Friday Flora Familial folio edition

Another from my Mom's garden, which was, and may still be, better than yours.

My Mom was a very good artist; she had some training, a mother who illustrated her own books, and an aunt who was a professional artist working in oils (Fera Webber Shear).  Her chosen medium was acrylic, and her subject botanical illustration.  I encourage you to click on that photo, see it as big as possible.

I spent half of a day this week going through old holiday greeting cards sent from all my parents' friends over the last couple of years.  My task was to put together the mailing list for a belated holiday card, thanking my parents' friends for their kind wishes and telling them of my Mom's passing.  There were certain generational trends in evidence.  Among my parents' friends of longest standing, the themes of late retirement such as travel and grandchildren mixed with brushes against morbidity and mortality.  There were also a number of cards from my Dad's students, and these showed the ripeness of latter working life, children married, thoughts of retirement mixed with the highest tide of professional and social attainment.

I need to get my own personal belated holiday cards out.  Looking at the mailing list, I am seeing some stereotypical themes in my own age cohort.  We are, mostly, in the endurance phase of our careers.  Most, though not all have children, and some of those are starting to head off to college--but a few years and they will be entering the post-children phase of their lives.  I, and a few others, are on different tracks.  I have switched careers rather dramatically, and am starting from the bottom.  We have no human kids.  I'll be looking at a rather different set of milestones, but I have to say that I do like hearing about everybody else's.  It gives me a good feeling to see my friends do well.

So.  I'd better get to work on that card.

Friday Flora Memorious Orchid Edition

Friday’s Flora is a striking hybrid orchid, Sophrolaeliacattleya “Red Berry.”  According to the tag in my Mom’s neat script, it cost $35 at Santa Barbara Orchid Estates on October 2nd, 2010.

If you look back through this blog far enough, a line you’ll see pretty often in the first few years is “My mom’s garden is better than yours.” (Here's some examples)  For a very long time, that was definitely true.  Now, I can’t say that so absolutely.

My mom’s garden reflected the passion of more than a single lifetime.  She was the granddaughter of a horticulturalist who literally wrote the book on citrus in California (and had the linguistic distinction of introducing the word clone into the language).  She was the daughter two botanists, one of whom was head of the California citrus research station, and the other a PhD who also wrote and illustrated children’s science books.  For a long time, when my brothers and I were the sort of kids who could carelessly wreck a garden, I’d say that my Grandmother’s garden was better than yours—a canyon slope in the Berkeley hills, with a majestic live oak and a wondrous array of natives and exotics growing in its shade.  The porch was lined with Epiphyllum and other cacti in pots.

Although she was not a professional botanist, her background was such that my mom could not help but be knowledgeable about plants.  Living in coastal Los Angeles, she had a brilliant climate in which to indulge in plant collecting as a hobby.  So, while I remember a garden that had plenty of “mundane” plants such as roses and a fair amount of lawn, I also remember as a lad spending Sundays going shopping:  to Lohman’s Cactus Patch and Grigsby Cactus Gardens and Abbey Gardens (all closed, alas) or to the sale days at Huntington Gardens to find a new Rebutia or Lobivia or something really odd like Lophophoria or Oberegonia.  Her interest would meander—for a while, it was cacti that would be happy in a pot and produce a nice flower; then, perhaps, Asclepiads, relatives of milkweed that produce flowers that smell like dead meat; then, Aloes.  And so the garden ended up having patches—a mass of one type of succulent here, a whole mess of another type of succulent over there.  Eventually, my grandmother’s Epiphyllums found a home in her garden.

This pattern continued all her life—and the mundane plants, the lawn, the ground-covering ivy all got squeezed out and replaced with a class that would seize her attention for several years.  Sometimes her choices were guided by travel.  A Lapageria lily and a Palo Barroche were sentimental reminders of postdoctoral years in South America.  A sabbatical year in Australia kindled a passion for Banksias and Grevillias.  A trip to South Africa sparked a consuming interest in Cape bulbs and Aloes, which came to occupy a large area.

Although though new interests would be kindled, old flames would never be forgot.  A few plants died out; some were just too fussy to be bothered with, or if they grew boring they would be exiled to the nether reaches of the garden.  There, some might get buried in leaves, while the near-ideal climate of coastal SoCal would let others thrive in neglect.  It’s also worth noting that my mom not only grew so many plants, but painted them.  So, while the Ceropegia tribe may have moved from the center of her attention, the dining room of her house still has a beautiful painting that she made of them.

Even though her location was about as good as possible for growing a wide variety of plants outdoors, her garden was by no means a low-maintenance affair.  Some plants did well let alone, but others required precise watering schedules or other maintenance.  In addition to the bookshelves full of botany books, there were lots of notes on the provenance and maintenance of every plant.  Keeping the garden going was most what she did in retirement, and the garden kept her going.

