The Dilemma
Feb 18 2013 in Caring for Partners, ejourneys' blog by ejourneys
This is a follow-up to “One Of Those Weekends.” First, thank you for your responses and concerns — and validation for how much this coil business bothers and worries me.
Advance warning: This is a rant. And I am consciously using what my partner’s Therapist #2 referred to as “kitchen sinking” — i.e., throwing everything into my argument.
The coil is only the latest manifestation of the kind of stuff I’ve been dealing with for years. Namely, my partner’s insistence on doing unsafe things because she (a) doesn’t see the danger and (b) is convinced that what she is doing is helping the situation.
She also reacts very poorly to authority. (Hey, why not generalize while I’m at it?)
@Denise asks, “Is it possible for you to simply say, ‘This isn’t safe so it’s going’?”
I can say that the coil is unsafe, so it’s going. I can sneak it out of the house while my partner isn’t looking and dispose of it. That’s the easy part.
Can I stop her from buying a new one? No. I have no legal authority to do that. She is not incompetent enough. She is not dangerous enough in the eyes of the authorities.
Here’s what happened with the clutter situation: When the DCF inspector told me the house was in danger of being condemned, it was after I had warned my partner for years about her clutter. Vehemently.
Even after DCF, my partner still refused to comply. She micro-questioned everything: What was our deadline? What constituted cleaning? What was our deadline for how much of the cleaning? What did they require as proof of the cleaning? How much cleaning was acceptable to them? Over what time period? She insisted on specifics about every single little thing, otherwise she couldn’t even begin. Not only that, she said she couldn’t work under the pressure.
Imagine being exposed to those questions and arguments every single day, sometimes several times a day. There’s a reason why I waited until she was hospitalized before I took matters into my own hands on that score. Much of my living style these days involves waiting until an opportunity comes along and then jumping for it.
We had not come to physical force concerning the clutter, but my partner had once tried to wrestle my laundry bag away from me when I wanted to do my own laundry at the laundromat after she had taken our old washing machine apart (she swore it had mold; it didn’t) and couldn’t put it back together again. Her back had been gicked at the time and I was afraid of damaging it further, so I just stood there and held onto the clothes as tightly as I could until she gave up and let me go to the laundromat. She had insisted she would wash my clothes for me, but I had a conference I was speaking at and I needed to be prepared. (I now no longer go to conferences.) Her own clothes, which she didn’t want me to touch, had lain on the laundry room floor for several weeks after that. Based on past experience, I knew the same would happen with my own laundry despite her best intentions.
In 1982, before we had met and when she was in the hospital for “probable viral encephalitis,” it had taken three nurses to hold her down. Even 30 years later, and despite my larger size, my partner can be physically powerful. One of her childhood nicknames included the word “muscle.”
If I tried to remove the heating coil from the premises in her presence, I’m pretty sure she would fight me physically for it. Frankly, given her various conditions, I don’t want to go there.
When we lived in Boston, in a 100-year-old Victorian, my partner had insisted on flushing food scraps down the toilet. I couldn’t convince her to do otherwise. She insisted that the organic materials in the food scraps benefited life in the ocean, so she wanted them to go there instead of to a landfill. We actually had a composter out back, but she had not followed the “no fats or oils” dictum about composting, which led to neighbors’ well-founded complaints.
The old plumbing couldn’t take it. The toilet backed up into another tenant’s apartment while our landlord was literally halfway around the world. Thank goodness for email. I got a plumber in and got repairs made while communicating with the landlord in Australia and New Zealand.
That was a dozen years ago. That was when a neighbor had told me, “You know, she’s only going to get worse.”
I was working multiple shifts at the time. I couldn’t watch my partner every minute of the day. On the contrary — I was either at work or meeting freelance deadlines at home, because we both were dependent on my income. And we were already living in a marginal neighborhood.
As I have written here before, I have gone to the authorities for help, to no avail. The responsibility is put on me, but I am given no power of enforcement.
It has taken us years and much, much talk time to heal our relationship from my forceful decluttering, and frankly the house is reverting to its old state little by little. If I force the issue on anything, I jeopardize our relationship. I’m not talking about a “Does she love me?” relationship — I am talking about my ability to negotiate anything about this household. I am talking about my ability to continue to work without her distractions, because I remember when we were at loggerheads every single day — because I tried to assert myself so that I wouldn’t lose my house.
