Archive for the ‘mental illness’ Category

One mom, one son, one day

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

Image by mikebaird via Flickr

“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.

All my tears

All my tears may account for years but when I look at these photos, I can see that it was only days ago that I was smiling.   I smiled yesterday when I received a surprise phone call from a friend.

Yesterday brought a resolution to a recent crisis, but the aftermath of having gone through it has triggered an acute episode of severe depression.

Depression is something I’ve suffered with for most of my adult life but most certainly I don’t feel this bad all the time.  I couldn’t take it if I did.

I also have PTSD.   I am sure this is the root of the depression I’m experiencing.  I had terrible nightmares after the resolution.  The crisis was too familiar, which is all I’m able to write at this time.

I’m sharing these photos because the moments in time when they were taken, which was not so long ago, I was okay.  Okay meaning able to smile, eat, enjoy parts of my life and sleep.

I have laughed before and I will laugh again — maybe today but until then, I hope you like the pictures.

Thank you for visiting my blog.

traveling dogs posing for the camera

cute camp dog gives her mate a kiss

we danced around the fire at night in the mountains while camping

campdance

fibromyalgia made sure I was up to greet the morning crows!

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The Fence Sitter

Fence Sitter for Lady DogKisses aka Michelle. Image by Leslie S. IconDoit, the blog)

Fence Sitter

I wrote to my friend, Leslie Sigal Javorek, trying to describe the images and feelings I have when I consider ways to help my adult son in his healing journey, which has in the past meant navigating the mental healthcare system.

Leslie is a talented artist and author of the blog, IconDoIt, which is how I first came to know her. 

The drawings of the “FenceSitter” surprised me.  I loved them right away. The insight I saw in the image amazed me.  Little details, such as the red velvet fairy-like trousers and the white ruffled shirt reminded me of myself.  

The cute alligator came first and the dogs later.  They were perfect really.  I’ve only played with painting and drawing a few times in my life, so the Fence-Sitter was the first time I had seen my experience and feelings in a tangible form.

The woman I imagined can never decide which side of the fence she should be on.  “She has one leg on each side,” I had written Leslie.  “I’m not sure what is around her or the fence.  She simply can’t decide which road to take or what opinion to have.  She’s always wondering which side has less potential for harm.  Hard choices are on both sides and the fence is starting to hurt.  She needs to be free.  She knows in her heart she will probably never fully stand on either side of the fence.”

I haven’t always been a Fence-Sitter.  In my twenties I had strong opinions and was not afraid to express them, at least to people whom I trusted.  I was reluctant in academic arenas and sometimes in the jobs I held.  I knew what I liked.  I knew what I thought was right or wrong.  I knew what I believed in, but over time, I lost my footing.  Everything changed when my son was diagnosed with a mental illness.

 

“Fence Sitter” Image copyrights belong to Leslie Sigal Javorek.  Visit her here: IconDoIt.

Also, I wanted to share that Leslie has a store on Zazzle where she sells her original art– (IconDoIt, the Store).  Her art is very cool!  Thanks for visiting DogKisses.

Schizophrenic is an outdated word

The last time I heard a medical professional use the word, “schizophrenic,” was while I was having tests done at the pulmonary clinic.  The nice man who administered the tests had worked at our state mental institution more than twenty years ago.

He told me that he had loved his job there and also spoke tenderly about the patients he got to know while he worked there.  He told me a few stories and then he said the word, schizophrenic.   He hadn’t used it in a derogatory manner but it still surprised me.  I didn’t say anything to him because I assumed that it was a commonly used label — back then.

Hollywood still uses the word.  I’m surprised when I hear the word used in movies made within the past decade,  but then lots of things surprise me.

Not everyone has a family member who has been diagnosed with schizophrenia, so most people don’t know what it is like to love someone who can be completely and wholly defined with one word.

I think about how I would like it if people called me a fibromyalgic, or a Chronic Fatigueic, or a depressive, the latter label of which some people actually do use.

Illnesses such as diabetes doesn’t bring with it a mound of stigma when someone says, he is a diabetic.   Nobody runs away or gets afraid.  The label diabetic doesn’t define a person the way schizophrenic does.

Another word I think ought to be left for history is schizoid, particularly and especially when it is used by people who are not medical professionals because it is so often used in a derogatory manner.

I put the person first, which is what my cultural anthropology professor/mentor taught me to do.

