Monday, April 21, 2008

Care is a relative term

The United States of America is suffering from a systemic health imbalance. This is not necessarily an issue of rich and poor so much as an issue of dollars versus sense. I have not seen Michael Moore’s film, siCKO, but I think I understand the reason why he made it.

As Americans, we expect a lot from ourselves. We view illness as a weakness that takes us out of the esteemed loop of productivity. Illness is not acceptable in our culture, but not because of the discomfort and suffering it brings. I think if you were to really probe most people, they would reveal their true belief: Whatever it is, you really need to just get over it and get on with whatever work it is you contribute to the country.

Our culture does not tolerate sickness. It is during serious illness that you are likely to find out who your true friends aren’t. People may ask how you are, but they don’t want to know. If you’ve had whatever it is for more than a month, those around you have already lost patience with it. Compassion is not what we do best as a society, at least, not in terms of managing illness, not even by those who practice medicine.

In the late 1990s, a large wave of Bosnian refugees was settling into life in the U.S. Bosnians lived comfortably before the war, and most had never known a life without socialized medicine. Despite the country’s other problems, the healthcare system was excellent. Many Bosnians fled to Germany during the war and received additional excellent medical care. I remember one woman who injured her shoulder about nine months after she arrived here. She was told that to avoid surgery, she needed physical therapy and to wear a sling for a month, but otherwise, she should go about her normal activities. A week into her problem, a Bosnian man she knew stopped by her office and said, “Ah, well…If we were back in Bosnia, you’d have pain medication and a month off of work with pay.” They both sighed and nodded silently with nostalgia. They understood what it meant to be treated like a patient instead of like a liability.

When my mom had surgery last week, I was surprised she was scheduled through the day surgery unit. The procedure is not uncommon, but it is quite intricate and invasive, and the recovery is slow and painful. My mother is 71 years old and she is not physically fit by any means. She suffered a transient ischemic attack a few months ago, otherwise known as a mini-stroke. She was kept in the hospital for about 20 hours and released when her vital signs appeared to be stable. No further observation was deemed appropriate. For a stroke. The ER bill was $5,000.

In the wake of that TIA, Mom tripped and fell in her living room, which lead to a rotator cuff tear. The tear worsened with time, and eventually required surgery. The surgeon looked at the MRI results and diagnosed the injury as being “significant.” He said that the joint needed extensive repair affecting several different areas of the joint.

Despite the serious nature of the surgery, the insurance company still felt there was no reason for my mother to be admitted to the hospital for an overnight stay. Instead, the hospital requires the patient to bring a designated caregiver. From the time the patient goes into the operating room, the caregiver is bombarded with instructions. Here is the beeper. You will be paged three times. The first time, you will go to Room B and meet with the surgeon who will review the results of the surgery. The second time, we will let you know that your loved one has been moved to the post-op room. The third time, you will pick up a call from the waiting room phone and receive instructions before you go into the recovery room to wait for your loved one to be discharged. Return the beeper after the third call.

Once in the recovery room, you sit with your loved one, but not to keep him or her company. Your role at this point is to get a crash course in nursing and post-operative care. You will be immersed in instructions and details coming from at least three people, who will fill your arms with illustrated handouts and bullet-point to-do lists. There is an assumption that as the person accompanying the patient, you are qualified and willing to provide this care.

I waited for my mom’s blood pressure to come up to a normal range and leafed through the papers. My head was swimming. So many do’s and don’ts. I had to get up to speed very quickly on the mechanics of a Stryker pain pump and familiarize myself with the steps for its removal, catheter and all. I had to review the steps for removing and replacing a sling, removing surgical dressings, cleaning the wound area, redressing it, and keeping it sanitary. I was expected to know how to apply a post-surgical icepack collar, how to sponge bathe the patient, monitor medication dosages and pain relief, ensure adequate fluid intake, and watch for signs of infection or blood pressure changes.

In addition, I had to figure out how to dress and undress the patient without jostling the immobilized arm. I was expected to know what foods she could tolerate and which would be problematic with the medications and side effects of anesthesia. I was somehow supposed to understand the mechanics of getting my mother in and out of the recliner, on and off the couch, in and out of bed, and to and from the toilet. I applied lotion to her arms and legs, and powder to her chest and breasts which were being rubbed red by the sling. I analyzed that problem and came up with a solution to pad the sling. I cleaned up vomit and blood and did laundry. I created a “breakaway barf bag” that hung on a TV tray and was rolled open in a way that prevented it from collapsing closed.

