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Absentia

More than a year ago my mother was committed to the state hospital, three hundred miles away. She hasn’t gotten any better. The last news I heard from the staff was they were going to try stopping all her meds and start over from scratch. The options are somewhat limited because the medication that worked (for a long time) just about destroyed her kidneys.

Before she was shipped off to the state hospital she spent time at a local, short term facility. In between stints there she spent time at an assisted living facility. When you add it all up, she’s been away since the spring of 2007. It seems longer.

In the mean time we’ve become familiar with the shortcomings of our health care system. We’ve seen first hand the lack of parity between the care given to our physical and mental needs. I’ve seen the lack of sympathy some have for those suffering mental illness. But worst of all, I haven’t seen my mother for a very long time. I’ve seen the container she used to inhabit… but she’s not really there.

It’s her birthday today. I may not talk about it much, but every day my mind inevitably wanders to two things: the leukemia coming back someday, and my mother. I don’t really worry about the leukemia, it’s just kind of there in the back ground. Similarly, I don’t shed many tears over my mother, it’s mostly just a persistent ache. Not today though.

I don’t want your pity or your sympathy. Instead, I want you to think about my mother if/when healthcare is debated in the coming year.

Maybe you’re thinking I’m taking advantage of my mother’s illness, to which my reply is: you bet your ass I am. I’ll take advantage of any story… any statistic… any evidence of injustice to make sure it doesn’t have to happen to someone else.

If you really want to know how I feel today, go back and read this post.

My mother’s day

There was a long time when I couldn’t get over feeling angry with my mother (like she had some choice in this). I was angry that she wasn’t like everyone else’s mom. I was angry that she made all of us different by association. I was angry that middle and high school were really hard – in part – because she was so different (and because I wasn’t strong enough to stand up for myself, or her). I was angry because the last year (or so) of hospitalizations, psychiatrists, and pharmaceutical shots in the dark have been a living hell for my father.

I was angry with myself for being so selfish.

I’ve read stories about other families dealing with mental illness, and they make me angry too. Some of them are able to make light of the illness at some point. There’s some touching memory or funny story to warm the heart.

I don’t have one for you.

I suppose it’s possible that one’s in there somewhere, if I’d just think on it hard enough, or if I had it in me to blow a little sunshine. But you know what? It feels pretty fucking overcast right now. It’s hard to recall a time when she was happy, and I want to cry. To think that someone could be so unhappy, could be at war with themselves in their mind, could live without hope, for so long… I don’t know what to think anymore. I’ve just about run out of words.

I could tell you how lucky we were (me and my sisters), how there are so many people who grow up with less opportunity than we did – no matter what problems my mother had. All things considered, you could probably say her efforts raising us kids weren’t just pretty good, but damn near heroic. You know what? I don’t get the sense that it makes her feel any better right now, so why should it make me feel any better? Thankful, grateful, and a pinch ashamed, but not better.

I wonder if mental illnesses aren’t the cruelest of all diseases. It doesn’t always kill (directly), but it can torture someone for a lifetime.

No, today I’m not angry. I’m numb.

What I really need to do is get off my ass and drive up there with my dad (to the hospital). It’s been way too long.

Six month review

There’s a Judge in this Judicial Circuit I think might be a few bricks shy of a wall (the ones on the bottom… that make it stable). I can’t tell you why due to agency policy about discussing work in public forums. It says I can’t.

But imagine my surprise when I looked at the original order of comitment for my mother (when she was shipped off to the state hospital) and saw a familiar name. When I got over the irony, it reminded me how important our Judiciary is – as if it’s not already obvious. (Not that I feel the judge made a mistake, I was just surprised to see he’d been assigned to the case.)

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Ah, but that’s not really why I’m writing this post. I’m doing a little writing today for the same reason I often write: to work through a little pain. Today was the day mom’s case was set for a review hearing (this time with an adminstrative law Judge, rather than Circuit Court) to extend the term of her commitment. Yeah, good times.

In part, I’m writing because I’d recently gone through the affidavits filed by her physicians (in support of further commitment), and they were beyond description… or full comprehension. It’s hard to reconcile descriptions of your mother that society at large would characterize dismissively, derisively, or in unflattering or insensitive terms.

