Today My Sister Would Have Been 60

Cecilie and me in November 2008. I think this is a pretty good picture.

Today would have been my sister’s 60th birthday.

Twelve years ago, Cecilie died from cancer, so she didn’t make it to 60. Not even to 50.

She was, you might say, difficult to know. She had undiagnosed behavioral issues. My brother and other sister think it was probably something on the autism spectrum, but my parents never sought to have an official assessment. I don’t know why.

Cecilie lived in Fremont, California, when she finally was functional enough to live on her own. She liked to travel and went to many places, including visiting me on occasion.

One time, I was waiting to pick her up at the Baltimore airport and decided to buy a copy of Khaled Hosseini’s novel, The Kite Runner. I didn’t read it right away.

In fact, I am only just now reading it. A significant portion of the story takes place within the Afghan community in Fremont. I had no idea.

On what may have been the last time I visited her–about two months before she died–Cecilie suggested we go to the pool at her apartment building. She didn’t swim, but she liked pools. She sat by the pool while I swam a few laps. It was one of those sunny, dry days you get in Fremont, California, with the water cool but the sun warm.

It’s a good memory.

My Experience with Applying for Medicaid Was Awful

Medicaid was created in 1965 by an act of Congress to create a health care insurance system for those who do not have sufficient means to pay for medical care themselves.

The law says that Medicaid is to furnish medical assistance on behalf of various individuals, including families with dependent children and elderly people, whose income and resources are insufficient to meet the costs of necessary medical services.

Instead what we have today is a mind-numbingly complex state-run bureaucratic system that creates barriers to fulfilling its own mission, as I learned first hand over the past year and a half.

Full disclosure: I was applying to Medicaid on behalf of, not myself, but my mother. In November 2017, my mother became disabled by a stroke. At the time she was living in a retirement community in California and had care available to her. She also is enrolled in Medicare, the federal health insurance program for all people over 65 years old.

But Medicare has limits to what it will pay for. Specifically, if someone needs medical care for a condition that lasts more than 100 days, Medicare won’t pay for it.

The stroke my mother had left her dependent on a wheelchair, unable to get into and out of the wheelchair without assistance due to a paralyzed left arm and leg, and with aphasia (or maybe dys­phasia) that disrupts her verbal speech. She now lives in the nursing home section of the retirement community. The cost of her care ate through her remaining assets in a short amount of time, leaving her bankrupt.

Medi-Cal’s cheery promotional material hides the grim reality.

At that time, the family was advised the apply for Medicaid. (The California version of Medicaid is called Medi-Cal, but I will use the term “Medicaid” throughout this piece unless the context warrants otherwise.)

Here is what we learned:

Applying for Medicaid is not easy. The State of California gives the impression that applying for Medicaid is not complicated. Perhaps it’s a bit like enrolling in school: there are some forms to fill out but it’s mostly a matter of getting the right information together. “There is no wrong door when applying for health coverage in California,” the state tells you.

In reality, applying for Medicaid is time consuming, opaque, and frustrating. So much so that there are people/organizations that serve as an advocate on one’s behalf to ensure that you get the benefits you are entitled to receive. In California, Medi-Cal’s website includes information about Enrollment Centers and Certified Enrollers that, presumably, help individuals through the process. I applied online–an option that the state implies is no better or no worse than the other options. However, the director of accounting at my mother’s nursing home said at the time that “most don’t apply that way.”

That should have been a red flag. One elder law firm says that for someone living in a nursing home who needs to apply for Medicaid, “submitting an application for nursing home benefits without an attorney’s help is not a good idea.”

Health care in retirement is expensive and insurance coverage is not guaranteed. According to at least one source, “Seven out of ten couples reaching 65 can expect at least one partner to use a nursing home. The average cost of a nursing home can range from $8,800 to $25,000 [per month] without Medi-Cal Benefits.” As noted above, Medicare does not cover care that lasts longer than 100 days (long-term care). With my mother, her health care costs have averaged about $12,500 per month. She’s at reasonably decent but not overly luxurious nursing home. In California, the statewide average cost is about $9,000 per month, or about $110,000 per year if you are paying out of pocket, which is twice the cost of paying full price to attend Harvard. And this is the average cost that would pay for average care.

