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In this episode, we listen to Melissa, a mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and may be triggering for some of our audience. (See below for transcription.)
The National Suicide Prevention Lifeline is 1-800-273-8255
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The Trevor Project – The leading national organization providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people under 25.
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Transcription of Just Ask Mom, episode 17
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Woman Speaker: Welcome to the Just Ask Mom podcast where mother share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today, we will listen to Melissa. A mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and maybe triggering to some of our audience.
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Tammy: Hello. Can you tell us a little about yourself before or outside of parenting, what do you love? Who are you?
Melissa: My name is Melissa and I’m a mom here in rural Iowa. I farm with my husband in a small community. I love the environment. I love watching our children grow. Just being outdoors, reading, that kind of thing.
Tammy: You like watching lots of things grow, it sounds like.
Tammy: That’s awesome. I want you to pretend that you’re talking to peers of kids that are going through mental health difficulties and their parents. What would you like them to know about your family’s experiences?
Melissa: I would say that our experience as parents with a child with debilitating mental illness – would be to just maybe ask, be inquisitive. Try and find out, not in a nosy type of a way but just– so maybe you can learn a little bit more about the situation and not just shut the doors essentially because it’s very challenging on a daily basis. When you’re feeling the doors slammed by parents or peers that don’t necessarily know the story, it just makes life that much harder. (2:00) My child has a lot to give to this world. He’s beautiful and he’s kind but he just struggles with certain things. But I think his life as a youth could have been much easier if some closed doors would have remained open.
Tammy: You bring up a really good point because a lot of times, if our children are sick, let’s say if they have a physical illness or the measles or what have you, people would naturally say, “Oh, how is your son doing?” Right?
Tammy: They would naturally ask. Maybe people are afraid to ask us or talk to us. They shut down or shut us out sometimes. Is that right?
Melissa: Yeah. I would say that. I know it is not the exact same thing but I spend a lot of time thinking about it. I kind of wonder if on some level, it’s how people who are diagnosed with AIDS in the 80’s feel.
Melissa: So instead of feeling that love and that warmth when they were diagnosed with something. They were judged and I feel that very much in the mental health space here. In a lot of ways, it’s how the kids and the patients are treated. How many cardiac patients or cancer patients do you know that need to go from one doctor to another? And they’re transported in the back of a sheriff’s car in handcuffs.
Melissa: That’s how they’re transported.
Tammy: When they’re most vulnerable and in the most pain.
Melissa: They’re actually taking– yeah. They’re handcuffed. I know my son had a really hard time one time because he didn’t even have a seat belt on so that gave him anxiety. The person was driving and on his phone. I think you just feel very out of (4:00) control, anyway; when you have something like this.
Tammy: That’s a really good point. Even when you think about all the years, all the trying to help your child, what has been a barrier to getting the help your child needed? Something that– it’s a barrier or just didn’t work.
Melissa: His situation is very severe. I think some of the barriers that exist are constant therapists that are a good quality. When you’re living in a small space, people come and go. There’s a high burnout rate.
Tammy: So consistency–
Melissa : Consistency
Tammy : — really no consistency.
Melissa: There’s a very little consistency but I would say the same thing even with psychiatrists and getting meds. Because currently, the situation is now he’s an adult, and in the acute care setting you go into the hospital and– he has severe depression. We’ve been in and out of the hospital in an acute care setting maybe thirteen times in the last eight years and in the last six months probably five or six times.
Melissa: The problem is that continuity of care because you go into an acute care setting and his is suicide; just not wanting to live. You’ll see a whole new team of medical professionals and they’ll have an idea of what’s happening. He’ll go into another space and then they have their own idea and their own med recommendations. Unfortunately, for the patient you’re really not getting the (6:00) highest quality of care. I will say that our experience in the last six months has been even more challenging because he went to a hospital in Central Iowa. When I got there, they had actually prescribed him a medication that he had overdosed with.
Tammy: Already before they prescribed it?
Melissa: But now that he’s an adult, I’m not given all of the information and so he was discharged with 90 pills that he had already OD’ed on as a youth. Two weeks later, he OD’ed on them and ended up in that same ICU. When I talked to the behavioral health staff, I said, “Did you look at his history?” She said, “We’re not required to do that. That’s not something that we automatically do.”
Tammy: That’s shocking when you think about.
Melissa: Well , And my reply to this person was, “Well, okay. So, if I came in here with a cardiac problem–”
Melissa: “–or you know some other chronic issue, would you not look at maybe some of my past history; even meds, anything? Just to make a better and more informed choice.” She said, “Well, on this floor, we just don’t do that. It’s not our policy.”
