The Riot Act

Outside the church where our MS support group meetings are held, my partner and I were met today by the group facilitator and a witness. They handed my partner a written warning that included this:


We talked outside the church for the next 2-1/2 hours, during which time my partner went to the bathroom twice. That gave me a chance to speak privately with the facilitator and witness — because I agree with everything that they and the other members have raised.

This is the second warning to my partner; the first had been verbal. The first complaints go back to January of this year — the facilitator was giving my partner “the benefit of the doubt” until a critical mass of complaints had come in, including from someone who had left the group.

When my partner asked the facilitator to elaborate on the written statement, the facilitator mentioned my partner’s “temper tantrums,” including the times she had “hit the table with her fists.” Not surprisingly, my partner does not remember those incidents.

The facilitator had been a physical therapist until she had to stop working due to MS. She knows the healthcare system. I told her about my attempts to get help from the sheriff’s office, the health department, the fire department, and DCF, and about the three therapists my partner had seen, prior to her start last week with Therapist #4.

When I said that I was not my partner’s legal guardian and didn’t want to be, the facilitator agreed with me. She said becoming my partner’s legal guardian would be akin to inviting “a boot up your butt.” That was good validation for me.

The facilitator also said the mental health clinic in our county is pretty useless as far as my partner is concerned, because “they will do what she wants.” She added that there is a walk-in psychiatric inpatient facility (in another county, about 50 miles from us) and suggested that I take my partner there. She said that just my having POA would be enough, especially if my partner starts acting out at the facility.

I’m not ruling that possibility out, but I’m not jumping at it, either. The facility could hold my partner for up to 72 hours.

O-kay. And then what? What are the consequences of that?

Living with my partner means I need to think several moves ahead, and I am a lousy chess player. Before I did anything like that I would want to speak with someone on staff, share my partner’s records with them, and ask questions that can let me put a mental flowchart together — as in Action A produces Result Q, leading to Consequence X.

And right now I don’t even want to think about the logistics of getting my partner to such a facility in the first place. It wouldn’t be a case of just getting her into the car and taking off. I’m talking about basic safety on the road. My partner would want to know where we are going and why, because we don’t make those kinds of road trips unless she has an appointment with the neurologist or a procedure that far south of us — and even then, the unfamiliar roads would tip her off to something. She is perfectly capable of acting out and creating a safety hazard while I’m driving.

As I told the facilitator, even with our “useless” county clinic it’s a big deal that my partner is in therapy again of her own volition, because I can’t force her into it. The facilitator agreed. I asked, and she said she would send me a written statement of her obsevations of my partner’s behavior, that I could give to mental health professionals and others whom I could approach for help. The warning sheet has already been checked through and filed with the National MS Society.

I just need to know who’s out there, whom I can approach. Because I’ve been knocking on a lot of closed doors, and I feel as though I’ve just about run out of doors.

I also told the facilitator about part of what I had posted during the last #carechat. I’ve replaced my Twitter name and avatar with what I use here:


The facilitator told me that my personal safety was a topic the group members had raised as they drafted the warning. The bottom line is that they believe my worry is well-grounded.

That was an important validation for me, too. I had dearly hoped I was overreacting, especially since I had raised my safety concerns to the public servants mentioned above, to no avail. The facilitator agreed when I told her that several years ago a friend and retired lawyer had told me to abandon my house.

I said that if it comes down to the house or my life, I have to choose my life.

I shed a few tears during the talk, out of a sense of relief. I felt supported and believed, validated because these people saw what I saw and experienced what I experienced, within the context of a monthly meeting. As things currently stand, my partner has not been ejected from the group, but if it comes to that I would still be allowed to attend. That means a lot to me.

My partner still doesn’t get it. After her initial acting out when presented with the warning, plus her two bathroom stops, she calmed down. But she then asked about minutiae and claimed she wasn’t being communicated to sufficiently. After we got home, she described acting-out behavior that she had witnessed in her past, in school, and used that to explain her behavior within the group.

I’ve checked the inpatient facility online and it seems geared toward drug rehab, which is not my partner’s issue. I’ve emailed the facilitator asking about that, and I also want to get her input on whether my various recordings and transcripts of talks with my partner might be helpful. I’ve submitted several of those to various people in the past, but so much seems to fall into a black hole.

Positives from this past week: I was able to sneak my partner’s neurological and other records to her new therapist, who confirmed that she had received them and that they are “very helpful.” We should get the initial assessment in about a week.