“People are not their illnesses,” she would say.  “Always put the person first,” she told us.

I would have never imagined that not too far into the future, after my having taken the classes, that my son would be diagnosed with an illness that is not only misunderstood, but is completely and totally stigmatizing.

The label of schizophrenia alone stigmatizes, marginalizes, otherizes, and all the other ‘izes used in cultural anthropology.

The word, schizophrenic, is even worse.

If a person is schizophrenic can he or she be anything else?  Doesn’t it pretty much define a person?

The same goes for, schizoid.  I know psychiatrists use it but personally, I cannot stand the word.

Saying schizophrenic and schizoid takes away the person and leaves nothing for thought except the label, which is the only thing these words are — labels.

I say he or she has schizophrenia, or, he or she has been diagnosed with schizophrenia.

It isn’t about being politically correct.  In my mind, it is about being educated and/or thoughtful.

Put the person first.  My son is a human being.  He is an artist.  He is a student of Marshall Arts.  He is a son, a grandson, a nephew, a dog owner, a good friend, a wonderful person, and he is challenged with a thought disorder, the latter of which unfortunately has an ugly name.

First and foremost — he is a person.





Schizophrenia and forced treatment.

A Beautiful Free Spirit, A and B Larsen orchids, Wiki Commons

  PHOTO CREDIT:  Arne and Bent Larsen via Wiki Commons

I was hopeful when my son began receiving services with an Assertive Community Treatment (ACT) team, even though the way their relationship came about was not the perfect situation.

My son was in the hospital, having been admitted to the wrong floor.  The inpatient attending physician wasn’t happy to learn that he’d been admitted to her unit over the weekend when she wasn’t working.  The unit was for treating “disorders” such as depression and perhaps bipolar.  The other unit is where a patient went if he or she made reference to or exhibited signs of hearing voices, having hallucinations and/or signs of a cognitive thinking process deemed abnormal or delusional.  

The treating psychiatrist had a poor attitude.  She admitted to me that she had told my son that if he said anything she didn’t like, she would send him to another hospital that was not as desirable as the one he was in.

During a meeting she told my son the only way he could get discharged right away was to agree to sign on with an ACT team, which is what he did.

Before entering the hospital he’d been working with another team of mental healthcare providers that we both liked, but he was rebelling and not conforming to rules, after having been transported from the place we had called home for about six years. 

I felt that the earlier team gave up on him when symptoms of the illness they were treating him for flared, but they said the ACT team could serve him better.

Several years have passed since then.  I can’t be sure the good outweighs the bad in our personal experience of having ACT services.  There were good social workers who my son was very fond of, but they didn’t have much time.

Communication with this ACT team has been frustrating so much of the time.  For extended periods they’ve neglected my son.  They call this being, “engaged observers,” and always have either an excuse, such as too much paper work to get to him, or they blame him for not being easy to find on the downtown streets, which is how they often catch up with their clients.

I communicated with them once that my son needed help.  They agreed.  He was not doing well.  Their approach that time was to suggest that I leave him alone, at least for a couple of weeks or, “however long it takes for him to deteriorate,” his social worker suggested.  I liked the social worker, but I didn’t like the suggestion.

My son was living alone and certainly needed help.  I needed help helping him.  He was not, “sick” enough to be committed to a hospital psychiatric unit at that time.  The idea was to get him some help if he was an inpatient, they said.  I’ve since learned that this means forced medication.

The social worker told me they (his ACT team) believed that me inviting my son to my home, where we would have dinner and spend time with the dogs, one of whom is his, was helping him to stay well or rather, not letting him deteriorate to the point where they could have him involuntarily committed.  They suggested that I stop visiting him or inviting him to my house. 

“Just don’t answer the phone if he calls,”  a social worker told me.

I think this social worker had good intentions, I guess, but he just didn’t get it.  He didn’t have children yet.  None of the social workers on the team had any and many of them are younger than my son is.  We need some elders in these jobs.

ACT teams strive to keep people (consumers or clients) out of hospitals and in the community, but involuntarily commitment remains a common practice for social workers and ACT teams.

We were all in agreement that one of my son’s assets and at that time, probably his only asset was family involvement.  I am his family.  And our two dogs.

Their evidence-based treatment submits that patients who have family support fare better than those who don’t have it.

