It has been quite a long time since I’ve blogged. And some of you, dear readers, have been so kind as to reach out to check in to see how things are going. The truth is, it has been a very difficult year-plus since Blake was last in the hospital in July of 2021. I have found it much too difficult to write about our family’s experiences. I would like to give you a little update, though.
Major depression coupled with Obsessive-Compulsive Disorder is a bear and it is incredibly painful to watch your loved one face them. Are things better? The short answer is, “No.” My son struggles to find a reason to stay attached to this life and obsessions and mental compulsions plague him.
The longer answer is that it is complex. Each member of my family has grown in their own way this year. Speaking for myself, I am learning to listen better than ever. I am practicing climbing into the deep dark hole and being present for my loved ones. I am learning to say, “No,” to requests, even though my instinct is always to say, “Yes.” I am learning to appreciate small moments. Some people suggest taking it one day at a time; I’m practicing taking it one moment at a time. It’s simpler. Hugs have a deeper meaning for me than ever before. A smile melts into my soul like it never did before.
While this year has been incredibly challenging, there has been beauty. And no matter where things go, I can say that we loved well and did our best.
My therapist shared this little animated video with me a couple months back. It’s taken from a Brene Brown talk on empathy. I think it’s a treasure.
I began writing this piece nearly 6 months ago. It was too painful then to complete it. Today I was ready to face it again.
Content: Mention of suicidality and hospitalization
“Are you angry?” she asks me.
Something in me breaks free. I AM angry, but not for the reasons she thinks.
I’m sitting on a telehealth call with my therapist. I’ve been working with her for over a year – since shortly after my now 22-year-old son, Blake, made his first call to the National Suicide Prevention Lifeline. We’ve been talking about how I’m dealing with Blake’s chronic suicidality and the aftermath of his recent hospitalizations. In particular, we are discussing the regular, yet now decreasing, messages I receive from people who care about me asking if things have gotten any better.
I am angry because I feel utterly abandoned – but not by friends or family. They have been wonderful. I feel abandoned by the very field I have come to love and to have put the utmost faith in. I feel abandoned by mental health.
I am a psychologist with more than thirty years of experience under my belt. I’ve worked in community clinics, and with people with some of the greatest social and emotional needs. I veered from my original path and toward specializing in Obsessive-Compulsive Disorder when it struck my own home and I realized that too few people understood the disorder or how to treat it. I have dedicated myself to educating people, making treatment more accessible, and volunteering my time for mental health causes. I have utterly, completely imbibed the mental health “Kool-Aid” because I believe people can be helped, because I am passionate about providing that help and directing others toward it, and I believe all people have a right to excellent mental health care. Ask anyone. I live, work, play, breathe, and sweat mental health advocacy.
And then my son became suicidal. And mental health abandoned me.
“I am angry,” I tell her.
“I am angry because the community I have believed so completely in has failed my son. It’s failed our family. I feel like I have lost my community.”
When Blake was in the hospital, he was told he belonged in a residential placement to address his depression and his OCD. When he interviewed for those and shared that he did not want to live and did not believe that he could get better, but agreed he would give it a try, he was declined admission. Too suicidal for a residential placement. Yet, he wasn’t suicidal enough to be in a hospital psychiatric unit. Our insurance fought with the hospital over reimbursement for days. Ultimately, the hospital agreed that he was finally not suicidal enough to be there. Yet, he had no placement to go to.
Take that in:
Too suicidal for a residential placement
Not suicidal enough for a psychiatric unit
And so he was sent home…
Our son was released home from his second two week stay in the hospital with an appointment with a telehealth psychiatric practice (who, when they met with him, merely told him he was too severe for them to treat) and the phone number for a mental health companion service (not covered by insurance) that charges more per single visit than many people make in a week. It was then that I was hit with the gigantic void that exists in mental health. No one checked in on us or our son to make sure he was well. Not the hospital. Not his previous therapists. No one directed us toward treatment that might be useful for him. We were left to figure it out. He was very “severe” we were told – but we were left alone, scared, and confused.
Our family is incredibly privileged. My husband had foresight and we had the ability to save a little money from each paycheck for most of the time we’ve been working. It’s turned into a nice savings. We can take the financial hit right now. I am a psychologist who is active in my professional community and I have many connections. I can call people who know people.
And even with that, the system is confusing. There may be treatment for young adults like Blake, but the point is, I’m more knowledgeable than the average mental health consumer and this is unbelievably confusing for me. The bits of treatment we have cobbled together so far are mostly not covered by insurance. The costs are staggering. I am not complaining. My son is worth it. I am able to pay for it. Many, many people would not be able to do so. And it is just not right.
