(Editor’s Note: Today we welcome a new blogger, ejourneys, who cares for her partner.)

Last night I attended my first #carechat — and have just figured out how to blog here. Thank you all for being there!

I had mentioned in the chat that my partner and I have fallen through a lot of cracks, too much to explain in a tweet. So I want to do that here. I expect future entries won’t be quite the data dump that this one is, but I figured I’d get this all over with at once.

It’s taken us several years to reach my partner’s current diagnosis: multiple sclerosis that manifests as traumatic brain injury. Prior, my partner had been diagnosed with schizophrenia, disorganized subtype. Before that, she had been diagnosed with obsessive-compulsive disorder.

I am 53. My partner is 54. We’ve been together for 16 years.

In the case of people with schizophrenia and/or certain types of brain damage, a condition called anosognosia — lack of insight — arises. Namely, the patient believes (s)he is fine, or the complaints that manifest do not reflect what is really happening.

For a long time, this was called denial, but it’s not. The person really has no idea that anything is wrong. What’s helped me a lot in communicating with my partner is the work of Dr. Xavier Amador:
http://www.leapinstitute.org/

His “I am Not Sick, I Don’t Need Help!” presentation at the 2011 Nordic Psychiatry Academy was a true eye-opener for me (it’s over an hour long, but it’s wonderful stuff) and it led me to read his book. He also has a terrific (and much briefer) case study demo here:
http://ilearnsystems.com/LEAP_7D/fathersonstudy_fspreview_x105_previewintro.html

We are now at the point where a couple of doctors have indicated my partner’s lack of insight in her medical records. For years, she was very resistant to seeking any kind of help or assistance other than from me. Because her deterioration was slow, and because I had no legal standing, we did not start obtaining her medical records until I was able to get POA in 2009.

She’d had the POA paperwork to sign for years and was “going to get around to it” — disorganization is part of her disorder. She wasn’t against signing the papers, she just was too involved with all the projects she would start and leave partially done. Finally I prevailed on her to sign the papers six days before she was to have a hysterectomy (in addition to her brain disorder, she had cysts, fibroids, and endometriosis), saying that if heaven forbid something happened to her while she was on the operating table, I wouldn’t be able to do anything unless the POA was signed. Only after I had POA could I start getting records and coordinating doctors to try to find out what was really wrong.

Unfortunately, all those years of her insisting she was fine, not applying for help (while being unable to work), and my essentially being a legal non-person as far as she was concerned (despite the fact that I was supporting her full-time) meant that many of her older medical records are no longer available because they’ve been destroyed. I am currently in the process of trying to retrieve whatever we can. We have records from her 1982 bout of “probable encephalitis,” when she had been hospitalized and in a coma; but very little in-between. I had not known her during her 1982 hospitalization, and the cause of her “probable encephalitis” had never been found. (Interestingly, MS had been considered back then and dismissed.) After that hospitalization she had been able to work and to get an advanced degree. She was employed and socially active when we had first gotten together in 1995. Her last paycheck dates from 2001, by which time her paychecks had been few and far between.

When we prepared to apply for her disability benefits for the second time (more on that later), we were told — by health care professionals — to get present-day evaluations and records. No one had told us to gather past records of any kind. Social Security wants to know exactly when a person became disabled, so in great measure all the present-day tests that show overwhelmingly that things are wrong are largely discounted, because they do not date from the time when my partner had become unable to work.

A disability lawyer will not work for you until you have already been turned down by Social Security. Due to my partner’s rambling, her meeting with the Social Security agent for the first round had taken three hours. Since it was my partner applying, I could have no input. When asked why she was disabled, my partner reported that she had stomach problems.

I had gathered and turned in all the medical records I could get my hands on, including the records of her 1982 hospitalization. By this time she had also gotten an MRI/MRA in May 2009, under the direction of a local neurologist, who then told her that (a) yes, she had brain damage, and (b) no, there was no need for a follow-up. (This neurologist is very, very, VERY lucky that I am not a violent person. It is why the neurologist we currently see is a 75-mile drive away.)

The Social Security questionnaires were a nightmare to fill out, because of my partner’s rambling. I recorded and transcribed our sessions, and sent both the transcript and a CD of the actual recordings to Social Security. The disability lawyer who is currently considering whether or not to take our case told us that the transcript and recordings would be discounted. Social Security would automatically assume that my partner was being drugged to make it look as though she needed help.

After we had been turned down by Social Security the first time, I went to my lawyer and asked for a recommendation of a disability lawyer. He sent me to a colleague of his who refused to take our case, because she said it couldn’t be won. She then sent us to a special needs trust lawyer, which was the wrong place to send us.

(Lesson learned: No good deed goes unpunished. I had given savings to my partner in case anything happened to me. My partner calls this her “retirement fund” and refuses to touch it. It makes her ineligible for Medicaid or SSI; hence, we were sent to the special needs trust lawyer, when we should have been sent to another disability lawyer instead. It lost us valuable time.)

