denese's Open Salon Blog

A Parents' Worst Nightmare: The Phone Call

Mon, 24 Sep 2012 21:09:21 -0400

Our son's car after a head-on collision

I am not awakened when the telephone rings at 11:30 on a Saturday night. My husband is and is filled with dread, like he is always filled with dread when the phone rings at that hour. But, he knows that as soon he hears what the caller has to say that everything will be okay. It's always okay. But, this time, everything is not okay. He wakes me gently and in the softest voice says, "Get dressed. James has been in a car accident." That is the only part of the conversation Rich can remember -- "a car accident"-- even though I ask him about it over and over again because I think there must have been even one more word that will tell me my son is safe. He can't remember.

I tell myself stories on the drive to the hospital about various accident scenarios that could have happened that might be somewhat serious, but not all that serious. I tell myself he had a safe car. It had airbags. It was older, but well maintained. It had good tires. Didn't we just replace the tires? This was an early Saturday night for him so what's the worst thing he could have been doing? He did not drink and drive. Did he? He almost never drove on the freeways. Did he? So, what's the fastest he could have been driving on a side street in this rain-- thirty or forty miles an hour? Is that right? And I pray in that very quiet car, in between the conversation that I'm having with myself in my head, and the questions I ask my husband out-loud about the phone call. But, then we hit the main street just outside of our subdivision that will take us directly to the hospital. It has been under construction for months, but open. Now it's barricaded. Ambulances, police cars and flashing lights are everywhere. And I know. Rich turns the car around. I don't remember the rest of the drive to the hospital.

Rich drops me off to park the car. I hurry into the Emergency Room entrance and am met at the door by a nun, a couple of nurses and an ER doctor. This frightens me. They shepherd me into a cold waiting room with green walls, blinding florescent lights, vinyl tile floors, and molded-plastic chairs and I say to myself, it's like this because people vomit in here.They say something I don't remember. I sit down opposite the door and am left to wait with the nun, who repeatedly asks me if I'm okay. I say, "I don't know." I notice that she does not touch me. I realize I feel like I'm made of sand, no steel, and think, "that's why she doesn't touch me, she thinks I will fall apart or hurt her." Rich finds me. I tell him I'm waiting on the trauma physician. Our eldest son and his fiance arrive, and Daniel asks, "He'll be okay? Won't he, Mom?" I am the mother and my role is to say that everything will be okay. This time I say, "I don't know." I realize I haven't moved in my chair. I wonder if I've spoken any of the words out loud that I think I have. I close my eyes and pray.

A police officer appears and seats himself opposite me, and says that our son, heading south bound, and the first of two vehicles traveling north bound, collided, which caused James' car to recoil to the right. When he tried to steer back onto the road, he over-corrected directly into the path of the second north bound car. I think to myself, "He was just going home." The officer tells me it took him an hour to cut James from his car. I remember Rich saying, "Jaws of Life." I think to myself, "So this happened at 10:30 at night?"And I wonder why I didn't know that this was taking place less than a mile from our house? Aren't mothers supposed to sense when something happens to their children? I didn't even have a twinge. I feel crushing guilt. Then I realize that I don't know if I could have lived through the hour it took to free him from his car and I thank God for not knowing. Then I feel ashamed for not wanting to be with my son. There is some talk about the condition of the road: a curve, the road construction, a transition from gravel and blacktop to cement. It is unclear who crossed the line. There was no sign of intoxication. James may have been speeding. I look up and lock eyes with the officer, and he says, "But, that could have been just a matter of perception." I nod. The other two drivers walked away. There were no witnesses. There was no time to brake; therefore, no skid marks. The crash will not be investigated. I thank the officer for cutting my son from his car and for not placing blame on him. Whatever the outcome, I don't want James to have to live with the blame.

The trauma doctor comes in and methodically runs down a long list of possible injuries including brain, neck, and eye damage resulting from the profound impact to the left side of my son's face; his beautiful face. The doctor stops mid-list to look at me because he realizes he has forgotten to tell me that my son is not dying. The only thing I truly understand is that the bones in his face have been shattered. He has swallowed and inhaled a great deal of blood. They are inserting a ventilator to breathe for him, and a tube to drain the blood from his stomach. They will place him in an induced coma. We won't know more until tomorrow after a head-to-toe scan when the specialists are called into assess his condition. They ask us if we want to see him but warn us that we probably do not. Rich does; and emerges from the ER and folds in on himself, sobbing. I feel guilty for not going into console my son.

