One of the things that I do aside from write about my bipolar related experiences is I take care of my mother who has advanced Parkinson’s disease. I moved to live with her in 2013 so that I could take care of her. It is an interesting situation to be in, particularly in light of a very difficult year in 2016-2017.
It’s hard to write about in some ways… that long year that was so difficult for my mother and me. I’m not sure where to start, (and when that happens, I sometimes ramble until I get a dialog going). So please excuse me if I am a little here and there right now. I’m not trying to be elusive or vague. It is just that there is so much stigma attached to some of what I write about (and have gone through) that it’s hard to know how to present some of my experiences. I don’t want to be seen in a bad light… you know? But there are some things that can come across as very… not good. And I want to share some of it because it is a genuine part of my experiences with bipolar disorder. Also, there are people who experience similar or worse situations when their mental health falters for whatever reason, and I want to show that there can be normality after illness and confusion… and that no one is alone in their experiences. 5.7 million adults have been diagnosed with bipolar disorder in the United States. All have varying experience with wellness and illness. And some of these people encounter problems they wouldn’t face in times of just wellness.
In the early part of 2016, I experienced a crossover into a full blown bipolar 1 episode. It was triggered by medical treatment for back pain (corticosteroid injections). It was an awful time. I ended up off my meds, believing full heartedly that I don’t have bipolar disorder. And it took more than a year to get me back on meds. And through that time, I had traumatic experiences with the police, and the fire department, and mental health facility staff.
The thing is (that a lot of people kind of miss, particularly if they have never met me outside of an episode) that I’m fragile and scared when I’m not well. Psychosis is a scary experience for me. A lot of professionals in the mental health system talk about how people with bipolar disorder usually like the mania, creativity, and euphoria that go along with the experience. I am not part of that category. I don’t like being hyper. I do like to have energy but prefer healthy levels of it. I don’t enjoy my mind’s wanderings while I’m ill. However, there are a few things that I do like in the experience, but these things are coupled with frustration because my thought processes don’t ever come to fruition.
I get the typical grandiose ideations… being someone important, thinking I’m smarter than I am, etc. But after a while, when evidence of my hierarchy in society and acknowledgments of my intelligence don’t reconcile with reality, it’s frustrating and unpleasant.
When I’m ill with a bipolar episode, I am very vulnerable. I can see how this might be hard to picture for some. I do tend to overcompensate for the fear I experience at those times. But I’m generally afraid of the world.
What do I think about during the episodes I have? I’ve mostly obsessed over how to save the environment and try to come up with solutions to the world’s problems. I think about social injustices, community issues, how humans interact with the world around us. That’s what I primarily focus on.
I’m basically harmless. I just get really confused, don’t really understand how confused I am in those times and think I’m someone of importance. But I’m just a regular average nobody who isn’t stupid but isn’t particularly or formally educated either. There isn’t anything outstandingly impressive about me. Some say that it’s inspiring that I am open about my disorder. But really that just became a coping mechanism. To keep having bipolar disorder some sort of shameful secret would be like suffocating. Trying to hide it (like I did early on) only made it worse for me. Sharing helps me a tremendous amount. So, nothing too interesting there.
In any case… In 2016, I asked a police officer for help with getting care for my mother. She’d had brain surgery in 2015 and I was worried about the site on her head where they drilled for the surgery. I suppose that it was such an unusual procedure that he didn’t take me seriously. He told me that it wasn’t his problem… the issue was my problem and to deal with it by myself.
I sometimes try to imagine what it would sound like for someone to explain DBS (Deep Brain Stimulation) surgery. I basically walked up to the police station (they came outside to talk with me) and started trying to explain the surgery process because I was worried about my mother. It made perfect sense to me, but what would it sound like to hear someone say, “mother had brain surgery,” I suppose that’s enough for someone to say or think, “yeah right.” But the truth is that she did, and it both affected her in unexpected ways, and created a lot of stress for me.
I explained to the officer that my mother had brain surgery and detailed how the procedure worked. I tried to tell him about the device in her chest… he wouldn’t listen.