Humans deserve a better mental health system than the one I am feeling abandoned by. I feel let down and disillusioned by something I’ve poured myself into and I’m still licking my wounds and taking care of what’s at home. But I hope to turn this experience into something more. Mental health can be better. It can be the care system I believed it to be. I am an ardent believer that one person can make a difference – even if it is a very small one – and, as I regain my own personal sense of strength, I will dedicate myself to making a better system. We all deserve it.
WordPress informed me that in July I hit eight years blogging here at “OCD in the Family.” Unreal. It gave me pause to think back a bit (oh, and also to update my “About” page). I remember where I was when this blog was born. Blake had just turned 14. Michael was 16. And I was in a place where I felt powerless to help my treatment-refusing son, to be a good mother to both of my teens, and to have a healthy marriage and family life. Now my boy are both young adults, trying to find their way in this world.
Over these years, the blog has evolved. It has shown our ups and downs, it’s grown to cover the topics of depression, suicidality, hospitalization, treatment, and life as a therapist who specializes in Obsessive-Compulsive Disorder and anxiety disorders. I’ve learned much – and my learning continues.
One very special thing over the years has been the connections I’ve made with readers. Some are fellow bloggers who I’ve actually gotten to meet in real life, others are regular commenters who I’ve grown so fond of over the years, some comment from time-to-time or only once, and others leave a “like” or just their imprint in my daily stats. However you’ve been here, reader, I am so grateful that you chose to stop for a moment and visit with me.
I plan to continue to share our family journey, wherever it goes. I’m honored if you come along.
This – or a variation of this – is the question I keep getting asked in the almost month since my young adult son, Blake, came home from his second hospitalization. Blake was hospitalized with severe depression after a recent spike in his Obsessive-Compulsive Disorder (OCD) and related intrusive thoughts. He made a plan to end his life, and he’d planned to carry it out. Yet, that is not where the story begins, nor is his release from the hospital where it ends. They are pieces in a long journey.
I can’t speak for my son and what it is like to be him. I can, however, speak as a mom who has watched her child suffer for a very long time. There have been twists and turns on this road over time and lots of things have contributed to where we are now as a family. The bottom line is that my son came to the point a while back where he decided that this world was not for him. He’s been clear about that with us. He lost hope somewhere along the line that he would ever feel better. And we have been living with this as a family for some time. His hospitalizations did not represent a sudden departure from the life we lived with him. They were just the most obvious signs to the outside world. To many, I guess it appeared we had a sudden crisis along the road and that the hospitalizations were about addressing that. Maybe they were. But they didn’t “fix” a problem; they just kept my son safe for a period of time. Maybe they even reinforced his view of himself as a failure.
So now people ask me, “Are things better?” or “Is he feeling better?” I understand that they care and that they are being kind. And I feel like I disappoint with my answer. Bluntly, the answer is, “No.” That’s not what I answer, though.
“It’s going to be a journey,” is what I say. That’s the truth. Simple. Pure. I don’t know what direction my son is going to go in. It kinda kills me as a mom to move through life knowing that my child, who I love dearly, believes that each day he is here is torture. But, this is not the end of the journey. Not now. I don’t know where it leads, only that it is.
Welcome to the surreal world of post-hospitalization for a mental health issue. Glad you could come. Suspend all disbelief at the door.
Seriously, this is a bizarre journey. Come along if you like. Today Blake had his first real appointment since he was released from the hospital. He met with a psychiatric service that was meant to help him continue with his medications until he connected with a new psychiatrist. I checked on him just after the video appointment was to begin. Hearing no sound coming from behind the door, I knocked to check in. No one had contacted him yet. He was sitting and waiting, almost willing someone to email him a Zoom link for his appointment which was supposed to have begun five minutes before. I coached him to call and he was given a way to connect and I left the room once more.
When he finished, several minutes later, he was more confused than ever. The wrong medication was prescribed and he had been told to go back to his previous psychiatrist and outpatient therapists. This is NOT what the hospital had told him to do. And, all importantly, there was no blood test ordered to check his Lithium levels (one of his new medications is Lithium, and he must have regular blood tests. In fact this was the most important reason for his appointment).
I recognized, after hearing of his experience, that I need to step in and advocate for my young adult son. He is scared and confused.
”In the hospital, they do everything but spoon feed you,” he noted. “Now I’m supposed to know how to manage everything and I don’t. It’s all my fault.”
“No. You’re not. And it’s not helpful to pile blame onto yourself,” I told him, gently. “This is confusing for Dad and I, too. We’ll figure this out together.”