Tammy : Oh–
Melissa : In Iowa, we’re facing a really challenging time getting access to care maybe more so that other states. But — I just looked at the woman and I just said– no things have changed and we are seeing less and less help. I can see the acute care institutions are overwhelmed.
Melissa: They are completely overwhelmed – but I looked at her and I just said– I think what I’m hearing is now these people don’t have access to chronic care – which they don’t as an adult. (8:00) Currently the situation is that these people who are the most vulnerable are now going to you for an acute care setting, which is also very limited. We’re not even giving them that quality of care.
Tammy: But then even afterwards there’s no sub-acute to keep them well. They just send them up right back into acute again.
Melissa: Right. Right. Or discharge them and refer them again to outpatient services.
Tammy: You mentioned something that’s really important and you’re at that key point, you could speak to it. You dealt with it when your child was a minor and now he’s no longer a minor and your role shift whether you want it to or not, right?
Tammy: Can you speak a little bit to that? When your child, well this differs too because sometimes it’s even 12 when they say now the kid gets to have more input but —
Melissa : Yeah. Yeah.
Tammy : – at least when you’re the mother of a minor child, you can tell the doctor, “Make sure to remember this. Remember this.” But you don’t get to do that anymore, do you? How does that work?
Melissa: You don’t get to do that. In fact, at this facility that I was just talking about, once this discharge happened. I wanted to talk to the psychiatrist. I said, “Okay. This is the second admittance. This is what’s happened and it doesn’t sound like you have all of the information.” And I’m like, “I would love to– just like a five-minute conversation to make sure that you have the entire picture to give you history.” He wouldn’t even talk to me. When you’re dealing with a young adult, I personally didn’t want to take away all of his choices and make all of those choices for him, but I did feel I could at least make sure that the physician heard the story and had all the pieces to make a more informed decision. Now, moving into adulthood, (10:00) I would say it’s much harder because you’re hoping that your mentally ill child is now providing them with all of that information.
Tammy: But how can they do that when they’re in crisis themselves? It’s an expectation that seem so unfair that the system places on that person.
Melissa: Right. Right. Because of laws and things, common sense doesn’t often times trump some of those things. My kid is smart. He’s been in a PMIC twice. He’s been in an acute care setting at least a dozen times and so he knows what a psychiatrist wants to hear.
Melissa: And he doesn’t always want to be there. He can use those words to just get discharged.
Tammy: Right. For those who don’t know in Iowa a PMIC is a Psychiatric Mental Institution for Children – because in different states it goes by different names, like residential long-term care. – So he knows what would to say, he knows how to play the game.
Tammy: What has worked in getting help for your child over the years? Is there something that was helpful, that would be good if there’s more of that? Is there something along the way that you thought was positive?
Melissa: I wish I had a lot of positive things to say today, I don’t.
Tammy: Yeah. That’s a reality sometimes.
Melissa: I just don’t.
Melissa: I think — I think I’ve actually seen a decline in the quality of care in our state over the last ten years.
Tammy: It’s so discouraging.
Melissa: Yeah. I think — When we had our first experience with the PMIC, that residential care for youth, the average stay was 10 to 15 months. Because of insurance and privatization of insurance and things like that, his (12:00) second stay was limited to I think six months. Even in month like two or three, they were trying to push your child out the door. A lot of kids could really use a higher quality of care, just a little longer period of time. In my son’s experience, he was discharged quickly enough that he didn’t have time to test some of the medications, like an anti-psychotic that is pretty severe, and so they did that after discharge, because insurance tried to get him out the door. It just so happened that he had one of the life threatening reactions to the medication
Tammy: How frightening
Melissa: Yeah, he went into a cardiac arrest type of a deal. But that does not have to happen.
Tammy: No it doesn’t.
Melissa: That does not have to happen. He doesn’t have to have the means to commit suicide because they choose not to look at his health history.
Tammy: And just to have the safe place to do those med changes for this kind of severe case is imperative.
Melissa: Yeah, I mean we are not talking about Tylenol here. These are some really, really serious medications.
Tammy: So we like to ask this because in our experience, in my experience, it changes moment to moment. In this moment, where are you – are you swimming, are your drowning, are you treading water? How are you feeling in this particular moment?
Melissa: I love that this is a question on here because I often times refer to this as like you are drowning. You know not all of the times you get to breath, but that is really kind of what it’s like. People are saying why (14:00) are you not advocating a little more, why aren’t you taking more time to do this or time to do that, and most people don’t know what is going on behind the scenes.
Tammy: Right, that it takes all that strength just to get that gasp of air before you go under again.