@Gail asks, “[P]erhaps the neurologist could be employed to explain its dangers to her?”
My partner does not process explanations well. Neither does she listen well. She also interrupts frequently.
Therapist #2 once told her, “You’re not listening to what I’m saying. You’re not listening to what [ejourneys] is saying. You’re too busy formulating your own counter-arguments.”
This does not stop my partner from dragging out the therapist’s handouts on communications when she believes I’m not listening to her. She uses those handouts quite selectively.
Based on past experience, my guess is that even if I could sit her down in front of the neurologist, show him my photographs of the coil, and have him explain the dangers to my partner, she would find some reason to rebut those arguments. She has argued against the clutter photographs I’ve shown to doctors by saying that I took them at an unflattering angle. Heck, she didn’t listen to the DCF inspector, who had been here and had seen our living conditions for himself.
As for what the neurologist has already said, my partner quizzes me on whether what she says sounds schizoid or psychotic. I often beg off answering, because when I answer in the positive, she throws it back at me and says that this is how I feel. The neuro once told her to her face, prior to her diagnosis, “You’re either demented or you’re crazy,” to which she didn’t seem to respond at all. (I think he was being blunt to see if she would respond — and, if so, how.)
She uses the heating coil because she doesn’t like the fan action of our HVAC system. In other words, it hurts her in some way. So, by taking away her heating coil, I am hurting her, and she is fighting to keep the heating coil to protect herself.
And if we have, heaven forbid, a fire? I am willing to bet she would find fault not with her arrangements, but with the extension cord or with anything else that she can rationalize. She would find a way to use the coil again, by replacing something else.
When I tell her my worries, she can be very reassuring — in her eyes.
I could show the photos of the coil to our local firehouse. They’re volunteer firefighters. I’ll bet they’ll tell me the same thing the DCF inspector did. Will I get any help in enforcement? Not bloody likely.
@Trish asks, ” Is there a different (less dangerous) heating solution that your partner would go for?”
We’ve tried. My partner is open to alternatives as long as they meet her requirements. Anything that has a fan of any kind is an automatic no. We have looked at fan-free baseboard heaters, but they’re not powerful enough. Most other non-fan heaters seem to be ones that are oil-filled. In addition to the oil itself, another danger is their placement requirements and their required distance from other objects, which is incompatible with my partner’s clutter.
I don’t mean to sound negative. I don’t mean to shoot down your well-thought-out and heartfelt suggestions. Your care and concern mean more to me than I can express. To be perfectly honest, I have been scared for a long time and I feel as though I’ve been living under siege for a long time. I don’t like to think about the risks I’m taking, because I feel powerless against them and against my partner. I work on enjoying and being thankful for what I have, while I have it. That includes my own life and safety and that of my partner.
Going for help in these matters has several times made our situation even more stressful and accomplished nothing constructive. Worse, what little advance we’ve made in communication gets wiped away and we have to start from scratch. Every time I ponder going to an authority or pressing the issue, I ask myself: Am I ready for that setback to happen again?
The two incidents I can point to where my partner had ceased her activities were her overinflating her tires and her picking up feces from outside and putting them in the fridge. In the case of the tires I had stayed up until 3 a.m. because she was convinced they would deflate to the right psi during the night. I then had her measure the psi of the tires herself. (This was after her blowout from a past overinflation. This time she had overinflated her 35 psi tires to 50 instead of 60 psi.) She was surprised to find that the tires had not in fact deflated. She agreed not to overinflate them in the future.
In the case of the feces, she is still arguing that what she did was safe. So I’ll have to see what happens if a dog poops near the house again and the poop isn’t cleaned up. My partner had rationalized storing the feces in the fridge until trash day, because she didn’t want them smelling in the heat.
The heating coil differs from these two other situations in that it relates directly to my partner’s physical comfort. I’ve tried suggesting bundling up more if she doesn’t want the fan on, but that creates a different discomfort for her.
I’ll keep looking for an opportunity to make a difference (at least my getting the “coil kennel” removed it from being directly in foot traffic). And I am open to more suggestions, truly I am. I hope there is something out there that I’ve missed, something I haven’t tried yet.
