feel badly and understand the stress that brings with it the best they can. But what they see with her in residential is a solution: no need to worry anymore– she’s in a safe place, getting help and all will be well. They tell Em to relax and be happy that she is ok.

And that is true, and it isn’t. Em feels like they are shutting her down and just don’t want to hear about it. Which is likely true. I’ve had to suggest that she not talk to her friends about it because there really isn’t any way they could understand what she’s going through right now. And with Em’s own issues with depression and anxiety, they are a bit tapped out when it comes to supporting and reassuring her.

Yesterday, she came home feeling like her friends don’t care about her and don’t really want to hang out with her. She vented for a long time and provided many examples of “evidence” and is so sad. It was hard keeping my mouth shut and just let her get it all out. It was worth it – she talked and talked, cried a little bit and talked some more. Complaints and irritations about a variety of other things that have been bugging her came out, too. I could feel her getting lighter as she talked.

Eventually, she ran out of things to say. I addressed some of the things she said: the cat is not mad at her; she just likes sleeping between two people instead of one, and she doesn’t sit on anybody’s lap when she isn’t in the mood. We found some foods that aren’t making her feel sick right now, and I can work with that list. I told her I had noticed that sometimes when she is already stressed and sad she has a tendency to think her friends don’t really like her. I suggested that maybe they really do care about her, but they just don’t know what to say or do because they can see how upset she is and they don’t understand, so they say very little because they don’t want to say the wrong thing.

Em is in a tough and lonely spot right now. Add the stresses that typically go along with second semester of senior year, and she has a lot going on. I think we are doing an ok job of making sure we are paying attention to what she needs right now in addition to all that is going on with Kay.

We aren’t doing it perfectly, but we are doing our best. And we will both hope that is enough and try to be better.

1.6.20: Visiting Hours

Over the weekend, there were four time blocks to visit Kay, two on Saturday, and two on Sunday. Originally, I pulled us out of planned events so we could go to all 4, but Husband suggested keeping our plans.

His general premise was that it wouldn’t serve us well to disrupt our lives any more than it is disrupted, and she wasn’t going to want to see us that much. I took a deep breath, thought about it, and agreed.

Em decided she wasn’t ready to go to the visit, and we supported that choice.

Saturday’s visit was pretty terrible. She yelled, she cried, she gave us all the reasons why she shouldn’t be there, and then she left after about 25 minutes. I was so hurt and disappointed.

The staff member who supervised the visitation block talked to us for a bit after Kay stormed out (after waiting for her escort to arrive), and assured us that her reaction was pretty standard and was actually not as bad as it could have gone. She said a lot, and it made sense. But it didn’t help the hurt very much.

On Sunday, I went alone. I brought some food and a deck of cards. Kay apologized for calling me a bitch the day before. I thanked her. She thanked me for the food, and we played cards. She answered some questions about her stay and the people she was meeting. We talked about some logistics. She asked why her sister and dad weren’t there, and I told her. We talked a bit about her sister’s absence.

After an hour, she said she was tired and went back to the cottage. She hugged me.

Our visit wasn’t perfect. But it was better, and I’ll take the win. I will see it as a step in the right direction, and a reason to keep hoping that things will improve.

1.2.20: New Year, New Normal

Kay was admitted to the PRTC on New Year’s Eve. She was nervous and angry, resigned and annoyed.

In another life, it could have been a very small boarding school or summer camp. It was clean, and efficient. The people we met were highly competent, and seemed to be happy to be there.

After they took Kay to the cottage where she’d be staying, we met with the Family therapist, who we liked and look forward to meeting again. Later in the afternoon, the psychiatric nurse called to talk about her meeting with Kay and ask some follow up questions. She was thorough and did not take Kay’s answers at face value.

We were comforted by all this more than Kay was.

Kay called that night, which is unusual for her — during her inpatient stays, she often refused to call home at all. She sounded tired that first night, and tried to make her stay sound worse than it was. She didn’t know her roommate’s name. She hadn’t talked to anyone. She just wanted to come home. If that wasn’t possible, she just wanted to go to bed.

She called again last night and sounded in better spirits. She new her roommate’s name, and she seems ok. All the girls in the cottage seem ok, but obviously, not nearly as cool as she is. She has won at a game, and that made her happy. She asked what the longest insurance would pay for was, and I wouldn’t play that game. She talked to her dad for a while, and tried to get him to answer that, too. He didn’t fall for it either.

This is going to take some getting used to for all of us. Em, especially, has been having a hard time coming to terms with Kay being gone. I think going back to school next week will be a huge help for her.

We are all adjusting. I am feeling hopeful that this is the right direction, not only for Kay, but for all of us.

12.29.19: Waiting

Early last month, we made the decision that Kay would go to a psychiatric residential treatment facility. I researched facilities across the country, contacted several and made a decision about what would work for her and for our family. She was put on a waiting list.

And we have been waiting. Sometimes we have waited patiently, and sometimes not so patiently.

On Friday, I got a call saying that she would be admitted on Tuesday the 31st.

The time is here. There are no more discussions about whether or not this is a necessary move or not. We are no longer discussing whether or not this is the move we should make. We know it is necessary. We know we should, and we know we will. Even Kay understands this, although I will not be surprised when she makes a last ditch effort to stay home. I will also not be surprised when Em makes the last effort on her sister’s behalf.

These efforts will likely sway me a little bit. They will pull at my heartstrings and play on me desire to have my family around me and sleeping in their own beds. But I will not change my mind. I can’t change my mind if I want what is best for Kay and, ultimately, what is best for all of us.

This is hard. And this is right.

And now, there is packing to do.