Just to give you some info on this surgery, in layman terms, basically – the surgeon drills two holes in the skull and insert long wires that reach down into a part of the brain that helps control movement. Parkinson’s disease is a progressive, degenerative disease that affects the movement center of the brain for those people with Parkinson’s. And these people tend to take a lot of medication to help control shaking, stiffness, and other symptoms. This medication tends to cause dyskinesia – an unnatural, involuntary movement of the body, often apparent in the shoulders or from the waist up.
In any case, the medications help to control the dopamine levels in the brain. What the surgery does is it creates a constant signal from a device that is implanted in the patients chest. (Now, imagine an officer hearing this) The procedure is a two-part process. The first part is the implants in the brain. The wires have an area at the ends (the part that goes to the movement center of the brain) called leads that…
Okay, it’s hard to write this out exactly without having a diagram to show you. But basically, I told the officer that my mother has wires in her head that reach down to her chest (this is true) and connect to a device that sends currents to her brain to help control the dopamine levels and helps reduce the amount of medication she takes so that she doesn’t have as many side effects from those medications. I try to understand what that sounded like because I can’t quite explain to myself why the progression of events happened the way they did.
Okay, back to when I had the injections in early 2016. It was almost a year since my mother had her brain surgery (just for the heck of it, here is a link to more info on that in case you’re interested. https://mayfieldclinic.com/pe-dbs.htm ). Most of these surgeries go smoothly and the benefits outweigh the drawbacks. My mother was unfortunately part of a statistic in which 2% of the patients experience complications. She experienced delirium after the surgery and had a bit of a personality change for a while.
So here I am, someone with bipolar disorder coping with a situation that had me kind of panicked and I turned to the police for direction and help and was turned away… likely because he was ignorant about Parkinson’s disease and particularly about DBS surgery and thought I was some kind of nut.
The unfortunate thing is that I had been given these corticosteroid injections and it changed my energy as well as sent me flying into a manic episode and I was delusional. So he was correct that I was struggling with reality. But I still had one foot in at that point and knew what I was talking about when I was trying to explain the complication that had me so worried.
My mother had let me touch her head where the implants were inserted. And it felt to me like the plugs that closed the surgical holes were lifting under her skin and rising out of the holes. Again, as I write, I try to imagine what that must have been like to listen to. But it was what was going on and I had genuine worry. I told the officer that I wasn’t sure if it was an emergency, but really needed help to make sure she was okay. He said, “that’s not my problem. It’s yours.” And then he ended the conversation and went inside the police station.
I was in disbelief and I felt like the heroes I saw in the police all my life had fizzled and there wasn’t anyone special that would help me help me and my mother – an elderly woman in need. I just couldn’t believe that he walked away from me without offering any suggestions or information about resources, or anything productive. He seemed to just see me as a nutcase and wrote me off and walked away.
Well, I was about to head home, and I remembered that the fire station was across the street behind me. I turned and walked over to them. TV shows like Emergency 1 and ER and other hero depicting shows went through my head and I thought maybe they would help. I was motivated to try. I was very worried about my mother.
Well, they wouldn’t help me either. Not at first. I had to explain as best I could. And I have no idea if they understood or not. I’m thinking not because even though they said they would meet me back at my home which was up the street and down a block (I didn’t have a working phone at the time, and so had walked there – it isn’t too far from where I lived) they didn’t act the way I expected. But they did say to meet them back at home.
So, I walked up the street to my home and saw the fire truck outside when I got there. And I opened the door and walked in, like I usually do because I lived there. The fire guy ordered me outside. I was resistant. And he threatened to put me outside physically if I didn’t leave. I was like, what the f**k. And I was angry because I was worried about my mom. And I couldn’t process that these departments (fire and police) were not being heroes and helping.
Instead of being told what was going on, the fire department called the police to come.
Now this is what was actually happening. Meanwhile I was in a delusional state and none of this was making sense to me. I was feeling like my rights were being violated.
But then, I had been struggling for almost a year and needed help desperately. I was actually in this window in which I was feeling like seeking out help because my mind just couldn’t reconcile my thoughts with reality. And I was planning on going to my doctor to see if I could get help and maybe try medication again. Meanwhile, the fire department had three individuals in the apartment and I was hopeful that they were giving her the medical evaluation I had asked for while I waited outside. Instead, the police showed up and brought up old news.
