Sunday, August 30, 2015

Palate Cleanser La Petite Comtesse Version

Un cadeau de La Petite Comtesse, la Fée Fuchsia, m'a envoyé hier. Qu'est-ce que une fille douce, non?


Source Unknown, but looks a lot like the Apple Dahlia. 

I'm really hoping that this next week is an improvement over the past week, which we just won't review, for the sake of sanity. Pretty flowers are a fine start. As was the 10 hour night's sleep.


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Saturday, August 29, 2015

Between a Rock and a Hard Place

A Rock and a Hard Place, attribution unknown

This brief post is about what it's like to be a case manager. It is a pastiche of actual comments from some of the truly wonderful case managers I've known. And I've known more good ones than bad ones.

"I feel horrible. I'm taking care of everybody else's neglected children and feel like I'm neglecting my own children."

"One day I came home from work, like usual, after 8 pm, and my daughter asked me why she never saw me anymore, why I never went to any of her extracurriculars. I had to quit doing case management. I couldn't bear it."

"So I do all this work, get a master's degree, hardly sleep, really care about each and every child in my case load, spend my own money buying them things my agency won't, and then this judge, who thinks that parents can do no wrong and practically own those kids, sends them home to get beaten with a belt? I have to get out of here. Maybe I can go into medical social work or something. I just can't stand this anymore."

"I missed his first words, his first steps, his first morning at pre-K. I can't miss any more."

"You're on your own out there. Your supervisor won't raise a finger to help and will only tell you what you did wrong. Your administrator's door is always closed. I'm up there facing a judge and there's nobody that has my back."

"At my agency they have all these layers. I'm supposed to have someone else do all the referrals for me. But if they don't get made or services don't get started, it's my fault, and you can bet I'm going to get blamed for it. But, if I do them myself, then I'm accused of not following their structure, and of being inefficient with my time. I just can't win."

"Overwhelmed? I was overwhelmed last year. This year, I'm almost drowned. I don't know where I can go. This is the third agency I tried. This system is broken, and while I want to try to keep these kids safe, no one's really helping me do it. Some judges give them right back and others don't want to even give their parents a chance. Staffing after staffing of what I'm supposed to be doing that I haven't done yet for this case or that. No money to do it with, all these insurance snags or limitations, no way to do anything nice for these kids, foster parents that you don't like, and program managers talking about money, money, money. I don't want to quit caring about these kids, but I have to get out of here, or I will. I am almost too tired to care about myself."

"I feel so terrible about leaving her case, because she has such abandonment issues. But my whole unit was reassigned. I just don't know why they do this. I'm so sorry. If I give you my personal cell number, you could call me with her, when you visit. I don't want her to feel like I just disappeared and forgot about her, like her family did."

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Friday, August 21, 2015

A Little Shop of Horrors

I title this post "A Little Shop of Horrors" in honor of a PET scan. Actually, a PET scan is a thing of surprising beauty, from a scientific and visual standpoint. It's only when it belongs to someone you know, care about or love, that you have a problem. But more on that later.

So here I am, writing again. It's like I drank some real Nepenthe and forgot this blog, right? Only not so much. It's partly that I had nothing positive to say, about the world, about child welfare, about so many things, that I thought, hey, fallow is good, fallow is fine. So now, by virtue of not posting for two years, it's like my own private diary, right?

You'll notice the delphinium flowers above. (Don't you have problems with delphinum/delphinia?) They're to honor my Mom, the lady that can grow officially Zone 8a plants in Zone 10b. That's my Mom. Growing things. Hey, she even grew me, though, for a while there, she sure didn't water me much. That long stretch between 13 and 24? Yeah, that was no man's land. DNRs were signed, grandparents died, muggings, breakups, rape, yeah, there was bad shit during that time. But in the end she showed up. She's been around on quarter time or so, since. But the early years, in between trying to commit suicide when I was 3 and when I was 13, those are the golden years. The books! The music! The theater! Oh, the enrichment of those years! They were the truly formative ones for me. So much of who I am, especially intellectually, owes to those years, in spite of the fact that pretty much everyone says I am my father's child, rather than hers.

So on Monday, I'm going to be 54, and the following Tuesday, Mom will be a frail 77. I have contemplated our age difference a lot recently, thinking about how unformed I was at 23, how wounded at 24, and then reflecting on how my Mom had me, at barely 23. I was, to say the least, a challenging child. I can't imagine. Especially, I can't imagine my Mom and my Dad and how they ever managed the quantum entanglement that resulted in a hurtful marriage and me. I can kind of understand, knowing both of them, what led my mom afoul when I was 3 (hey, long before post-partum depression was understood, and regular depression is still such a taboo... A failure of will, what a lack of discipline, pull yourself up by your bootstraps and just get on with it, no matter how many times you get knocked down!) and how my parents circled one another like a they were like bowling balls, or twin stars, on a gravitational track into a black hole. Swish, swish as they swirl around each other, both to be extinguished, crushed and then, the quanta exit to form new worlds.

