The Enigma of Departure

Most of the time, when you part company with someone, you fully expect to see them again the next time.

It’s just part of how human interaction works. The expectation of continuity allows so many of our institutions, from family to employment to government, to function.

And yet sometimes, there is a high probability that you could be saying your last goodbye. Managing that is not easy.

My mother is 88 years old this year. She had a stroke over four years ago that has left her disabled and dependent. She lives in a retirement home of her own choosing in California. Each time I visit, saying goodbye requires that I both believe I will see her again and know that I may not.

My father turned 90 years old in January. Obviously, he is in his twilight years. I haven’t seen him in person in four years, for a variety of reasons including, of course, the global pandemic. But we talk frequently on the phone. Each time I say goodbye, I hope we will speak again in a few days but also wonder if I have said all that I feel I need to say to him.

My sons are both adults and mostly independent. They come and go as it suits them. All it would take is some careless driving or an undiagnosed health condition to make that casual wave as they go out the door be the last time we see each other.

My wife was in a hospital in Baltimore, struggling to recover from a serious health emergency during the first half of this year. I was visiting her almost every day. But each time I left for the day, I carried with me the possibility that she might not make it until the next day. If I knew for sure that she was dying, I would not go home. But the doctors and nurses assured me that she’d be there when I returned. I had to trust them. And I know myself enough to know that if I try to get by with my reserve of energy at zero, I won’t survive either. That helps nobody.

So the goodbyes are loaded with silent meaning and unspoken hopes and fears. There is no other way it can be. I cast all my bets on there being a tomorrow with my wife, my children, my father, my mother. And then spin the wheel.

Giorgio de Chirico painting artwork

Eating Dinner in La Mesa

It had been a couple years since my mother was confined to a nursing home due to a stroke.

I was visiting her, as I had been off and on. With her in San Diego and me in Maryland, the visits had to be planned and scheduled based on when I could get time off and when I could get decent air fare.

University Blvd. in La Mesa, California, just down the street from my adequate hotel.

After a long day of being with Mom, I was ready for some time to myself. I decided to have dinner at the relatively new farm-to-table restaurant in La Mesa. Mom had taken me there just before her stroke, so I knew she would have approved.

It was an easy walk from my two-star hotel up La Mesa Boulevard to the restaurant. The place was busy, so I opted to eat at the bar. The bar there has both  indoor and  outdoor seating, and the outdoor stools were less crowded. This being the San Diego area, the dry air was brisk but not unpleasantly cold. I didn’t mind.

It was just me for dinner. I had been working all day to keep Mom engaged and to understand her way of communicating post-stroke, which isn’t easy. I was ready for just letting myself enjoy the moment.

I ordered a margarita for starters, something I usually order in California but hadn’t yet this trip. The bartender was competent but, to be frank, inattentive. She seemed preoccupied by something — perhaps just focusing on her job. But her customers seemed to be an afterthought.

The inattentive barkeep eventually took my dinner order — the vegetable risotto that I’d had when I ate there with Mom. It’s very good and one of the least expensive options on the menu.

I also ordered a glass of red wine to go with it. The margarita was doing it’s thing, but I really thought the wine would be a nice addition to the meal.

When the meal arrived, I enjoyed it while listening to the local news program on the bar TV and observing the bartender and the two women chatting across from me. The risotto steamed in the cool evening air. It was just what I needed.

Except that I could have used a bit more. I could have used some companionable conversation from the bartender, or a fellow diner. It is unsettling to be a paying patron at a restaurant, eating alone, without anyone really taking notice.

I mean really noticing. I can understand a fellow patron not being all that interested in engaging. But the bartender’s job is to tend the bar, yes? Tend to the customers who have arrived at the end of God knows what kind of day for a drink and a meal. Some consideration would be appreciated. Maybe I just didn’t look like the type. Who knows?

Everyone is dealing with something. Bartenders are no different, it seems.

I finished my meal more drunk than I had intended. But the twilight walk back to the motel was pleasant and uneventful. Past the local social services office, past the mini-mall with the Mexican joint and the nail salon. Back to the barely adequate hotel that nonetheless feels safe and peaceful at night.

I got a good night’s sleep.

For Better or For Worse

Traditionally, wedding vows are along the lines of “I take you to be…blah…blah…for better or for worse, in sickness and in health, until death do us part.”

Having been through the “or worse” and “in sickness” bits more than once, I can tell you that most people, when they get married, don’t want to deal with that part and don’t expect to deal with that part.

In the hospital.

By that I mean, neither partner envisions themselves to be the “or worse” and deep down does not really want their spouse to go through the pain of having to suffer though the worst part of themselves.

I bring this up now because my wife is in the hospital, and has been for over a month, due to brain hemorrhage related to her chronic health condition. It is an exercise in patience and endurance for both of us. The relief provided by medication and proper health care (her) and an understanding employer (me) is appreciated, but it does little to alter the fundamental terribleness of our situation. 

Of course, people claim to want a spouse who will stick with them through thick and thin. But it’s like insurance. We are in favor of the idea of having it, as long as we never actually need to use it.

In reality, people don’t want that. They don’t want to face the ugliness of it, or the grim reality of it.

Because the spouse who is “in sickness” is not sexy. And the grieving spouse who is trying desperately to hold it together is not sexy. The sights, the smells, the broken body, the seemingly endless bedside vigils.

Absolutely none of it is sexy, believe me (unless you’re into that kind of thing).

Of course, popular culture would have us believe otherwise. We have movies such as Dying Young and Now is Good and While You Were Sleeping, none of which I have seen, but I’m pretty sure they gloss over the reality of what they think they are depicting.

A more realistic take on such things is a book titled Alice & Oliver, by Charles Bock. Read it – I highly recommend it.

So if ever you are tempted to think that a dying lover is somehow more attractive, or the long-suffering spouse or family member is somehow attractive, stop right there. They aren’t, and never can be.

Trust me.

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.”