I was speaking to a Judge I know the other day and the conversation conveniently lent itself to a question about psychiatric review hearings. “Have you ever done any?” I asked. “Oh, yeah,” he replied, “but those hearings don’t take very long because those people are crazy… and I mean REALLY crazy.”

I know he didn’t mean anything by his comment. I’ve known and worked with him for years, and he’s a genuinely nice guy. But it still stung. I didn’t think it was fair to say anything; in part because I wasn’t up front with him when I asked – turning my question into a kind of ambush. But on the inside I was reeling.

On top of that I have the words of those affidavits and my mother’s social worker circling in my mind. From the time she was committed she’s gone from general statements suggesting suicide, to very specific statements about how she’d do it, to trying to hurt herself… just like she said she would.

Her social worker’s reasurances that she’s improving sound very hollow.

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With my father out of town for a couple days to attend the hearing (it’s a six hour drive to the state hospital in north Florida), I was over at The House* to take care of poor Ted**. I took the kids with me since they love looking through all the old stuff me and my sisters collected over the years… and we ended up staying a while. I decided it would be cool to have some of my old soccer team photos, so I did a little snooping of my own. I only found one of the pictures I was looking for, but I found boxes of stuff my mom kept when my grandmother died. It was filled with hand written notes about my grandmother’s family (one of the branches of my tree I haven’t been able to fill in), old letters and postcards, and old pictures of my mother. I recognized her face in every picture, but not the eyes. The eyes were somehow different.

And then it hit me.

Her eyes expressed emotion. There was a presence to them. They weren’t haunted, or vacant.

And then my eyes showed a little emotion of their own.

*When your parents still live in the house you spent the better part of your childhood, there’s only one house you refer to as The House.

**Mom was a northeast, Massachusetts liberal. She named the cats Ted and Joan to get a rise out of my dad – who she suspects voted for Nixon – twice (to her eternal shame).

By the way, can you guess which one I am?

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Not free

Every now and again I sit down with my PowerBook and an entry for this blog almost writes itself. It doesn’t happen very often, but it’s a rush when it does.

This entry was not one of them.

I’ve sat down half a dozen times, trying to get this one out, but it just won’t go. Maybe I’ve just got to practice some tough love. Maybe it’s time to kick it out the door and let it sink or swim.

I learned a few things this weekend. The state hospital in Chattahoochee is a BIG place. Think college campus with it’s own fire station. Most of the buildings are old, register of historic places old. It almost looked like some of the older parts of the campus at U.F., with shaded streets, scattered helpings of open green space, and four story brick buildings. What struck me as odd, and fitting all at once, was that all of the buildings were painted white. (Odd in that brick should be red, and fitting because… well, just because. Something about white seems like it fits an archetype for a hospital.)

Another revelation was the cost… as in, there is one. Somehow it seemed that involuntary commitment came with free tuition. It doesn’t. There’s supposedly a means test for the fee, but I’m not sure who’s means are being tested. It’s expensive. It’s not my expense to share, but I will give you a hint: it’s considerably more than an average mortgage.

On the bright side, there was a lot of sun in Chattahoochee this weekend. I saw it every time I walked out to the car.

The hospital was nicer than I thought it would be, but my expectations were rather low. When your major is psychology at U.F., you get real familiar with the name Chattahoochee, and it’s not from all the songs of praise. However, I did see a lot of signs that the staff make every effort to make the patients feel at home. There were seasonal decorations everywhere. The lobby and family meeting rooms were all tastefully decorated, given the budget constraints they must be under (given my own familiarity with state budgets). The terrazzo floors screamed 50s chick, but they were oddly reassuring. They fit the place, and I don’t mean that in a bad way. Still, it’s hard to disguise a feeling of “you are not free to come and go as you like.” Big, heavy, locked ward doors and omnipresent nurses watching everything and everyone reminded me where I was, to the point it felt oppressive (and I was just a guest).

A few things were flat out worrisome. For one thing, the nurses didn’t seem to be the least bit intellectually curious. A few times I tried to ask friendly questions, stuff that I thought was pretty safe. I approached one nurse and asked how many patients were at the hospital… you know, in Chattahoochee.

