Sunday, December 18, 2011

Thoughts on Love and Suffering


The great philosopher, Moses Mendelssohn, 1729-1786, was one of the most esteemed minds in the Age of Enlightenment in Germany. Referred to as "the Socrates of Berlin," his intellectual brilliance and moral superiority were renowned and he won many prestigious prizes. Unfortunately, he was also notably unattractive as he had a grotesque hunchback.

One day, while visiting a merchant named Gugenheim in Hamburg, he glimpsed the merchant's beautiful, blue eyed blonde daughter, Frumtje, and fell hopelessly in love with her. Her father, eager for a match, had told her of Mendelssohn's reputation, but the first time she saw him she was so repulsed by his misshapen appearance that she burst into tears and hid in her room to await his departure.

Moses gathered his courage and climbed the stairs to speak with her one last time. He had never seen a woman as beautiful as she, but all his attempts to engage her in conversation failed. Finally, he softly asked her, "Is it my hump?" She nodded.

"Let me tell you a story then," he said. "Do you believe marriages are made in heaven?"

"Yes," she answered, still looking at the floor. "Do you?"

"Yes, I do," he replied. “As you know, when a child is born, proclamation is made in heaven of the name of the person he or she is to marry. When I was born, my future wife was also named, but at the same time it was said that she herself would be humpbacked. ‘O God,’ I said, ‘a deformed girl will become embittered and unhappy. A woman should be beautiful and well-made in every way. Please, Lord, give me the hump and let her be fair and perfect.’”

Frumpje was so touched that she looked into his eyes and saw his loving soul shining out at her. She gave him her hand and soon became his devoted wife. They enjoyed a blissful marriage and had six children, all of whom were brilliantly successful in their various fields.

This story always makes me cry a little. I find that there is much to cry about these days, both in my personal life and in the world at large. Every day I sit at Flip's bedside and bear witness to his ongoing disintegration as his illness claims him at a shocking rate. I have begun to wonder if perhaps I was the one who was supposed to be so afflicted, but that Flip begged to take on the disease himself to spare me, and because he knew that I could not endure it with as much grace as he does.

The Buddhist practice of Tonglen, assuming another's pain, is also very much in my mind. Its purpose is to awaken our compassion by connecting with suffering, our own and that of others. The practice dissolves the armor of self-protection we create around ourselves by reversing the usual avoidance of suffering while seeking pleasure. If we can accomplish this, we become liberated from the self-imposed prison of selfishness. We perceive a larger view of reality and learn to use our personal suffering as the path to compassion for all beings.

I am trying to teach myself to take on Flip's suffering, to somehow ease it for him, but this is way beyond any capabilities I presently possess. But did Flip, like Moses Mendelssohn, take on the terrible infirmity intended for me, and is he even now breathing in my pain, doing Tonglen for me? I cannot know the answer but I do know that if he could, he would. And perhaps he did.

Monday, December 05, 2011

OPEN LETTER TO DIRTBAG

WHO KEEPS COMMENTING TO MY BLOG POSTS WITH LINKS TO:

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I'm sure you think you're clever writing comments in your extremely limited English, but real people do not link to pharmaceuticals, at least in my world. I am on to you.

I have painstakingly deleted every one of your comments on posts going back two years, and will continue to delete any you make here. I have also traced your IP address and reported your activities to Blogger. What you are doing amounts to harassment, stalking and even persecution and you need to stop now. If you do not, I will have you arrested. I am serious. STOP. NOW.

Thursday, November 10, 2011

Morality Play


Students at Penn State are rioting because their beloved football coach, Joe Paterno, was fired for not acting nearly a decade ago when he knew that his assistant coach, Jerry Sandusky, was molesting children. Pennsylvania's two U.S. senators quickly withdrew his nomination for the Presidential Medal of Freedom, the nation's highest civilian honor.

His defenders cite the fact that he, himself, was not a child molester, and should therefore be held blameless. I don't agree. I feel strongly that he was wrong not to inform the police of Sandusky's ugly secret because as Edmund Burke said, "All that is needed for evil to triumph is for good men to do nothing." He enabled heinous crimes against helpless children, so he is guilty even though he did not personally commit those crimes. Morality must begin with each of us. We are our brothers' and sisters' keepers, and decency dictates that we look out for those who cannot protect themselves.

Our country is rapidly eroding every sense of responsibility for others and becoming an arid place in which people care only for themselves and their own families. This is not only profoundly unconscionable, it is impractical; we cannot continue for long in a climate of every man for himself (and the devil take the hindmost.)

No one would dispute that it's sad to see a man with great leadership abilities, a living legend esteemed by many, go down in flames. But blaming the University for destroying Paterno's legacy begs the issue. No one can destroy another's legacy. He did that himself by not acting impeccably for all those years in which numerous children were abused. Paterno sowed the seeds of his own destruction. Poison cannot be contained in one aspect of ones life and hidden away from the light forever. It festers and seeps out, gradually infesting everything one does, rotting from within.

