One mom, one son, one day

Sea Otter Mother with Pup Beside Morro Bay CA ...

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“Write out your boundaries while your son is here,” the hospital nurse suggested to me over the phone.  “Write it out –what you are and are not willing to do.”

I remembered the conversation I had with this nurse less than two months ago when he suggested that I hand over some of the care giving responsibilities I’ve taken on.

He didn’t say to whom I should hand any of them over to and so far nobody has volunteered nor do I know of anyone who can relieve me, so there.

I have boundaries.  I told him my son doesn’t care about his life and with genuine sincerity he said he completely agreed.

How is a mother supposed to handle this… knowledge?  Just this one part of a longstanding stressful and heart breaking situation is as hard as anything I’ve ever felt.  To think that it is the truth deeply disturbs me.  To think that my son doesn’t care about his life puts me into a hypnotic state of grief.

Everything I’ve ever learned or believed or know is not applicable to the way I feel.

Boundaries mean nothing.  Lists mean nothing.  Text book ideas and ideals mean nothing.

The only thing that matters to me now is my son and his life.

Statistics, treatment models, my son’s history, “the highest level of mental health care available,” which my son has in an ACT team and as the nurse added during our conversation today, “people are waiting three to six months to get services from an ACT team,” –none of this is applicable to the way I feel right now.

I’m unhappy with what many people are seeking and waiting for.

Part of the problem is that my being dissatisfied with the services the ACT team is in reality providing for my son rocks a boat that is barely staying afloat.

“The ACT teams are overloaded with too many people and not enough resources,” the nurse said right after he told me about how many people wants and needs this service.  I’m well aware of the state of affairs within the mental health system.  They are not good at all.  “They don’t have the resources to see all of their clients, (a.k.a. consumers).  Some of the people just don’t get seen.”

My son is one of those clients.

“Your son is difficult,” he said.  I’ve heard this several times.

His teachers said he was difficult throughout his school years because he talked too much.  The creative and interested teachers loved him.  The ones who found ways to make school work for him, which was hands-on-learning, discovered that my son was not only bright, but also quite capable of being a, “good student.”

“The ACT team is difficult!” I said with strong conviction.

I like the nurse.  He has taken very good care of my son many times now.   I respect him and now, I think I need to be taken as seriously as anyone else involved in my son’s health care.

“I need you to hear me,” I told him.  “You guys have to listen to me this time.  Hear what I am telling you.  The ACT team is not providing these services to my son.  They have many good and very valid reasons, but I cannot accept them as an excuse not to see him.”

He said he would definitely pass on my concerns to the doctors and I know he will.  I know they will call me just like they always do.  They really are good doctors, but something happens in route from our conversations about resources and ideas as to what might help my son live independently in a community –to the day my son is discharged.

Somehow what is said doesn’t make it to a written document and he comes out of the hospital with the same treatment plan that he went in with.

The nurse has told me before how much he likes my son.  “I find him fascinating when he can communicate,” he told me not long ago.  Today he said my son is cognitively slower than he has seen him before.  I realize that, which is why he’s in the hospital again.  I’m very worried about my son.

The nurse also reminded me that he thinks my son is a really good guy.  Everyone who knows my son says this about him.  Most people say he’s sweet.  That’s the word I hear most when people talk about him.  People have said that about him since he was a little boy.

He has this kindness, this sort of giving unconditional loving way about him, but when he is sick, well…  I’m lost for words.

My son is lost.  He is truly lost in this world and I guess, so am I.

They say he has schizophrenia and he does have the symptoms, but he’s never fit any mold within the diagnosis, even as precarious as that is.

I’ve always felt in my heart that the doctors should focus on addiction issues, at least once.  I know you can’t force recovery from a substance addiction on any person and when that substance is causing symptoms of schizophrenia… well, I’m lost for words again.

Addiction joined with schizophrenia, or more accurately, the symptoms of schizophrenia, — is very hard to treat.  “The addiction your son has and schizophrenia are each possibly the two worst diseases a person can have,” one medical doctor told me a few years ago when my son was struggling with substance abuse.  “Your son faces both of these,” he added.

I wish the hospital would take the approach that some of my son’s school teachers took and give him a new chance.  I wish they would just one time forget his past failures and look at the successes he’s had and say hey, you know, we think your life is worth a great deal.  We want to help save it.

I wish just one time that they could for a little while stop thinking of how things don’t work, stop thinking inside the box, stop telling me things I learned when I was five years old and give a good college try towards developing a new plan.

I know this would take some time, but it’s a hospital.  A teaching hospital.  A teaching hospital with renowned doctors and bright residents who are still young enough to be idealistic,  so why not teach them how to approach the most challenging patients?  Why not teach them that they might can make a real difference in one family’s life with a little extra time thinking, communicating and reaching out to find resources in the community?

“He’s older now,” the nurse also added.  I’m tired of hearing that too.  It’s clear to me that younger patients get a bit more attention and time, I guess, because the doctors are more hopeful that they can do something.  (Studies suggest that early intervention in schizophrenia leads to a better prognosis).

