I haven't been writing at all.  I have been trying to process and I am getting there, but I imagine that many of you must also encounter the occasional personal circumstance that makes it especially challenging to do what we do, so I am going to write about it and maybe it will help me or you or some of the people that we work with.

My person died.  The person that I wrote about, the person with the addiction and the mental health issues - she died in February.  She was my mother.  My Mom.  My brother and sisters and I had been preparing ourselves for her death for many years; we talked about it as an eventuality and tried to predict how we would feel, how we would respond. We thought we would get a phone call one day and just know that it was over.  We thought we would hear something terrible and sad and have to cope with the questions that inevitably accompany the departure of an Important Person who has been long absent from your life even as they have simultaneously influenced your own life - the choices that you make, the course you choose to follow; they are always there, even when they aren't.

It was different than we thought it would be.  We were so fortunate to be in touch with her over the last few months.  The doctors and social workers and nurses that cared for our mother in her last months helped her to accept our love and our interest as genuine and nonthreatening.  She did not allow them to share with us her grave prognosis, but I can only  imagine that our ignorance made our renewed relationships that much more true to her.  She knew that we wanted to be there for her because of who she was, and not because of how sick she was.  

Part of me wishes that I had been more aggressive in my efforts to get to see her sooner, but she always had a reason for delaying our visits and I didn't want to spook her.  And so I waited and when she finally asked me to come, I did.  

I am only now beginning to feel a bit more like myself.  And I like my job again. And I don't feel as though my grief is trying to suffocate me anymore.  It is here, of course. And I don't want it to go.  It is comforting now that it has loosened its hold...it connects me to her and reminds me that we were never completely lost to one another.  

That's it for now.  Maybe think of her when you are working with someone who seems to be alone in the world or who presents as a lost cause, someone who seems not to care for themselves or anyone else.  Everyone has someone out there who hopes that they will come back to them someday, even if it's just to say goodbye.

Once is Never Enough

When a family is not ready to say goodbye to someone who pretty much has one foot out the door, some of the medical staff get antsy.  They start listing all of things the family needs to do: make a decision; face the facts; say goodbye.  Some staff in particular seem to think that they have a certain, ummm...."way" with these families. They like to say thing like "It's time for her to go to be with the angels", or "Even if we did go ahead with the surgery, she would still be a vegetable", or "We have tried many, many medical interventions.  Nothing is working."  I understand the objective: help families across the finish line to "acceptance".  But it really is true that if you don't use the words dead or died there is a pretty good chance that your audience will not catch your drift.    

Of course, there are those who take a more direct approach.  These are the people who think that if you just repeat the prognosis often enough, the family will change their mind about needing more time before they can make a decision about withdrawing care.   Some people just need time.  Maybe there is someone coming from out of state. Maybe they have a spiritual or religious person they would like to consult.  Maybe they need to be alone with the information, to process it and to let the shock and numbness fade enough that they feel connected to what is happening.  

Last month a woman was told by the ER medical staff and again by the neurosurgeons that her father was not going to make it.  I spoke with the woman at length.   She understood the prognosis.  She made that very clear.  But she was not ready to withdraw care.  She said "I can't do it."  We arranged to admit her father, and I was surprised to see a resident from the floor making his way into the family room; he said that he needed to "talk to the daughter and get her to make a decision".  I explained that we had been through all of the options and that the daughter had made her decision.  He told me that he needed to make sure she understood the prognosis.  I said she did.  He went in and spent another 30 minutes trying to convince this woman to do something that she had already declined to do several times over the course of the evening.  

It really annoyed me.  I was thinking, if she does change her mind, will it be because she thinks it is the best thing to do, or will it be because she is tired of having to make the decision over and over again, or because she is intimidated by the repeated and obvious efforts to sway her? Would she feel guilty and wonder what might have been if she had only insisted on a day to think about it?  How would she remember us?

I understand why this happens; I just wish it wouldn't.  

 

As an aside, I highly recommend completing an advance directive.  My Dad had us do it one year at Easter - before we could have our pie.  It was definitely challenging for some of my siblings, as it is for many people. Death is scary: planning for it feels...like walking under a ladder or smashing a mirror to bits.  But scarier still, for me anyway, is the possibility that my family members might not be able to agree on what I "would" want, or that someone I love might lay awake nights, wondering if they made the right decision.   When families have had these discussions it really does make a huge difference in how they begin to experience their grief.   You can probably find the form for your state/locale on line.   Go on, check it out.  And bring a pile of them to your next family affair.   Serve with pie, even.