Medicaid does not have an incentive to act quickly. According to the state of California, the time between a completed Medicaid application and the beginning of benefits is “normally” 45 days. However, I applied on Mom’s behalf in March 2020. It was not until August of 2021 that she was approved. Way beyond 45 days. Thankfully my mother is somewhere where her care continued while the application was pending and after nearly a year of waiting, the nursing home hired lawyers to help. I feel sorry for people who are in urgent need to receive Medicaid benefits, as the waiting must create an extreme hardship for them, and they’re unlikely to be able to afford lawyers.

Remember, Medicaid programs exist for the precise purpose of providing a way for people of low or no income to pay for necessary health care. To not deliver that looks to me like a failure to achieve the mission.

Applying for Medicaid is a Byzantine process: As I discuss further below, Medicaid has many barriers built in because the lawmakers who created or amend the laws and the bureaucrats who implement the Medicaid programs are very suspicious. Granted there is a significant amount of waste and fraud in Medicaid, but it seems that the systems put in place to try to address that only end up hurting the people who legitimately need the resources.

In my mother’s case, her paralysis and her inability to verbally communicate meant that she could not apply for Medicaid herself and I, holding power of attorney for her, was the one who did it for her. I live in Maryland and submitted the application online (no wrong door, remember?). I was subsequently told that one gets better results if one engages directly with the county human services agency, as in making an appointment and showing up in person. Of course, that is prohibitively difficult for someone like me who does not live in the county. Not to mention that there is a global infectious disease pandemic going on this whole time.

I received some items in the mail acknowledging the application and saying it would be referred to the county human services agency — a bad sign I now realize. One of the documents said this: “The Medi-Cal office in your county will contact you if they need more information.” Again, according to California, a county social services office may be in contact by mail or by phone to request paper verification if income, citizenship, and other criteria cannot be verified electronically. If that contact happened, it wasn’t with me. Frankly, I’m baffled about who they contacted, if anyone.

Shortly after that, I have received a “notice of action” letter from Medi-Cal, and it was to deny benefits because I failed to submit additional documentation that was never requested by them. It feels like I was set up to fail because they counted on the fact that I was out-of-state and therefore could not deal with the situation in person. The application I submitted was under suspicion from the beginning, and it took lawyers to break the logjam.

The bottom line for me is this: Americans are deeply conflicted over who pays for health care. While some modern democracies have implemented (successfully) a national health care system, America continues to have a slap-dash, jury-rigged system, filled with suspicion and political maneuvering.

This is at least in part because a significant number of Americans feel that one must earn or be deserving of health insurance, rather than it being a right that all citizens and noncitizen residents should have. Hence, people receiving Medicaid are receiving “entitlements” and “handouts* rather than simply receiving health care. This ambivalence, along with much hand-wringing over controlling costs, creates a system filled with empty promises.

As the elder care law firm says, “Congress does not want you to move into a nursing home on Monday, give all your money to your children (or whomever) on Tuesday, and qualify for Medicaid on Wednesday.” But what is so wrong with that? Where is the harm in that? I think this setup has little to do with any material reasons and everything to do with philosophical and political belief.

*Quotes from the report linked to: “However, the real problem in welfare is neither an accounting issue (how poverty is measured) nor bureaucratic inefficiency but the moral hazard of existing welfare programs’ tendency to discourage self-support through work and marriage.” And Medicaid and other assistance to low-income individuals are “a massive system of ever-increasing welfare handouts distributed to an ever-enlarging population of beneficiaries.”

The Road Trip

We were somewhere near the Tennessee-Virginia border in early April. Night was falling, and I was at the wheel of our minivan. We’d been driving for most of the day, having left Arkansas a little before noon.

My son Julian was in the passenger seat, queuing up music on his phone to play this new Canadian artist he’d recently discovered. I was trying not to lose sight of the other car in our caravan, the black Chevrolet with my other son and his girlfriend. The interstate was hilly here and with their taillights not working properly, it was easy to lose track of them.

Julian had driven until we switched drivers somewhere near Knoxville. We’d run through a variety of conversation topics, and the scenery rushing by outside had kept our attention. But with dusk and a change of drivers came a change in mood, as we continued to roll into the night.

The coronavirus pandemic had only recently become a reality, and it had been three weeks since I’d begun working from home every day.

As the music played, I asked him how community college was going, now that they’d moved classes online.