Earlier on, I had struggled with my mom’s condition because she hadn’t completely recovered from her surgery. She was much better than she’d been but was still struggling a bit. So, there we were two people with brain related concerns and as often happens, the one with the diagnosed disorder got taken to the mental health facility nearby. My mom never received a medical evaluation that day and I was carted off without being allowed to speak for myself (they wouldn’t let me talk) and put into “care” where they do that traumatizing stuff they do.
I was destroyed. My idea of heroes in the community had fizzled (and continued to do so over the next many months.
It took another year or so for me to have the opportunity to be with my mother at a neurologist’s office to ask about the “plugs” in her skull and whether or not they could dislodge and possibly cause an infection or bleeding in the brain. That was my big worry. I didn’t want my mother to suffer. That’s why I went to the police and then the fire department to seek help. She wasn’t seeking medical attention and I was just asking for help to make sure she was okay.
At one point the police there asked me if I ever had thoughts of harming my mother. I said that in December (it was early January) there were concerns, but… and I was cut off. I was trying to explain that those concerns were addressed, and I’d already been in the urgent mental health care facility for it. And I wanted to explain that I never had any intention of harming her, that I felt at the time (and thereafter) no interest in harming her. I wanted to clarify that I was afraid that in December, I left because I was afraid I might harm her, not through intention but by way of snapping. I didn’t want to snap. I was under a lot of stress, wasn’t doing well and I was easily frustrated. I was amped up from the steroids and had an uncomfortable energy. But I’d dealt with that at the facility already. And there was nothing to worry about.
Keep in mind that I’d had those injections. I had become restless. I wasn’t sleeping well and I had this energy where a lot of things bothered me. My mother was struggling too, and I wasn’t in a mind space to understand her needs. I was very touchy, and she was kind of triggering my upset. So, at one point I left with all my belongings because I didn’t want to be triggered and cause harm. I was worried for her safety. And that’s hard to share. But I was. And I had no intention of harming her, and I never threatened her or had any intention of being harmful. It was just this energy thing that came from the injections. But I’d written things on Facebook (that I now regret) which were taken out of context. I wrote them in a quiet way to ask for help. But no one commented, no one reached out to me and no one asked if I was okay. I wasn’t.
I was in the middle of the worst psychotic episode I ever had. I was weighed down by the belief that I was responsible for coming up with solutions to everyone’s problems and had to save the world and humanity. And my mother wasn’t doing well. And at the time we had some issues. She wasn’t able to hear my boundaries and violated my privacy a lot and was kind of abusive in some ways.
So here we were two people in need of help. And the police messed it up. Everyone thought I was psychotic because I was talking about the DBS surgery. The staff at the mental health facility put in my records that I’d said my mother had wires sticking out of her neck. Which she created out of what I’d actually said. I’d explained that the wires in her brain reached over the right side of her head and down her neck where it connected in her upper right chest to a device designed by Medtronic which helped control the dopamine levels in her brain.
They didn’t put anything in the records (I have a copy) what I talked about when explaining how compressed I was feeling. I hadn’t yet been so violated that I gave up on asking for help. I took the short time they gave me to explain as much as I could as fast as I could. The woman noted that I was manic because I was talking fast. The truth was that I wasn’t as manic as I was psychotic. But nobody was willing to listen to the facts of things because it was apparent that I was ill. So, I was psychotic, but I was speaking truth, and no one would acknowledge the truth I was sharing. They all just interpreted the reality of things as psychosis, when at that point I hadn’t started expressing any of my ideations.
I’m the caregiver of a 72-year-old woman who has advanced Parkinson’s disease. And I’m horrified over how people of authority handled the situation. They made it worse and worse for me and created a circumstance that left my elderly mother at risk. She has a high “fall-risk” that developed after the surgery. Her sense of balance isn’t as good as it used to be. And she has osteoporosis which means that if she falls, she could easily break a bone or two. And though I can’t be next to her every minute of every day to prevent a fall, I can be around to call for help if indeed she falls and hurts herself. But the police didn’t seem to consider that when they put me on a 5150 (an involuntary 72 hour stay at the locked facility). My mother was at home alone for three days, meanwhile I was being neglected, misread and traumatized at the hell of a place they call a care facility.