Wow, that got side-tracked... So anyway, after years of diffident and sometimes hostile-avoidant interaction, here I am worried about my Mom. The same Mom I overtly blamed, in a sadly seen by her diary, at age 16, for the ruination of my "family" (not that it had been all that awesome, mind you) by her refusal to try anti-depressants, and for her lack of "participation" in my life. (Yeah, that thing about not showing up at all for anything in school still burns. Award ceremonies (senior year got 5, but friend's parents were the one's clapping for me). Parent Night (I was a guide, showing everyone's parents around but mine), College graduation (all she cared about was that Phi Beta Kappa pin but she didn't go to the ceremony, even for that...), So yeah, she watches Fox News now (incessantly and thinks Bill O'Reilly is awesome and that Bobby Jindal is soooo smart) and I watch BBC and Al Jazeera. Oil and water, my mom and me, the mostly my father's active, go-getter child, on a social justice crusade because, hey, ya gotta do more than fill your time gardening. (Oops, I do garden, come to think of it...) And yet, she influenced who I am, my intellectual curiosity, my interest in music, art, literature, more than my Dad ever did. My dad was never around much and then he left. Such common wounds, these. Yet bridged, or bandaged, by urgency, by foreseeing a future with so little time.

About 5 years ago, my mom lost 30 pounds. It seemed gradual, but one day, as leaving after a visit, I hugged her and I realized that there was just too little of her to be right. Enter the aggressive pursuit of fixing my Mom. After a 1.5 hour wait and total indifference from her then GP, I ditched him on her behalf and after asking the Provost of UM (connections, man!) for a recommendation, got to an autoimmunologist (old school) and a really good geriatrician. Aggressive pursuit of reasons for weight loss and a slew of other things (platelet aggregation disorder? Hematologist! Refractory celiac? Diverticulosis? diverticulitis? GI! Nodules in the lungs? Pulmonologist!) led eventually, five years later, to now. Ah. Let me talk about now.

At the last geriatrician appointment, my frail mom, who used to be 5' 4.5" was measured as barely 5' 1" ("Stand up straight, dear!" said the kind nurse with the Caribbean accent) and 119 lbs, up from 118 lbs (and way up from 107 lbs!), but I know it's only because she didn't take her sweater off. This was the appointment where we found out that the cancer in her lungs maybe probably came from elsewhere only we spoke in code because the language my mom speaks is "Don't touch me, I'm tired and I am tired especially of all this." Later, I read the PET scan report and found out that what we had been told was primary lung cancer and early stage 4 was actually primary colon cancer and waaaay stage 4. Like lungs, adrenal glands and colon. Oh, my! Three colonoscopies over the past three fifteen years, capped by a virtual colonoscopy in May of this year, and none of them showed... the clearly visible on PET scan massive lesion with more than half the maximum uptake of the radionuclide-tagged glucose (8.1 on a maximum scale of 15)!

Today, I saw the actual scan, with a good friend of my mom's who is her acupuncturist and a modest practitioner of Chinese Medicine. My mom, who naively but firmly stated to me that her friend had both seen the scan and understood how to read it, doesn't know that her friend Mary and I sat down and I basically interpreted a little shop of horrors for her. About the best I can say is that it hasn't made it to her brain. The lesion in her colon is so large that in comparison to her frail frame and narrow hips, it took my breath away. A lesion missed by so many exams, a lesion that will consume her.

In recent weeks we have made end of life preparations- Advanced Directives, Living Will, Designation of Healthcare Surrogate, Trusts. so much planning. Yet all I can remember of this, right now, is a narrow pelvis and a colon cancer the size of Texas, in my mind. I've had other friends who have battled cancer- some lost, many won, with all the modern techniques and treatments. But this is somehow different. Both the painfully accurate five years long conviction that something is really wrong with her, and heartrending reality that it's too late to do anything now that we finally, finally figured out what was wrong. And the unrelenting reality that she is being eaten alive from the inside out and there is nothing I can do, or anyone can do, now, to fix it. Did I mention how strained my Mom and I have been? Or that I would do anything to "fix" her? To buy her more time? To buy her no pain?

When we were working on the trust, the deed for her house will be tied to her trust, of course. I was so absorbed thinking of what will become not of the house, but of her garden, her life's work and the one thing that makes her happy. An ecosystem for cats, for birds, for squirrels, opossums, raccoons and at one time some sort of exotic fowl that I still can't confidently identify (cruelly killed by some predator, crushing my mom). No one will be able to maintain that garden, and as my husband says, with maybe too much gusto, no one is going to want that garden... Something inside me just quails at this. It was the one thing, in 54 years on this earth, that I knew made her happy. She, the one who grew camelias in Miami, delphinia, and so many other northern plants I love, the creator of magic, reader of stories with voices, the offerer of wonderful books, art, music, is dying. Somewhere, the intersection between PET scans and gardens spells disaster. I can drop a Google Maps pin and show you where. 

There is this garden. It's a slice of magic. And it's gonna die. Just like her.

It hurts.

It hurts so bad.

Garden as a metaphor for a person? Hey, why not.

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