So, there is that orchid.  My mom had always had orchids, mostly Cymbidium varieties.  However, the last genre that took over her attention was small orchids.  I remember her describing trips to Santa Barbara Orchid Estates starting in the 2000’s, and went along with her for a couple when I was in the area. (True story—when we were checking out, the proprietor saw the name on my dad’s credit card and asked if he was related to David Appleman.  It turns out that my grandfather taught the man botany at UCLA.  When my dad noted that I was David Appleman’s grandson, he was amazed—“no way.  He was only that tall!” He said, pointing at my sternum.)  Trips to “SBOE” grew less frequent as my dad’s descent in to dementia accelerated.  This orchid was bought in 2010, so it would have to have been a trip where one of my brothers or I took her along.  I don’t know the date of her last plant-buying trip; I think there may have been only one after my dad was bedridden, in 2011.

Mom was able to keep up things in the garden for a while, no longer expanding or diversifying, but at least holding decay at bay.  Her own health started failing, the first hints of dementia and frailty showing up about seven or eight years ago.  Bits of the garden started getting somewhat less taken care of, with some weeds starting to crop up.  The bit of the garden that was on the slope of the canyon, down a rickety stairway and out of sight of the house, became neglected.  A balcony perched on the edge of the canyon started tilting down the slope.  It was festooned with bromeliads and vining Ceropegia and Hoya succulents, which mostly did well despite a lack of tending.  The Cape bulbs—Freesia species and so on—did fine, because bulbs are hard to eradicate once they’re settled; but a couple of years of drought did damage some of them.

The one constant chore in all the garden was picking leaves.  There were established trees—Avocado, Gingko, Liquidambar—that were always dropping leaves, and they always needed to be picked out of this densely populated garden.  My mom kept at is as long as she could.  As dementia and frailty worsened, it was all she could do to get a bucket and toddle out, with a home-care nurse alongside, and fill the bucket with leaves pulled one by one out of a thicket of aloes or orchids.  The nurse was always surprised by her endurance and drive to do it, but my brothers and I were not.  But she pretty much stopped doing even that early last year, as health and mind failed.

Starting last year, every time I or one of my brothers went to visit, we’d take away as many plants as we could find room for.  I’ve given homes to such orchids have survived, and a handful of other plants: we can grow some indoors, but Roseburg is not as hospitable to delicate flora as Pacific Palisades.  Still, I cherish what I can.

My mom died earlier this year, in February, not a great time of year for gardens, but it was still possible to find some flowers to put in her room.  My brothers and I reconvened in the spring, and remembered her by taking a trip out to Anza-Borrego State Park, where years ago we had followed her on quests for Elephant Trees and unusual hybrid cholla cacti.  We managed to catch the tail end of a “superbloom,” which was wonderful.  And, of course, we found a good, if diminished, supply of interesting flowers in my mom’s garden.  Which, in my memory, will always be better than yours.

Time and memory

I wrote that last post, and set it aside for a few days before I decided to publish it.  I typically let what I write sit for a few days, so I can do a better job editing.  At any rate, just before that post was scheduled to hit the web, the Real Doctor's sister, C., called to wish us a happy something-teenth anniversary of our wedding.

The coincident timing of a wedding anniversary and a post about time and love was a pure accident.  Neither the Real Doctor nor I can remember the date of our wedding anniversary, nor have we ever.  The date was set in part by the Hebrew calendar, a lunar calendar, so our anniversary changes relative to the common calendar every year.  Also, by the time of our wedding, marriage was a foregone conclusion, so the date of its consecration wasn't critical.  A more notable, memorable date for us is when McCoy Tyner played a gig in Madison, which was our first official date.

Besides, until recently, I haven't had to remember the date of our wedding anniversary.  Every year, until two years ago, my mom would send us a nice, hand-made anniversary card; it would arrive about two days before our anniversary, and so we'd be reminded of the day with sufficient lead time to make sure that we had a decent bottle of wine or some cake on hand.

Alas, those days are in the past.  My mom, who recently celebrated her 80th birthday, is fast disappearing into the fog of Alzheimer's Disease.  It's a good day when she remembers which son I am (the one with the goats and sheep, up in Oregon).  It's a very good day when she remembers that I'm married to the Real Doctor.  Of course, the nature of things is that it will only get worse.  She's still recognizably herself, but I don't know how long that will last.  She is trailing my dad by about three years; however, Alzheimer's seems to progress more rapidly in women than men.  So, alas, it goes.

My parents have been married for something like 55 years. My dad is beyond recognizing his wife, or anybody, or having any meaningful interaction with the world; his body persists in this world, but most of what was uniquely Michael Appleman left this world over a year ago.  My mom, on the other hand, is still well aware of who my dad is--or rather, was.  She knows her husband of decades past, and cannot remember that he is unable to walk, talk, recognize her, or in any way take care of himself.  The fresh discovery of this, every day, is a cause of considerable sadness for her.

Which, I guess, is a reminder.  While we're here, and alive, and aware--don't worry about anniversaries.  Honor every day.

Wednesday Words Mailstrom edition

Dear Concerned Citizen

An introductory paragraph, introducing a poster child for the cause.  The poster child (who may be an adult suffering from a disease, or a member of a socioeconomic group afflicted by a political situation, or a tree—or a child) is in a most lamentable circumstance.  This circumstance may be unpleasant, but wait—it gets worse.