The ACT team have suggested several actions they believed would help my son since they became my son’s treatment team, a few of which made sense and some of which, I felt that I had no alternative but to agree with. 

I couldn’t go along with what felt to me like abandoning my son so he would get sick enough for a commitment.  I tried it for about a day and a half.  I decided not to go against my gut and my mother’s instinct.  I would not take away the only connection my son had to the outside world so that he would get worse.  Nothing about it makes good sense to me.

“You won’t always be around,” I was also told.

“Well, I’m not dead yet!”  I told the young social worker.  I’m not even a senior citizen yet.  I still have time to help see a difference in the healthcare my son receives, I hope, along with a change in American cultural perceptions about people whose brains work differently than “normal” brains.

The ACT team and I have also had disagreements about whether my son should have had antipsychotics forced on him.  I do not support this treatment for my son.  I think it is against his human and civil rights.

One time he went to the hospital for symptoms of depression.  The ACT team wanted him to be committed for a long-term stay, even though the hospital’s rehabilitation unit was closed at that time.  The hospital said if he stayed he would spend all his time in the day room watching television.  They said he would not receive therapy, but that they could force injections of medication on him.

I prayed.

creative mindsThe inpatient psychiatrist assigned to my son the next day was awesome.  He did not force antipsychotic treatment on his patient.  He said it would be like breaking his spirit. 

He spoke candidly with me about his opinions, which I agreed with and was truly grateful to hear.  He said he could not in his good heart force drugs on my son after having met and talked with him several times.

The doctor said something like… Your son has a free spirit.  He also has a strong adverse opinion about this medication.  He talked about the fact that my son was not a danger to himself or others, that he had not committed a crime or even bothered anyone.  Forcing a medication/drug on him didn’t feel right to the doctor nor myself.

The doctor was kind to speak to me while my son was there.  The only reason my son had to stay more than a few days was because I was trying to get the ACT team to come up and join us in an outpatient treatment planning meeting.  Everyone agreed that we needed a different plan.  The ACT team never showed for a meeting, and the doctor wished me well in pursuing other avenues of healthcare for my son after discharge.

He may not live the life you had expected, the doctor had told me, which I realized, but he has the potential to have a good life, without antipsychotics.  We discussed the fact that sometimes the side-effects of those drugs are worse than the illness, which in my opinion is a rare conversation to have with a psychiatrist.

The ACT team did not like that medication wasn’t forced on my son after he’d stated he did not want it.  They said it was most unfortunate that my son had this particular doctor.  I was aghast.  They said it only enforced my son’s belief that he does not need an antipsychotic drug.  I totally disagree.

I told them that I welcomed the doctor’s honest conversations with me.  I appreciated that he saw my son instead of a number or rather, a diagnosis waiting for a pill or an injection.

The ACT team’s psychiatrist told me this scenario (my son having access to a listening and caring psychiatrist) wouldn’t happen again.  She said she had many contacts at that hospital.   She said the next time my son needed medical attention that she could make sure he would be assigned to a psychiatrist whom she was acquainted with.  I didn’t think this was a good thing, and I would discover, eventually, that I had been correct.

“The next chance I have, I want you to know that I will advocate for a long-term commitment with forced medication for your son,” the psychiatrist told me in an angry tone.

I told her she should not act out of anger or frustration when it came to my son’s care.  He should not be committed because she was/is angry that things didn’t go her way or that the inpatient psychiatrist did not agree with what she wanted.  And most certainly, a commitment should not be planned for an indefinite time, before one is even needed.  That’s like a threat.  No, actually, it was a threat.

I’ve never had the same amount of trust in ACT services as I had before that conversation with their psychiatrist.

Thank you for visiting Dogkisses’s blog.  Please see link above for photo credit and copyright information for the beautiful orchid via Wiki Commons. 

 

From the desk of the disabled

the disabled=

Dan was funny and talented.  He wrote poems, songs, played the guitar and sang, sometimes performing  for various coffee houses or one of the locally somewhat underground etched out gathering places downtown.

Even with a few beers in him he remained smart enough to help  my teenage son with his algebra homework–- something I was not equipped to do.   He was also tall and handsome.  Everyone liked him.  They called him, simply, Big Dan.  He made us all laugh.  He was single and so was I.  We were the same age.  Needless to say, Dan and I had a passionate, though short-lived love affair.  He passion to party didn’t mix well with my responsibilities raising a teenager.

