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.
It has been so very hard to write these past months since my son, Blake, was released from his second hospitalization. I’m pretty sure I’ve been on autopilot. I don’t experience joy in the same way I used to. I find myself drifting off when I’m with a group (the few occasions that I am now). I am delighted to hear what is going on with my friends’ children: the upcoming weddings, the new jobs, starting a new education, traveling. Yet there is just this sadness in me that lingers. It touches everything, leaving its residue. I don’t take new patients into my OCD and anxiety psychology practice. I’m sure many people think that I just have a long waitlist. The truth is, it would be unethical for me to take on more when I’m struggling myself.
Yes, I am depressed. I know it. Yes. I’m in treatment myself. Have been for a long time. Thank goodness for therapy. It sustains me through the ups and downs. It keeps me moving on through the unknown.
I’m struggling whether to tell you today about the sense of abandonment or what I’ve finally come to that is providing me a measure of peace. Probably the latter today. With the abandonment part comes a lot of anger and I can’t find it in me today. No. I’ll tell you instead about the peace.
A couple months ago we ventured away for a family overnight. In the bathroom as I prepared for bed, I wondered to myself how one actually copes with having a chronically suicidal loved one. What is one to do when their loved one is chronically in emotional pain, shares about it frequently, and could leave this world at any moment?
“How do I keep going? How does one come to terms with this?”
My therapist hadn’t been able to answer that question when I’d asked her about it the previous week. It felt to me like an unending grief – like I was watching my 22-year-old son die from a life threatening illness and I could do nothing to save him. Part of me wanted him to “snap out of it,” though I knew that was unrealistic, even unfair to suggest.
Just then, in the hotel bathroom, it washed over me that, indeed, my son did have a potentially life threatening illness – it just wasn’t a physical one.
“So how do people manage when someone they love dearly has an illness that may end their life at any time?” I wondered, thinking of a particular colleague whose spouse was painfully terminally ill.
I rolled into bed, considering this. It occurred to me that, when you love someone who is seriously ill, you stay with them through their pain. You empathize with it as much as you can; you don’t discount it or disregard it or blame them for it. You accept that it is part of their illness. And while you desperately do not want to lose them, you accept that death may be part of the equation at any time. If that’s the case, you appreciate each and every positive moment together that you can, knowing that it may be brief. And while you don’t want to lose them, you respect their right to choose what interventions are acceptable to them.
When I awoke the next morning, I recognized that I had a new perspective on living with my son. It is what guides me and helps me to keep moving through the unknown. My son’s illness is potentially life threatening. In fact, somehow I have fully and radically accepted that I may lose him at any time. I don’t want that, but I have no control over it. My job is to accept and hear his pain, no matter how difficult that is. I can hold hope for the best, while helping him pursue the treatments he is willing to accept. And, maybe most important of all, I can cherish the moments of joy that we have – and we do have them sometimes.
Somehow they are all the more precious.
*If you or someone you know is considering suicide, please consider reaching out to the National Suicide Prevention Lifeline at 800-273-8255, or the equivalent in your country.
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.
Being a loved one of someone who has Obsessive-Compulsive Disorder is hard. It’s hard because you watch that person suffer, and, when you love someone, you don’t want them to suffer. Very commonly, when someone we love has OCD, we get caught up in doing things that don’t help. One way we do this is by accommodating. That is, we do things that OCD wants (e.g., washing our hands because maybe they touched something suspect, we reassure our loved one that of course the feared thing won’t happen, we do things our loved one is capable of doing themself so that their OCD doesn’t get triggered – the list goes on). Accommodation, although it feels loving, actually keeps our loved one stuck in the OCD cycle.* On the other end of the spectrum, but also problematic, is what I did with Blake the other day. I got into conflict with him over his OCD.
Yes. Yes. I did get into conflict with him. I was downright not very nice. I share this with you at the risk of being judged harshly, but I have a purpose for sharing it. I want to emphasize something for loved ones everywhere. Loving someone with OCD can present some challenges – and you will not always meet those challenges in the best way. You are human. You will mess up. I messed up the other day, and I am a psychologist who is an OCD specialist. I deal with these issues every single day of my professional life. I should know better. And I can admit that this is hard.
So, here’s what happened. Blake and I went grocery shopping. He was not thrilled to go. I actually didn’t give him a choice. He’s been in the house almost nonstop and I thought it was important for him to interact in the world for a brief bit. With our masks donned, we moved through the medium-sized store as I grabbed some bread and produce. Blake was clearly anxious about the experience, although he did stop briefly to say hello to an employee he recognized from his volunteer work. When we got home, I still had one more errand to run. Blake was to take the two bags of groceries into the house. He walked around the back of the car and lifted the hatch.
“I don’t know what to do about this, Mom. Can you help?”