The details of this circumstance are spelled out in vivid detail in a paragraph in bold.  This “punches up” the story, and makes you, the concerned citizen, care even more about the poster child’s story.  Sometimes there is even a picture:

(picture)

It doesn’t have to be this way.  There is a simple solution, one that concerned people are struggling to enact.  The Charitable Organization is hard at work providing this solution.  The Charitable Organization was founded by concerned citizens like you, or by a saintly Nobel Prize Winner, to help Poster Child.  Since a reasonable date, Charitable Organization has helped hundreds of cases just like Poster Child.  Charitable organization has been a prime mover behind…

*This famous project, to which we assume you are sympathetic.

*This project, which we also assume aligns with your interests.

However, it takes money to do Charitable Organization’s work—a seemingly small amount per day.  Yet even this is hard to obtain.  Concerned citizen, have you considered what your small amount per day could do for Poster Child?

Your small amount per day could:

*Do this good thing for Poster Child

*Do another good thing for Poster Child

*Prevent this bad thing from happening to Poster Child

*Do this other good thing for Poster Child

But the effect of your small amount of money has an effect far beyond Poster Child.  Your generous gift would enable Poster Child’s community/environment to blossom and thrive for generations to come.  All this, for less than you spend on coffee/toilet paper/newspapers.  Won’t you consider joining Famous Person, Other Famous Person, and Another Famous Person in supporting Charitable Organization? 

Together, we can prevent BAD THING from happening.  With your generous gift, Poster Child will never have to bad thing again, and GOOD THING will happen for years to come.  We hope you will give generously to Charitable Organization, and accept this bumpersticker/notepad/sheet of address stickers as a gift from Poster Child and Charitable Organization. 

…………………………………

YES!  I want to save Poster Child from Bad Thing!  I stand with Famous Person for Good Thing!  And, if you act now, we will thank you for your generous gift with a tote bag or trivial doodad emblazoned with the logo of CHARITABLE ORGANIZATION. 

I will make a gift of

$ money  

$ incrementally more     

$ twice as much

$ a largeish, but not too intimidating, amount

(Over 16% of your donation goes directly to Charitable Organization’s activities.)

………………………………….

In the old days, my parents would occasionally make donations to Save the Redwoods or the like.  As it is said, no good deed goes unpunished, so one organization or another sold its mailing list to other charities, and then they got sold again, and again.  In the old days, this wasn’t too much of a problem.

As has been noted, my Dad has an advanced case of Alzheimer’s Disease, and my Mom is following him into the foggy, forbidding land of senile dementia.  After my Dad lost his facilities, my Mom reluctantly assumed control of their finances; over the last year, as she’s been losing her short-term memory, this has devolved onto the shoulders of me and my brothers.  So, we’ve made arrangements to have bank statements, bills, and the like delivered to us, to spare her confusion.  When a bill does come to her, I can expect a 45 minute phone conversation about the bill; the dialog will be extremely recursive, confusing, and culminate with twenty minutes of me guiding her through writing a check and putting it in an envelope. 

Bills, thankfully, are rare.  What’s not rare is appeals from charitable organizations.  My Mom gets a couple every day, and she doesn’t know what to do with them.  She suspects that they’re not bills.  However, they do have her name and money amounts on them.  So, she scrawls on the envelope “What is this?” or “Save for L” or “Don’t think we do this” or “????”, and puts it in the flat-rate mailing box addressed to me.  When it’s full (which takes less than two months), she sends the box to me.  Then I get on the phone, asking these worthy organizations to stop sending my parents any mail, ever.  This time, there were over 40 different organizations appealing for money, and it took me over six hours of phone time.  I am feeling somewhat uncharitable at the moment. 

Freedom!!! (continued)

One of the joys of my father's medical condition is dealing with insurance agencies. There has actually been some progress in this painful process. The insurance company, having carefully reviewed all of the relevant documents, agreed that long-term medical care is necessary and precisely what we insured for. The company sent me a note compiling the bills we've paid since the end of the waiting period*, and then noted that it is responsible for none of the expenses.

A couple of days later, a different arm of the same company sent us a bill for exactly $0.00, payable within 28 days.

I am soooo relieved that no faceless government bureaucrats are making decisions for me, and that the private companies are being so efficient.

*The waiting period is a 60- or 90-day window between the start of long-term care and when the insurance company will pay. It is the company's fervent hope, no doubt written into its business plan, that the patient will die in that time.

Monogamy, continued

As is obvious from this blog, my parents’ declining health has been a source of concern for me in the last year. Some of this is plain old-fashioned filial concern, which I suppose is commendable. Some of it, though, is something more like fear. When you’re a doctor observing a patient in decline, you can comfort yourself with “There but for the grace of God go I.” When you are watching your parents, you are left with “There, in thirty years, go I.” I watch nervously as my dad follows the path beaten by his father, and then I get the heebie-jeebies when I forget something.