I helped him call his psychiatrist, a man he’s seen only once before he was first hospitalized a month and a half ago, and helped him book an appointment. Thank goodness he had something within a couple days. I hung around while Blake completed a mass of online documentation and I provided moral support and assistance as he needed it. He got through it all.
Later, the pharmacy left a message. I’m pretty sure they refilled medications he is no longer taking. I haven’t even told him yet. He doesn’t need more confusion for the day.
Tomorrow, we celebrate his birthday. It can wait until after that. His birthday had been planned as his death day. Our plan is to help him avoid fulfilling that plan. He seems on board with that and has given us permission to commandeer the day with special surprises. Thank goodness for that. Perhaps we can have one day of delight – one day where the weirdness waits. It’ll be back on Friday, I’m sure.
It’s been a little while since I’ve written and someone just reached out to me to ask how things have been since Blake’s hospitalization. I’m guessing this person is not the only one who has wanted to know so I’d like to share a little update. This style is uncharacteristic for me on this blog, but I’m so very tired lately, and it’s the easiest way for me to share with you what has been going on.
Not long after my last post Blake returned home and started in a partial hospitalization program (for OCD, anxiety, and depression). That means he went five days a week for six hours each day. Without sharing too many details, I can say that it did not go well for him and he was admitted back to the hospital within a couple weeks of being released. This second hospitalization was longer and he is now home again. We are working as a family to put together the pieces of what aftercare will look like.
I can share my own personal experience of this as being scary, confusing, and an emotional roller coaster. When your young adult is admitted to a psychiatric ward and held, they (and you) lose control over exactly what happens and when they get to leave. There are twists and turns on a daily basis – he’s going to be trying this procedure. No, wait, he’s not. He’s on this medication. No, we changed that two days ago. We’re recommending this program. No, we’re not. We think it’s this diagnosis. No, we changed our mind – it’s this. Oh, can you pick him up in two hours? He’s coming home.
My head has been spinning and it’s not been easy to regain my balance. I’m decreasing my workload as much as I can to attend to my family. As many of you know, I’m a psychologist who specializes in treating anxiety and Obsessive-Compulsive Disorder. I can tell you that none of my education, training, or experience has prepared me to face this situation more than anybody else. I don’t like that. Sometimes it feels like Blake has been moved from professional to professional and there’s no one staying involved long enough to keep things moving forward in a logical direction. It feels like we, as a family, have been tossed around – and now it is our job to sort out what’s next with the leads we have been given.
I’ll keep you posted on our progress. We are diving into uncharted waters. I hope that, someday, I can use this experience to help make is less scary and confusing for others.
Please be aware, short reference to suicidal ideation below:
I can see her waiting patiently out of the corner of my eye, as I listen to the social worker’s voice on the other end of the line. She can’t see or hear me; my camera is off and my mic is, too. I can see the fuzzy blackness covering the square that would be me in this telehealth call. She looks uncertain about what to do as she waits. The social worker on the phone talks on, giving me updates and directions. I dutifully take notes, painfully aware of the time that has lapsed since I darkened my screen and left this mom, mother of one of my young patients, waiting. I hang up the phone. Six minutes have gone by. I turn my camera and mic back on and she looks at me with concern and with what I imagine is a question that hangs between us.
“Is everything okay?”
It is not like me to abruptly leave a therapy session, and the call came in so early during our meeting I hadn’t yet been able to tell her. This has been a week unlike any other. I’ve told each and every patient or parent that I might be interrupted. I’ve mastered the drill by this point – a family member is having a health crisis; everyone is safe; doctors call me unexpectedly and I have little control over when that happens; if it happens, I’ll turn off my camera and microphone, take the call and return as quickly as I can; please forgive me if it happens. But this time, I had no opportunity to share, the call came so close to the beginning of our session. Then I tell her more than I’ve told any other person I’ve met with this week, pausing only for a millisecond in my head to debate whether it is appropriate.
“My son is in the hospital,” I say. Now it is out there. “I deeply apologize that I didn’t have the chance to tell you that I might get a call.”
“Was it planned?” she asks.
“No,” I answer, “though things are stable. I just get calls from doctors and I don’t have any say when they do that. I’m so sorry that this took from our time. I will make that time up.”
“Are you sure you’re up for being here? We can reschedule.” I see the caring and concern on her face.
“Honestly, there’s really not anything else for me to be doing right now. If I wasn’t working, I’d be sitting around waiting for time to pass,” I tell her. Then I lean in to the monitor, “Right now I’d like to be here with you, if you’d like to be here with me, too.”