“I don’t know.”

“Alright,” I thought to myself, “That might be a tough one.” So I asked how many patients were in that building (still trying to be friendly).

“I don’t know.”

“Not even a guess?” I asked, this time not to myself. That didn’t even merit a verbal response, just a very tired look that said, “go away.” Of course now my “smart-ass” gene kicked in, and I asked about the patients in the wards on that floor. I don’t know why I asked. I knew I wasn’t going to get an answer, and at this point I didn’t even really care. I wasn’t even curious anymore.

“I don’t know, I only work the one ward.”

It wouldn’t have been so bad if the answers weren’t given with the enthusiasm of Eore (the depressed donkey friend of Pooh).

So what was the deal? Surely this person had an idea, enough to venture an educated guess. How do you work someplace and not know a little bit about it? I wanted to ask if she was allowed to say. I wanted to talk. I wanted to crack the veneer of institutional indifference. If I wasn’t worth a small piece of human kindness, how much do the patients get? I should put this exchange in context though. Both afternoons I was there I heard the same announcement over the intercom: “If anyone would be willing to work the night shift, please call me immediately.” I think that announcement may do more to paint a picture than anything else I’ve said. I wonder if THAT contributed to the apparent indifference?

I thought again about priorities, how we pay for health care, and the apparent importance (or lack of it) we place in good mental health care.

I’m goin’ up to Tally

I’m making the drive up to the State Hospital in Chatahoochee to see my mother this weekend. I’m not worried that the 12 hours in a car will do me much harm, but the exposure to germs gives me pause. Still, it’s been five months since I’ve seen my mother. I simply can’t stay away any longer.

I haven’t checked the weather yet, but it could be interesting. Chatahoochee is practically on the “mainland” (considering Florida is like a giant sandbar). There’s a lot of cold air that doesn’t make this far south (with the warming effect of the Gulf of Mexico), so it can be as much as twenty degrees colder in the panhandle (north Florida). A twenty degree swing to a Floridian is enough to declare a state of emergency, so I’m planning to pack my parka.

I feel like I’m planning a trip to Europe. I haven’t done much more than sit at home and go to work for so long that even a little road trip feels like an epic adventure.

Note: Tally is state employee speak for our capital, Talahassee, which is the nearest city to Chatahoochee with a hotel (situated as it is in the middle of nowhere – I believe the technical term is “boondocks”).

Bad signs

Those are the kind of signs I don’t like too much… but who does? (Sometimes I think I just sit here and type shit, just for the sake of typing. Although, I’m getting to like this funky iMac keyboard, so there are worse things I could be doing that typing crap for the sake of typing.)

Dad’s making the drive to Chattahoochee for the first time this weekend. I thought I might go, but Cheryl thinks it’d be a bad idea, what with me being sick this week (again). To be fair, I can’t lay it all on Cheryl. I don’t much feel like spending all day in the car either. I’d sit here and tell you that my mother wouldn’t want me to get sick coming to visit her, but I’m not sure she’d notice one way or the other. The mom I knew ten years ago might not want me to come, but the 2007 model is pretty unpredictable. I’d tell you my dad would rather I stay home, but I’m not sure that’d be true either. It’s not that my father wishes me ill, but I think matters have gone way beyond being hard on him. I went by tonight for a lesson in cat feeding (a long story that I don’t feel like telling right now), and he let me in his latest fear… that his trip this weekend might be a waste. It seems the latest development is my mother is refusing my father’s calls.

If my father wasn’t already numb from nine months of hell, I think he would have been devastated. As it was, I could still see that it was hurting him. My dad would like to believe that my mother was making progress, but the bits and pieces I hear (many much worse that this) suggest she’s backsliding horribly.

The state web site for the hospital in Chattahoochee says it’s on the National Register of Historic places. This doesn’t make me feel any better, knowing the history of mental hospitals in this country (and to be fair, other places as well). I’m sure they’ve remodeled a few times since the original construction, but a reputation is a hard thing to overcome.

Is it me, or does it seem like I’ve typed this same entry at least a dozen times?

I just wish this was over. I’m well beyond hope. I’d just like to be done… and it feels like a horrible, despicable thing to admit. But in a way that’s o.k., because I feel pretty horrible.