Now I have more anxiety, because I am seeing echoes of my parents’ relationship—specifically, their dependency upon each other—in my own relationship with the Real Doctor. The Real Doctor is in New York at a meeting of the AGS, so I’m here living the bachelor life. I’m not loving it. I suppose that it’s good that it’s easier to get out of bed on weekend mornings, but that’s about it. Otherwise, I feel a bit like an unbalanced washing machine on spin cycle, and I spend an inordinate amount of time moping*. I know that the Real Doctor goes the same way when I’m out of town. It’s not difficult to see this trend going further, and see my future in the way my mom completely fell apart in my dad’s absence.

I don’t particularly want to end up in the situation that my parents are in (though it could be worse). So, on the mental front, the Real Doctor and I do all the things that correlate with mental longevity—lots of exercise, vegetables, music, puzzles, and so on. On the personal independence front, however, I am much less motivated. I suppose I ought to develop a personality that stands up perfectly on its own—but in a way, this seems antithetical to marriage. The long-term rewards, if any, of aggressively cultivating independence from her company seem pretty paltry when balanced against the pleasure of the Real Doctor’s company. If this is the disease, as they say, I don’t want the cure.

Feel free to remind me of this in 2052.

*The theme music for the day was too literal: “Fixing a hole” from the Beatles’ Sgt. Pepper. The holes in question were not where the rain gets in, but where the insulation was blown into the walls. There are about a hundred of these holes, one or two every sixteen inches in all the outside walls of the house. Maybe the theme music should have been “A day in the life,” since I know how many holes it takes to fill my house and I can extrapolate from there to Albert Hall.

Soul

As a result of spending a couple of weeks in a hospital bed, my father’s physical abilities have diminished markedly. He’s improved after two months at a skilled nursing facility, but getting up from a wheelchair can sometimes be fifteen minutes of hard work for him and three other people. His mental abilities have deteriorated during this time as well, the disease robbing him of words and the last vestiges of sense. He is dependent upon others in a way that he hasn’t been since he was a year old.

There are few things that my dad knows any more, but to a degree he knows of his dependency. The other day, one of the caregivers and I worked for ten minutes to move him from wheelchair to bed. He was tired out from it, but once he got shifted into his final position, he politely thanked us. He’s done that since I was taking care of him last year. My patience as a caregiver would be utterly used up by the time I got him into bed at the end of a furious day of sundowning. My mind would be swarming with the insults and anger and paranoia of the previous six hours—but after I turned out the lights and said goodnight and tried to get an hour to myself, he’d call me back, and then say, sweetly, “Thank you. Thank you.”

Alzheimer’s disease is a haphazard thief. It takes this, it snitches that. If my father’s personality were an encyclopedia, the disease has been ripping out random pages for ten years. But, looking at such a decimated encyclopedia, you could still tell that the section on “Education” was originally much bigger than the section on “Exercise.” My dad no longer speaks with much coherence, but you can still sort of tell what was important to him. My ego would like to believe that my existence as a son was more central to my father’s being than making sure that his laboratory was adequately supplied. However, he hasn’t recognized me in months, and his babble never mentions family. It tends more towards making sure that the jars are labeled and that the columns have been packed without bubbles and that the meeting should adjourn.

So, was the essence of my father “professor of biochemistry”? My father’s child, a scientist raised by a scientist, knows about emergent systems—billions of neurons making factorial numbers of connections, shaped by a unique combination of genes and history produced the personality I called Dad. I know also that malign disease is randomly killing individual cells in his brain, and each death murders a billionth of my Dad’s self. In this view, there is no essence, no center to the soul—just a picture, once sharp and detailed, losing resolution until it becomes a uniform wash.

There’s a belief in many religious traditions that a harsh asceticism can bring the soul closer to the divine. Possessions, adornments, the body, a developed intellect, the ego—the soul is obscured by these thing like a diamond buried in a turd. Orient or Occident, you can find the belief that radical, sometimes violent simplification can bring the soul out of this pollution and let it shine. Over the last years, I have watched Alzheimer’s disease simplify my Dad, purging what a more voluntary ascetic might call pollution, but what I knew as his self. Is this disease distilling my father to the essence?

What is (and was) my father’s essence, his anima, his self, his soul? What is the last thing left, when almost all has been stripped away? I’m left wondering this after a day with my dad. I see all these things: a man robbed of all dignity but still capable of gratitude; a few random crumbling scraps of an encyclopedia; a self fading into a blur of nonbeing, leaving behind just animal functions; the distilled essence of a person. There’s truth and solace and pain in each. If I could, I would choose to believe that when my father’s self or soul has been so violently stripped of its ornaments and adornments, when its intricacies and complexities have been obliterated, that what remains is a simple, heartfelt, open sense of gratitude.

I am my father’s son, so I know this is a half-truth I tell myself to soothe a jangled psyche. It’s a nice half-truth, though, and its company is pleasant in the middle of the night.

Monogamy

There are some stories that may be apocryphal, but they’re too good not to be true. For example, a friend of mine worked in a lab that used marmots as experimental models for sleep research. This makes sense, since marmots are champion hibernators. However, there were some difficulties adapting them for laboratory use; one issue that my friend told me about is that marmots are also champion monogamists. The laboratory kept their marmots in standard single-occupant rack cages, but did not reckon on the uxorious urges of the monogamous marmot. Marmots would regularly break out, wrecking a cage in the process, and break into the cage of their partner, wrecking a second cage. The researchers would come into the lab and find a rack of expensive scrap metal, and wide-open cages inhabited by two smug-looking marmots. Marmots don’t want freedom; they want each other.