Thank you all for everything. (((Hugs)))

(Broken window screen, re-cast in grayscale. I took this shot shortly after getting my “good camera” in 2005.)

Denise said on February 18, 2013
Hi EJ–I totally understand the vent. I’m often given suggestions for my business and know what’s it like to have to explain, “I’ve done that.” Or, “Here’s why that won’t work.”
You’ve had so many battles to get help. It’s really just awful what you’ve been through. And, you’ve been in all the battles on your own.
I just can’t help but think of Gail’s comments that she recognizes herself during a psychotic episode in your partner. What if your partner is in the midst of a really long, untreated psychotic episode that can only be treated with an inpatient stay?
You are such a wise, lovely, amazing person. I’m here to support you. I don’t ever want you to be alone in this again. If I’m moving into an area that doesn’t feel supportive, please let me know.
ejourneys said on February 18, 2013
Thanks, @Denise. I’ve tried that one, too; it was one of the earliest suggestions I had received.
The bottom line is that the only way to get my partner a hospital stay (because it would have to be against her will) is to have her Baker Acted for observation. The observation lasts for 72 hours. The only way for my partner to be Baker Acted is for her to pose significant harm to herself or to directly threaten harm to someone else. A sheriff’s deputy told me that Baker Acting her would “do no good” and neither would an Ex Parte (forcing her out of the house), which the DCF inspector had suggested.
In my planned tour of home health care agencies (still on my “to do” list), I’m going to ask if anyone there has dealt with this kind of behavior. I’m toying with the idea of having someone come in just to spend some time in the house — hey, they can visit me!
No nursing care needed, just something that socializes my partner a bit and that perhaps can exert some influence, coming from a healthcare professional. When I had my regular checkup last month, I asked the nurse who took my BP (and who had examined my partner when working for the ob-gyn) if she could recommended a place. She had heard good things about one and said they didn’t do advanced home nursing care, but we don’t need that. What I really need is someone who can back me up, who holds some influence and is willing to work with my partner. Time for me to get on the ball and start setting up some of those “free consultations.”
Denise said on February 18, 2013
YES! That’s a great idea. !!!
I like your plan.
Lisa said on February 19, 2013
ejourneys,
My heart goes out to you. My husband has TBI and life has been pretty difficult with his mental state most of the time. I wonder if your partner would be interested in getting out to socialize with others instead of being in her own surroundings? I found an adult daycare facility that I take my husband to twice a week for a few hours. They play games, make crafts, excercise, and socialize. Some states also have grant programs to assist with the cost of the facilities (not neccessarily based on income but the disability itself). In the program my husband goes too, there’s a variety of disabilities which attend. There’s an RN and several CNA’s that staff’s the center. I don’t know if this info will help or not but I hope it does. I agree with Denise….Getting those consults is a great idea!
ejourneys said on February 19, 2013
Thanks, @Lisa. My partner was referred to an ICCD Clubhouse when she was maxed out of therapy at the county mental health clinic two years ago. She doesn’t want to go (she’s afraid they will force her into the hospital). Her social anxiety is very high. She spends much of her time at home either reading or sleeping. I was thrilled when she was interested in the MS support group, which we go to once a month, but I had to work to get her to go to that first meeting (mainly by saying that I would go with or without her). So far, that is the extent of her social life. I’m not sure if she’d be interested in adult daycare but I’ll check to see if there’s something in our area — and thanks! (((Hugs))) to you and your husband.
Karen said on February 18, 2013
Hi EJ,
I just had to comment because I went through similar things with my brother, who was a hoarder It’s so frustrating and so scary. And it’s hard for other people to understand why it’s so nearly impossible for you to change things.
Another person to back you up sounds like a good plan.
Hang in there!
ejourneys said on February 19, 2013
Thanks, Karen! Bless you for being there for your brother. (((Hugs)))
Jo said on February 19, 2013
@ejourneys (((hugs))) back at you.
I just read both of your recent posts. I read your follow up twice. A good rant deserves careful reading. Oh, how I wish I an “easy” button to offer you for this situation. You’ve covered well the options available and your latest course sounds hopeful. One thing comes across in your posts loud and clear: you love your partner. This wouldn’t nearly be as hard if you didn’t care so much. That is no small thing.