She decides to continue and this honestly is exactly where I want to be.
Blake has been in the hospital for eleven days as I write this. For those of you who’ve followed this blog, you’re aware he’s struggled with depression and OCD. At times, it has been confusing which is more pressing. He’s been open, for the first time in a long time, to participating in treatment. He’s been working with a couple therapists and a psychiatrist. While he’s been the driver of his treatment, he’s also felt little hope or joy. He’s found nothing he wants in life. Depression is a thief that way; it robs us of seeing any possibility life might hold for us. Still, he continued on, trying a new antidepressant. Then, OCD’s intrusive thoughts took hold, constantly locking him in a fight against the torment. Simultaneously, his muscles started twitching uncontrollably, making him that much more uncomfortable. It took a while to realize that the twitching was a likely a side effect of his medication. The entire experience led him to hatch a plan to end his life – a plan he luckily shared with my husband and I, and later with his therapist.
Now our journey will take a new direction. Blake is scheduled to begin a Partial Hospitalization Program for OCD and anxiety shortly. He has never had treatment this intense ever in his life, and he is understandably scared. I have never had such brain fog in my life as I have this week, nor have I ever recognized so starkly the incredible beauty and supportiveness of those around me. I’ve had little energy to interact with others beyond what I “must” do, but those interactions have made me appreciate the power that exists in supporting one another.
And so, dear reader, thank you for coming to visit with me today. There’s nowhere else I’d rather be than here with you, if you’d like to be here with me, too.
*This is not meant to be advice; it is simply something I’m learning as our family navigates having a family member with suicidal ideation. If you are thinking about suicide or have a loved one who is struggling with thoughts of suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255 (In the United States. In other countries, please reach out to a similar service in your country).
The hubby and I began participating in therapy with a specialist from a suicide prevention center just a few weeks ago. Our son, Blake, had been sharing a good deal of suicidal thoughts with us and, since he was not interested in any ongoing treatment, we recognized we needed support ourselves. So far, we’ve done an intake meeting and two sessions. Although I’m a psychologist who specializes in treating anxiety and OCD, it’s a completely different story being a patient. I am learning, for sure, so I thought I’d share three nuggets I’ve gotten so far:
1. It’s not necessarily a bad thing that someone is talking about suicide.
Emphasis here is on “talking.” It was terrifying to me when Blake shared the thoughts that go through his mind, how much he suffers, how much he thinks of dying. I became alarmed at the very presence of these thoughts. However, our therapist (and others) have told me that it is actually a positive thing that Blake is talking about his thoughts. Talking and sharing are attempts to reach out and connect with others. This is a better thing than keeping these thoughts all to oneself – and not connecting with others.
2. It’s important to listen, not try to problem solve.
Many times when Blake has shared his pain with us, the hubby and I have worked to problem solve with him about ways to cope. We’ve also tried to shine a light on the bright side of things that he may be overlooking. What I’ve learned is that the most important thing I can do when my son shares his thoughts and feelings – even though they contain very dark and frightening content – is to listen and accept them as his. It is not my job to problem solve. That’s not where he’s at; he’s in sharing mode and he simply wants to be heard. As far as pointing out the bright side, our therapist noted that, for someone who is not ready for that, it’s kind of like shining a light in the eyes of someone who has been sitting in the dark. It’s going to be jarring and unappreciated. So, I’ve been working on listening and simply hearing.
3. An increasing number of conversations about suicidal ideation does not necessarily mean the person is about to act.
In our last session, I noted to our therapist that the freqency of conversations seemed to be going up. Our son was having more conversations with us about his pain and his thoughts of death. He wasn’t sharing intent to act, he was just sharing more often. It was emotionally exhausting, at times, and I was concerned what it meant. The therapist reminded me that we’ve shifted our conversations from problem-solving and pointing out the bright side to actually just listening and accepting. She noted that the increased frequency may simply mean it’s become more safe to share and that, when a person feels like they will be heard, they’ll take the opportunity to talk more often about what may be going on in their head. So, although it feels scary to me to be hearing my son’s thoughts more, it may just be that he feels more accepted in voicing them now than he did in the past.
We still have a way to go on this journey, and we have to listen to our son to ensure we are not missing signs of intent to harm himself. On the way, I am learning, and I hope our experience can help others.
*If you are thinking about suicide or have a loved one who is struggling with thoughts of suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255 (In the United States. In other countries, please reach out to a similar service in your country).
Blake casually drops this line as he and I sit lazily on the patio chairs and cushions in our yard. I do everything in my power to keep myself from reacting too strongly. I want to encourage him to keep talking, not shut him up with my own anxiety.