I was reminded about these hi-fidelity marmots by what’s been happening with my parents over the last few weeks. My parents have been married for fifty-something years, and for most of this time they’ve been inseparable. I can recall a few trips that my dad took without my mom to scientific conferences, but these were short and infrequent. Pretty much, where one went, the other went. It’s old-fashioned, but a lot of my mom’s identity is that she is my dad’s wife.

However, my dad’s Alzheimer’s disease is prying my dad away from my mom, and this is not good for her. My brothers and I have seen it coming, and have been trying to ease her into it. We regarded it as a great success when she went for a week-long trip to a college club reunion without my father. Lately, however, things haven’t gone so well.

My dad has spent almost the last two months in hospital and skilled nursing facility. My Mom couldn’t drive to go see him, and her short-term memory has deteriorated enough that she couldn’t take the bus by herself. So, she’s stayed at home. I or one of my brothers have been there most of the time, and she’s been taken to see her husband every other day or more. She watches as he is fed, or led through physical therapy, and she just crumbles with sadness at her beloved’s condition. Once she gets home, she is lost; absent her husband, an oppressive mental fog descends. She doesn’t know where he is, why he’s away, how long he’s been gone, when he’s coming back, whether he’s safe or wandering the streets of Santa Monica, whether she’ll ever see him again. She gets more and more upset ‘til she dissolves in tears, despite having one of her sons telling her over and over exactly what is happening. It is awful to see.

My mom’s husband is home now, so things seem to be a little better for her. She is beginning to realize (but definitely not accept) that things will forever be different. There will always be a nurse present (and threatening her sole possession of her husband), and while her husband’s body is home, he will never completely return.

My mom’s identity used to be half made of her husband—a beautiful, lovely ideal for a marriage, and one that I ardently hope I can live up to in my own marriage. As that half of her identity crumbles and decays, we’re left watching the remainder of her psyche teetering. Out of devotion to her husband, she sometimes seems content to let everything go. Her children—and sometimes even she—know that she needs to recast herself, which is terrible hard work. The habits of fifty years are hard to break, and the marmotic urge that will move heaven and earth to be with one’s life partner is hard to resist. Too often what we know we ought to do, and what we actually end up doing, are diverging roads. My brothers and I are a bit on edge about which road my mom will steer us all down, and whether she’s even capable of steering at this point.

I know another story about monogamous animals, considerably less cute than the tale of the marmots, and I know this one is not apocryphal because I saw it with my own eyes. There was a pair of birds that had just plighted their troth and set up their nest near our house in Sacramento. One of them, alas, got hit by a car then run over. Let me succumb to the fallacy of attaching human emotions to the actions of animals, and say that its partner was grieving—it wouldn’t leave the feathery blotch of roadkill, and flitted around it, maybe wondering why it wasn’t responding as it had just a few minutes ago. I was about to shoo it away, maybe move the corpse, when the inevitable happened. A car sped up the street, radio blaring and driver texting. The two birds, so recently together in life, were now together in two-dimensional death.

But, you know, who’s to say that’s an unhappy ending?

Freedom!!!

There are certain life experiences that would seem to inevitably shape some political opinions. A nasty case of food poisoning might lead to favoring some government intrusion into the food-service marketplace, while spending money to meet a frivolous and overly broad regulation might make one resent big government. (That said, I can’t think of how real-life experience in the modern Western world would make you a hard-core libertarian.)

In the last couple of months, my father’s health has deteriorated, consuming a large amount of energy and attention and money from me and my family (and curtailing my ability to blog). As I’ve noted, he has an advanced case of Alzheimer’s disease; over the holiday season, this was complemented by episodes of “severe rectal bleeding” leading to plummeting blood pressure, dehydration, weight loss, two trips to the ER, a hospital stay, and a couple of months in a Skilled Nursing Facility ("SNF," pronounced "sniff" by those in the know). He has just left the SNF, and is now at home, in a room that we have filled with rented medical equipment; he also has the round-the-clock presence of home health nurses.

Things could be a lot worse; he has health insurance from his former employer, long-term-care coverage (also through his employer), as well as access to Medicare and MediCal, and VA coverage for his stint as a private, first class. His insurance situation is the fruit of a long career of hard work at a single institution, and is excellent by American reckoning.

This is not to say that things could not be better. I’ve spent the best part of the day on the phone with his doctor, the doctor’s office staff, the SNF discharge counselor, the SNF insurance and billing coordinator, two medical equipment rental services, the long-term-care insurance company, the long-term-care insurance company’s record collector, the doctor’s group’s record service, the home health nurses, and the home health nurses’ agency. Yesterday was similar, and I and both of my brothers have had plenty of other days along the same lines. With few exceptions, none of these entities seems to be able to communicate with any of the others. I’m left wondering what will happen when my father has another acute episode. I’m also left wondering why in the world this country, supposedly so advanced, doesn’t have a single-payer health insurance system for all.