I received no training for any of this, only a pile of photocopies and some rushed verbal instructions amidst a whirlwind of recovery room activity. I have a master’s degree in Language, Literacy, and Culture, not nursing, and yet I was supposed to just know what to do once we pulled out of the hospital’s parking garage.

In between the patient care activities, I did all of the things one actually expects to do when helping a loved one after surgery. I made repeated trips to the pharmacy and the supermarket, as well as to the post office and various other errand-oriented locations. I made calls—to the doctor’s office, to my office, to my mother’s workplace, to the pharmacist, to my mom’s Internet Service Provider. I answered the phone and gave patient updates to those who needed the information. I opened mail, unwrapped plastic-bound magazines, and I cooked. I did more laundry. I washed dishes, cleaned the bathroom, changed the kitty litter, took out the trash and recycling, vacuumed, and mopped the floors. I fixed my mother’s computer and updated the software and virus scan utilities, a process that took hours and went very late into the night. These tasks were not at all problematic because I knew what I was supposed to do and any minor missteps would cause no harm. But hands-on patient care? Medical waste disposal? Catheter removal?

The care I gave my mother in the 72 hours following her surgery should have been happening in a hospital and tended to by professional nurses, LPNs, and med techs. What kind of ethical deficiency allows our medical system to operate this way? Who considers this to be an adequate level of care? How is it seen as safe to leave such intricate measures in the hands of an untrained family member? What happens to those patients who don’t have anyone to assist them in the days following surgery? Are they expected to just fend for themselves?

Our medical system and insurance companies have made it very expensive and difficult to access the care we need. Being insured does not guarantee that you’ll actually get sufficient medical attention. You will get whatever the doctor feels is least likely to be questioned or whatever the insurance company has determined is the most cost-effective treatment for the least amount of money possible.

My mother has insurance. In fact, she has very good coverage, plus AFLAC and a comprehensive prescription plan with flexible spending benefits. If this is what you get with insurance, then I want to know what the money we pay in premiums and copays is being used for. Those of us with insurance usually pay thousands of dollars per year for what we believe is enough coverage to ensure adequate care when we are sick. It appears, though, that our thousands of dollars are not being held for our rainy day, but rather for someone else’s opportunity to invest in the stock market.

Again, though, it’s not about the money. No, this is about the ethical considerations of healthcare. I want to know where those ethics went and why potential patient endangerment is considered a risk worth taking when weighed against the cost of providing a full course of necessary treatment. The people who make these decisions are obviously soulless, hollow beings. The fact that their decisions may be of no help to the patient are completely irrelevant because these people believe that policy should be dictated by statistics and not by the needs of sick people who pay hard earned money to buy insurance that will ultimately fail them.

Sunday, April 20, 2008

Whirlwind

I made it home. I slept on the plane as best I could in an aisle seat and with a restless three-year-old next to me (she has a cat named Boo-Boo and she misses him very much).

Holy crap, I'm exhausted. My shingles pain flared with a vengeance on the plane. Not sure what that's all about. Shortly after that started, I began shivering terribly. When I asked the flight attendant for a blanket, she looked at me, did a double take, and came back with two blankets followed by a cup of hot tea. I must have looked bad.

You know, I went back and looked at the post I did while deeply under the influence of Ambien. Besides the fact that I repeated myself, I was amazed by the radical deterioration of my typing abilities. Yikes.

OK, I am exhausted and all time-zone wacky. I need to lie down until I can think of something to say. I have an overwhelming three weeks ahead of me, and my job now is to figure out how I'm going to make that work. I also want to ponder how to write my thoughts about Wal-Mart. I spent quite a bit of time there this past week, and well, I just had some observations that will probably sound snide. Maybe more than probably.

May's brain is crispy now and she fears that given any more pressure, said brain will erupt in an ugly Bipolar Backlash. Hey, that would be a good name for a band.

What the hell was I just talking about again?

Zzzzzzzzzzzzzzzzzz.

