Friday, August 28, 2015

Tell Me Again, Please, What Am I Trying To Do Here?

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In the spirit of trying to teach Thomas independence, Dr. K. wanted me to have Thomas make another dinner. Thomas chose Hamburger Helper, a meal he's made at least two times before, and I thought to myself,

"Okay, this time I'm staying out of it. This time I'm going to sit down and watch the news and leave him to prepare the meal."

No sooner did I sit down and from the kitchen came,

"Mom? I need your help. I'm really having a lot of anxiety about this. Will you come in here?"

I got up to head into the kitchen but I'll be honest, a part of me was mad. I didn't understand the level of anxiety that he had for a meal he's made before. But I went in there and stood and watched as he began making the meal. Every step of the way he needed help. It wasn't that I stepped in and did it for him, it was more that he just didn't comprehend how to follow the very simple steps it takes to make the meal. The directions are literally as follows:

1. Brown ground beef and drain.
2. Add milk, hot water, sauce mix and rice and bring to a boil.
3. Reduce heat and simmer for 20 minutes, covered, stirring occasionally.

That's not that hard, right? Am I seeing this wrong here? I mean, the Hamburger Helper company has made it as simple as can be because, after all, this is a convenience meal and they're trying to make it so the "chef" can do this easily.

The thing was, my chef couldn't do it. He'd read the directions and begin to follow them but then he'd forget something and ask me if he was done with a particular step and I'd have to tell him to go back and read the directions and he'd go back and sometimes he wouldn't get it and I'd have to tell him what he'd missed.

I was dumbfounded!

Here it was, the plan being to have Thomas learn how to be independent and cook a meal, and here I was, once again, standing over him helping him every step of the way.

Again, I state, I was mad.

Maybe you'll understand this and maybe you won't but all I could think to myself was,

"What am I trying to do here? He has got to learn this stuff and I've taught him over and over and practically held his hand the whole way and still he can't do it.

Is it me? Have I failed somehow as a mom?


So, then, as meal prep was coming closer to being done, Thomas states to me,

"When I'm living on my own, what am I going to do with all this food? I won't eat all of this."

And there it was. You would have had to have been there. This was not what it sounds like on the surface. This was a kid looking for a way out of having to prepare a real meal. I told him that he could prepare something like this and put the leftovers in the freezer so he wouldn't have to cook another night and he was wholly unconvinced. He no more wanted to prepare something like this than fly to the moon. So, again I ask,

"What am I trying to do here?"

Let's not forget he's a 20 year old kid. Let's just let him be that for a minute here. So, let's say he's on his own. Let's say he doesn't have schizophrenia. Tell me,

"What 20 year old kid on his own ever prepares a proper meal for himself?"

Most kids eat convenience foods, Top Ramen, TV dinners, heck, even just chips and a Coke. They do that because they are 20, they're free from being under the thumb of their parents and they're expressing independence. When I lived on my own, I ate hot dogs and macaroni and cheese! This is what we do as independent young people.

So, what am I supposed to do? On the one hand, if we look at Thomas as an average 20 year old, shouldn't I just let him be him and eat the way he wants and hope to God he'll get a piece of fruit or some vegetables fit into his life somewhere at some point? On the other hand, he is a young man with schizophrenia and the challenges of anxiety, apathy, memory loss, and an inability to follow simple directions, to name few. No matter how hard I try, no matter how many times I "hold his hand" while he prepares a meal, he will always face these challenges.

So, again, I say,

"I am so mad!"

I am mad because he doesn't get it.
I am mad because I have to be there every step of the way.
I am mad because he can't follow directions.
I am mad because he lets his anxiety run his life.

And, really, what I'm mad at is,

"He has schizophrenia!!! He's never going to "get over" this illness. He will spend the rest of his life dealing with one aspect or another of this illness. It is never going to end! There is no reprieve."

I'm so tired. I sit here drinking my coffee with more coffee than cream in it in the hopes that somehow the caffeine will ease this aching in my chest. I am sitting here wishing my coffee is combined with rum, or something, just so I can, hopefully, feel something different than I do.