Go home and sleep, they say, there is nothing you can do.

I do go home and take a Valium, which allows me to sleep for a couple of hours. Then I wake. I wonder where I am, what happened and why I feel like someone died. Then I remember. I rise very early and go to see my son in the Surgical ICU.

What a nightmare looks like (posted with permission from our son for the greater good)

This was followed by weeks in the hospital with family and friends, praying with and talking to James while he was in a coma; comforting him when he woke-up sobbing because he thought he was dead; watching him thrash in restraints, while being weaned from the ventilator; trying to console him because his eyes were swollen shut and leaking bloody spinal fluid; preparing him for major surgery to reconstruct his face just five days after the accident; suffering with him while he dealt with the pain after the surgery, which, according to the trauma doctor, "is like the accident all over again," but without the benefit of the coma or the medications they could have administered to him while in it.

James was very lucky. He suffered no optic nerve or neurological damage. His blood levels returned to normal as his spleen healed. The hole between his nasal passage and brain repaired itself after the 6 hour surgery by a team of 3 maxillofacial surgeons to drop what was left of his nose back in place and reconstruct it, his cheek, and the bones that support his eye socket. All told, the surgery included 2 cranial bone grafts, 10 plates and 60 screws.

The lead surgeon called-in specifically to operate on James' unique set of facial injuries was trained at our "charity hospital system," which is considered to have the best emergency medical training in the country. He told us that he had seen and repaired the most egregious of facial traumas, including those in the days before airbags, and many due to bullet wounds. However, James' injuries were worse. Every time he picked up a bone, there was another broken one to take its place.

Our "charity hospital system," which has served the poorest of the poor for the last 200 years regardless of ability to pay, is in the process of being dismantled in favor of public-private partnerships. Earl K. Long, our Baton Rouge facility will be shut for good in 2013. Charity in New Orleans, the largest hospital in the system, was destroyed by Katrina and hasn't yet been rebuilt. This year, in the face of staggering Medicaid cuts, it was proposed that an additional 6 hospitals be downsized to 10-bed "shells" and another in Lake Charles that served 78,000 people last year, closed. In 2005, this 10-hospital safety-net served a total of 650,000 individual patients, which is approximately equal to the number of uninsured Louisianians, according to the 2010 Census. Where will people without health insurance get their treatment in the future? Considering that our state has officially decided to opt out of the Medicaid Expansion portion of the Affordable Care Act, I would imagine that our poor (we have the sixth and second highest poverty rate for adults and children in the US, respectively) will seek their care in emergency rooms. Otherwise they will go without. They're used to going without.

James is home now, with boots on two multiply fractured feet, a swollen, asymmetrical face, and a weepy, decidedly smaller, misaligned eye. He'll need more surgeries but they can't start for another 6 to 9 months or until the swelling fully subsides. He has tried to reconstruct the day of the accident but can't remember a thing after two in the afternoon. He was on his way home from visiting his girlfriend-- a waitress at a pizza place. The receipt she retrieved shows he had a pizza and a beer. Photographs reveal an obviously totaled vehicle, with a front-end demolished to the extent that just a sliver of a space remained on the driver's side. We wonder how he fit into it. The engine dropped just like it was designed to do so that it did not crush his legs. All front and side airbags deployed. There was blood, but less than you would think. We don't know why his facial injuries were so severe. We don't know who or exactly what factors caused the accident. The accounts of the other two drivers, traveling together, differ, and James hasn't given a statement because he can't. The police and the car insurance companies have closed their investigations. James is trying to accept that he will probably never know what happened.

We struggled; especially in those early weeks to support him while he grieved over his injuries and the loss of his looks. I enlisted the help of a therapist, because my parenting skills seemed at-best inadequate and at-most inconsistent. I am trying to squelch the anger in my voice, stop looking for instant solutions, and stop saying, "You were so lucky." James has decided to defer his scholarship and sit out fall semester. He retained his room in the rental house he shares with friends, although he has yet to move back in. He doesn't want to go out or socialize. Most of his time is spent in on-line gaming or watching television. He goes to bed late and wakes up late. He says he wants to take an on-line course. I try not to ask if he's registered. His recovery will be at his own pace, not mine. We are taking a semester and sometimes a day at a time.