Saturday, April 19, 2008

Nodding off and exhausted

Mom is sleeping. She's in terrible pain. The Percocet makes her throw up, as does the Keflex. She decided to forgo the Kelfex.

I got on the phone and had her doctor paged. He prescribed Vicodin (ha!) and some kind of anti-nausea in suppository form. OK, there are definitely points where I only go so far in my in my nursely duties.

The surgery itself went well, but it was an extensive repair and therefore painful. I just don't see how she's going to get through this without help.I'll call her insurance on Monday and see if she can get a home health aid.

OK, I've taken my meds and I'm visibly swaying. Off to bed. More later.

Friday, April 18, 2008

I'm overwhelmed

My mom's surgery went OK, but she's in terrible pain. The Percocet and Keflex make her sick. She threw up on me today, but I took it in stride. Tomorrow I have to remove the Stryker Pump, help her shower, and redress the surgical incisions. I have no idea what I'm doing, and since there seems to be a lot of "shadowing" under the dressings now, I'm worried that this whole process is going to be much more difficult than it reads on paper.

She keeps this house so damn dark I have claustrophobia. I mean, the wood blinds are kept closed, the windows are closed up tight, the vertical blinds are drawn...I feel like I'm suffocating. I don't like air conditioning as it is, but to not be able to see outside is just maddening.

My mother needs a lot of help, and I don't see how she's going to take care of herself after I leave. I sent an email to my siblings, but so far, the silence is deafening.

If I could afford it, I would hire Molly Maids to come in and give this place a good, thorough cleaning. It's disgusting, and my mother can't take care of it. She had the rotator cuff injury since last September, and the house really hasn't seen much care since then. I am not all that well myself, and my shingles pain flared up a lot today. I'm going to do what I can, but it won't be sufficient.

I have no idea what I'm doing, and don't know where to begin.

Wednesday, April 16, 2008

Looking out the window

I just want to say that as we flew over the Gulf of Mexico, I waved in Lynn's direction. If anyone else happened to look up, I hope you know that was me and I was waving at you, too.

2:20 p.m. Central Time

Stopped at Chicago Midway where nobody is friendly. I ate the most godawful stuffed soft pretzel of my life. I may never recover. Chicago airport food should automatically come packed with a travel-size antacid.

If the guy in the seat in front of me leans back any further, I’ll be cradling his head in my lap. Or slapping him upside the head.

My back is killing me. Two hours and 10 minutes to go.

30,000 feet again, and me without Kleenex

It took me forever to pack. I kept procrastinating and I just couldn’t find anything that had a lower priority. I finally packed this morning. My husband said it was obvious I didn’t want to go and packing just made the reality of going a bit too evident.

Totally unrelated side note: I just realized that although it may seem kind of sick, I launched iTunes and just clicked on a random album to listen to. It’s America: A Tribute to Heroes, a CD produced in the aftermath of the 911 attacks. Perhaps an ironic choice for flying, but it’s actually an outstanding collection of performances. At the moment, though, Wyclef Jean is singing, and frankly, I can’t stand Reggae.

I woke up in deep pain. I felt like someone had stomped on my liver during the night, and my ribs had joined in the assault.

My mother called at 7:00 and my husband answered the phone. I heard him say, “Well, she’s doing better, but this flight—with a connection—is gonna kill her. She’ll need to rest when she gets there.” He wished my mother well on her surgery and handed the phone to me.

“Hi, Mom. I’m just finishing my packing. Are you all ready to go for tomorrow?”
“Yeah, yeah. I had all of my pre-op stuff done yesterday. I’ll tell ya, I love that hospital. It’s a great place. Everybody is so nice there”

I stopped packing for just a second, a small pile of soft camisoles suspended in mid-air above the suitcase. Had she really just said that? This was the hospital where my father went for plasmapheresis and was pronounced incurable. How many hours had we spent there? How many days taking turns sitting in the one uncomfortable, vinyl-covered chair at the foot of the bed? Wasn’t this the hospital she railed against when my father was moved to a nursing home without my mother’s knowledge? When I pictured this hospital, I had nothing but memories of frustration and sadness. Why didn’t she remember things the same way? She never does.

She asked how I was feeling. I said, “I’m looking forward to spending several days doing as little as possible except tending to your post-surgical needs. I’ve been pushing the boundaries of reasonable activity and I’m not up for much more.”

