Help for Healing

Bitter & Sweet, living daily with grief


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Frustrating “Treatments”

It is well-known that sometimes when you treat a condition, you create another problem. All you have to do is listen to the medication commercials and hear all the possible side effects. My dad went through this recently. He had a hernia operation. That was successful, but for no known reason, it threw his bladder into chaos. He got a foley to relieve that, then got a UTI (most likely from the foley) and developed severe sepsis. The only way to treat that is with antibiotics, but they also had to drain the urine with the bacteria. Foley back in.  If that’s not a vicious circle…

I was recently talking to a close friend about depression. I probably have known this for a long time, but I had never consciously articulated it. I don’t know any official statistics, but I think the majority of people who suffer from more severe bouts of depression tend to isolate themselves. Sometimes you don’t know for days or even weeks because you don’t see them or talk to them. For whatever reason, I am the opposite. I am like, “Hey! I’m depressed. I need you to get over here ASAP.” I have no idea why, it’s just the way it is.

After recently falling into record lows for myself, as well as interacting with people I love who also struggle, I am reminded of what I have been telling clients for years. Medication is definitely helpful and probably even required. There are a whole lot of other “interventions” that have been deemed useful as well. Most of them are common sense things that relate to health in general. Eat healthy (avoid sugar!). Exercise. Do activities that you love and/or fill you with pleasure. Interact with support people.

Here’s the frustrating part. How the heck do you do any of those things when you are depressed? They are helpful in preventing depression. They might even be helpful if you struggle a bit with the blues but don’t really cross over into actual depression. But if you are really depressed? Forget it.

Eat healthy? Lots of people eat nothing. How can you when you don’t get out of bed? Lots of people eat crummy foods. I go back and forth between the two. Eating healthy requires more prep and work. If I am lucky enough to move around the house, I’m going to grab what is easy. AND… I’m going to eat what I like instead of what I should. There’s another vicious cycle. Carbs taste great on the way down, sometimes briefly lifting my mood. Then you crash even harder after the sugar high goes away. Plus you feel bad about yourself because you  know you are going to gain weight and not feel so great about your attractiveness level.

When I crashed a few weeks ago, I had gone out to the pool. I was out of earshot of Frankie that way. Plus, I didn’t feel as bad about the friends who were staying with me if they were sitting in the sun. The problem was, I knew I was starting to get sunburned. It was also contributing to my light-headed feeling which then was adding to my panic symptoms. I knew it was happening, but I couldn’t move. Eventually, my peeps took a beach towel or two and soaked them in the pool water. They laid them over my body so I would at least stop getting burned.

If you’ve never experienced this kind of debilitating depression, that probably sounds crazy to you. How could you not just get up and walk back to the house? I remember a brief conversation about moving to the gazebo but that would have required moving furniture around. The mere thought paralyzed me. Way, way too hard.

Simple solutions. Impossible to do at certain moments in your life. Sure, do these things to get out of depression. Just know you probably can’t do them if you are depressed. Frustrating, to say the least.

If you love someone who struggles, please just be patient. Listen and listen some more. It will be tempting to offer a host of suggestions that would seem simple and possible to the average person. But trust me when I say, there are times when you just can’t.

Thanks again to my many friends and loved ones who sat and sat with me, and knew to put cool coverings on me. If you are loved by someone who can accept you at your lowest points, you are truly lucky. (Of course, when in the middle of your struggle, you might know it intellectually, but it won’t make a difference in the quality of your life in that moment.) That’s ok, because those kind of people stick by you anyway.


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Mental Wellness vs. Mental Illness

I think mental health is on a continuum, and every one of us fits on it somewhere. This is one of those topics where we talk in divisions and categories, but in reality the lines are not that concrete. The lines are helpful to discuss issues with each other, but in real life? It can be very hard to distinguish between them.