Dan and I often met in the center of downtown where the local teenagers, tourists and foot-travelers were having fun or stopping for a rest.  This was the downtown Asheville we knew before the 100 year lease on the Vance Monument ran out, leaving its reasons for existing to be annihilated by the local powers that be.

Our cultural downtown oasis would soon be over but that summer, before it all changed, Dan and I were wonderful lovers.

I often sat in the sun warmed grass around the monument while Dan played his guitar, an action he would later purposefully get himself a city citation for, due to his not having a license to play an instrument downtown.  He thought this was funny and looked forward to his court date.

“Have you applied for disability benefits?” he asked me one day.

I was taken aback.  “What for?” I responded.  The word disabled conjured up the image of my father.  He had been disabled. I wasn’t like my father I thought.

“How long have you been out of work?”  he continued.  Dan worked at a group home and was educated on the subject of disability.

“It’s been about three years,” I answered.  Hearing myself say three years did sound like a long time.

Looking surprised he said, “Depression is a disability and you can get help because of it.”

I remember that day.  I remember the grass.  I can still remember how it felt to sit there with Dan.  It felt really good.

I would slowly begin to realize many things about my life; the history of it; how and why it played out the way it had — and myself — I would in some ways meet myself for the first time in my mid-thirties.

It would be six months after that sunny warm day with Dan that I walked into the Social Security Administration’s local office.

“I have an appointment,” I said to the clerk.

“What are you here for today Mam?” she asked.

I leaned forward a little, self-consciously lowering my voice.  “I’m here to apply for disability benefits.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Desktop image from, IconDoIt, the blog — click on link for copyright information.

Thank you for visiting my blog.

Schizophrenia and Courage

If I could stand on a cloud above, and have our Almighty God ask me what I would like to do or be on Earth, I would say I’d like to be me.

I’d say could I please be the mother of that nice little boy who turned into a fine young man!

And if our Almighty God then said to me: if you choose to be that person, you will encounter a great many challenges, some of which you will simply not know how to handle other than to accept them, some of which will make you worry through years worth of sleepless nights, and some will give you pain– I would still want to be me.

I love someone who has the diagnosis and most of the symptoms of schizophrenia.

He is so much more than any diagnosis or symptoms he suffers.

childhood art

I just watched The Soloist. What a great movie.  Hollywood usually does not impress me with movies about schizophrenia but this movie did.  It doesn’t glamorize schizophrenia nor does it promote a treatment.  We get a realistic view of how the illness effects one man’s life.

Sometimes a brain takes in too much information at once — without a filter so that anything and everything are immediately noticed and perceived.

“Try to imagine not being able to filter external stimuli,” a friend of mine who is a psychiatric nurse told me.  “Every single thing; the birds, the leaf blowing in the wind, the cars, the people on that porch next door, the smell of the bagel shop, the ant on the ground, the shadow of a tree — everything coming at you as fast as the speed of light — you don’t have a filter allowing you to choose where you put your attention.”

I imagine this would be extremely difficult and challenging, like being on the front line in a war.

I read somewhere that, we cannot know what it is like to have schizophrenia, we can only know what it is like not to have it.

Many people with schizophrenia, as with the character in The Soloist, do not like taking anti-psychotic drugs.

Most places available to help people with schizophrenia require them to take these medications to receive the help.  We have club houses, residential living facilities and other programs to help people with this type of disease — but if the people who need these services do not take anti-psychotics, then they are considered to be, non-compliant, and lose out on most assistance available that might otherwise make a huge difference in the quality of their lives.

Schizophrenia is a heart breaking disease.  It takes so much away and brings things that nobody would want.  One doctor I talked to said it is, “arguably the worst disease a person can get.”   This is a large statement to make and a complex one.  It is also one I agree with.

These are my favorite lines from The Soloist:

“His mental state and his well being is as precarious now as it was the day we met.”

“Mental Health experts say that the simple act of being someone’s friend can change a person’s brain chemistry and improve his functioning in the world.”

“I can tell you by witnessing Mr. Ayers’ courage, his humility, his faith in the power of his art;   I’ve learned the dignity of being loyal to something you believe in…holding onto it,  and above all else of believing… without question… that it will carry you on.”

Talk about a story of courage!  Carrying on in the face of this condition we label schizophrenia must be one of the most challenging quests a person must face.

This post was originally published on October 25th.