The Real Doctor, it should be noted, works for a government-run single-payer system that works for a certain segment of the population that is neither especially healthy nor wealthy. It is not without flaws, but it provides affordable and generally good care with an endurable wait. The system is nationwide and uses a paperless record system, making communication within this system relatively speedy and simple. (In contrast, a couple of the players I’ve been dealing with today haven’t been talking to each other because one only uses fax and the other only uses snail mail. As a result, simply beginning the process of processing the long term insurance claim has been held up for weeks.) The Real Doctor is of the opinion that for-profit health care is a road to immorality.

The Real Doctor deals with some bureaucratic headaches, but she knows from experience it could be worse. She no longer has the quivering nightmares that were brought on by the ethical compromises necessary when she worked at a for-profit HMO, which had its own well-padded bureaucracy. She could be earning more if she worked for her own private clinic—but that would mean the stress of being an employer, expensive malpractice insurance, and even more pressure. As one of her colleagues (whom shall remain unnamed, but who she describes as “one of the most thoughtful out there”; if you really must know who, send me an email) wrote on a message board,

Most glaucoma docs want to make a reasonable income – reasonable by most people’s standards. But to do so requires seeing LOTS of patients. I have heard of ophthalmologists that see more than 80 patients a day. Assuming they work for 8 hours seeing patients (8 hours seeing patients usually means at least a 11-hour day), they will spend about 6 minutes with each patient and not eat or urinate. If they actually see patients for 7 hours (which is probably considerably longer than characteristic for most ophthalmologists) they will spend 5 minutes with each patient. I cannot conceive of any way I can learn what my patients need to tell me, examine them and then counsel them appropriately in 5 minutes.

- - - - - - - - - - - - - - - - - - - - - -

So, like I was saying, I can’t imagine thinking, as I boarding an aging, oil-leaking Soviet prop-plane piloted by a kid chewing khat,

“I am so glad that the good people who run this business are able to compete, completely free of burdensome regulations, and that I have so much freedom to choose which carrier will work for my extremely limited budget! I shall very likely cherish this freedom for the rest of my life!”

Likewise, I can’t imagine anyone having any significant experience as a receiver of medical care in the United States going through the process with the thought

“FREEDOM! Yessir, freedom of speech and religion, freedom from want and fear, and best of all the freedom to spend an entire day on the telephone being passed along like a counterfeit buck in a vain attempt to get reimbursement from a for-profit insurance company that is working with a for-profit HMO! I shall very likely cherish this freedom--and this icky hold music and my depleted bank account--for the rest of my life!”

Home is where the...well, where is it exactly?

I’m back in La-La Land, both in the Los Angeles sense of the term, and in the sense of living with the craziness of Alzheimer’s disease.

My parents live in Pacific Palisades, a coastal suburb of LA name-checked by the Beach Boys in “Surfin USA” (though more for the scansion than the waves). They moved here before I was born and they still live in the same house. In 1967, the town was welcoming to the modest means of a new assistant professor. Now, in the language of the moment, the average resident of the Palisades is closer to being “the 1%” than part of “the 99%”. With my every visit, the town I knew is further buried under hyper-architectonic mansions crammed onto the lots formerly occupied by bungalows. Upscale boutiques occupy storefronts that used to sell useful stuff.

The population of the town has changed too, both with generational turnover and with the influx of new money. I’ll admit it makes for good people-watching. Some sightings from the last week:

--three very, very white teenagers filming themselves doing a rap video with some very, very expensive camera equipment

--a guy bringing his ‘cello and music stand down to the beach to play, perhaps for the amusement of the fishes

--a rather ample man and woman doing a wedding photo shoot down at the beach, right next to a woman taking photos of her daughter all bundled up for Christmas cards. After they left, a crew came in and filmed a TV commercial.

--a terribly elegant woman jogging with her two terribly elegant afghan hounds; everything was progressing elegantly until the dogs spotted a squirrel…

--a guy who walks his pug every morning, moving very slowly and never once looking up from his texting

--tides of students to and from the high school across the street (Alma mater!), illustrating the toxic combination of teenage peer pressure, teenage lack of judgment, and too much parental money

--a vegan activist who adopts two turkeys before every Thanksgiving, and gives them the run of her front yard until after Christmas, when they go to an animal rescue farm.

Also, since this is Los Angeles and who you are is what you drive, the car-watching is also great. It’s difficult to drive in West LA without encountering automotive ostentation. Two weeks ago, while I was walking to the grocery store, I was almost hit by a car that (seriously!) cost more than my house. The driver certainly had money, but was apparently void of driving skill. At the store, there was a perfectly-restored 1950's Messerschmitt "bubble car" in the lot:

The Palisades offers an endless variety of such cars, expressing a wide range of character traits: no brains and lots of money, an abundance of ego and money, masculine insecurity and money, a love of antiques and money, eccentricity and money, too much testosterone and money, and so on. [update 1 Dec; a desire for eco-chic and money--while on a walk last night, I saw a Chevy Volt, and this is where I saw my first Tesla.]