I got out of the car to see what the problem was. One of the bags had fallen over and the apples inside it were now lying on the car liner. Without thinking much of it, I picked up the apples and placed them with their mates in the bag. Blake seemed to recoil. I knew right away what it was. OCD was saying all the apples were contaminated. I felt frustration rising in me; that should have been my sign to stay quiet and leave. Instead, I confronted Blake.
“You’re upset about the apples, aren’t you?”
“Well, I just don’t know what to do with them now.”
“Blake, we wash our produce before we eat it…”
“But they were in the back of the car…”
“Apples grow outdoors. They fall on the ground before they get to the store. They touch all sorts of things. You’re not going to eat these now, are you?”
“No. Probably not.”
Nice, huh? Great example of a loving exchange between mother and son. And the mother is an OCD specialist! So, it went on for just a bit more and ended up with me saying something really brilliantly supportive like, “That sounds like such a hard way to live, honey,” before I drove off, leaving Blake with the grocery bags.
Within moments, I knew I’d been out of line. I’d been unkind. Airing my frustration at my already-anxious son was not going to make anything better. What he did or did not plan to do with the apples was not my problem. It was his job to either challenge his OCD and eat them or to miss out on a favorite fruit. As I drove I crafted my apology in my head. I would write it as soon as I was parked, but before I even arrived at my destination I received a text from Blake.
“Hey Mom. Sorry for how I responded. I’m tired and I’m panicking and I felt like I just couldn’t deal with the situation. I went with what made me most comfortable in the moment.“
Tears stung my eyes and rolled down my cheek.
“Hi Blake. Thank you for the text. I was just about to text you, too. I feel terrible. I cornered you about the apples and that was wrong. I am so sorry.“
We spoke some more when I got home and each acknowledged our part. We recognized areas where we are each a work in progress. Will I be perfect now and never mess up again? No. I will absolutely mess up again. What I refuse to do is to beat myself up over it as I have done so many times in the past. It doesn’t help me and it doesn’t help Blake, who worries about me when he can see I’m doing that. Instead, I can strive to improve. I can acknowledge that I am flawed. I can recognize that growing signs of frustration in me are not imperatives that I act or speak, but signs to step back and evaluate. And I can remember that when Blake is appearing anxious that he is not going to be able to take feedback from me; it’s best I wait. We can learn and grow – together.
*Note regarding accommodation. Please, if you see yourself in this and recognize that you engage in accommodating your loved one’s OCD, refer to more information on the subject. Do not change and remove your accommodating behavior until you have consulted with your loved one, a professional, and/or professional resources that can teach you how to do this. One possible resource is the International OCD Foundation: https://iocdf.org/
The hubby and I are in the back yard having a moment alone when we notice Michael and Blake coming out the door. Their faces look purposeful. Michael’s looks gleeful.
“Mom, Dad – We’re moving!”
We’re not suprised by the announcement. The two have already been talking for over a week about driving across country, getting an apartment for a few months, and creating a small social bubble with a couple of friends Michael went to college with. It’s been an uncertain time for two young adults living in a pandemic. Job opportunities have been sparse for Michael (a recent college grad). What he can find he is way over-qualified for. They’ve both felt isolated. Fears have abounded: Will we ever find work? Maybe we’ll never have relationships or families of our own. What is our future?
Michael has also been worried about his brother. He sees him frequently stuck at home, sleeping way too much, struggling with a view of the world that lacks joy. He thinks time away is just what his brother needs. And one more thing: he adores Blake.
“There is no one else in the world I can better imagine doing this with,” he tells his brother.
Blake is uncertain. He worries about the money it will cost. He worries he won’t finish the book he’s about thirty pages from completing. He worries he won’t like living nearly two thousand miles from home. Nevertheless, he agrees to go – and he almost instantly regrets the decision. But OCD has made him a man of his word. If he makes a commitment, there is no gray. There’s no re-evaluation, no backing out.
“Please? I want to come with you.”
On a Sunday morning, almost two weeks ago, they leave our driveway in a car their grandmother has lent them. One of our dogs repeatedly tries to stow away with them, but he doesn’t succeed. Two pieces of my heart drive away. I’m happy and I’m sad.
The photographs from the road tell an adventurous story. Two brothers on the road together. The phone call when they arrive at their new apartment reveals that Blake has been nauseated since he left. Anxiety has taken over. He immediately is offered a job at a book store, which he takes. It’s his first “real” job. His nausea does not abate. His mind is a storm of unwanted thoughts.
Michael, awash in pride over having single-handedly installing wifi in their new place, is an incredible source of support for his brother, even as he deals with the reality that moving across the country is not as romantic in reality as it is in fantasy (friends aren’t as available as they promised they’d be; many hours are spent pacing the apartment floor, jobs are still difficult to come by). He drives his brother to and from his new job. He buys him ice cream to settle his stomach.
Blake wonders if he’ll last the three months he committed to. So does Michael. The hubby and I remind them that doing new things is hard, and to stay focused on the moment. One moment at a time. One hard thing at a time.
OCD In The Family 