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.


  1. I am going thru the same thoughts as you life to a tee.

  2. Very honest post. Although I do not have schizophrenia, it sounds like a confidence issue (?), something he will have to believe he know he can do. I have difficulty with certain things, and confidence is one of them, I find I have to force myself past the fear, I have to believe that I can do it, and just do it. I just had a job interview this morning! My mother passed away almost two years ago, and I knew she wouldn't always be there for me, and same with my father, he won't always be there. I'm slowly making steps to make a life for myself, although it's slow, I'm working on it. Keep going forward, at least you're seeing this.

  3. In some ways you are right Melanie, actually in all the ways. I have 5 kids, all grown, ages 33 to 23. They all left the nest. They all had some cooking skills, but not until they were older did they use them. My 23 y/o still either goes out to eat or gets microwave meals. One of them is a cook, but forget cooking for himself, and my oldest lets her partner do the cooking, and he is a good cook ;). (Maybe she is the smartest one too? lol) But Kevin, the one with sz, very rarely cooks, or even prepares sandwiches for himself. Or salads from the bag, or much of anything. Yes he lives at home, but we had gotten used to no set schedules with the kids gone, and Kevin wants food when he wants it. So to Subway he goes, or to the fried chicken place a block away if he is feeling brave. Now the real trouble is he has stage 3 kidney disease, and he got to that stage fairly quickly. To go with that he has high blood pressure, and on lisinopril for that. So his diet is super important, and he does know and understand this. However, he is 30 years old, and even with his sz he needs to learn that it is up to him to put forth effort. I watch him closely of course, he isn't aware of how close I watch! I know when to step in when I see the signs of his kidney problems flaring up. Being a mom seems to be alot of walking a very, very fine line. Especially when they get older, and then with this illness it makes it even more so.
    Look at it this way if he does go out on his own, it doesn't mean he won't reach for help. You will be the one he reaches out to at that time. And if doesn't work he can come back home, and you guys will know what he needs to work on to truly be independent. I don't know, I usually try to put a positive spin on the things I get to feeling anxious about. Just trying to do the same for you. It will be okay, no matter what road Thomas takes!

  4. I'm 35 and have aspergers. I can't cook hamburger helper either. My mom tried for years to teach me to cook and it just caused us both anxiety and honestly I kind of hated her sometimes because I didn't want to cook and couldn't explain how frustrating it was. It took me about five years of telling her I was never going to learn to cook for her to get over it. If I want something like that I buy a microwave meal that I can just cook for 6 minutes. Some of us can't follow directions. It might seem easy to you but to us it's like if someone told you to build a bomb or something. I am independent though. I used to tell my mom "I will have a life, just not your life." Now that I live alone she is happy I don't use the stove because I won't forget to turn it off and burn my apartment down. :-)

  5. It seems like just yesterday I had all these same thoughts...Except my son was 18 and this nightmare of ours had just been diagnosed as schizophrenia.

    He'll be 23 the end of September. He doesn't eat Top Ramen anymore because he can't remember that he needs to turn the water on, fill the small pot half way with the water, put the pot on the stove, turn the correct burner on, wait for the water to boil, open the package of noodles, poor the noodles into the boiling water, stir the noodles, wait 3 minutes, stir the noodles again, take the pot of noodles off the stove, turn off the burner, open the little package of flavoring, dump the flavoring into the pot of noodles, stir the noodles again, pour the contents of the hot pot into a clean bowl, put the hot pot in the sink, throw away the packages, get a clean fork, eat the noodles, put the empty bowl in the sink.

    Today he eats cereal or bologna and cheese sandwiches.

    My heart goes out to you and your son. You are right, he is NEVER going to get over schizophrenia. And you will likely NEVER stop being there to help him. <3

  6. Melanie,

    I have read your blog for a very long time and want to gently let you know that I am worried about your mental status at this time. You appear to be a loving mother who is suffering from extreme burnout and is unable to cope with the fact that Thomas' schizophrenia might keep him from ever living independently.

    Your last two sentences of the August 28 post are so very telling. They are: "I'm not sure I have anything left to offer as a mom" and "He needs to get out into life and give it a try". Please print your blog posting for Aug. 28th and share it with your therapist ASAP. I think it would be in your very best interest to do so.

    Thomas is in no shape or form ready to live independently. (I think you also know this in your heart). Being able to plan and cook a meal is such a small part of being on your own. There are just so many different things Thomas is unable to do at this time. How much more isolated would Thomas be living on his own? Do you really think he will become a different person if he has to fend for himself? Rushing him out the door to "give it a try" could be very traumatic for him and set him off in a downward spiral. I don't know how you would cope if something happened to him.

    Please do not be offended by my comments. I felt it necessary to let you know a reader cares about you and hopes you can get the support you need to continue loving and caring for Thomas in a healthy way.

    You and Thomas are in my thoughts and prayers.


  7. Just be thankful you still have him. Be there for him no matter how hard it is. Like you said, he does have Schizophrenia. It IS an illness and one that there is no cure for at this time. But NEVER give up. I know how difficult it is. To be honest, I doubt he will ever cope on his own. Just do the best you can and have no regrets. Sorry to be so "brutal" in my comment. I would do anything to have my son back with me - helping him cook, doing whatever it takes. Oh, and more coffee is possibly better than more cream in regards to health. Stay strong.


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