Indeed, hang in there.
ejourneys said on February 19, 2013
Thanks, @Jo! You and everyone else here are my closest thing to an “easy” button, because I remember what my life was like before I found this place! Without you, I would have a much, much harder time of this. (((Hugs)))
@gail said on February 19, 2013
Dear sweet @ejourneys,
I slept on this response. I have to admit. I feel so moved by your situation. Like @Jo says? I feel the love you have for your partner since if not you would have long ago foresaken her.
I agree with everyone here.
I – as Denise says – have been psychotic twice. My parents just took me to the psych hospital and the staff strageically asked me to sign myself in which you can do in IL and MN. (The latter being the Mayo Clinic.) It works here. Most probably not by you in FL.
We ALL love you, @ejourneys. I hope you realize that. If I am stepping on your toes? Just TELL me okay? I don’t ever want to do that because as much as I sympathize with both your partner and you? I LOVE YOU, @ejourneys!
Can you prove or support a doctor’s idea that your partner may be harmful to herself? Then perhaps you could get her infirmed too??? I don’t know the laws and you do in FL!
God bless you, @ejourneys. As @Denise says? I am not trying to overstep my lines but I have been there and being there is not too pleasant either – as you can imagine. Your utter hopelessness pulls at my heartstrings, @ejourneys. Please try your last ray of hope in this last post. {{HUGS}}
ejourneys said on February 19, 2013
Thanks, @gail! (((Big Hugs))) You are not stepping on my toes in the least — I very much value your love and caring and your experience. Even when my partner had overinflated her tires enough to cause a blowout and had put feces in the fridge, she was not deemed harmful enough to herself to be hospitalized. Her therapist (to whom I had also shown the clutter photos) instead gave her a preliminary diagnosis of schizophrenia, disorganized subtype. Part of our challenge is that schizophrenia and schizo-affective disorder are not official diagnoses but are called “preliminary” or “probable.” The one psychiatrist we saw had not read my partner’s records (with two weeks lead time) and had prescribed an antidepressant after my partner had given a couple of physical complaints. The antidepressant caused falls and “brain shock” and was discontinued; the psychiatrist didn’t make a diagnosis. (This is someone whom two other doctors had recommended!) I haven’t been able to convince my partner to see another psychiatrist. All we have are the notes of her therapists, the psychologist who did the neuropsych testing, and her regular and cognitive neurologists. The neurologists gave her a definitive MS diagnosis, but she has no definitive psychiatric diagnosis.
Denise said on February 19, 2013
Hi EJ–I thought of you throughout the night. Here’s my train of thought: Last week, the doctor mentioned schizo-affective features. I think this is the first time this has been mentioned as a diagnosis. After you wrote about it, I did look it up. I continue to think about something I read: “People with schizoaffective disorder have a greater chance of going back to their previous level of function than do people with most other psychotic disorders. However, long-term treatment is often needed…” (From PubMed Health)
Because the doctor mentioned this as a diagnosis, I guess I’m wondering about the treatment plan. I know the doctor asked a serious of questions during the appointment about your partner’s ability to function during the day. I guess I’m wondering if he asked about the impact of your partner’s behavior on your day and on you and your partner’s safety?
I know that it’s been an awful time trying to get the right diagnosis. If this is the correct diagnosis, I wonder if an appropriate treatment plan (meds, therapy) could be implemented?
I guess what’s nagging at me is this: Did the doctor give your partner a diagnosis without a treatment plan?
ejourneys said on February 19, 2013
Hi, @Denise — (((Hugs))) My partner has no definitive psychiatric diagnosis, only “prelimiinary” and “probable” ones. I give details in my note to Gail, above. The only treatment plan the neuro has for my partner consists of follow-up MRI and blood work — he’d prefer for her to be on Copaxone for her MS, but she doesn’t want to take it. She’d have to see a psychiatrist for a definitive psychiatric diagnosis. After our disaster with the first one, I haven’t been able to convince her to go to another — plus, she views psychiatrists as “pill pushers” and she doesn’t want any psychoactive meds.