“I’m not going to class anymore,” he said. “And I don’t think I’m going to enroll in the fall.”

“Oh?” I said.

“Being online isn’t working for me,” he said. “And I think this coronavirus thing is only going to get worse.”

We listened to the music for a minute.

“You’ve been staying in your room a lot,” I said. “Some days I hardly see you.”

“I need my space,” he said.

It was hard to be optimistic about the coming months. Anything I could think to say would sound hollow. I nodded in agreement, but realized he couldn’t see that in the fading light.

“What’s your plan, then?” I said, throwing the topic back to him.

“I don’t have one,” he said. “What’s the use anyway? It feels like the whole world is a shit show right now. Everything I expected for this year isn’t going to happen.”

I glanced over at him. His dimly-lit face gazed out at the highway ahead while he got quiet again as the music played. He leaned forward to turn up the volume.

That night, I had no way of seeing just how bad it would get, both in the world and in Julian’s life. The weeks and months to come would be filled with awful news, the shutting down of normal life, the cancelling of so much, and Julian being fired from his job, retreating further from his mother and me, leaving the house to go smoking, getting drunk alone in his room late at night.

But we had a long way to go still until we could get home to relative comfort and some sleep.

The Better Path

There is a fairly famous poem called “Desiderata.” You may have seen it before. The first lines are “Go placidly amid the noise & haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons.”

Desiderata

I found a large framed copy of this poem recently as I was packing up my mother’s apartment. A little over a year ago, my mother had a stroke that requires her to live full time in a nursing home from now on. I remember this framed copy hanging in the house I grew up in, so it meant enough to Mom to have kept it for a long time.

My mother is a person of many contradictions. She can be both generous and cold. She is often critical and just as often accepting. She is relentlessly critical of some people but is capable of acceptance and forgiveness.  She voted for Trump but also has spent an unknown amount of money to support children in developing countries and also children with developmental disabilities in this country. She has done many things in her life but complains that she’s not accomplished anything.

The poem exhorts us to be the best version of ourselves and not worry overmuch about what might have been. “You are a child of the universe,” it says, “no less than the trees & the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.”

And maybe that’s why mom has this framed copy, as something to reflect on when it all seems too difficult, as a way of reminding her to stop once in a while, take a deep breath, and try again. Perhaps we all have things that we put in place to remind of to strive for better and not succumb to the darker impulses. It might be a poem, a book, or a song. It could be rosary beads or a religious artifact. It could be a special picture or movie.

The thing is, even though the poem was parked in my mom’s closet and not hanging on a wall, the fact that she still kept it tells me that she is, at 84 years old, still in the process, as are all of us I suppose.

I’ve said before that knowing one’s parents is complicated, especially for those of us who have our parents in our lives for over five decades, and for those of us who have parents who have been difficult to understand.

So it can’t be said often enough that stopping once in a while, taking a deep breath, and trying again can lead us to the better path.

His Turban Was Magnificent

His turban was magnificent, a rich bluish purple. He came into my wife’s room and introduced himself.

“I am a neurologist,” he said, “and I would be happy to treat your wife, if it weren’t for the pregnancy.”

She had just recovered from a seizure less than an hour before. She had the worst headache anyone could ever imagine. She was nauseated and her vision and hearing were impaired. We didn’t fully know what was wrong yet, but something clearly was.

And our second child was at risk. Her pregnancy was only 33 weeks along, but the seizures were a threat to the growing baby.

I’d rushed to the hospital, seen the seizure, knew it was a complicated situation. Neurology was not something I had anticipated needing. Someone had to make a decision, and had to make it fast.

“It’s just that…since you are pregnant…I think it would be better to transfer to you a facility with more experience,” he said. I wasn’t sure how to feel in the moment. His warmth and composure was reassuring; his recommendation that she be moved made logical sense but was unsettling.

My wife said “My head is killing me; if you are going to make a decision, make it quick.”

It was done then. The neonatal team would perform an emergency C-section. My wife, still sedated, would be flown by med-evac helicopter to Baltimore, a city I knew almost nothing about.

The ICU doctor–also Indian–would give me a warm hug and tell me it would be alright in the end. And I got in the car with a friend and drove into the night.

He was right, the ICU physician. Things are alright, 16 years later.

But I never saw the neurologist with the turban again.