About six weeks after the accident, I was driving to work when I abruptly veered off to the side of the road and turned off the car. It took me a few minutes to steady my breathing and pry my hands from the steering wheel. It struck me that I had forgotten to make sure that James was still covered under our health insurance policy. He is 21 and I knew that adult children are only covered on their parents' policies until the age of 23 as long as they are enrolled in college full-time. It was too late to revisit the decision about James returning to school. Even if we could enroll him, he just wasn't ready. I had visions of us forcing him to take classes and then trying to make him study for them so that he wouldn't lose his scholarship. How else could we possibly pay for these bills we keep receiving for tens of thousands of dollars, and which, so far, have been paid in-full by our health insurance company? We couldn't buy him an individual policy because his injuries resulting from the accident would be considered pre-existing conditions. No insurance company would have him. Stories about families who had to file for bankruptcy after events like these flooded my mind. I tallied up what we could retain and what the court would take from us. I had just started a new job after being laid off from a healthcare company last year. We were still digging ourselves out of debt. Then I remembered that I did not have to worry about any of that because of the Affordable Care Act (ACA). Adult children up to the age of 26 were now covered under their parents' health insurance policies, period, no filing of school registration materials, no more bureaucracy; I had forgotten that I hadn't had to file school registration materials with our insurer for the last two years. It's almost unbelievable to me that a very short time ago, the ACA had almost been repealed.

To be honest, when I first heard about the ACA's coverage of adult children, I didn't think much about it; in fact, I thought it was insignificant, sort of a public relations carrot to dangle in front of the masses to appease them while they waited for the substantial provisions to go into effect in 2014. We were professionals with advanced degrees, had always worked, and had always had health insurance. Our eldest son, the one who does have preexisting conditions found work after his MBA and has health insurance. James wouldn't have any problems because there was no doubt that he would be in school and therefore would be covered under our policy; and if he wasn't in school and even if he wasn't employed, we would just buy him an individual policy (I hear they're supposed to be cheap for people his age and that, "the market" takes care of that). He was perfectly healthy -- the one child's insurability I did not have to worry about.

We are about ready to go to one of James' many doctors' appointments; and despite all that has happened, I feel grateful, or maybe "lucky" is a better word. We were just lucky that James' accident occurred during a period of time when this little piece of the Affordable Care Act was in effect. Due to a complex set of factors, including the timing and outcome of a Supreme Court opinion, we could easily have been on the losing end of this situation. Lucky. So lucky.

We need to make sure that everyone is just as "lucky." Let's support our hard won healthcare legislation. Let's help our president to help others to be as "lucky" as we have been.

My Life's Lesson

Fri, 17 Feb 2012 16:02:36 -0500

My life's lesson should be etched on my brain because I keep forgetting it, and that simple act of "forgetting" triggers some cosmic event involving one of my children, to which I respond improperly, which provokes parental-child angst, which forces me to remember "my lesson" all over again. This weekend it was an event with my son J that eventually whacked me back into alignment. The thromping always hurts, and not less each time, like you might suppose would happen, considering that I have plenty of practice righting myself while apologizing. It hurts more because I replay the memory of each last mistake while living in the new one.

This one started on Friday night. The whole family went to a dinner in honor of one of LSU's best alumni fundraisers-- a dear friend of ours and the children's surrogate grandfather. I was proud of all of us for showing up, despite having to meet a report deadline that night, in R's case; despite no babysitter and little grandchildren in attendance, in D & B's case; and despite it taking up a chunk of a Friday night, in J's case.

So, there I was basking in the glow of my priorities-in-alignment-family when J and I began to hyperfocus on each other. He thought I was moving too fast, and talking too loud, and I thought he seemed a little too pulled apart, at loose ends; discombobulated. I'm like Pavlov's Dog. Once I see what I think are signs of a lack of focus, I start drilling him on his life. How's school? Is he going to class? Is he studying? How are his grades? Should he be going to that outdoor concert, on Spring Break, or out later, for that matter? This despite him getting great grades last semester, and "Acing" all of his tests last week.