So again, the reason I’m sharing all of this is because people who have mental health struggles don’t really get help as much as they get stored and traumatized and mistreated, or neglected in these situations. This is something I’ll get into in another post sometime. I talk about it a little on my website: http://livingthetide.com/hospitalization.php People in official capacity tend to respond to mental health issues with coldness and hardness and strength… when what is needed is compassion, understanding and sensitivity.
This stuff swims around in my head sometimes and I feel powerless. I’m scared of the police now.
One of the points I want to make is – what will happen if I need to call 911 for my mom? I have a phone now. I can use it to get help. But these officers who arrested me for asking for help for my mother leave me feeling scared to see how I will be treated if she falls in her sleep (she has vivid dreams sometimes and falls out of bed). What if she has an emergency? Will I be hauled off to a mental health facility for calling for help? It happened before.
And I mean, I will have to call if something happens that requires it. I fear. And a lot of people with mental health concerns are mistreated when what they need is tenderness and kindness and sometimes a person to listen politely when explaining a brain surgery procedure so that they can understand what I’m asking for when I ask for a specific type of help. I just wanted the guys to touch her head where the leads were inserted and tell me if she is okay or if she is in danger.
I’m so disappointed that they mistreated me and especially wouldn’t allow me to speak. And I felt at the time that if I didn’t keep my mouth shut that I would be handled more roughly than they were already treating me. They scared me and harmed me emotionally. They confused the hell out of me and they didn’t try to help me. And in trying to, what (protect my mother from me?) they were not addressing the dynamic of the situation. They just separated us and didn’t ever respond to what I approached them for. It killed the hero in my mind and heart. And even though I’ve been very stable for over a year, back on medication and taking classes, getting A’s and doing a good job of taking care of my mom again, I’m just terrified on a certain level (which never goes away) that if my mother falls, I’ll be treated roughly when I call for help. I’ll be mistreated, disrespected and fear that they will be uncommunicative with me about her condition.
My mother and I get along very well now. She’s my best friend and she says stuff like that to me too. We are a healthy pair, despite my fears. It is a joy to be the one helping her, and I feel fulfillment from doing a good job of meeting her needs. Most recently, she had a medical issue and I helped her tend to it. I gain a tremendous amount of satisfaction from helping her heal from it and it made me feel warm inside to be allowed to help.
I believe that the police and fire department think they were just doing their job. I think they didn’t do it right. They were interfering with a delicate and complex situation without investigating past their own nose, and without caring for both people involved in the situation. And actually, they didn’t help either of us. They acted officially. That’s about it.
It feels like because my mother is elderly and I’m “young” at 45 that she was some kind of victim. They wouldn’t talk to me or let me speak. They turned me away when I was asking for help for her and then turned it into prioritizing one of two people based on age. I felt thrown away, violated, and criminalized because they didn’t have a clue about what was really going on, nor apparently the training for it.
My mother later filed for a restraining order because from that point forward, my energy was just so emanating that she felt threatened. She wanted me to get help and didn’t know how to make that happen. She got advice from the senior legal center to file the restraint rather than the eviction notice she wanted. She needed space from the energy. I understand how it might have been intimidating to be around. But she was in no harm’s way at the time. I had dealt with some of the edge from the injections and didn’t have any fears of harming her by way of maybe pushing her out of my way or something like that while walking by. I didn’t feel like I was going to snap. It is true that I’d had some scary thoughts and I posted about them. But I was just very tired and confused… and I posted to indirectly ask for help.
I was the one who needed caring for, as much as or more than my mother. I needed gentleness and an ear to communicate with so that I could get the proper care. The mental health system while it is designed to treat patients, hasn’t really reached the point of being a care system, though it is meant to be and is perceived as such.
Well… I love my mom and I love living with her and helping her and having this very unique opportunity to get to know her so well. It turned out that she is still very much the same person inside but has some different way of sharing herself with others. Once I was well again, we talked a lot about what happened and we both understand each other better now. And some of the behaviors that I was taking personally and getting really sensitive over are side effects of her surgery. I try to process what happened as well as the fears it left me with.