I am in private practice. Most of the time, my clients consist of people like me. I am functioning, capable, and relatively healthy. I struggle with depression, but overall I manage well. I see a counselor and plan to for the remainder of my life. I don’t always NEED counseling, but I benefit from it. I like having someone to bounce things off of. My clients are generally in the same “category” – they don’t necessarily NEED counseling to function, but choose it because it is helpful.

Oddly enough, I had never thought of a simpler way to express that idea but recently I was meeting with a UB student. There are med students who have the option to choose an elective called “Spirituality and Health” or something like that. These students meet one on one with several key people in our community to get several different perspectives of how spirituality affects our health. I am one of the panelists the students see. Recently I was meeting with one rather delightful student who happened to want to go to into psychiatry. It was a double connection with me, being in the mental health field.

Anyhow, she said she had read about the term “mental wellness.” She’s a good student so she wanted me to be sure and say she didn’t get credit for coming up with the term herself. I loved it. That’s it. People like me are pursuing MENTAL WELLNESS. People like me are helping other people pursue mental wellness.

I got an extremely huge education this week about mental illness. I spoke with some higher-ups and got a big clarification about hospitals like ECMC and what their goals and purposes are. The statistics I got were staggering. The amount of people a facility evaluates and the amount of patients that are actually admitted presents an incredibly huge gap. The hospital is only equipped to see the very sickest of the sickest. They just can’t meet the needs that the larger majority of people in need represent. My question is, then where do we tell our clients to go?

There isn’t a good answer. I am currently looking into some partial programs to educate myself further. It’s a huge problem. It’s what I encountered last year with my daughter. It’s what I encountered last week with my client. It’s what virtually all of my colleagues struggle with. What is there for those people who don’t fit into the “mental wellness” category? They really aren’t functioning well. Counseling and outpatient psychiatry isn’t enough. But they aren’t completely mentally ill either. They aren’t talking about aliens in their stomachs or wielding dangerous weapons around and a serious threat 98% of the time. There just isn’t much in place for them. There just isn’t. And it’s heart-breaking. I feel like I’m watching a disaster in the making. Worst case scenario is people continue to worsen and end up being in the “sickest of the sickest” category. Perhaps it could be prevented if they would get the proper help. Best case scenario is they don’t worsen, but live a life with almost zero quality. That pretty much sucks too.

Not sure what the answer is. I do know I will keep looking and fighting and arguing and trying. It’s time-consuming and non-rewarding most of the time, but I know of no other way. So if you are one of those support people in my life, be patient when I need to talk and vent and talk and vent. You need someone to put a pillow on the wall sometimes when you are banging your head into it. But I would rather do that than give up or become so disenchanted or jaded that I just give up. My daughter deserves better than that. So does my client.


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Flashbacks

Sometimes we experience things in life and it becomes a trigger for something that happened in our past. If we are educated about triggers, we may be completely aware that it is happening. Having insight though, doesn’t always change the intensity of the experience.

Last year about this time of year, I did a series of blogs on the mental health system based on my experiences with my daughter Emily. The purpose was not bash the mental health or medical system, but just to share my experiences in hopes that it would be helpful someday to someone, and who knows? Maybe a small, tiny pebble of change might happen in the large mountain that needs to be moved.

Recently, I had another experience and I spent the morning being painfully aware that I was reliving that experience again. The details are different of course, but there are two things happening inside of me that are so real I could touch them.

First, is the utter helplessness and powerlessness I can feel as a human being. It is so strong it makes my head spin and it is maddening. I found myself again knowing what someone needs, but also knowing that I had no idea how to help her get it. She has been in and out of the mental health system for much of her thirty years of life. In my (professional) opinion, she has not ever been properly diagnosed and therefore not ever properly medicated. She re-lives her self-destructive cycle over and over again and then is filled with self-loathing because she can’t change herself. She has been decompensating at an accelerated rate over the last month and has become a danger to self and others. There is a spouse and a beautiful newborn in the mix.