@gail said on February 19, 2013
Dear @ejourneys,
As @Denise says schizaffective disorder is a better diagnosis than others and has a better outcome. (I think this since I have this diagnosis and am pretty well functioning along with the clubhouse – as Lisa says which I too go too – and extensive meds. And therapists.) I know this may be a long road but I talked to my case worker this morning at the clubhouse and she didn’t know FL’s laws but thought some kind of arrangement could be made for your partner to help her along.
You know, e-j, I don’t want to make anything worse than it is but it seems to me you could be miserable if this situation continues as it is and your partner would not be getting better either. Just a thought. {{HUGS}}
ejourneys said on February 19, 2013
Thanks, @gail — The challenge is that the terms “schizophrenia, disorganized subtype” and “schizo-affective disorder” have both been listed in my partner’s records as preliminary or probable diagnoses by non-psychiatrists, so we don’t have an official psychiatric diagnosis. My partner does not want to see a psychiatrist (especially after our disaster with the first one, who didn’t give a diagnosis). As I talk with more health care providers, I’m going to ask if there are any options available to me, since from what I’ve been told, my partner is not impaired enough to be forced into any kind of treatment against her will. Believe me, you are not making anything worse at all — and I thank you and your case worker from the bottom of my heart for brainstorming on our behalf! (((Hugs)))
Trish said on February 19, 2013
ejourneys, I hope you have felt our hugs this weekend! I read this post last night and was trying to come up with a helpful response. I realized that I cannot solve this situation but I can tell you that I am happy you have caregiving.com to vent your frustrations and to feel support. You have that in spades, here.
As you know, I’ve had my share of experiences with psychotic breakdowns and hospital stays (mom for depression; dad for bipolar disorder). Dad was supposed to be on meds for his issues but it was hit or miss if he took them. I didn’t have your situation in that I could visit him and then leave. I didn’t have to deal with unsafe situations like you’re dealing with.
I like your plan to get in home help. I also wonder if you could take a break for a while so you can gather your strength and refill your reserves. When I visited my dad at his house, my therapist at the time told me to think of it as visiting him in a hospital with set visiting hours so I knew the visit had an end. Can you bite off smaller chunks of time with your partner and then reward yourself with lunch with friends or sitting in your park?
Dang it – I didn’t mean to try to come up with solutions. I’m just here listening – I promise. Vent anytime!!
P.s. I agree with the others that it is clear how much you love your partner. The venting doesn’t take away from that (because, I know after a good vent comes a few feelings of guilt). Hugs, EJ!
ejourneys said on February 19, 2013
Thanks, @Trish! Truly, all your hugs bring tears of gratitude to my eyes. I feel blessed that you are all by my side here.
From what I’ve read, your dad’s aversion to meds was typical (and is a big part of Amador’s terrific book I Am Not Sick, I Don’t Need Help!). My partner doesn’t want psychoactive drugs of any kind or any of the MS meds.
Suggested solutions are fine! I feel very fortunate in that I can step away when I need to. I can go to the park when the weather’s good and to the library when it’s not. I also have respite when my partner is asleep, but that outdoor time really rejuvenates me.
I actually don’t feel guilt about venting (maybe I’ve repressed it; either that or my two years of therapy helped me shake it). I’m frustrated with my partner when her behavior makes me feel unsafe and powerless, but I’m much more frustrated with the broken system, rabbit holes, and Catch-22s we seem to be mired in. Being able to vent here among people who “get it” saves my sanity.
(((Hugs)))
G-J said on February 19, 2013
EJ, I have no suggestions, but I have a question. Does the heat coil make any difference in the heat in the house or does your partner just think it does? Does she spend her time next to the coil when it is on? I don’t have any suggestions because I’m sure that any ideas I have, you’ve either had or heard.
You are such a wonderful, inspiring person!
ejourneys said on February 19, 2013
Thanks, @G-J! My partner has the heat coil near our thermostat, so that the coil “tricks” the thermostat into not turning on, while the ambient heat helps warm the place up a bit. My partner is usually not next to the coil, but she is close enough so that I think she feels some of its effects. There might also be some heat dissipation from the Vornado space heater that I use in my studio (and which my partner doesn’t like because it has a fan). (((Hugs)))
G-J said on February 19, 2013
So, is the purpose of the coil to keep the thermostat from turning on or to provide heat? We turn our thermostat off if we don’t want it to heat the whole house.
