“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.
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