My mother’s reply was quick and I could tell she was laughing for the benefit of the people in her work area who could hear the conversation. “Oh, I have a whip list—I have a whole list of things for you to do when you get here—things that I need done. I’m going to keep you busy.”

My husband saw the look on my face and cocked his head in concern. I tried not to scream something obscene into the phone. How could she still not be getting the message that my health is in a fragile state right now? Didn’t she understand, despite being told, that I shouldn’t even be making this trip? Apparently not.

“Well, Mom, if it involves lifting, twisting, bending, or exertion, I can’t do it.” I wanted to say, “My very able-bodied firefighter brother and his cop friend were just there three weeks ago. What was on their to-do list?” I already knew the answer so I didn’t bother to ask. I let out a sigh and told my mother I had to get back to packing if I planned to make my flight on time.

When I told my husband about the conversation, he did something he never does: He put his arms around me and gave me a deep hug. “I’m sorry honey. I’m sorry you have to go, and I’m sorry your mother just doesn’t get it. I’m sorry.” He recalled that I had once told him that as a child, I was only allowed to stay home from school if I had a fever or was throwing up. While at home sick, my sister and I were expected to get some chores in instead of just “wasting the day.” I remember once when I was on day three of the flu, my mother came home from work and exploded because I hadn’t dusted, vacuumed, or started dinner. I said, “But Mom, I was lying down. I’m sick,” and she shot back, “You’re not that sick.” I was 12.

And so, after getting off the phone, I finished packing and headed off to the airport. I must say, “troubled” must be written all over my face today. The TSA workers were exceptionally nice to me today. Even the guy who checked my ID looked at me, looked at my boarding pass, winked, and said, “Oh, off to better weather, huh? I just know you’re gonna get in some beach time. Maybe some Margaritas? That’ll shake off the last of winter, huh?” I tried to smile, and thanked him as he wished me a fun trip. “If you only knew…”

Once I entered the plane, I was looking down, dejectedly, hoping for a decent seat (Southwest doesn’t assign seats). The male flight attendant at the door dipped his head down low so he could make eye contact, smiled, raised his eyebrows, and welcomed me aboard. He could just as easily have skipped it and said hello to the next person. When he brought my snack (graham crackers! Sweeeet!!!), he gave me funny look meant to make me smile. It had limited success.

As it turns out, I have my precious window seat, but over the wing where the ride is not so bumpy and my body won’t feel so buffeted by any turbulence. By some stroke of very good luck, there is no one sitting in either of the other two seats next to me. This is good since while writing this I just had a little crying outburst. I tried to be quiet about it, but had someone been sitting next to me, that would have been embarrassing.

Next stop Chicago.

Tuesday, April 15, 2008

Florida bound

Wednesday morning should find me on way to Florida to be with my mom. Sigh. If only I felt better. She's a lot to handle under the best of circumstances.

I plan to keep in touch with my blog journal. It may be the key to my happiness.

In the meantime, I'd like to share something with you. The AdCouncil produced a series of Public Service Announcements about the importance of friends to a person suffering from a mental illness. I like it, especially the one on the subway platform (abandoned building??). It's perfect.

Mental Health Anti-Stigma PSA - Door Knob

Mental Health Anti-Stigma PSA - Friends

Mental Health PSA

Sunday, April 13, 2008

Things that go bump in the night

(pardon typos. I'm 90% Ambien-affected and too whacked out on Ambien to care about spelling.) I'm afraid to go to bed. It can't be helping that I'm watching "Ghostly Encounters" on Biography Channel.

It's late. It's past bedtime. I've always been nervous in the dark, but I can't sleep if there's any light in the room. When my husband is here, I'm OK. (Although, I must mention that last week, the cat crashed a lamp off of an end table, shattering the bulb. I sat bolt upright in bed--Sophie kitty, too--while husband and Sparkled never stirred. I thought, "must be an Ambien thing. I hallucinated. The cat reacted to me.") My point being, having a husband and a dog is not the same as an ADT security system.

My husband is not here. He's on a plane that at this time is approximately over Omaha. He won't get home until 1:00 or so. That's A.M. I probably won't sleep until then. Even if I do, I know my heart will jump out of my chest when he opens the door because the dog will go ballistic.