The bottom line with a special needs trust where we live (they differ from state to state) would be that I would sink funds into a trust for my partner and she would get what would really be a pittance from the state. If anything happened to her, all the money in the trust would go to the state. Thanks, but no thanks.

By this time, my partner was in therapy and diagnosed with OCD, because among other things, she has a serious hoarding problem. The way I could finally get her into therapy was by showing photographs of the house to doctors, including our GP. The GP called DCF on my behalf. The DCF agent warned me that the house was in such bad shape that it was in danger of being condemned for all the clutter and unsafe living conditions. I also got the help of a social worker, who pointed us to the county mental health clinic. Through that combined pressure, I was able to get my partner into therapy — by placing myself under the gun, because I could now lose my home.

My partner had been hospitalized twice in 2009, first for the hysterectomy and then for a bowel obstruction, after she had wolfed down a bunch of hazelnuts. During her second hospitalization I visited her during the day and did what I could to declutter the house at night. Hoarders are extremely upset when someone touches and especially gets rid of their stuff. The fact that I was trying to save my house simply didn’t register sufficiently. My partner is still upset about the clean-up, plus her stuff is piling up again, mainly in the form of paper files. She writes very disjointed notes that are then often misplaced, so she writes more. I’ve stopped almost all of our subscriptions to cut down on the magazine hoarding.

As the homeowner, I am responsible for upkeep. However, I have no power of enforcement with respect to my partner’s belongings.

Another thing that helped me get my partner into therapy was her behavior while she was hospitalized for her hysterectomy. In the first instance of good direction (we’ve had a few, thank heavens), a hospital worker told me to tell the nurses to record on flowsheets any unusual behavior that they witnessed. The three behaviors they recorded for my partner were, (a) keeping the thermostat in her hospital room turned way up and bundling herself in many layers of coats, scarves, and hats (which ultimately raised her temperature to 102.8 and required an extra day of hospitalization for observation); (b) walking from the shower into the hallway naked, complete with her stitches and terrible post-surgical bruises (in explaining her behavior, my partner said that she didn’t want to walk across the wet tiles of the shower stall to call a nurse to get her a replacement robe); and (c) hoarding — in her overheated room — leftover peach halves and cottage cheese by hiding her dinner dish in a drawer, to the point where it became smelly.

In addition to instructing the nurses to record these behaviors on their flowsheets, I had to ask specifically for those flowsheets when I got copies of my partner’s hospital records. The flowsheets cost extra, and they are not automatically provided when one asks for hospital records.

(Those hospital records and flowsheets were among the papers we had submitted to Social Security the first time around, along with the 1982 hospital records. They still turned us down.)

My partner was being treated for obsessive-compulsive disorder during her first year of therapy. Talk therapy helped her a bit emotionally, but it was not treating the underlying problem. Also, the way the system runs, the treatment plan was to have her declutter, when instead she wrote many lists as a way to deal with her emotional issues. On top of everything else, she had been sexually abused as a child.

Her functionality during 2010 improved only slightly. At the end of the year, her therapist went into semi-retirement and my partner was assigned to a much different therapist, who then diagnosed her with schizophrenia, disorganized subtype in January 2011. This second therapist told us to get neuropsychological and psychiatric evaluations, because the therapist was not an MD and the diagnosis was “preliminary.”

Several of my partner’s behaviors precipitated the changed diagnosis. First, she had experienced a blowout in October 2010 after overinflating her 35 psi tires to 60 psi, convinced they’d shrink back down at night (as I learned after the fact). Second, and on two occasions, she had picked up feces from the streets around the house and stored them in the fridge. (There have been additional bizarre and, in my judgment, dangerous incidents throughout the years.)

I could not get her hospitalized for observation because she was “not sick enough.” I had been arguing for years that she really needed a halfway house, but that option was closed to us. The closest thing to that is an ICCD clubhouse — http://www.iccd.org/ — and there is one not far from us. She has a referral, but I have no way to force her to go to it.

Some “well-meaning” friends suggested that I just kick her out. Even if I were to consider that (I’d rather be able to look myself in the mirror), it would be legally impossible. If she were paying rent before and stopped, I could legally evict her. The fact that she lives with me rent-free means that I would have to get an ex parte to remove her from the house; but according to the sheriff’s deputy I consulted, along with my lawyer, conditions are not bad enough to warrant an ex parte. Neither can she be Baker Acted (sent to a hospital for observation).

To get her placed anywhere, I would have to become her legal guardian, and her condition is not yet bad enough for me to even begin that process. More on that later.