This makes him talk louder, move quicker and back away. The last text I received from him before bed that night was, "there is always some sort of miscommunication between us."

Now that hurts.

But even if these recent academic accomplishments were lacking, I mean, really, is it my nagging that is going to steer him on the right course?

Of course not.

So, what is my life's lesson? My life's lesson is to love by letting go.

My lesson comes from the pain I inflict on myself and my loved ones when I try to control them. It's not like I want to keep J -- or anyone else for that matter -- from having fun. Really. It's just that I don't want him to do anything that would make him experience something bad. So: go to class everyday; do your homework; get enough sleep; don't overdo it; find a nice girl; and then you won't: get bad grades; drop your classes; flunk out of school; lose your scholarship; be arrested; get hurt-- all of which have happened by the way.

I used to think that my behavior was normal for a mother. And maybe it is. But? I realize -- over and over again, unfortunately -- that if he doesn't experience these "bad" things, or others like them for himself, he won't be able to learn the life skills to be able to achieve the very things I want for him. And what I want for him is to be able to manage his own life and be happy.

It's not when will he ever learn?

It's when will I ever learn?

It's not the things I want for him.

It's the things he wants for himself.

Why I Keep My Mother at Home

Fri, 6 May 2011 10:05:10 -0400

My 89 year old mother has mid-stage probable Alzheimer's Disease or some related dementia and as my friend Susan says has become toxic. This week she is suspicious of and furious with me because of the form we need to fill out for her Long Term Care (LTC) Insurer. It requires her caregiver to mark the amount of time she spends on each task listed at the bottom of the form. Toileting, transferring, bathing and other Activities of Daily Living (ADL) are arrayed in the little box at the end of the page. So are "constant supervision due to cognitive limitations" and "medication supervision," as well as "cuing" for other ADLs, all of which apply. The major task in taking care of my mother is to be present, as she shouldn't be home alone anymore for the whole day. And when one of mom's three insidious chronic diseases present themselves, she needs ferrying to the doctor's office sometimes multiple times a day. Plus, someone should be there to make sure she eats, is safe getting in and out of the shower and dressing.

The problem comes because my mother doesn't think anything is wrong with her so she wants her caregiver to mark down only that she does "housekeeping," which is clearly not just unreimbursable but is likely to get the LTC policy discontinued. This weekend she accused me of making her caregiver commit fraud by lying on the insurance form.

And then today she tried to sell a Currier and Ives print from my childhood without telling me. She asked both of my children if they wanted it, but not me. I think she is trying to hurt me. My eldest says I'm making more of it than it is. My husband agrees with me. And here you see the beginning of a feud in my own home.

Therein lies much of the problem.

I have these forms spread out on my kitchen table, trying to fill out the ones that need tending so that mom gets reimbursed. Mom showed up in our bedroom today where I was hiding out, and wanted to see every form before I mail it, which means I have to confront her with the truth, which means that mom will be furious and life will be very nasty for a long, long time, or at least every week when I have to deal with LTC housekeeping. I did not sleep last night.

I really think that subterfuge and lying are the way to go here. Agree with her to her face, and send in the forms like crazy behind her back.

Our family therapist, mom's physician and a friend all tell me that maybe it's time for mom to be moved to a more appropriate environment, if only to save my sanity, marriage and possibly my relationship with my mother. However, sending her away seems like breaking a sacred trust. Just as I wouldn't send my husband away in similar circumstances, or my children, I wouldn't send my mother away. So, other than that, why do I keep my mother here in my house?

I think while writing, so I thought that writing the reasons mom should be at home would help me to better consider my alternative courses of action. So, here we go...