Did you say in the chat tonight that your partner agreed to have the firemen give her an assessment of the situation?
ejourneys said on February 19, 2013
My partner wants the thermostat at no higher than 30 degrees above the outside temperature; we’ve recently gotten down into the 20s, so the thermostat is set to the 50s. The coil raises the reading into the 70s when it’s on. When my partner is well asleep and the fan is less likely to wake her up, I turn the coil off and raise the thermostat setting.
You heard right in the chat! I took advantage of my partner admitting to being overwhelmed (after her meltdown over the leveling sand) and told her that I still felt very unsafe with the heating coil and felt that my own worries and concerns were being ignored. She agreed to check with someone at the firehouse about the coil, so I’ll go there and try to arrange a meeting.
She still doesn’t want the HVAC fan blowing, but we’ll take this one step at a time.
Denise said on February 20, 2013
Hi EJ–I am sooo glad you expressed your concerns to your partner.
You deserve a strong voice in this, EJ. You make good choices, EJ. Think about the choices you’ve made over the past six month. Your choices have led to a 30-lb weight loss. You’ve pedaled 2,000 miles. You make healthy, wise choices. I understand it can feel like you need back-up about your decisions and choices with your partner. Because your partner isn’t well, she can’t make good decisions and choices. So, the scary part is that you have to make the decision and choices knowing that your choices will upset and anger your partner.
You are right. You are right to insist you both live in a healthy environment. You are right to stand up and say “No” when she makes a choice that’s not healthy for you and for herself.
I understand how scary it can be to think about getting more help for your partner. It’s been a process to get her to understand the coil is dangerous. What will the process be like to get her more help?
When you’re ready, say the word. We’ll help. I’ll fly down and help.
You’ve been alone in this so long that I can see how it can feel that you’re still alone, that you still need to look for back-up. You have all the back-up that you need. You have us.
ejourneys said on February 20, 2013
Thanks, Denise. I’m sitting here with tears in my eyes from your offer to fly down if need be. I can’t adequately express how much that means to me. (((Big Hugs)))
Last night my partner claimed she never agreed to have the coil turned off when we were both asleep and accused me of forcing the issue. She still expressed interest in hearing from the firehouse, but whether or not she’ll stick to that is anyone’s guess. As soon as I got out of bed (early this afternoon, after a night of insomnia and finally some sleep) she regaled me with quotes from Thomas Szasz’s book The Myth of Mental Illness — of how the powerless have to scream to be heard and are then labeled as mentally ill. I think I see where this might be going.
While she was asleep I took updated photos of the coil and some of the clutter and will bring those with me to the firehouse (less than a mile from here), which I plan to go to after the all-member chat. I hope I can get help from someone there. (Part of me wonders if they’ll just slap a citation on me as the homeowner, but at least that would be a definite signal that my partner may or may not accept.)
If push comes to shove I am seriously considering going public with this (as in linking to my posts here on social media and using my real name) and seeing what I can do to get her family further involved. Up to this point I have respected her wishes to not contact them and to protect her privacy. But she is very close to crossing a line that screams intervention to me. I had gotten some family cooperation back in 2011, to the point where her sister was ready to fly down, before contact dropped off. I am keeping my fingers crossed that they would be willing to help.
Thanks for your support on my choices, too. It’s taken a long time for me to trust these particular choices, when it’s me against my partner. Therapy for both of us gave me the validation I needed, and I see that validation every time I’m here, not just in responses to what I post but in what everyone else is going through. That’s been crucial in my battle against self-doubt, and overcoming self-doubt is half the battle. The other half is overcoming the emotional pain from doing what I have to do.
The third half
is trying to get help from the authorities. I’m still trying to figure that part out.
Chat with you et al. at 2, and then I’m off on my quest. (((More Big Hugs)))
Denise said on February 20, 2013
Hi–I totally understand how it easy it can be to question yourself. It’s difficult to be bombarded (like you were this morning) and come out feeling that you’re in the right.
You’re in the right.
From where I sit, it does look like you’ve crossed the line into intervention. Would it be possible to call her sister tonight or tomorrow?
There’s no doubt about it: This is painful and difficult.
Again, we can help you figure the third part (help from authorities) whenever you’re ready.
I truly am happy to come down and help.