Her new therapist mistakenly assumed that because I held POA, that meant I was also my partner’s legal guardian. (POA means legal guardianship in some states, but not where we live.) The therapist threatened to report me and have me arrested and said that my partner would be taken away if the house were not completely decluttered and cleaned in the time it would take for my partner to complete her six remaining therapy sessions before she was maxed out at the clinic.

This threw my partner and me into a panic, especially since we have almost no social support network. Our networks had fallen apart as I spent more time with caregiving and with supporting the two of us. I’ve been involved with NAMI (National Alliance on Mental Illness), but our local chapter currently has no support groups (meetings basically consist of listening to a speaker). I mainly reach out online where and when I can, and I try to do so in a way that protects my partner’s privacy, especially since her perceptions are so different from mine.

In March 2011, my partner’s therapist had told me to give my partner a week to choose what she wanted to keep, and then call a clean-up service to come in and work unsupervised while I stayed with her in a hotel room. There was no way that I would do that. Instead, I tried to arrange to get someone to stay with my partner while I went through and cleaned up the house. In the midst of all this, my partner threw a tantrum that scared the crap out of me.

I went to our county sheriff and spoke with a deputy, who told me that Baker Acting wouldn’t work and ex parte wouldn’t work. He also said that I wouldn’t be arrested. (“We don’t tell the therapists what to do and they don’t tell us what to do.”) On the other hand, he pooh-poohed some of my concerns about my own safety.

I met with my lawyer the next day. He has seen my partner in action and he was not pleased when I told him the details. He said he’d speak to someone at the sheriff’s department. He also told me that I was not my partner’s legal guardian. My lawyer added that in order for me to become her guardian, she would have to be in much worse shape than she is now, and that if/when I put that in motion, the court would “run roughshod” over me. He advised me to postpone a competency hearing for as long as possible.

I confronted my partner’s therapist and got an apology from her. Here’s one way the system is broken: my partner’s therapist had to show, in six sessions, that my partner had improved. The main issue had been her hoarding, since that’s what I had used (via DCF) to get her into therapy in the first place. But her hoarding had been only a symptom. From the point of view of my partner’s therapist and the way the clinic “worked,” a treatment plan had to be set in place and a goal met in those six sessions. Since the goal of decluttering couldn’t be met, it was taken off the table and replaced with the goal of improving the communication skills between my partner and me.

In other words, the real problem wasn’t being addressed. An impossible goal had been set, to be met within a ridiculous time frame. To look good on paper, all one had to do was change the treatment plan, to the point where some improvement could be shown before my partner was maxed out — meaning that her therapy was discontinued.

I was seeing a separate therapist at the same clinic, in the hope of picking up coping skills for all this. (The main way that therapy helped me was in validation, especially since my partner’s perceptions and mine are so different.) I was maxed out as well and my own therapy was discontinued.

At that point, my partner was referred to the ICCD clubhouse, a resource center run by and for mental health consumers. The clubhouse helps with housing, job training, and social skills — it’s as close as my partner can get to a halfway house. Volunteers are even available to transport people from home to the clubhouse and back, and the county has a bus service that goes there. The catch is, no one can be forced to go. And my partner doesn’t want to go.

For a while she considered going, saying she would ride her bike there. She hasn’t ridden a bicycle in over a decade, and the clubhouse is about a dozen miles from home. Last May she brought her bicycle and bike stand into the kitchen to change the tires, and there it continues to stand (one of her many unfinished “projects”). She doesn’t want me to move it. She’ll “get to it.”

(I won’t get into all of her physical complaints, including the many times I find her asleep on the floor amidst her clutter, often in the middle of the day.)

We were also making several trips each month to specialists and for tests: neuropsychological testing (which came to three all-day sessions instead of two, because of how long it took my partner to go through the tests; I was driving 30 and then 60 miles each way); neurology and follow-up MRI, plus lumbar puncture (75 miles each way for those); and additional specialists 60 and 75 miles each way.

In May 2011 we had an appointment with a specialist, set up by the neurologist we now use. When I heard it was for neuropsych testing, I mentioned the three days of testing that my partner had already just undergone; but the neurologist was not familiar with the testing center and so insisted we keep this appointment. Lesson learned: I should have also mentioned the testing center to the office of the specialist to whom we had been referred.

My partner does not travel well; I have to build in extra travel time for her and she can also get agitated on the road. Our appointment had been for early in the day at a health center 60 miles from us. We went up the night before and stayed in a hotel room. (Unfortunately, she does not do well in hotel rooms, either.)

We showed up to our appointment on time and were told the specialist was off at a meeting and would not be able to see us. Instead, she had sent two of her assistants to do testing. When I mentioned my partner’s three days of neuropsych testing, the assistants had to get her to sign a release form so that they could then call the testing center (with which they were familiar) and find out that my partner had already undergone the exact same tests they would have performed. We had essentially made the trip for nothing. What’s worse, one of the assistants told me that this wasn’t unusual, and that I was among the better informed of people who get lost in the system.