I also successfully dissuaded my partner from calling the cops on a neighbor, who is a Girl Scout leader. The neighbor had asked about the raised bed walls in our yard, which I had used our first summer here for growing vegetables but have not used since. Turns out the Girl Scouts are doing a gardening project.

My partner remembered our (admittedly bizarre) visit last April from a plainclothes cop, who had asked about our water barrels and who had told us that such barrels are used by pot growers. Partner was coming up with all sorts of scenarios concerning our neighbor and feared that giving her our raised bed walls would make us accessories to crimes.

I tracked down our area Girl Scout coordinator on the Web. He gave a glowing testimonial about our neighbor, which I was all too happy to pass on earlier today when I made my donation to the Girl Scouts. :-)

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Avatar of ejourneys

About ejourneys

Ejourneys cares for her partner, who has MS that acts like traumatic brain injury.  Author of Caregiving in Five Lines (all proceeds from sales benefit and contributor to several CareGifters anthologies, ejourneys is a panelist on Your Caregiving Journey's "Hot Topics" show.  She manages the groups Gay, Lesbian, Bisexual, and Transgendered Caregivers; MS Caregivers; and Caregivers Create; and is a co-founder of VRide.

10 thoughts on “The Riot Act

  1. Avatar of TrishTrish

    Oh, @ejourneys! I am so happy you got validation about partner’s behavior and a glimmer of hope from this facilitator about possible help. It must have been such a relief – you deserve that validation and more! You are very wise to think of the consequences of whatever decision you make and to prepare for it. (I have to disagree, though, that you aren’t a good chess player – you’ve been managing partner’s behavior for years and I think you play better than Bobby Fischer.). :-)

    Your personal safety and health is top priority. It has to be. You went through a very difficult period last year with very real worries about your safety. I don’t want you to have to endure that again. Whatever you decide, you have my 100% percent support.

    Take care and keep us posted on the new therapist. Fingers & toes crossed in that regard! Hugs!!

    • Avatar of ejourneysejourneys Post author

      Thanks, @Trish! It’s been surreal. My partner told me she wants to apologize to the group next month, so that’s a good sign. At least tonight it is. She was also sobbing earlier because the acting-out behavior she had seen in school had been a history teacher lifting a podium and letting it drop, somehow in relation to Kent State. Somehow she related this to her hitting the table and not remembering doing so. She added that while driving down here in 2003 she had seen three trucks on the other side of the highway — and if there had been four trucks, she might have remembered sooner about the history teacher and the podium because of the four students killed at Kent State. And she said she’s terrified. I don’t blame her — I can’t begin to imagine the tangles inside her brain.

      Now all I have to do is get over my own nausea. :-) (((Big Hugs))) back at’cha!

  2. Avatar of DeniseDenise

    Oh, gosh, what a difficult yesterday for you. I can only imagine how heart-breaking it was and is for you.

    I would encourage you to continue to go the support group meeting. It does not sound appropriate for your partner to continue. It’s not right that someone left the group because of your partner’s behavior. Support groups members should be able to attend a meeting so they can receive understanding and support. It sounds like this does not happen when your partner is in attendance. It’s a very serious situation when a support group leader enlists a witness—this speaks volumes of the level of fear others have around your partner.

    As you know, I have been pushing you to admit your partner to an inpatient psychiatric facility since February. EJ, she is very ill and in need of help. You are the one who can get her the help she needs. The support group director has given you a solution. I understand the questions you have about this solution. I think, though, you must pursue this solution. I think you must simply act.

    I understand how terrifying this is. I believe your partner to be controlling and manipulative. You are afraid of her. I totally understand that.

    My offer from earlier this year stands: I will come down and help you admit her to get help.

    Your partner does not want to be this ill. She deserves a chance to be better.

    You don’t deserve to live in an environment which is so toxic and dysfunctional that you must lock yourself into one room of your own home. You deserve better.

    • Avatar of ejourneysejourneys Post author

      Thanks, @Denise. There is something about which I need to be abundantly clear here.

      I have no qualms whatsoever about trying to get my partner into a facility. That is not the issue. I had first inquired about that back in 2009, as soon as I had gotten POA. I am not holding back here out of any feelings of guilt or betrayal.

      My fear is that my partner will receive the equivalent of a band-aid when she needs the equivalent of major surgery and will then be released back to me. And a wounded animal is much more dangerous.

      I need to consider the risks to my personal health and safety with respect to what I do and when I do it. Period.

      Of course I want her stabilized. Of course I want her seen by a competent psychiatrist who can deal with her issues and with whom she can form a good rapport.