It Could Happen to You

A few posts back I was (if you can believe it) wagging my finger at the elements of the system that vilify and stigmatize those people who struggle with addiction.  I admitted a bias, and acknowledged that I have a person out there in the world who I hope will find the help they need if they should ask.  Very eerily, that has since happened.  So here is my Christmas miracle story: if it inspires you, okay...but at the very least it should suffice as a reasonable excuse for having temporarily abandoned our little community.  And in addition to reaping the obvious benefits, I also get to say (to myself, very quietly, and not in the least bit obnoxiously, "I told you so, I told you so".)

The person that I care about has a dual diagnosis.  Except that they were never diagnosed with the mental health piece because they refused to engage in any medical or psychiatric care except for that which was administered in emergent situations.  The addiction has been addressed many times and in many ways, but never successfully. As you might expect, the mental health symptoms have been exacerbated by the abuse of alcohol, and the abuse of alcohol is, in part, maintained by the person's need to "treat" the symptoms.  

Over the last 20 years, this person has become estranged from nearly all family and friends. Efforts to reconcile relationships and to help this person to get help were exhaustive. And exhausting.  And heartbreaking.  Until each of us, one by one, found ourselves at that place; call it a wall, a line in the sand, or a corner you have been backed into. Whatever...there we all were, scattered and split, and needing to help ourselves and each other.  Needing to rebuild our family.  So we have done that, and we have done it well.  But no one has forgotten about this person and no one pretends that things are the same or better without them.  This is just us without them, because when this happens to someone, eventually, as with any loss, you accept it.

Last month I was contacted by someone who had heard from this person and was concerned.  Something seemed very wrong and they wanted me to look into it.  I was reluctant to believe that anything was really amiss; I responded in the same way that I hate to see people respond to our patients who have similar issues: as though there was nothing to be done. But my internal social worker beat the hell out of my self defense mechanism a day later and I called this person, whose voice I recognized through a rasp that hadn't been there when I last heard it.  There was definitely something - many things - wrong.  A lot more wrong than "baseline wrong".

Shortly thereafter this person was hospitalized for treatment of a serious infection; they stayed for a week before transfer to a psychiatric care facility.  The admitting SW there told me that this person was "very frail and confused", "delusional and paranoid"; she articulated a plan for care that sounded reasonable: stabilize psychiatrically and then address the alcohol dependence.  So when I called the next morning to speak with the inpatient SW you can imagine my surprise when I was told that the MD had seen the person earlier and had written a D/C order.   I spoke at length with the SW, who eventually agreed to have another MD evaluate this person.

This person was admitted voluntarily the next day and stayed for 2 weeks. They were treated for various lab abnormalities (which had exacerbated delusional thinking and confusion); diagnosed with a personality disorder; and discharged with meds including an antipsychotic, an SSRI, and a mood stabilizer. They have follow up appointments at a clinic.  They have been talking, for the first time in many years, with their children and with some of their siblings.  

So thank you to the social worker and the doctor that were willing to take another look at this "crazy drunk" and see the person behind the disease.   Thank you for listening and for hearing us.  Thank you for believing that this person, that people like this person, are not necessarily beyond help, even if they have tried to get sober and failed every time; or have made consistently poor choices; or have refused to comply with treatment.

Thank you for caring about how this person got to where they are and for treating this person with a compassion and empathy that helped them to see themselves as someone that matters.  And as someone that can get to a better place.  

We don't know what is going to happen tomorrow.  But for today, we have someone back.  For today, this person feels loved and supported and knows who to call for help.  

For today, and for tomorrow, and for the day after that...no matter what happens next, I have a message from this person, my person, on my voice mail that tells me that she loves me. 

Still Cranky

Okay, first off, I would like to say how incredibly amazing it was to watch America vote last week.  In my own small town, in my bluest of blue states, there were lines at every polling place I drove past (yes, we have more than one!)  So congratulations to us and here's to hoping that everyone who has been motivated and inspired is also patient and supportive.