But here it is, the morning of a new day, and I will get up from this computer when I am done writing and I will go on. I love Thomas and I want him to be independent. I'm even really and truly ready to let him go and try his wings even if it means he doesn't eat a proper meal. I'm not sure I have anything left to offer as a mom.

He needs to get out into life and give it a try.

Monday, August 24, 2015

The Empty Milk Carton

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The other day, out of the blue, Thomas sprung on me that he was, again, thinking of moving out. It's interesting that he announced that because I had been thinking over the previous days that I thought it might be worth a try for him to move out sometime soon. He's doing a few things a little better like trying to keep up with his laundry and he, now, has totally taken over managing his medication and putting it into the weekly pill case. These are things that I didn't think I'd see for a long time but he's doing it!

When he brought up in therapy that he wanted to move out there was a definite pause as Dr. K. and I took in the news. I could sense Dr. K.'s apprehension about it and he right away began questioning Thomas about his life skills. This is what is so good about having an outside perspective because as Dr. K. talked, I realized, much to my chagrin, that Thomas is far from being able to move out. I take care of so many things in Thomas's life that I don't think about what it is he is not learning for himself. It's not that I feel like I need to do these things anymore, it's just that it's my job. I'm a mom and I'm a wife. I take care of the house and the meals and many other things. I don't think about these things because they are things I have done my entire adult life.

As Dr. K. talked, I realized that there is still much for Thomas to learn. He doesn't know how to write a check, granted he's never had a need to, he just uses his debit card, and he doesn't know how to keep a proper budget, planning for specifics like rent and utilities. These things are all-inclusive in the rent he pays us but he's never had it broken down for him. That's my fault, I guess. As for grocery shopping, he can now go through the whole store alone and pick up the things on his list but these things are simple like apples and cereal and snacks and desserts. They are hardly things with which to prepare a real meal. I have had a few "sessions" with him teaching him how to make dinner but he doesn't really know what it's like to budget for a week's worth of food and plan meals. That's been something that I haven't taught him because of the way I shop.

When I was married the first time, we had a budget. I clipped coupons and when we ran out of our allotted money for the week, we ate only what we had in the house. Now, with me shopping at Costco and buying in bulk and grocery shopping trips being used to supplement the things I buy at Costco, we now live a life where "shopping for a meal" consists of going downstairs, pulling out a self packaged bag of meat and then going into the pantry to pick sides for the meal. None of this teaches Thomas about the realities of living in the real world. I'm not sure how to remedy this situation because at this point, it's cheaper for us to buy groceries the way we do now instead of the way I used to when I was married before. Clearly this is something that is going to need to be worked on and I'm going to have to come up with a way to change the habits we now live with.

The other thing that Dr. K. brought up was what kinds of bills Thomas would have if he moved out. He mentioned his therapy bill, his psychiatric bill and his meds. Right now, I haven't seen a bill from those things because insurance is covering most of it between the insurance he had before he was declared disabled and now Medicaid. This doesn't paint a clear reality for Thomas because with insurance, bills are sporadic and meds only become an issue when the new insurance year starts over and meds start costing more until the family meets its catastrophic cap. What Thomas doesn't know, too, is that for months now I have been working with my sister and her husband, Thomas's biological dad, to get him put on his insurance for life because that is something that could be offered since he's declared disabled. The problem is, right now it's a bit of a fight to get my ex to get the ball rolling with getting that insurance for life. Thomas has not been included in even the tiniest detail of this. Beyond that, what Thomas doesn't know is that if that insurance for life doesn't come through, he will be solely on Medicaid and that is a huge game changer. As all of you know who live with Medicaid only, their coverage is not terrific and things like certain meds aren't even covered. While I haven't looked into it, I would assume Thomas's Latuda won't be covered since it's a brand new medication with no generics offered for it. If it's not covered then Thomas will have to be taken off that med and as we all know, changing meds can be disastrous which, more often than not, leads to a setback. Dear God we just don't need a setback! All of this, though, Thomas knows nothing about. He's sheltered from it mainly because I don't see a point in stressing him out about it but it's a looming possibility and it will definitely affect how he's going to do if he moves out.