There were a few times when the police came to take me away because of the restraining order. But they (again wouldn’t let me speak) didn’t investigate or ask me questions. They just took me away. I was only there because my mother invited me. She’d said that the restraining order had been modified to allow me to be there as long as I didn’t bother her. So that’s why I was there… not because I was intentionally violating the order or was threatening or harming my mom.
Keep in mind that I was totally out of it then… still off medication. This is moving from the original interactions with the police in January into events that happened through the summer. The window for seeking help closed with the mistreatment. I stopped trusting people entirely. It was awful. And over the course of more than a year, I was in and out of the hospital 9 times.
And here’s the thing… they knew that I have bipolar disorder. The summer before (in 2016) I’d called 911 myself to get mental health treatment because I was agitated. I had an energy that was building. It was a side effect of the corticosteroid injections. But I didn’t have insight to put that together until after I was well, and so couldn’t explain that to the officers. It was about three times in the summer of 2016 that I called for help. Each time the police showed up after or at the same time as the fire department, who checked my blood pressure and oxygen and all that. The officers were kind and gentle and supportive.
But as soon as 911 was called on me, and I wasn’t the one asking for help, the table turned, and I was treated like a criminal and was mistreated and discarded. The officers that I encountered from that point on were cold and strong. There was no caring apparent and they were just focused on getting me out of my home.
I was still the same person. I don’t understand why they didn’t take an extra five minutes to help the situation. I’ve seen videos of officers taking time to help ducklings out of a sewer drain to reunite them with their mama. And I might have had an energy emanating that wasn’t as sweet and cute as the ducklings, but I was still worthy of better treatment and genuine care… the time of day, you know?
I had to go before a judge at one point. Everything is worked out for the best now, all things are settled and life is peaceful and productive. But I will never forget what the judge said, “the police know you very well.” And I remember what I thought and still agree with, they have met me and seen me in illness. They don’t know me. What they know of me is not who I am. I didn’t say anything. I was scared I would be put in jail or something.
Honestly, I never did anything wrong. I never threatened anyone, or harmed them, stole anything, or damaged anything. I just had this energy that people didn’t take to and I don’t blame them, really. I know how that energy felt from the inside. It was awful. But I think they should have taken the time to ask me what was going on. Communication can go a long way to resolving problems particularly when they relate to a complex mental health situation. And a little bit of time and explanation can help too.
It’s really kind of tragic what happened, and what I went through. But when I think about it, I always have some awareness that in a certain perspective, I had it easy compared to what some people experience. Many people with mental health issues have run ins with the police. There is a consistent story-line of lack of patience, lack of effort, and lack of compassion associated with these run ins. Police don’t really seem to have any sensitivity training. And they should. There are better ways to handle mental health issues than with force. It’s a part of the system that needs improvement.
My mother it turns out, is just fine. There is obvious movement of the plugs, but I was told eventually that it’s not life threatening. It was a relief to hear.
I hope someday that there is a number that can be called that doesn’t connect people to the police, but rather to trained professionals who do operate with compassion and gentleness when faced with a person who is struggling mentally. I come back to that it was the same police station a lot – the difference was if I called for myself, or if a call was made about me. When I called, I was told I was being proactive. When my mother called, I was treated like a criminal. We both had the same intention – to get me some help.
It’s the unknown and unpredictability I think that causes police to be harder on people with mental illness than on others… and lack of patience. It can take a while to comprehend a moment when things aren’t making sense. And I wonder sometimes how these officers and firemen would cope with things the other direction and it were them who were mistreated.
The thing about it is that all this is happening, and meanwhile, my mind had betrayed me so there was trauma on multiple levels. And no on seemed interested in helping me. They jus took me away from my home to somehow protect my mother which left her alone and at risk. It’s like they were just taking action without thinking or asking the right questions, or enough questions.
It’s all very hard to reflect on. I’m generally a very nice person and fairly balanced and all. I just have sensitive brain and it has kind of broken a few times. There is always a trigger. I’ve learned to avoid a lot of those triggers and though my back still has issues, I’ll never get corticosteroids injections again. I much prefer my peaceful life, even if I have more pain.
Quote for the day: “Good, better, best. Never let it rest. ‘til your good is better and your better is best.”