So, I was actually thinking as I went to work on Wednesday that it was going to be a really good week.  Unfortunately, it was not, at least from the view from inside this jar of fluff.

First, I went down to office services to inquire about an order I placed in August; I delivered in person (and emailed) my order for 250 ea of the materials we will be using as part of a bereavement support program.  My October inquiries had gone unanswered and I figured they were ready to be picked up.  No such luck.  No one knows what I am talking about.  I email the manager, who calls today to say that my email did not say how many copies I wanted.  That's because my email was an inquiry as to the status of the order, and not an actual order.  Grrr.

Then, I go to a committee meeting where an attending presents this "really great idea" from one of our residents about sending a card from the MD and RN on the case to the families of patients who die in the ER.  I raise my hand and explain that, in fact, as part of the bereavement support program, a card will indeed be signed; by the MD, the RN, and...if you please, sir, the SOCIAL WORKER.  You know, the person who actually spends the most time with the family and accompanies them to visit their loved one and listens to their memories of that person and answers their questions about what happens next and how to help the people they are worried will have the most difficult time coping with this loss?!

Well, that's not what I said, but you get the idea.  What program? he asked me, This is the first I am hearing of this.  Except that in February, at the first committee meeting, I presented the program.  He doesn't remember that, but he thinks the card is an awesome idea.  I can't help but feel that if I were a resident or some midlevel practicioner or an RN that my presentation would also have been hailed as a good idea.  Instead, it is seen as "social work" and completely blown off.  Grrr.

It gets worse.

The next day, I saw a patient who had been brutally assaulted by her SO.  She had a significant psych history, including SI and addiction, so I referred her for an evaluation, because at our hospital, there is a contract for outside clinicians to do the evals.  Twelve hours later I get a call from an attending to find this patient a "place to stay".  I talk to the clinician, who never saw my note and who says that the referral she received from the person I gave it to was that "the patient was homeless and all of the sudden mentioned that she felt sad".  My note was a thorough one; granted, the patient could have been playing me...but my job is to ask the questions and report the answers and make referrals as appropriate.  

Apparently, and perhaps because certain people have no respect for the profession of social work, my referrals are sometimes summarily dismissed as irrelevant or not even reviewed.  Which is infuriating.  And unprofessional.  And infuriating.

Fortunately, I was able to speak with the clinician and the patient and we ended up getting her into an appropriate facility.

There is an automatic bias against people who have a substance abuse issue and/or are homeless as deserving of intervention, even when they are the victims of crime.  Too often I hear people comment about "the choice" that these people have made and I wonder if they realize that their personal values are influencing their practice with people who are challenged with addiction and mental health issues.

I understand the challenges of working with the population; and it's true that many will not accept assistance or do not want to make a change.  But even if someone has been in the ED every other night for a year "for a sandwich and a bed", if they ask for help, aren't we bound to make a good faith effort to hook them up?

 I hope so, for the sake of the people I know who haven't given up hope that some day their loved one will decide that they don't like the view from rock bottom.  I am one of those people, and maybe that makes me susceptible somehow to patients who are not truly motivated to get help.  But if that keeps me from closing a door that someone would have walked through if I had held it for them, then I am okay with that.  

That patient was someone's daughter, sister, and mother.  I can tell them that I tried when she asked me to and that is what matters to me.

Stepping off soapbox and back onto sofa with fleece blankets and cats and knitting.  

Fright Night

Today I read that when Halloween falls on a Friday, car accidents with fatalities increase by 80% (relative to another weekday).  I am interested in developing outreach efforts that would give us the chance to share with people the experience of the families and friends of trauma patients in the ED.  Does anyone have any thoughts/experience to share?

Addendum:  Actually, having thought about it some more, I realize that there is a program in place right now that serves that purpose.  The city fire department and family court have partnered with the hospital to provide mandated education to at risk teens who have come before the court for one reason or another.  I see them "touring" the ED once in a while.  Maybe I should see about getting to show them where it is that we give bad news and hear about what that's like for people.  I don't know that it would make a difference.  But perhaps the proactive nature of the intervention will alleviate some of the frustration that comes with so often being able only to respond to trauma, which can leave one feeling more helpless than helpful on occasion.

There was a terrible wreck locally this week; youngish men driving recklessly and working hard to get high and not wearing seat belts.   Grrrr.