My mother lives in an addition on our house because:

She took care of me for the first 18 years of my life, sometimes when I was not so loveable and I owe her the gift of living where she wants to live.
She has helped us tremendously as a married couple with emotional support (when she was able) and financial support (when she was cognitively intact) and we owe her this much.
She paid for the beautiful addition on our house where she lives; we committed to caring for her and shouldn't renege on that promise unless we can come up with the money the addition is worth to set her up in another living arrangement. The sky will fall before that happens.
I'm a gerontologist and I know what happens to elders who are moved without their consent; they die.
She shouldn't be moved unless she wants to move.
She paid for a LTC policy and has the money to bring in a caregiver to take care of many of her needs during the day, which lightens the burden on us.
Paying for a nursing home or other extended care arrangement would be like throwing away money because her LTC policy wouldn't be needed or used; what a waste.
She is a part of our family; our children, grandchildren, grand nieces and nephews love having her here; so do we, but less and less often these days.
Her garden improves our quality of life; if she wasn't here it would be a weed bed or filled with stones and ugly red bark dust.
What would I do without my mother's love, because surely I would lose it if I moved her?
I could never forgive myself.
And finally: Some things you just do.

I knew that there was never another course of action but to keep mom at home, but writing it out helps me see the many reasons why that's so. At this point, if I could just get her to stop barging into our house to use our washing machine (she has a beautiful one in her own place) I think that half of the battle would be won.

The Nuclear Energy Issue and Other Ill-Fated Policies

Sun, 13 Mar 2011 19:03:25 -0400

The probable meltdowns that are now occurring at two (now the press says three) nuclear power plants in Japan started me thinking, again about the issue of nuclear power. You would think that as an intelligent people, we've had sufficient warnings of the risks involved in using nuclear power. I remember the Chernobyl meltdown and the Three Mile Island disaster, and know of people that have probably been exposed to nuclear radiation as a result of each.

This situation with nuclear power reminds me of another ill-fated energy issue: the recent recent BP disaster on one of their deep water drilling rigs in the Gulf of Mexico that spread 205 gallons of crude oil along 280 or so miles of the Louisiana coastline just last year. Not enough redundant safety systems, and those that they had were probably never going to be sufficient.

Where there's money involved, we will apparently find it impossible to err on the side of safety or sanity.

Despite how unlikely an event is judged to be, if the worst case scenario is an unremediable disaster that we can't figure out how to prevent, then it seems to me we shouldn't do it. Economic benefit/cost analyses be damned, particularly where the economists involved have an economic interest in the venture, whether they rely on employment in the oil company or the governmental agency regulating it.

The value they place on things like clean air and water are just made up numbers anyway. Sort of like the valuation of life years involved in the Pinto (Ford) debacle. The "fix" to their fuel system would have cost them $11 per car, but the cost/benefit analysis came out on the side of not fixing the design flaw ($50 million dollars' value placed on deaths versus the $137 million dollars it would have cost them to fix their cars). At least jurors had the right idea, awarding $128 million dollars in damages in the first court case, which was trimmed back by $125 million by the appellate judge, as a "matter of law."

If I had to bet on endeavors of the human race versus acts of nature (or chaos) I'd go with nature/chaos every time.

But I digress:

In pondering, writing, speaking to friends and researching the effects of nuclear radiation, I came across information that led me to believe that my mother, a cancer survivor might be eligible for compensation for living near nuclear testing sites. Apparently if you lived in certain counties in Nevada from 1951 to 1958 for 2 years and you got cancer (from bladder to brain to breast-- there's a list) you're called a "downwinder" and there's a trust set up for you by the US government to compensate you for being exposed to their 200 some nuclear tests --and, bonus, you get $50,000. My mother-- who had breast breast cancer twice, lived in Reno, NV in the county of Washoe in the early 1950s. Alas, too far to the west.

Here is the website for the Radiation Exposure Compensation Fund:
http://www.justice.gov/civil/torts/const/reca/about.htm

The "downwinders compensation fund" was only established via an amendment to a federal statute for miners and military employees, in the year 2000.

Here is my family Atlas. The yellow areas are those where the "downwinders" can receive compensation for radiation exposure from nuclear testing

Another friend just suggested that mom might have been exposed to radiation from nuclear waste from the Hanford Plant that has seeped into the water tables in Oregon and Washington. My mother was raised in Grays River, WA and lived in Portland, OR for most of her life. And it is true that all of our proximate neighbors on 23rd Street in Portland had cancers, mostly breast cancers that weren't fatal. However, our neighbors to the rear of us were stricken with breast cancer (the mom) and a lymphoma (the son, my age) that caused both of their deaths.

Post Script:

Now the Japanese press is saying that the wind is blowing toward the ocean and not toward the populace in the vicitinities involved. That's supposed to be good news. What a consolation.