      Let’s say that I get her admitted. She is held for 72 hours, maybe medicated during her stay. Then they let her go, with a prescription for a psychoactive drug. Then what?

      I refer you to these articles:

      From Amador’s book I Am Not Sick, I Don’t Need Help!: “There are approximately six million people in the United States with serious mental illnesses, and literally hundreds of millions more worldwide. The results of recent studies indicate unequivocally that about 50% of all people with these disorders don’t believe they’re ill and refuse to take medications that have been prescribed for them. That amounts to three million seriously mentally ill Americans who don’t realize they’re ill….More than ten million Americans have a close relative with mental illness who is in denial and refusing treatment.”

      There’s what we want to happen and what really happens, and I need to prepare myself as well as I can for what really happens. This is why I am taking the time recording/transcribing conversations with my partner, and why I am asking for documentation from other people.

      Because my partner is brilliant. She is articulate. Her neurologist said he can tell when she’s on her best behavior. She is described in doctor’s notes as “pleasant.” She can be very quiet and gentle and soft-spoken. And then she can turn that all around on a dime.

      So I need as much evidence as I can possibly collect, because my cries for help have been turned away in the past.

      A DCF inspector told me to get an Ex Parte. Fine. I tried.
      The police told me an Ex Parte won’t work.
      Friends told me to get my partner Baker Acted. Fine. I tried.
      The police told me Baker Acting my partner won’t work.
      Therapists recognized the danger of our clutter situation to the point where Therapist #2 threatened to have me arrested and my partner taken away if the clutter wasn’t cleared up.
      Fine. I tried forcing the issue and my partner acted out to the point where it scared the crap out of me and sent me to the police for help. They pooh-poohed my concerns.
      I approached both the police and the fire departments with photos of my house. I approached the police with a doorstop’s worth of medical records.
      About the clutter, the police and fire departments both said, “Oh, we’ve seen much worse.”
      The police told me I won’t be arrested. “We don’t tell the therapists what to do and they don’t tell us what to do.”
      I went to the health department, which concluded that our county can help people with substance abuse but that there is really no help for people with mental illness.

      I will keep trying. I will ask our GP if she can give me her written testimony to my partner’s behavior. Our county has two hospitals; neither has a psychiatric unit, but I will see if I can get any help or guidance there. And as I said in my entry, I will check in advance with the inpatient facility staff as to what I can do and the best course of action.

      I will try our local NAMI chapter again, though the meetings I’ve attended have consisted of a business meeting and a speaker and no support groups. Speakers have advertised services in which my partner is not interested.

      I just don’t want my actions to blow up in my face and place me in more danger than I am already in. That is the main issue here.

      I don’t mean to sound negative; I am just telling you what my experiences have already been. Those experiences are why I am so grateful for any support I have been able to get, both here and in the MS group. (((Hugs)))

      • Avatar of DeniseDenise

        Every time you brought your partner to a doctor’s appointment, you had a chance to get her the help she needs. Before her neurologist appointment in August, I encouraged you to ask for help so she could get help. You wouldn’t do it.

        • Avatar of ejourneysejourneys Post author

          Denise, I have asked for help from EVERY SINGLE DOCTOR we have been to. They could do only so much. I have documented all of that here. The doctors all tell my partner she is very lucky to have me, they sometimes read my advance memos and act accordingly, and otherwise their hands are tied. This is true of her neurologist as well, to whom I have also sent advance documentation.

          I have communicated with other people in similar positions to mine. They have come across the same problems I have.

  3. Avatar of PegiPegi

    @ejourneys, what a day! On the positive side, I too am glad that you got the validation you needed over your safety issues. So sorry the meeting went so upside down, I remember you saying how you were looking forward to it. You are in a quagmire right now, it’s a tough position you’re in with such difficult decisions to be made. But if there is a chance with the right inpatient facility that your partner could have a better quality of life, it’s definitely worth looking into. Perhaps the new Therapist can give you some guidance. If you need to hustle, I’m only a few hours drive, come on down. Hugs and Love.<3

    • Avatar of ejourneysejourneys Post author

      Thanks, @worriedwife! I definitely see the positive side in the meeting, particularly because of the validation, and validation in writing at that. I am definitely looking into things, with the caveats I’ve expressed in my long response to Denise, above.

      Here’s hoping I don’t have to hustle — but I hope we can all get together before the cruise sails! :-)
      (((Hugs))) and Love <3 back at’cha!


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