His age isn’t applicable to how I feel right now.  His life is.

What am I willing, or not willing to do?

It’s possible that I’m willing to die trying to save my son.

Today the nurse said he would worry for me.  That was a blessing.

Thank you for visiting my blog.

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15 responses to this post.

  1. Posted by Loren Andregg on December 29, 2010 at 4:04 AM

    You’re improving as a writer. Carry on!

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  2. Reading this, I could feel your pain. My younger son, in particular, sent us to hell and back with addiction issues, jail, and fears that he was a sociopath. For all of the blog posts I’ve written, I still haven’t written about his stay in a mental hospital. With addiction issues, it’s very hard to get to the bottom of what’s driving what. My son has OCD and was always trying to self medicate. He’s the most charming person you could imagine meeting, hence our fear that he was a sociopath after all of the lies he told. After 9 years that included 6 months in a rehab school and numerous arrests for things he did while intoxicated, he’s doing well. Prozac keeps his OCD manageable. He’s rebuilt relationships with people who are sober. (He always hated the 12-Step programs so that was very frustrating.)

    I have a close friend who has a son with various issues. He’s now 26 and suffered from Tourette’s and a host of other issues, including depression. He can’t seem to hold a job and my friend and her husband are at wit’s end as to what to do next. A group home? I listen to her and her husband debate daily their options/or lack of.

    I wish you and your son only the best. As a teacher, it’s so difficult as I see children in third grade who have “issues.” Some are manageable – others not so much. We can only do the best we can. Some of us are dealt very difficult hands indeed. That’s when reaching out to connect with others can ease our pain.

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    • Dear alwaysjan,

      Thank you for this comment and sharing part of your story. It is hopeful to hear your son is doing better.

      It is a very hard situation and like you say, when there is a substance issue going on, things get complicated. It’s hard to get to the root of the problems or even know exactly what they are. I wish my son could stay somewhere without drugs long enough to know what he is like without any substance.

      I hope my son will make a good choice soon because it is really getting the best of me. It is a daily routine wondering what the next step is. I made the doctors upset, accidentally, by telling them I was concerned about an injection, so they sent him home the next morning. Now what, I wonder?

      Thank you for your kind wishes. You are right about reaching out. I’ve been trying to write about my struggles, as a way to reach out, but I’ve tried not to betray my son’s confidence and for this reason, I’ve been reluctant to write about this part of my life. Another reason is because it is very painful and hard to write about.

      Thank you for responding to me. It really means a lot.

      Peace to you and your family,
      dogkisses.

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      • Posted by Anonymous on December 29, 2010 at 1:39 PM

        I feel sad for what you are going through with your son. It is so good for you to write and gain support from others on the perseverance and the heartache you are enduring alone with him. It will help you cope which will make you more helpful to him in the long run. What a difficult situation!!! and you must feel so helpless, so sad to watch his suffering. and yours, too! Both of you are in my prayers!!!! peace and love, ruthie

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        • Thank you Ruthie. I do feel rather helpless right now and I sure hope that changes. I hope healing will come to my family. I want that more than anything in the world. I want my son to enjoy his life. I want to have some energy, some time on this earth that is fun, joyful, and again I want to feel happy inside.

          Thank you for your prayers. You are sweet.

          peace and love to you,
          and of course dogkisses too!

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  3. I read this wondering if I would be able to hold it all together if he were my son. You are a loving Mother and it is obvious that you are doing everything you can for your son. I will be thinking of you and your son and hoping for the best.
    mo

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  4. Posted by ruthieannsings on December 18, 2010 at 9:45 AM

    your son knows how much you care, he can see it in your eyes, the way you fight for him, the way you stand up to take his side…..that will help him to find his way in the darkness and gain courage to fight for himself! it gives a sense of wanting to live to know one is not alone…..and your son’s courage will be YOUR life-boat or the thing that will keep you afloat…it’s the circle of life = love. think of your doggys face when you rub his ears, it will comfort you as doggies yearn to give dogkisses, it’s how they show their love and joy of you.

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    • ruthie ann– I sure hope you are right. I hope my son can hold on to what he must know deep inside, which is that I care very much and love him. You are right about my dogs. I sat with them yesterday, just for a few minutes to rub their sweet heads. I was not surprised when I felt so comforted, and afterward so much calmer. They sure are here for me right now. Thanks for visiting my blog and taking the time to comment.

      dogkisses

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  5. OH SWEETIE…….my heart hurts for you and your son. It’s bad enough that he has these issues and to be able to do nothing about them is heartbreaking. I will keep you both in my prayers.

    xoxxo to you

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  6. […] Read more here: One mom, one son, one day « Dogkisses's Blog […]

    (The above link goes to: “SchizophreniaPage.com –a site about “schizophrenia and mental illness information and help.”)

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  7. Don’t worry about what studies say. Early intervention isn’t all it’s cracked up to be. Just go on caring. You are an excellent writer, BTW.

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