There is literally no system in place to get her what she needs. She needs a very thorough evaluation. That’s not how the system works. But I was in the ultimate catch-22. I couldn’t do nothing. I couldn’t. That would be unprofessional, unethical, uncaring. I couldn’t let her go home. Yet I knew that putting her through the system might not help either.

I spent three hours with her, canceled all my other sessions. Called the mobile unit. I was scared, sad, worried, sickened because I care so damn much. I didn’t just go the extra mile. I went the extra six miles, because that’s just what I do. And in the end, her last words to me before getting in the ambulance were: I never want to see you again. Now I will embark on several days of documenting everything that happens. I will spend hours on the phone trying to get a different experience for her. And I am painfully aware that my chances for success are slim to none. The only analogy I can come up with, is that going to work is like walking into a room and purposefully banging my head on the wall. But I have to do it. I have to do everything I can for her, even though I am doubtful it will help.

Utter helplessness and powerlessness. What the hell do you do with that? I know I am doing my best. I know it’s not my fault. That isn’t the struggle. The struggle is the anger and pain from watching a system go wrong and a very real person and family suffering because of it.

The second part, is dealing with the last words. I absolutely get it. I know she doesn’t REALLY hate me. I know part of that frustration and anger is directed at me because she feels safe with me. I get that part of it is because of the mental illness. BUT IT STILL SUCKS. And I went through that with my daughter too.

Here I am, being the single, solitary person who is truly advocating intelligently in her corner, and I’m the bad guy. Yep, that’s what my daughter did too. No amount of self-talk and insight makes it hurt any less. I go through rapid flip-flops of sadness and anger. Why do I do this? Why do I repeatedly do this?

Because in my world, in my brain, in my head, in my heart, I have no other choice. Without thought, I dive in and I love and care.

But I have to tell you… THIS is why I want to work at Family Video when I grow up. I’m not even kidding.


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Successful Failure

Recently, I went to two different professionals for assistance in dealing with the after math of my daughter’s situation. Specifically, I want to know how to handle it when you have given something your all. I mean, you have really gone beyond the call of duty, done more than most people could have possibly done. But… you were still ineffective. In spite of all your knowledge, your fierce heart, and your relentless pursuit, you still weren’t able to make things happen the way they should have happened. Even though I know I was up against a system larger than life and broken to the core, I still felt like a failure. How do you accept defeat?

The first person I talked to was my first spiritual director. Her “stance” was to assume (without knowing many details) that because of my intensity, I probably offended people and overwhelmed them. She said my kids may have asked for my help, but they were probably not prepared for the tsunami that they received. Yes, she actually compared me to a tsunami. Now when I hear that word, I don’t think of anything good. I think of brutal destruction, devastation and death. Holy shit. Could that be my problem? I left with an even heavier heart than I came in with.

Thank goodness I had my session the next day with good ‘ol Scott, my therapist of 15 years. Some may same it’s time to make a change. I vehemently disagree. He not only knows me, but he knows my husband and my children. And he has seen me interact with them dozens of times, even under great distress. I trust his opinion, which is very informed and well-rounded.

Scott said that in no uncertain terms, has he ever experienced me like a tsunami. Even when the other party deserved that kind of response. I show remarkable restraint and patience and seek solutions whenever possible. I’m intense all right, but it’s internal mostly. I am incredibly hard on myself and feel deeply and passionately, which makes me try that 120% when others give up long before that.

Then he gave me something to wrap my head around. He said when he thinks of all that has happened in Georgia with my daughter and her “treatment team” (I use that term loosely), he is reminded of the movie Apollo 13. He said that mission was a failure. No one landed on the moon. Objectives not met. But the fact that everyone came back home alive, was nothing short of a miracle. It was the tenacity and intelligence and passion of a group that never gave up that brought them all home. THAT IS A SUCCESSFUL FAILURE. While the ultimate goal was not reached, those men should be proud as hell of their success.