Apart from those things, there are still other things to think about. Dr. K. asked Thomas how he would feel if he had purchased a gallon of milk and when he went to the fridge one morning to get milk for his cereal he realized that his roommate had finished off his milk without his permission. Thomas's response was that he didn't care, he probably wouldn't say anything and he'd be fine with going without milk that morning. The problem is, and I think Dr. K. and I are on the same page with this, Thomas needs to care. He needs to see that he has a right to have his things respected and he has a right to be upset that his milk has been finished up and he has a right to say something to his friends about it including expecting them to replace his milk. Thomas is such a sweetheart and passive and is afraid of upsetting anyone. He'd go without something that belonged to him just to keep the peace. This is not a good quality to have in the dog-eat-dog world of inconsiderate roommates. Therein lies a problem. How do I teach him that life skill? How do I teach him to care about that, to be indignant if that happens and how to be assertive and respectfully ask his roommate to replace his milk? Thomas's innocence is one of his most endearing qualities but it hardly prepares him for life outside these walls. In fact, it's a disability of sorts because it limits him from living the best life possible for himself.

So, as you can see because of what I've mentioned here, plus the many other things I don't have room to mention right now, he is far from being able to move out. There is so much I want for him, most especially his independence, but there are many hurdles to cross before that happens. I can teach him how to shop for and prepare meals, I can teach him how to do laundry but there are so many things about real life that can't be taught, they just have to be experienced, and I can set him loose to learn those things but I'm not entirely sure he'll be able to pick those things up just because they go against the very core of who he is.

Life can be so cruel, people can be inconsiderate, things can pop up that you can't plan for and all of those things are on Thomas's horizon if he is to move out. He has a lot to learn, a lot of toughening up to do and he needs to learn a sense of justice for himself. We've started the learning process but for him to be able to move out, we still have a long way to go.

Friday, August 21, 2015

For Better Or Worse

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Yesterday Thomas had therapy and it was a little tough to handle. We all had talked a little last week about how Thomas is afraid of his step-dad, Dan, and yesterday Dr. K. delved further into the issues we deal with in our home when it comes to our interactions as a family. One of the hardest things was sitting with Dr. K. and telling him about what Thomas deals with and even what I deal with from time to time with Dan and watching Dr. K.'s reaction to our stories brought home that things aren't as good around here as I thought they were. We've been struggling a lot lately, Thomas and I, with issues with Dan and his volatility especially where Thomas is concerned, and I can tell you that sharing our issues with a psychologist and getting his take on our reality is sobering. It's so easy to live our lives day to day in the way that we do that we forget that it isn't right that we have to deal with what we do.

To begin with, Dr. K.  had Thomas place a number on his fear of Dan. Thomas deals with a constant fear of Dan and he rated his baseline fear at a 5 out of 10. That is how he spends his life, every day, every moment that he's around Dan. He lives in constant fear of upsetting him and part of the reason he hides out in his room is to avoid him.

I have written before about Dan, explaining his inability to stay consistent with his understanding of Thomas's schizophrenia, and the problems still remain to this day. There are days when Dan will totally understand that Thomas is sick but then one day I will bring something up about what Thomas is dealing with and Dan, for seemingly no reason at all, will flip out and unleash a tirade of frustrations saying that Thomas is "immature"and that he "needs to grow up and stop acting like a baby". It doesn't end there but that's the gist of it. For a while now I've been asking Dan to help Thomas find a new computer desk and on Sunday he seemed to be on board with it but when he went in to talk to Thomas about what Thomas might want in a desk, Dan, instead, told Thomas that his room was filthy, that he is a "hoarder" (which is not true) and he proceeded to go piece by piece through Thomas's things and deem some things garbage and tell him to throw them away and to store the other things that he didn't use. Yes, Thomas's room is messy. Yes, there is a layer of dust on everything and yes it would be good for him to straighten things up a little but he is far from being a hoarder and the things Thomas surrounds himself with are things that make him happy. I don't usually focus too much on his room except to ask him to vacuum every now and then and change his bed because I know Thomas's room is just how he wants it and I think he deserves to have his personal living space kept in the manner in which he wants it to be kept. As for the whole "helping Thomas with a desk" plan, that went out the window after the room inspection and subsequent scolding for what Dan feels Thomas should be doing with his things. So, instead, I spent the morning on my computer looking for a desk for Thomas and doing my best to keep Dan away from Thomas.