This town, Pacific Palisades is—in one sense of the word—home. I grew up with a positively un-American level of stability: we never moved, and my parents have avoided divorce for more than 50 years. This house with its termite-riddled roof and Edenic garden--the walk down the canyon to Will Rogers State Beach--the walk up the canyon into the Santa Monica Mountains: these have all been a rock to me and my family. I was walking on the beach during an hour off of my parent-sitting duties, when I was struck by the sobering thought that in a year’s time, if everything goes as I hope it will, this rock will be gone.

The day-to-day task of providing care for my father (and mother) has really made their health the focus of my thinking about them. From this narrow point of view, I really want them to move out of their house. I feel that my father needs more specialized care than can be provided at home, and that my mother would do well to be closer to me or one of my brothers. So, I’ve been hoping that I can persuade them to move to Roseburg. In focusing so hard on this issue, I’d practically ignored—until that walk on the beach—that this would mean erasing “home.”

Well, as has been noted, you can’t go home again, and has also been noted, attachment to the material world only leads to grief. I’m pretty sure the Santa Monica Mountains will outlast Los Angeles, and despite its charms, Will Rogers State Beach can’t hold a candle to the Oregon shore. I dislike Los Angeles proper. This house is not really good for an older couple—it’s got a severe termite problem, the balcony overlooking the canyon is listing, and it’s nearly impossible to keep warm. The only real tie I have to this place is a work of art that is literally rooted to the spot—my mother’s garden, which (as has also been noted) is better than yours. While it’s not as bad as the historic eviction from Eden, saying goodbye to this garden is the only thing that would sadden me about saying goodbye to this “home.” Without it, I find myself wondering if I’ll ever bother to visit Los Angeles.

Back Home, for now.

I am back at home, after a sojourn in the bizarre land of Alzheimer’s disease. My visit there was intended to be short, but grew longer and longer. It was only curtailed by some rather urgent home business, and even now I am thinking that I’ll need to go back sooner rather than later.

During that month, it struck me how normal things became. Anything, no matter how demented, can become normal, if it just lasts long enough and excludes all else, and that is the way of Alzheimer’s dementia. It becomes normal to wake up every night at midnight, and 2:00, and 4:00, and maybe at 5:30 as well to respond to whatever loudly expressed needs arise. It becomes normal to have to remind a man who used to have a too-hearty appetite what to do with toast and coffee. It becomes normal to have to reassure a man who used to be a professor that the people in the TV set aren’t in the next room and won’t be needing a place to stay for the night. Normal also includes attempting to shave one’s sweater, using a toothbrush on a bar of soap, and waking up in bed wearing one’s shoes.

Living with such a definition of normal is exhausting, and it’s well beyond the abilities of a single person to provide care for such an individual for an extended period of time. (I predicted I wouldn’t last a month. I did, but the Real Doctor says I look like heck.) However, the problem is that the definition of normal changes so incrementally and imperceptibly—especially if one’s senses are dulled by a lack of sleep. Because the metaphor lacks a factual basis, I hesitate to bring up the image of a frog in a steadily warming pot of water, but it fits here.

A major point of my visit to the parental homestead was to convince my mother, who is acting as my father’s sole caregiver, that the “normal” she was experiencing was (like boiling water for a frog) detrimental to her health. I did not succeed in this. I think I may have brought it to her attention that the water was unusually warm, a fact of which she was previously unaware. However, the current trajectory, one that has been followed by all too many families in the same situation, is a self-reinforcing decline. The patient suffers because the caregiver can’t keep up, and so he becomes even more taxing; the caregiver, faced with ever more work, tires all the more, and fails to provide adequate care—and so on to an ugly end. Through it all, my mother insists that everything is normal.

Several million people have Alzheimer’s disease. Many more millions of family members have their lives warped by it. There’s nothing that I can add, either in terms of data or eloquence, that hasn’t been covered before. But, a tragedy is a tragedy no matter how many times it is played.

****

Just now, as I finished that last paragraph, I got a desperate phone call from my Mom—my Dad behaving oddly, and she in a panic because she can’t find his wallet and she’s convinced somebody stole it. I will have to return, sooner than I’d planned. My hope is that she will realize how things are—that the water has gotten too damn hot, and she needs to get out now.

****

I feel obligated to note that the original point of this blog--to talk about stuff like microbiology and music and gardening and such--remains. However, for the last month I have been consumed by being a caregiver essentially 24 hours a day. I think I played the piano for a total of two hours, and the small amount of reading I did was not focused enough to digest a journal article. Things will remain this way for at least a couple more weeks. I hope that we'll be able to return to the usual menu of Monday Musical Offerings and Friday Flora and interesting microbiology in the not-too-distant future.

Life With Father

My parents are old. I feel a little awkward using the word “old,” as it seems to have picked up some baggage during its life, but my folks are north of 75. My mom is OK , but my dad is quite infirm: a spinal fusion screwed up his posture, necessitating the later replacement of two knees and one hip. What joints are not metal are arthritic, and they all hurt. Prostate surgery has left him incontinent, and Alzheimer’s has robbed his mind. He’s like a ship, proud in my memory, but whose hull is rotting, engines are almost dead and whose captain has fled.