Melissa: Right, yeah, I can barely get up, put on my clothes, and I have two other younger children that I am trying to get out the door and smile for – just, you know – yay – it looks like Pollyanna – but I think that is a really good way of looking at it. There are a lot of parents out there – and this is really, really challenging – and when we look at Public Schools, there are a lot of things that could very easily be changed to help parents that feel this way. Yeah, that is why I would really like this episode to go out to all of you who do not have children with mental health issues to just give it a second thought on how it might feel to be in our shoes.
Tammy: Exactly. So what do you do to take care of you? What is your self-care routine? Because what I am hearing is – and I can relate too – is that that it takes everything just to keep everything running, just to keep going. Is there something you can do to take care of you, or, and it may be more appropriate what is your survival technique – how do you keep breathing (laughter) because that is a big accomplishment?
Melissa: Yes it is! It totally is. We have dance parties some nights – we crank up the music – that’s exciting – with our younger kids. I like being outside, we do things like that. But the reality (16:00) of the situation is that there is not a lot of time for self-care, which I know that is the worst answer of all
Tammy: But it is a real one.
Tammy: Yeah. As hard as all of this is, I bet there is at least one funny story that you have that makes you laugh a little bit. It is hard to think of one, but is there something that makes you smile when you think about “oh my gosh that was ridiculous!” – even if it is not funny but it is so ridiculous that it is s so surreal – like “yes that happened”?
Melissa: Tammy, I am in such a bad place, I cannot think of anything funny.
Tammy: That’s ok. You don’t have to.
Tammy: If you can’t that’s ok too, because I think we need to hear that. We need to hear that it is not always ok – because when we are in that place – I know it’s hard for me to turn on the radio or the TV and only hear stories about “Oh, they overcame this problem and it’s so great and they’re doing this” and that is all you hear. So when we are in that low spot, it feels like we are not allowed to be there. But so many of us are there, so often and we just keep it quiet. It is ok if you don’t have something to laugh at right now, that’s ok too.
Tammy: I don’t think you are going to be the only at this moment who is like, “I can’t think of anything.”
Melissa: Yeah, I don’t know. The last few weeks have been incredibly challenging for our family. If we had this interview a month and a half ago, maybe I could find something wonderful. But, the mental health crisis in this particular state – it’s bad. Like I said, in six months he has been admitted to an acute setting six times. (18:00) This last time was because he took one of our vehicles Facebook Live to suicide attempt by trying to go off the road, and had he not unbuckled his seat belt, he would have died. We did a committal and advocated for him to be in this acute care setting longer. They discharged him with another out-patient referral after six days – which has been what has happened for the last six months. That is a lot and it is very heavy. So I am not feeling overly hopeful.
Tammy: What gets me when I hear this story and so many others like it – no matter what this would be horrendous to live through – but it just seems to make it so much worse when we know it doesn’t have to be this way in terms of help. There is a way to help this, to help people stay safe when they are in this place. No we don’t have a cure for severe depression that we can just wave a wand and make it go away, but we could as a society keep people safe and loved, and families loved and supported – instead of stigmatized – we could do that
Melissa: We could that.
Tammy: We could as a community put our arms around people going through this and hold them up
Tammy: I think that is what makes this more painful. Is it doesn’t have to be this way.
Melissa: It does not have to be this hard. No.
Tammy: It would be hard no matter what, but it doesn’t have to be this lonely, it does not have to be this much of a struggle (20:00) to just get people to listen.
Tammy: I want to thank you for your courage for speaking today so people can listen and can hear about what it is really like, because I think we don’t’s say it publicly enough so people can hear. Because it is awful, but it doesn’t have to be this way.
Melissa: No, it does not. No. My only happiness would be, I guess if I can find a laughable moment, is if you can find a group of moms and get together once a month and tell your stories to each other because I think you need that – and you will come up with some doozies. That has been helpful.
Tammy: Support is so important. Just to have someone to be there with you, that, I think, is so important.
Melissa: It is, but I have even seen in our small community where I know a couple of moms facing things similar to me and they don’t have anybody. Like you said we just need to put our arms around each other and it can get better.
Tammy: Thank you for being here today. I really appreciate you sharing your story with us. I really wish you and your child and your family all the warm, healthy wishes to make it through this difficult time so we can laugh together next time.
Melissa: We will laugh. Thank you.
Tammy: Thank you so much.
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Women Speaker: You have been listening to “Just Ask Mom”, copyrighted in 2018 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is “Olde English”, written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFrontline.com or subscribe to “Mothers on the Frontline” on Itunes, Adroid, Google Play, or (22:00) Stitcher.
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