This is how it is.

For Thomas, he lives at a level 5 fear and I don't blame him one bit. Dan is "the man of the house" but he is not a loving father to Thomas and my marriage is an often tension-filled guessing game of when it will be that Dan will flip out and find fault with either me or Thomas. I want to make it clear that he doesn't physically abuse either Thomas or I but the constant unpredictability of our lives is tiring and frankly borders on it's own definition of abuse. Nobody, especially Thomas, should have to live under a constant cloud of fear but in the 14 years I've known Dan I have never found a solution to all of the issues. If he were consistently supportive of Thomas and his illness, our world would be a different place but instead we just never know what each day will bring.

So, Dr. K. initially thought it might be a good idea to have a family session or two with Dan and after Thomas and I told him in more detail what we deal with, Dr. K. decided to put that plan on a back burner and instead try to focus on helping Thomas cope with his fear. I am so angry that Thomas has to live like this. I am angry that he has to deal with the symptoms of his illness and then has to deal with this whole other level of stress.

Sadly, there are no solutions to it. I have tried, too many times to count, to figure out how to change things around here but I fail every single time. At this point all I can do is protect Thomas the best that I can and keep Thomas and Dan separated as much as possible. There is some semblance of a relationship there, they say hi to each other and sometimes they exchange talk about their day but it begins and ends there. There are no hugs, no "I'm proud of you son", and Thomas even stated last session that the only time in all of his life that he has seen Dan be kind was the day the police showed up after a Facebook friend of his called the police because Thomas was threatening suicide. It literally took the threat of Thomas wanting to end his life for Dan to find the empathy inside to care for Thomas and want the best for him.

I wish things were different. I wish that someone had the answer to the issues in our home but instead we will just go on living at status quo with Thomas living in constant fear. That is no way for anyone to live, especially for someone with schizophrenia but until we find a way to remedy our situation, this is our life.

For better or worse.

Thursday, August 20, 2015

I Am Here With You

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As I have read your responses to Sherry Hunter's post, I am struck by the tragic stories so many of you tell. To some degree I have been off of the front lines since Thomas is doing relatively okay and I have somewhat forgotten what it's like to be in the middle of a crisis where I'm running him to the hospital or scared about whether or not a medication will work to take away active psychosis. I have read that a couple of you have even lost your children to death and my heart breaks as I read your stories because it seems so unfair that this illness took your children from you and the final blow came when the illness made it impossible for your children to live anymore. So many of you are caught in an almost constant crisis and either they have worn you down or you are quickly reaching your breaking point. What I can offer you is this:

I have been where you are. Thomas has been in many crises over the years since his diagnosis and if you read back over my blog through the last couple of years you will see that I have been where you are now. I know many of you will have to fight this unrelenting fight for a long time and you might not see much peace but I also know that for some of you, it will get better. So many times I was certain that this was the end for Thomas, that he would spend the rest of his life fighting serious psychosis and yet somehow here we are today and I am able to breathe a little bit, let go of some of the grief and as a caregiver, live a life that actually includes time for myself. Part of that has been that I have had the luxury of  being able to kind of just walk away and take a break but that wouldn't have been possible without my seeing enough of a change in Thomas that I felt safe to take that break. I know, in the back of my mind, that this respite is fleeting but for now I am taking it all in and allowing myself to breathe a little bit before the next round.

The truth of the matter is, though, there are things about Thomas that are concerning that I haven't written about here. I don't write because I am busy finding excuses for the things I see and somehow, in some distorted way, I feel like if I don't write about it then it won't be real. It is a function of denial on my part and selfishly, for my own sanity, I am remaining in that denial for a while longer because as you all know, jumping back into the fight is fraught with fear and exhaustion and feelings of defeat.

Apart from that, I mostly just want to tell you all that I am reading your stories that you have shared on Sherry's post and elsewhere and I am with you all, praying for you, hoping with you for things to get better and standing beside you in spirit as you wake to a new day with a new round of worries. I am here and we are all here for each other. The best I can offer you during these times is simply this:


Monday, August 17, 2015

My Sister And I And The Truth Of Our Lives

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My lovely and loving sister came to visit me last week, coming from the east coast all the way out here to Idaho, for some relaxation and family time. I couldn't have been happier to see her and her visit was healing for me in a few ways. She left yesterday, though, but left me with some peace about my life and that of Thomas's.