I’ve thought about that a thousand times since my session and it has helped tremendously. While my daughter is now (in my opinion) mis-diagnosed, on the wrong medicine, cycling through mood swings and symptoms, and yet another medical professional has informed her that her mother is a pain in the butt… and every professional “helping” her has refused to talk with me in spite of her signed release, I can’t consider myself an utter failure. Yes, I was hoping to change the course of her treatment and thus change the quality of her life and my grandchildren’s. That objective was an utter failure.

But damn it, I gave it my best shot. And my best shot is pretty remarkable by most people’s standards. And maybe someone else will be helped by my blogs. And most importantly, my grandson is seeing a counselor at his school. She emails me every week and lets me know how he is. She delivers messages between us and he is now in a self-esteem group which he desperately needs.

SO THERE. I am a successful failure. And I’m slowly becoming ok with that, maybe even proud.

P.S. I politely resigned from spiritual direction. I think I will stick with my beloved Scott.


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Brick Walls

Part Five

Thanks for all the comments and support. People get outraged when they hear what happens and the assumption is that something can be done about it. The reality is, probably nothing will ever happen to that doctor or that hospital. They will have to investigate because I filed a complaint, but the chances of anything actually changing or being done about it, are probably less than 2%. I’m not exaggerating.

Anyhow, I think I’m done with the day by day accounting. It’s just too depressing. So again, just a couple more highlights.

When you are admitted to a psych unit or facility, they take all of your belongings. Emily told us that the hospital finance person had approached her at least three times to tell her she needed to pay the thousand dollar deductible in order to be discharged. This upset her because she kept explaining to them that her purse had been taken so she didn’t have her credit card to give them.

Now understand, Spencer and I are having to sort out if Emily is comprehending things fully or not by this point. Did that really happen? Spencer handled this one. He called their insurance company and was told that of course that was not an appropriate procedure for the hospital. The insurance rep called the hospital and kept Spencer in on a three-way call. They got a hold of the woman directly and she verified that indeed, there was no misunderstanding. That is their protocol at the hospital. The conversation got pretty heated but the gist of it, was that this is NOT appropriate for three reasons:

1. Emily is not the primary insurance holder. Any conversations about deductibles or any other coverage questions should have gone through Spencer.
2. It is not normal procedure to trouble a patient about finances while they are currently still being treated.
3. It is just completely lacking in common sense when the patient happens to be having mental health issues and hasn’t even been coherent for 48 hours yet. Really??

Spencer made it clear as well that when his wife was discharged (which couldn’t be soon enough at this point) they would not be given a dime. He had been paying on his deductible all year, and the hospital would have to do what every other medical facility has to do. They bill the insurance, and then the patient pays the difference. That is just the norm and it absolutely makes logical sense. The finance person finally reluctantly agreed and then said she was hanging up because she thought the conversation was getting hostile.

Don’t even get me started with health insurance. I have heard so many ridiculous stories or experienced them myself that I could write another book just on that. Honestly, is there no common sense anymore? I have no idea if the insurance company will follow-up with that hospital, but if it were me, I would be extremely concerned to know that patients are being pressured while still in treatment. Let’s face it. People pay the money to get out of that hell hole. When the hospital finds out that the patient has already filled the deductible, what do you think the chances are that the hospital gives the money back to the patient? Now I don’t consider myself cynical or paranoid but let’s be honest. The hospital has probably ripped off thousands of patients. And oh yeah, let’s remember these are patients who also happen to be mentally unstable. That’s really special.

I recently got feedback that I can come across as bitter. I disagree. I also got the feedback that I seem angry, not bitter. There really is a difference. I am pissed off at the things I see. And I’m beyond enraged that I can’t seem to do a damn thing to help make it better. No matter how hard I try.


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The Mental Hospital

Part three.

Emily was taken to a mental health facility at 2 AM, early on Monday morning. Spencer and I went home as we were told we wouldn’t be able to talk to anyone til the next day. So Monday we got in our car and made the hour and a half trek there. And so it begins.