Anyway, I’m with my folks for a few weeks. I am mainly here to take care of my dad for a while, so my mom and her brother can attend a college hiking club reunion. My mom has been, by her own insistence, my dad’s sole caregiver as his condition has worsened over the last decade. It’s my reckoning, as well as that of my brothers, her brother, her doctor, and several family friends, that this is killing her. The fatigue and stress of being a caregiver is eroding her mental and physical capabilities. Nonetheless, she remains adamant that this is what she wants. I am giving her a few days respite—the first she’s ever really allowed herself—to attend the reunion, and my hope is that it will clear her head somewhat, and allow her to realize that she needs assistance. In the meantime, I am developing a better appreciation of what life with Alzheimer’s is like. I have been my dad’s caregiver for less than a week, and if I were in my mother’s position, I wouldn’t last a month.

Though I titled this “Life with Father,” this really is life with Alzheimer’s. Aside from the very faintest glimmer of rascality there is none of my dad left that I can detect. His personhood has been replaced by the stereotypical attributes of Alzheimer’s.

There are patterns that occur every day. He wakes up after 9:00. My mom usually wakens him, but I am choosing not to do so—sleep is good, and I have no doubt that he is happier in sleep than awake. The day starts with a trip to the loo: it takes about twenty or twenty-five minutes for him to walk down the hall, then another few minutes of argument to convince him that he should really sit on the toilet. Over more or less continuous objections, his diaper is changed and clothing is put on, hands are washed, and face is shaved. It takes another ten minutes to walk from the bathroom to the breakfast table.

“Walking” (as my father does it) requires a walker and vast reserves of patience. As noted, his ship’s motors are no good and the captain has abdicated, so each step requires a minute (mostly due to severe arthritic pain; my mom believes that use of any sort of painkiller, from aspirin to heroin, is a sign of moral weakness), and after each step he needs to be reminded to take another in a particular direction. The soundtrack for one step of such a walk sounds like this:

“Keep moving,”

“What about the…(waves hands at a countertop in a vague manner)…?

“Over here. How about another step?”

“Allright.” (doesn’t take a step; looks behind himself)

“You have to take a step now.”

“Are those people behind us going to…(waves hands as if counting people in a crowd)…?”

“Take a step. Keep moving. This way, please.”

“we just…three…need to keep three channels open.” (rocks back and forth, winces in evident agony, lurches forward)

“GOOOD!”

The day continues; after breakfast, my dad typically dozes at the table until about noon. Then, it’s time for another trip to the loo, and lunch. Per doctor’s orders, I try to get him out of the house for a short walk after lunch. After that, another trip to the loo, and a nap (or at least a period of reduced consciousness).

A reliable part of the daily schedule is “sundowning.” Around 4:00, the crankiness and anxiety start—constant questions about what’s going on, who is present, why somebody is trying to swindle us, whether there will be enough room for all the people who are here, and so on. This lasts through dinner, until about 8:00. It’s four hours of nonstop angry anxiety, and it’s nearly impossible to get anything done while it’s going on. It’s somewhat like dealing with the world’s crankiest two-year-old, but society doesn’t demand that we honor and respect two-year-olds. Eventually, things calm down, and the process of easing into bed (which takes about 45 minutes) can finish up by 10:00.

This daily schedule is a rough guide; Alzheimer’s disease guarantees that every day is uniquely annoying.

Yesterday, my dad had contrived to remove his diaper during the night, soaking the bed. The sundowning was particularly agitated, but more anxious than angry. Every two minutes would bring a nervous question about whether there was enough room for all the people in the bathroom to get through the door (I’m not sure, but I think he may have thought that the figures on the television were real people in the next room).

The day before was characterized by obstreperousness. My dad needed to go to the bathroom, but wouldn’t get up to do it; after getting up, he wouldn’t walk; after walking, he wouldn’t enter the bathroom; after entering the bathroom, he wouldn’t take of his trousers; he wouldn’t sit on the toilet, wouldn’t wash his hands, and so on. Everything was a struggle. It takes huge reserves of patience to deal with this, and not a little bit of creativity to persuade my dad that he really wants to do what he should do. My mother is one of the most patient souls on the planet, and I am not surprised that I have seen her utterly lose it with my dad under these circumstances.

The day before that was dominated by paranoia. We went out for a walk around 4:00—sundowning time—and by the end of the walk he was convinced he’d been swindled. When we got home, he was sure that everything was fake and that his stuff had been stolen. He was alarmed that he’d have to pay for his dinner, and that he’d have to pay to get home, and that he had no money because it was all stolen.

There’s been some debate recently about the value of screening for prostate cancer. On the one hand, a PSA test does reveal the presence of a lethal cancer that can be treated. On the other hand, the treatment has a high probability of unpleasant side effects—such as my dad’s incontinence—and the cancer usually moves so slowly that it kills the very old. The Real Doctor tells me that medicos call pneumonia the “old man’s friend,” since it brings a relatively rapid death to a frail body tired of life; prostate cancer may be looked at the same way. There is no really good way to die. I have to say, though, that Alzheimer’s disease is teaching me that there are really bad ways to live.