What about my people on the West Coast?

To Plan or not to Plan: That is the Question

Sun, 12 Sep 2010 18:09:28 -0400

Image thanks to Christie Abshire Butcher's Students at the University of Texas, Austin

A friend, known as Artfish on Open Salon, posted the following on her facebook page:

"One day Alice came to a fork in the road and saw a Cheshire cat in a tree. Which road do I take?" she asked. "Where do you want to go?" was his response. "I don't know," Alice answered. Then," said the cat, "it doesn't matter."

To which I shot back:

"That's where the cat and I differ-- I don't think it matters where you want to go, there is always a right road to take."

My response touched off a conversation about "mistakes" that led into a discussion about the role of "planning," which now that I think about it, was probably a conversation about the role of "self determination" in living a "successful life."

Okay so I think too much, but that quote touched a nerve.

I think it struck me because for the first 40 years of my life I lived via the extreme planning method that was advocated to all of us (educated people) in fact, through the education process, whether in high school or college or graduate school, which, in short, was, "if you don't have a plan in life, you'll never get there." Never mind where "there" was. But, you'd never get "there." So, be afraid, be very afraid; and I was very afraid that I would never amount to anything.

Let me elaborate on what this method "meant:" You made a plan, generally in writing, for the next year (short-term), and the next five years and ten years (long-term) and then planned, generally in writing, how to set about trying to accomplish it. This process was reevaluated every year, preferably near the New Year, as far as I knew, though I'm not sure why, and life was assured to consist of some ordered (and successful) trajectory.

Living life by this method was a better guarantee of "success" than the "other method," which I assumed was "just drifting through life." I guessed that drifting through life meant that you didn't get an education, lived in a trailer park, had children by various fathers and never married.... or some kind of life as equally "unsuccessful sounding" as *that.*

Okay I had anxieties.

The first little crack in this philosophy appeared as I graduated from college in 1982 in one of the worst recessions in years and couldn't find but a secretarial job. This was not what I was led to believe should happen. I deserved some recognition of some sort. And I didn't get it. I was special, damn it. Plus, I planned.

To recover from this unpleasant and unplanned scenario, I just planned some more. I set my sights set on law school, which was supposed to solve all career snafus as I would be on a bona fide career track. Undergraduate degrees, obviously, no longer trained you for anything, so an advanced career track, like law school would fit the bill. Getting into law school was a chore and I don't want to belabor that time in my life. But, if you think that getting into law school was a chore, practicing it, with children, then with a possible move to Vancouver BC (which I bucked) then with a move to Louisiana (which I accepted, naively) was impossible. I struggled for years, mainly because I was so focused on my "law school" career, which I had written down, that I couldn't see beyond it or outside it, and I was miserable.

My husband can attest to years of misery.

At some point during these years of unmet goals, I had a breakdown and went to see a therapist, who fortunately was a spiritual person. Thank goodness for someone that believed in life, rather than the plans of small human beings.

I learned to plan but to be open to the possibilities that "life" (or God, if you are so inclined) throws at you. My first great opportunity was to take advantage of the time I had "off" to pursue involvement with a lifelong passion-- the Sarvodaya Shramadana Movement, a development organization in Sri Lanka that I fell in love with when I was 19 years old.

The second was to "study" gerontology, another passion. No goals. No nothing. These two passions intersected for me and I have years of volunteer and consultant, development and aging work to show for it, including another MS and a PhD. None of it planned.

I also "happened upon" a Duke post-doc, not planned, and went for that. When I got back, I "happened upon" a position of directing numerous evaluations of state social programs. And after that, I "stumbled upon" a job with private industry as their director of chronic care research, a gerontologist position that has been more than I ever could have imagined.

So, after the last 12 years of a fabulous life, I have to say that I am an advocate for being open to the Big Picture. You can plan, but be guided by your passion and by opportunities that present themselves to you, whether in "your field" and "within your plans" or not. Trust your gut. If you can help it, don't make "lists" (which I also used to do -- you know, listing the "pros" and the "cons" of a scenario).

Do what drives you. Be in love with your life. Follow the possibilities.

In that way, I truly believe, there will never be a "wrong road." All roads presented to you will be or will lead to the "right ones," divinely inspired, if you are so inclined.