How did I manage to live alone for all those years?

My house creaks a lot. I looked outside--it's not windy. Little freaked out.

Right, right, left, across, right...

My husband is a good man. He is patient, he is responsible, he is faithful, and he’s very predictable. Now, if I were to tell him that he’s predictable he would object, but it would still be true.

My husband has not-so-latent OCD. He does things the same way at the same time in the same order every day. He is brand faithful, to put it mildly. He has social anxiety. He is vigilant about all potential problems at home, and he is convinced that I, with my much breezier attitude, am going to burn the house down if he looks away for just one minute.

My husband thrives on routine, structure, and predictability, whereas I tend more to the impulsive if not the chaotic. We balance each other perfectly.

My husband is away this weekend, so I have had some much-needed peace and quiet. Weekends here are not relaxing unless you enjoy the sounds of home improvement. Of course, this meant that I had to tend to the day-to-day tasks like washing dishes, weekend laundry, feeding the pets and walking the dog. Ah, walking the dog.

When I adopted the dog 2 ½ years ago, I assured my husband that I would be her primary caretaker. On our fifth morning outing, I suffered a bit of a mishap. The dog (we’ll call her Sparkle because the stupid name the shelter pegged her with) is a purebred Border collie. Border collies are known for being brilliant, highly trainable, fast, very active, and insane when in close proximity with any round, flying object.

And so it was on a sunny September morning that I learned why some dogs are not compatible with a retractable leash. Sparkle and I were walking around the park when a man with three Border collies waved at me from about 100 feet away. Sparkle and I crossed the grass and the guy said, "Wow. That is a good looking dog. Is she all Border collie?” I assured him she was. He stood up from petting her and casually tossed the ball he was holding. His dogs ran in the direction of the ball—and so did Sparkle. Great, except Sparkle was still on her leash. In less than a second, all 12 feet of the leash flew out of its canister, and when there was no more leash to unleash, the laws of physics kicked in.

My arm jerked forward, hard, and I was pulled up onto my toes. From my tiptoes, I was pulled forward as I went slightly airborne. I belly-flopped onto the soaking wet grass and I realized that I was still moving. Behold the power of the Border collie. In her pursuit of the ball, Sparkle managed to drag me for at least ten feet across the grass. I let go of the leash and checked myself for major orthopedic injuries.

It looked like my powder-blue warm up pants took the worst of it and had become a situation worthy of a Tide commercial. The guy with the dogs helped me and said, “Oh, I’m so sorry. Are you OK? If this weren’t so serious, I would have to laugh—that was spectacular. Are you sure you’re OK?” I assured him I was. It took us ten minutes to wrangle Sparkle, who now had no intention of getting back on leash if there was a ball to be caught.

I limped home. Seven years ago or so, I had knee surgery wherein a great deal of the cartilage behind my right kneecap was removed. As a result, I must avoid impact to my knee. Having just sustained a significant impact, my knee immediately swelled and sent searing pain shooting through my leg.

My husband has been the dog walker ever since. It’s not that I’m unwilling, but my husband is convinced that I am too uncoordinated to avoid a second round of surgery.

As I puttered around this weekend, I took a certain amount of pleasure in not having to indulge my husband’s OCD tendencies. I used the long cycle on the dishwasher and opened the door halfway through (grin). I did two loads of laundry without cleaning the lint filter in the dryer between loads. I turned on a lot of lights (ha!), and I made up my own meandering route when I walked the dog.

My husband and I have argued about this before. He takes the same exact route, in the same exact amount of time, every single day—twice a day on weekends—although he adamantly denies this. I, on the other hand, think it’s more interesting for me if I make up the route as I go. I also believe that it’s better for Sparkle both in terms of mental stimulation (BCs need that) and to familiarize her with more than one way to get home, should she get lost or abducted.

The dog was confused less than a block from home. She kept pulling one way and I would go another. The thing about a BC is, once they learn a behavior, they expect it to always be the same. I could see that my husband hadn’t been varying his route, after all. If he had, Sparkle wouldn’t be trying to do something contrary to her handler’s cues. I kept reassuring Sparkle that change was good and variety really is the spice of life.