While she was here, we spent a lot of time sitting on the front porch of my mom's house playing silly games on our phones and tablets and in between games we talked, sometimes even abandoning the games for serious discussions about the realities of our lives,

You see, my sister has a daughter with serious bipolar I disorder and her daughter is 19 now. The family has spent many years coping with the illness and for my sister, coping with what it means to be a parent of a young adult with a serious mental illness. We exchanged stories of our experiences with our kids and we found some similarities in our stories.

To begin with, what's different for her, is that her daughter is not properly medicated. It's not that she doesn't have the medications rather it's that she refuses to take them or only takes them when she feels like it. Of course this leads to many conflicts between her and my sister and my sister works to cope with the behaviors that rise out of her child not being properly medicated. As many of you can imagine, as a mom, she has a tough time trying to find balance and on top of that my sister has other young children to parent at the same time. Her plate is full and out of our discussion came some truths.

Both she and I talked about where our children are in their lives, her daughter fighting symptoms and having no motivation to change her life and refusing to take her medications properly and my Thomas who has the same lack of motivation to change his life and can be found 90% of the time on his computer playing games and watching YouTube. While I am blessed to have a son who takes his medications and takes them seriously in that he knows they help him, he still sees a life for himself shut into his room, unmotivated, and increasingly unwilling to even go to work for the one single day he's scheduled to go. Two Saturday's ago he called me to come get him from work early because he "felt sick" and then this last Saturday he called me in the late morning complaining of a scratchy throat and upset stomach, insisting there was no way he could go to work that evening. What was I to do? I couldn't force him to go so instead I was essentially forced to give him the go ahead to call in sick.

What this brought up in my discussion with my sister is the fact that Thomas was quickly putting himself in danger of being fired from his job. They're tolerant at his work with his unpredictability but they do have a business to run and I know it's just a matter of time before they let him go. What, then, would that mean for his life? With no job, and being isolated in his bedroom and collecting disability, did this mean that this was what his life was going to amount to? Between my sister and I with her daughter needing a driver's license and insisting she already knows how to drive yet won't take the driver's test and is also looking at a life of a lack of motivation and Thomas near being fired and unable to bring himself to find courage to take a college course or increase his work hours so he can better afford to find independence, we have 2 children that we don't have a clue what their fate will be in the future and even more concerning is the fate she and I face as our young adult children don't look towards independence from the comforts of their childhood homes.

So, what does this mean for our future, for mine and my sister's future? What we came to was that we were looking at the rest of our lives with our mentally ill children safely ensconced in our homes living at their current status quo looking towards a future stricken with their respective illnesses. We talked about how as our peers our age are now becoming "empty nesters", we are still looking ahead to a life where our nest will never be empty. Our lives, as we know them now, appear to be shaping up to become our future lives too.

The question then became,

"What are we going to do?"

As we talked, we realized that together we had similar futures and we resigned ourselves to them. It's not that we don't want our kids to move out, it's not that we haven't tried to help them find a way out, it's simply that we've tried countless times over the years to help our children choose different paths and it's become out of our control to make the decisions for them, instead opting to turn their fate over to their own hands and in effect stand by as they choose to do absolutely nothing.

The discussion on that warm, shaded front porch turned to a kind of nervous laughter as we tried to find our classic sense of humor about our futures. There we were once again faced with reality and once again the only way to cope with that reality was to find the humor in it all. What else, when all else has failed, can you do? The minute you stop laughing, the minute you turn your own reality over the the grim truth, is when you find yourself in a place that's hard to crawl out of. Surely there is humor to be found in our situations and one thing you can count on out of the relationship my sister and I share is that we will always find the funny. After years of tragedy after tragedy befalling each of our lives and our children, we have toughened up and learned that a sense of humor is not a bad quality to have in the face of pain and disappointment.