“You did?” I ask. “When was that?”
“Saturday night. I just couldn’t sleep. I couldn’t stop thinking about what a failure I am and I thought, ‘Maybe I’ll check this out.’ Honestly, I expected it to be a waste of time, but I’m actually glad I called.”
“I’m so glad to hear you called,” I say. “You must have been feeling pretty awful to reach out.”
“Yeah. I tried the text line first. But there were a lot of people ahead of me. I waited over half an hour. I decided I’d try the actual phone line because the service suggested it as an option. I thought I’d wait even longer, but there was someone on the phone with me in about three minutes.”
He pauses a bit, then he continues, “I thought it would feel stupid, but I have to say, it felt so good to tell a stranger how awful I feel. I told them about stuff that I’ve never told anyone else. I felt like what I’m so upset over is so petty, but the person on the other end of the line said, ‘That sounds so hard.’ It felt so good to hear that.”
We go on to talk about more of the particulars. My young adult son shares how he struggles to decide if he should live or if he should die. I tell him how courageous he is for reaching out, and for being honest with me now. But afterward I am hurting so much. I want to cry and feel the relief of deep, cleansing sobs, but the tears won’t come.
It’s well after midnight and my husband is asleep. I turn to the internet. I’m not sure what I’m looking for, but my son (my beautiful son) – the one I carried when he cried as an infant, explored the world with, delighted in each new step he took, soothed through huge spikes of anxiety and OCD triggers, and championed through his many brave steps – frequently feels that his life is not worth living and that he is not worth the effort of saving. I’m looking for something to help me help him see that it IS worth it. I feel desperation…and then I realize – it’s not my choice to make. It is his life and I cannot coax, cajole, or convince him to stay here. It is selfish of me to do so because, while I’m thinking of him, moreso I’m thinking of my own pain.
And that is when I realize that I am the one who needs help. I have to take care of me right now. It’s not about saving him. Yes, he could use help and support when he chooses it. But right now it’s about taking care of me so that I can live with a family member who I love fiercely and who is frequently contemplating suicide. That is a lot to navigate alone and, until now, I’ve pretty much done just that.
Maybe it’s because I’m a psychologist and I think I’m supposed to know how to handle suicidal thoughts, but I suspect that it is also about being a mom. As parents, we are supposed to take care of our children. We worry about them from the moment they are conceived until we draw our last breath. When they struggle, we look to get them help. We forget that we must be in good shape to be a support.
The next day, I call the suicide hotline myself. It had never occured to me that I could call the hotline as the parent of someone who was dealing with thoughts of suicide. As much as it sucked to make that call, it felt so good to be heard and held by another. That call led me to reach out to a suicide prevention center and today, in less than an hour, I will have my first consultation session with a specialist. It’s not for Blake. It’s for me – so I can learn how to take care of myself. I’m nervously optimistic. I’ve lived with my son’s suicidal thoughts for so long, never considering how I was doing. Let’s see where this journey leads.
Like just about everybody else, our family is staying at home as much as possible right now. I’ve completely moved my OCD and anxiety psychotherapy practice to telehealth, so I’m home almost all the time now (exceptions being to get groceries, and to walk around the neighborhood after sitting all day and forgetting to even go to the bathroom between patients). The hubby works in an essential industry so he still has to go in to work. Michael has seen all his plans, including work, go bust. He and Blake have a commitment to volunteering at the local food pantry, which seems to need them more than ever at this time.
The hubby and I are taking advantage of this unprecedented time with our young adult kids by watching family movies, playing games, and taking turns making meals for one another. We’ve always eaten dinner together as a family. It’s just different knowing they’ll be here for dinner every night.
Last evening, as we sat around the kitchen table, considering the news of the day, Blake suddenly became bright and animated.
“I’ve been a germaphobe my whole life. I wash my hands all the time and worry if they’re clean enough. I walk around feeling anxious every day. I almost never leave the house. Now, everyone is me!” and then he smiled a very satisfied smile.
We pondered this together as a family. Blake has struggled with contamination fears since he was very young. His anxiety can be debilitating. He self-isolates often (much to our chagrin, but apparently adaptive in the present circumstances), though he’s gradually improving on this. Now, it seems as though the whole world is living the way he is. For the first time in a long time, his world is the norm…and it feels good to him to belong. It’s not that he wishes this situation on anyone; it’s just good to feel like he knows how to live in the world the rest of us now find ourselves in.
Blake summed it up to us, as he shared his perspective, “Welcome to my world!” he said.
OCD In The Family 