We managed to salvage the day by doing some sightseeing, especially places my partner wanted to see. But both of us were exhausted.

Her follow-up MRI in May 2011 prompted the neurologist to schedule her for an LP. He also sent her for blood work, which revealed a severe Vitamin D deficiency. (Finally, something was easily treatable! The Vitamin D alleviated some of my partner’s many physical complaints.) The LP uncovered her MS, but her presentation for MS was very atypical.

I also was looking for a psychiatrist for my partner, because we had been advised to get a psychiatric evaluation for her. I try to vet each doctor we contact by researching them on the Web, and I kept coming across psychiatrists who wanted nothing to do with anyone applying for disability benefits. Two doctors had recommended one particular psychiatrist (30 miles from us), so we tried her in June 2011.

It was a disaster. I make sure that every doctor we see gets a full set of my partner’s medical records, because more times than not, if I don’t print out and mail or deliver the records myself, there’s no communication among the doctors. I get whatever records I can, scan them into my computer to print out when needed, and also carry them all on a flash drive.

Not only had the psychiatrist, with two weeks lead time, not looked at my partner’s records, but based solely on what my partner told her, she prescribed an antidepressant that caused my partner to fall and that gave her “brain shock” (as she put it, she felt as though a cherry bomb had gone off in her head). When I confronted the psychiatrist, she admitted she had only “glanced” at the records. We high-tailed it out of there.

Another problem is that every time my partner sees a new doctor, she has to fill out paperwork in advance. Even with me helping her, she waits until the last minute and spends an average of two full days and all-nighters slaving over the forms because she can’t bear to leave out the tiniest detail. It’s not unusual for her to still be scribbling on the forms while I’m driving her to an appointment.

After we got the LP results, I sought out an MS specialist, with whom my partner also had a couple of appointments. We are awaiting that doctor’s report, but the MS specialist’s conclusion seems to agree with that of a cognitive neurologist we had seen in December. Both those doctors had reviewed my partner’s records thoroughly. She has a very thinned corpus callosum (indicative of MS) and extensive brain damage in her prefrontal cortex: the seat of personality, decision making, and “executive function.”

My partner has started with a new, private therapist of her own choosing. That therapist believes talk therapy won’t help; but my partner doesn’t want to go to a psychiatrist and she is very resistant to meds of any kind. I met separately with the new therapist and gave her the run-down. My partner wants to update her resume and go looking for a job, so I am using that to try to encourage her to take advantage of the ICCD clubhouse and its job training resources. (Neither the therapist nor I believe my partner can hold down a job at this point. For example, my partner herself has said that any employer would have to work around her sleep schedule, and her sleep is highly irregular.)

The neurologist wrote a “this woman is disabled” note, which the disability lawyer said is “worthless” as far as Social Security is concerned. The neurologist doesn’t understand why getting Social Security, for someone as obviously disabled as my partner is, would be so hard.

This is the third disability lawyer we’ve approached. The first one refused to take our case. The second one, which had not yet agreed to take the case, had lost records and asked me questions like, “If [my partner] gets disability benefits, will she pay you back for all the money you’ve spent?” I thought that was rather invasive. As far as applying for disability is concerned, we have a short window to reapply, otherwise we lose our chance entirely. We are currently trying to meet that window.

Pretty much across the board, among medical and psych professionals, we’ve been told to get Social Security disability benefits as though one could pick them off a tree. As my regular lawyer told me, what we are facing is typical. We are given many hoops to jump through, and blocks are placed in our way when we try to jump through them. We’ve been misinformed, stood up, discounted, and my partner has been misdiagnosed and given the wrong drug because a psychiatrist couldn’t be bothered to read her records. Meanwhile, I am in a position of having limited influence and legal power, but a lot of responsibility — but not as much responsibility as I would have, were I to become her legal guardian. And I’ve been told that legal guardianship would be a nightmare. I am also trying not to be an enabler.

A retired lawyer told me years ago to just abandon the house; I won’t do that, either. My partner’s new therapist went so far as to suggest that if I just left, my partner would be unable to function on her own and then something would have to be done. I said I was not in favor of that kind of scorched earth tactic. Despite her disability, my partner is a brilliant and compassionate soul, with a great sense of humor — part of the complication is that she has scored both in the single-digit percentile (more than 90 percent of people perform better) and has also gotten a literally perfect score on these neuropsych tests. She can be extremely articulate (I watched her and the MS specialist engage in a very technical discussion that made my eyes glaze over). She has been the recipient of grants and scholarships. And while she has lost a lot of her executive function, she still has more dignity and grace in her pinky nail than some of the people we’ve encountered have in their entire bodies.

Some days I feel completely lost, and sometimes I’m just a depressed wreck. But it passes, and then I feel ready to fight the good fight again.

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