So, there we sat on that warm, shaded front porch and we quietly stared off into the distance over the Snake River and the baked hillsides surrounding it and we accepted what we know to be the truth. Of course there will always be hope. There is hope that her daughter will become enlightened about her illness and begin to take her meds and begin to see that she can have a life of independence and good health and there is hope that Thomas will find the motivation and strength to find bravery and independence but for now, things are as they are.

For now, I'll sit with my sister on the front porch and we'll share the truth of our lives and somehow find humor in it all.

Monday, August 03, 2015

Summer Camp

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This last weekend I sat down to watch a morning news magazine on CBS and their first story was about a summer camp for adults. As I watched people play croquet, attend lectures and poetry readings and canoe across a beautiful lake, I thought of all of us and how a lot of us have been feeling lately. The response to my posts about being tired and needing a break was surprising and supportive of my feelings. I began to realize that I am not the only one feeling the need for escape. So, as I watched these carefree adults, sans their cell phones and relaxed and talking with each other, I began to imagine a place like that for all of us. Imagine this:

To begin with, we would all be able to afford to fly or drive to this wondrous place set lakeside somewhere in the mountains of the western United States. I selfishly choose the mountains because that is where I find my own peace of mind. There's nothing like panoramic views of snow-capped ragged peaks and the smell of pine trees and the allure of a crystal blue lake. In this place, there would be peace and quiet at night under the star-filled night sky and we'd all gather around a campfire making s'mores or laying on blankets staring up at the incredible night sky where countless stars would be twinkling and the vastness of the universe would be there reminding us how small we are in the scheme of things, how there is endless possibility for our lives, even though it might not feel like it sometimes, and how much promise there is in the future.

In the morning we would all gather for an early morning meditation in the dew covered fields in the camp and afterwards we'd walk, some of us in groups, some of us alone, to breakfast in the big main cabin where we'd have bacon and eggs and waffles with strawberries and real whipped cream. We'd talk about our lives, about the lives of our loved ones with schizophrenia and some of us would cry, receive hugs from the people sitting next to us and we'd all understand each other's anguish and even the joy that some of us are feeling because things are going okay for once in our lives and the lives of our loved ones with schizophrenia.

In this place, at this summer camp that reminds us of our childhoods either at similar camps or in some kind of escape from real life as kids, there would be peace. There would be lectures on coping with stress and others about finding ways to have a life outside of being caregivers. For those who are interested there would be a spiritual gathering where no matter our faith, we could gather together and pray and ask for better health for our loved ones with schizophrenia and even dare to hope that there would be a remission for a little while. We'd pray for ourselves and each other for anxiety-free days, a good night's sleep on a regular basis and relief from an almost constant grief. We'd also thank God or our spiritual leader for the gifts that we have been given like the strength to get out of bed each day, the ability to continue to support our loved ones and the gifts of strength and resolve to be good advocates and make a difference in the lives of our loved ones or even in the world somehow.

Our summer camp would last just long enough to give us some time to get back on our feet, to be able to breathe again and to be able to go back to our real lives refreshed. We'd gather in the parking lot next to the shuttle buses and personal cars and we'd hug each other, promise to keep in touch and give last wishes of hope for better days ahead. We'd climb in our cars, turn on the radio and begin to drive home. Our shuttle buses would deliver us to the airport to fly home to the life that awaits us and we'd stare down at the ground as our flight lifted away from the ground and we'd be grateful for this time that we were given to get away from it all for a while.

For all of us, the mountains would fade into the distance in our rear view mirrors and out our airplane windows and we'd settle in for the trip home.

This is my wish for all of us. This place, this escape, this summer camp where canoeing and swimming and sunbathing and talking and hugging and supporting is what I dream for all of us who are hiding out from life right now, exhausted, depressed, resigned, isolated and feeling alone. I know that for me, and for you as you read this, that this place exists only in our imagination. The truth of the matter is, though, this is exactly what we all need. We are all tired and we need some fresh mountain air to fill our lungs. We need peace, we need love, we need sleep and we need many things we don't dare utter out loud for fear of sounding like our strength is waning and we just can't go on.

Here's the thing, though, we can go on.

We can do this.

I can do this.

We are not alone. None of us are.

Otherwise there wouldn't be this amazing summer camp to escape to in our minds where we exist together, a group of people who all understand each other and support each other no matter what.

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