We enter the lobby and we are told to have a seat. A phone call comes through the lobby phone. Spencer wants to try to handle things as it is “his wife” and I am trying to give him the space to do so. I can only listen for so long and then I have to insist on him giving me the phone. Enter Hilary. She is Emily’s case worker. I tell her I’ve just flown across the country and then driven an hour and a half and we would like to meet with Emily’s treatment team. She curtly informs me that she has no time to meet with us because she is too busy. I politely but firmly tell her that is an unacceptable response. She again curtly informs me that we will be contacted when they are ready to meet with us.

I know my advocating abilities are going to be challenged to the max. I tell her I’ve been to the website, and my daughter is supposed to have a treatment team of six to eight professionals working on her case. If she is too busy to meet with us, then someone else on her team can talk with us. It doesn’t matter who. She gets frustrated and hangs up.

Shortly, another phone call comes to the lobby phone. Again, I attempt to let Spencer handle it but eventually I have to insist on the phone again. This time it is the psychiatrist. I tell him I expect a face to face meeting. He tells me “it doesn’t work that way” and he will talk to me on the phone. I again firmly explain that is totally unacceptable. I have flown across the country after the state mobile unit requested my presence. (These are buzz words that I was coached to use but were also truthful.) After another 90 minute drive we are requesting to talk to a member of the treatment team in person and that is not unreasonable. Eventually I have to pull out the bigger guns.

“I have already spoken to the Northern Alliance for the Mentally Ill, in fact with president so and so. He has given me the direct number to the Commissioner of Georgia (which is the highest level you can go) and has also provided me with three attorney names. Now I would like to speak in person to the people who are treating my daughter.”

Suddenly, he had time to meet with us.

Now I had been on the phone all morning. We weren’t sure if Emily was going to sign a release for them to talk with me, but she had indeed signed one. That meant there was absolutely ZERO reason for anyone on the entire staff to not freely give me any and all information I had asked for. I found out during the drive, that if Emily hadn’t signed a release, we would have been shit up the crick.

Think about it. My daughter was 10-13’d into a psych ward. That means she was deemed not of sound mind. But the hospital policy is to ask the committed patient whether they want anyone involved in their treatment. The Alliance explained to me there are currently two bills that haven’t been passed yet to address this very concern. I’m not intending any disrespect, but what common sense is there to that policy? If a person is deemed incompetent to make decisions, the family still has no rights or say? The woman who was in the midst of a psychotic episode was able to call the shots. It would not have mattered that when she was still lucid, she told the caseworkers she wanted me in Georgia to help with care. COMPLETELY SENSELESS.

But luckily, I didn’t have to fight that battle because my daughter happily signed a release. She WANTED me involved with her treatment. However, the hospital acted as if I wasn’t allowed to be involved at all. This ridiculous set of phone calls in the lobby of the building where she was hospitalized was just the start of a whole bunch of nightmares inflicted by the hospital.

Anyhow, I got sidetracked. Doc, Spencer and I enter a conference room. I politely ask the doc if it doesn’t make sense to meet with us seeing as they have had my daughter for over 12 hours and no one has even spoken to her yet. I could explain what brought her to their facility, and also crucial information about family history that could help tremendously. He decided that was a good idea and got a piece of paper. We unfolded the weekend of events for him and I also explained the lengthy family history of severe bi-polar disorder on her paternal side. He took a page full of notes. Then he explained that 99% of their patients come in alone and have no family or support system. I told him that helped explain his behavior, but clearly Emily is not in that scenario. According to their website, they have a large family treatment component. Emily is lucky enough to have family that loves and supports her. In fact, she has family that is also educated in this field. I am a Licensed Mental Health Counselor, practicing in the State of New York.