I’ve decided that I’m going to put a stop to my habit of going in to work on mornings when I feel like shit, eking out a half day of work before going back home exhausted. Fuck work.

I’ve heard people say that swearing is the product of a mind that lacks creativity. Well you know what? I don’t feel terribly creative, but I do feel like a little catharsis is in order… and sometimes a little profanity is just what the doctor ordered. You may think I’m just saying that, but my sister is a doctor and she can swear like a sailor.

I suppose that’s enough typing for one night.

Before the game

Putting aside this evening, which was a total loss, today was a pretty good day. The latest round of steroids and antibiotics gave me a bit of a reprieve from sinus pain. Dad came over for a nice dinner. Afterwards we sat around the table sipping a dessert wine, just hanging out and enjoying each other’s company.

The evening was even better, considering the set back we had on Thursday. My mother was sent off to the state mental hospital in north Florida. Some of you may not realize how big Florida is. Despite living almost right smack in the center of the Florida peninsula (on the west coast), the hospital is still over 300 miles away, between six to eight hours by car.

I don’t see how this is a good thing for my mother. She’s never been much for traveling, she’s terrified to be away from my father, and now she’s essentially in Alabama… which might as well be on the moon, as far as my mother is concerned. My dad’s been visiting her every day, and twice a day on the weekends; and now he won’t get a chance to see her for another two weeks.

There used to be a state hospital just on the other side of Tampa Bay, but it fell victim to neglect due to budget cuts… and further cuts closed it. Now there are a few hospitals left, but nothing that serves densely populated “I-4 corridor,” which includes Tampa, Orlando, and Pinellas County (the most densely populated county in Florida).

Yesterday someone was telling me how they hated big government, and it’s propensity to “throw around money.” I thought about my mother being shipped off across the state due to budget cuts, and I just about had a meltdown.

You know, I started writing up this entry thinking it was going to be a positive, cheery kind of entry. Boy did I make a wrong turn.

Mom

It’s been a while since I’ve written anything about my mother, but it hasn’t been because nothing’s happening. I just don’t know what to say, or if I want to say it. That makes it sound kind of bad, but it isn’t; not really anyway.

The second sudden recovery came and went, but it was encouraging in that she didn’t lapse back quite as far as she had been. They haven’t needed to send her back to the hospital for fluids or medication, so that’s been good. However, they did have the Baker Act hearing for the involuntary six month commitment, which was ordered last week. The good news is she won’t be sent off across the state to one of the state institutions. She’ll get to stay where she is, close to home.

And there’s even more good news. My father found a way to pay for her care: Medicaid. It seems that there is a way to get long term care for your spouse. You just have to get a lawyer, and let him or her get creative with your assets.

But isn’t that really the American dream, to have the means to have your own attorney on retainer?

Cowardice

Written 8/18 and forgotten…

I know it’s a coping strategy – wholly reasonable and acceptable by most standards, but I feel guilty. This morning when the kids woke up I wanted to play, share their youthful enthusiasm, and take heart from the knowledge that some of that enthusiasm was because of me. This morning when my wife was quietly reading the news, sipping her coffee, I snuck up behind her for one of several hugs, reminding her how much I love her. This evening my dad came over for dinner and I was determined to be in a good mood, to discuss happy times, and chat up common interests.

Now everyone has gone to bed and I can’t help but slide back into this funk I can only assume is a blood relative to survivor’s guilt. I know my mother would want me to be happy. Some part of me believes that there’s nothing wrong with enjoying time with family; and that cheering up dad is probably a good thing. I’m glad to do it and all, I just feel guilty doing it.

Apogee revisited

I got another call from my father. He got another call from my mother. She’s had another sudden recovery. My dad is overjoyed. I think I disappointed him with my reaction… cautious and skeptical. “That’s cool, but I’d like to see it last more than a day.” I said.

My new family title: killjoy.

Queue the light-bulb… mom stops taking medication (or takes it erratically), suddenly gets better, starts taking medication regularly, gets worse, stops taking medication, suddenly gets better.

I’m no psychiatrist, but I don’t think it takes any specialized training to recognize a pattern.