When we went out today, I decided to let Sparkle show me what she knows. My husband is so busted. I never had to give a command or tug on the leash. Sparkle led the way with confidence and determination. She was all business, and she even showed me where she crosses the intersection on the diagonal, which street she crosses in the middle of the block, where all the dogs are hiding behind privacy fences, and where we should cut across the soccer field in the park. I was amazed by the precision of her routine.

Now that I think about it, a Border collie was the perfect choice for my husband, given his need for structure and repetition. Did I mention that Border collies are prone to OCD? At our house we call it, "Sparkle's caught in a loop again."

Sparkle is a working dog…if only we could teach her to do things like clean the bathroom and use the vacuum cleaner, she'd be worthy of that title. Oh, that’s right. She’s afraid of the bathroom and she keeps trying to kill the vacuum…

Friday, April 11, 2008

Early onset senility

What do these things have in common?
  • corn
  • coconut
  • snow
  • May
  • paint
  • bran
  • dandruff
This might be an indication of my mental state and stress level in the past few months--Turns out, I already posted the lyrics in the previous post back in January. My complaint was related--too damn tired, busy, and not feeling well.

Oh, no, I've lost my mind. Now where did I put...What was I looking for?
Let go... just let them get ahead of you
And nothing will happen
Let them leave you behind...Let go... just let your mind wander...
Over houses and roadsides
Over planes in the sky

You are so tired, you cannot sit down

You just pace on the floor
With your cigarette smoke angels above you

Stop... all the hoping and waiting the while
Let the hunger and hating sit down
And be nothing but air in a big, empty room
It's good... good enough to just sit there in peace
And the world can go right on without you
And forget what they want you to be...

Let go... you don't have to be anyone

© Amy Tiven/BMI


After therapy today, this song kept trundling through my head. I hadn't seen my therapist in two weeks. When I saw her last, I was lamenting the fact that I couldn't function because of searing back pain. I told her today that I've been struggling with this shingles outbreak. I told her that she, harbinger of doom and warner of dire consequences, had turned out to be right. I pushed myself too hard and it came back to bite me. She's been warning me that something was going to happen because I've been going beyond pushing myself and moved on into shoving.

My therapist wanted to know what I thought about this. I told her that I should have seen it coming. She wanted to know what I was doing to take extra-special care of myself during this difficult time. Uuuuuuhhhhh.....

She let out an exasperated sigh. "May, this is serious. Call your mother and cancel Florida. Stop going to work for a few days. Stop, stop, stop. Don't get my hopes up by telling me you made arrangements to work half-days and in the next breath tell me that you've been staying at work anyway."

I thought for a moment and said, "I am afraid to stop. I am afraid to do less. I am afraid that people will see I am not doing everything I am capable of. I am afraid they'll think I'm lazy or using the illness as an excuse to snag some free time. I am afraid of not being enough."

She stared at me, stunned. "May, are you kidding me? And why do you care what people think? You are sick. You need rest. Can I say it again? You need rest. Why do you think work is more important than your health? Your immune system is stressed out. If you don't do the right thing now, you could pay a much higher price later. May, honestly, why don't you think you're worth it?"

I couldn't answer her question, but she had correctly identified the core issue. I told her I had been ruminating on this topic for a week. It was as if I were compelled beyond my own desire and forced to just keep going as far as I could. I said, "I am afraid to stop."

She said that she has seen people push themselves relentlessly and then pay with their health. Heart disease, recurring illness, and cancer were some of the stress-related conditions that had been attributed to this type of self-denial. Didn't I care about that?

"I said it before, and I'll say it again: Death does not scare me, but I really hate to suffer. I want all or nothing. No time-outs."

"May, May, May. You need to think about this. You're courting disaster. How are you going to change your life now that you've seen what happens when you put your own well-being last?"

I told her that despite all of my soul-searching, I just didn't know. And the truth is, I don't. I really do think that I'll be written off as an incompetent flake if I give up any of my current responsibilities or projects, and then I won't have credibility ever again. I also care a lot about what becomes of the work I've started. I can't trust anyone else to do what I do or do it as well. It's not arrogance, it's just the truth.

I don't love myself. I barely tolerate myself. How can I possibly give myself permission to be less than I already am when I know I should really be much more?

I really don't know what to do.