I asked if we could see Emily after making the long trek there. We were told we could see her for one hour on Wednesday evening. What? How does that plan fit in with family treatment? I tell him I understand that it hospital policy, but that it truly makes no therapeutic sense to me. My daughter is sitting in a room, interacting with no one, when she has trained family that loves her. How is that in her best interest?

He said they make exceptions for little kids and I told him I suspected he could make an exception for us if he wanted. He did finally agree to giving us 30 minutes with her. I told him I had planned on staying in a hotel near the hospital so I could be there as many hours as possible. He made it clear that would be a total waste of time and money because I wasn’t going to be near her except for 60 minutes on Wednesday.

Perfect.

It was a long drive home and I was already exhausted from the hours of phone calls and the fierce advocating I had to do right from the get-go. Yikes.


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From Neurosis to Psychosis

Part two.

I left off on my last blog when I arrived at the hospital at 1:00 am. Spencer (Emily’s hubby) had told me on the phone earlier that it was like someone had possessed his wife’s body. I was about to see firsthand what he meant. Emily recognized me. She knew my name. But there was no response to seeing me like she understood I had just flown in and I don’t usually get to see her this time of year. The interesting thing, was that she used names of actual people from her life, but just didn’t associate them with correct reality-like details.

One of her favorite repetitive phrases at this time was, “You gotta go,” accompanied with a wave of her finger. One hospital staff would come in and she would tell them they were much too fat and they had to go. (They were not necessarily overweight in reality.) She also complained repeatedly about the filth she was seeing in the room, and there many filthy people who “had to go” as well. She would point to the floor and say, “Don’t you see that? Don’t you see that?” Only there was nothing there to see.

She knew her four-year-old Aubry’s name and age, and she knew her eight-year-old Parker’s name and age. But then she would explain to me that it was crucial that I understood that each of her children were in actuality herself and Spencer. Again she would ask me, “Do you understand what I’m trying to tell you?” And of course, I couldn’t understand. I had known from training that you don’t ever support a delusion or hallucination. The right thing was not to agree. But at the same time, it seemed equally insane to argue with a person about reality when they were clearly not in touch with it. So I mostly just listened, didn’t correct her, but admitted I didn’t understand when she asked me directly.

One of the saddest moments of all for me, also serves to best explain the level of her confusion. Eventually we will all chuckle about it, but at the moment it was purely gut wrenching. I was watching my daughter suffer emotionally because of what she believed was happening. She was weeping and telling me about Henry. “Darcy, you just wouldn’t believe what they are doing with Henry. They are treating him like a dog. Like a dog. Like a damn sheep dog. It’s horrible and we have to help him.” And she was so distraught because of the injustice to Henry and was genuinely sobbing for him. The problem? Well, Henry is her sheep dog. He really is a sheep dog.

When the ambulance came to take her to the treatment facility, at first she was not going to cooperate. I asked them what would happen if she didn’t go voluntarily. I was told they were not allowed to touch her. If she didn’t go with them, she would have to be police escorted. They would handcuff her and the whole affair would probably be extremely traumatic for all of us. Thank God we were able to reason enough with Emily that she eventually got up and moved to the stretcher without incident. We said goodbye to her in the parking lot and went back to our car. The hospital she was going to was an hour and a half away from where they lived. We were told we would not be able to see her until the next day, so there was no point in following the ambulance. They did however, say they would do their best to get the hospital staff to call us when they had her checked in. They couldn’t guarantee they would, but they would try.

So we went home, disturbed, worried and scared for the woman we love so dearly. Of course, the treatment facility never called me. Unfortunately, that would turn out to be the least of the disappointments we were about to be encountered with. I had looked at their website on the way home and told Spencer I was really happy with where they were sending her. It was a real treatment facility, not just a stabilizing place. She would have an impressive treatment team with several different professionals helping her, and most importantly family involvement was a key part of their protocol.

I don’t think I’ve ever seen a facility so totally and completely false in the representation of themselves. But more to come in part three.