This story has epic qualities like a Greek tragedy or an Arthur Miller play, but everyone's life is epic, whether played out on a ball field in front of millions, or lived quietly away from the spotlight. Every human life offers the same choices, no matter how they are presented: Do we do what is right and honorable or do we not? Like Joe Paterno, we are always free to choose, but we should remember that those choices, large and small, will confront us sooner or later. The consequences we experience are always up to us. Life may seem unfair, but it isn't. We get what we deserve. We are not punished for our sins, but by them.

"Do good with what thou hast, or it will do thee no good." William Penn, Founder of Pennsylvania.

Sunday, November 06, 2011

Hanged by his own Petard

Mr. Chu was caught half-in and half-out of someone else's room after his latest theft. The poles on his wheelchair got stuck, and the staff left him there for at least an hour. There was much merriment in the nursing home, even among those whose life's work is helping others. It was like watching a beetle on its back without righting it. I murmured, "Crime does not pay" as I walked by, and he ignored me. A little schadenfreude, anyone?

Friday, November 04, 2011

Fast Times and the Chinese Wheelchair Kleptomaniac


Mr. Chu is the stuff of Wanted posters. A desperado. A one-man crime wave on wheels. He whips around the nursing home all day long, in and out of rooms, stealing things from other residents while paddling his wheelchair with one foot. Since Flip spends all his time walking back and forth in the hall, his room is easy pickings. To date, Mr. Chu has taken his eyeglasses, his prescription Ray Ban sunglasses (multiple times,) his CD boom box, which now has a broken antenna and barely works, at least five times a day, his portable CD player, 15 or 20 CDs, various items of clothing, some of them never worn and never found again, strangely, a book of photos of Los Angeles taken from the air, his toiletry kit (countless times,) his shoes, sneakers and Crocs, and various treats I have brought him which were stationed on his bedside table.

Some of the doorways now have thick metal bars across them, near the top, since Mr. Chu's wheelchair has two long poles attached to it. Unfortunately, this won't work in Flip's room as Flip is over 6'3" and wouldn't be able to get in and out without hitting his head. Yesterday, several staff members ambushed Mr. Chu and removed a veritable Santa's toy sack from behind him, all of which they had to return to a dozen or more people who were missing items. It was a good day for small gains, until the market tanked.

Today I saw him maneuver his chair into a room with barred doorway and then flounder, unable to wheel himself out again. It was oddly satisfying. I have never had the slightest desire to hunt or trap animals, but it suggested a predator caught in a bear trap. I even related to the hunter's elation for the first time, briefly. Later, one of the aides brought back the bottom of Flip's CD boom box on which I had written his name in black marker, clearly a trophy since it serves no purpose without the rest of the unit. I wonder if he was a cat burglar before he was in a wheelchair. Or maybe a politician. Habits never die. Perhaps the wheelchair is just a ruse and he can run like the wind.

It would be romantic to think of Mr. Chu as a tropical tradewind, but he never gives anyone anything. He only takes, and acts defiant when confronted with his purloined booty. I assume he can't help it, but it's getting old. I wish he would find another way to entertain himself. Still, it's endlessly fascinating to observe the many forms of wackiness that afflict people. I wonder what I'll be like in a few years.

Thursday, November 03, 2011

The Dragon and his Wrath


A 23-year old woman in Texas has released a video she made of her father beating her with a belt when she was 16. As if that were not bad enough, her father is a judge who decides child abuse cases. Hillary Adams, who suffers from cerebral palsy, was caught downloading pirated music on her computer but was often beaten by her father, which was why she secretly recorded the incident.

She has received a great deal of support since the video went viral. She claims that her motive in releasing it was not revenge, but a desperate attempt to get her father the help he needs. Her mother, who is also in the video aiding her husband's abuse of their daughter, divorced him after 22 years, blaming his violence on an addiction which she did not identify, calling it "a family secret."

The judge has received death threats but insists he did nothing wrong in disciplining his daughter. I beg to differ. I am adamantly opposed to hitting ones children for any reason and consider it a hideously traumatic form of bullying. Violence at the hands of those who are supposed to love and protect us has the emotional effect of locking a child inside a box with no way out. There is no excuse for treating children like enemies.

When I was 16, I was going steady with a boy my parents disliked. He was a kind and gentle boy as well as good looking and fun, and he treated me with great care. He was also the captain of our high school football team. The reason my parents didn't want me to date him was because he was a Catholic from a working class family. My father was a lawyer and my family was Jewish, although they didn't practice the religion at all. The family credo was that we were "just American" and I never identified as a Jew; yet when I began dating boys, suddenly I was supposed to date only Jewish boys. It seemed like bait-and-switch to me.

My parents met secretly with my boyfriend's parents and my mother informed me that his mother had said, "Susan is a very nice girl, but we want (our son) to marry a Catholic girl." I was ordered to break up with him but we cared deeply for each other, so we went underground. One of his teammates who was Jewish picked me up for dates, my boyfriend picked up his friend's girl, and we switched partners later. Everything was fine until the night my mother, listening in on an extension phone, realized that we were still seeing each other. She told my father, who gave me the worst beating of my life.

I ran out the door and down the street but he jumped into his sports car and sped after me, catching me a block away. He threw me into the car and drove home, where I jumped out and tried to run again. He grabbed me and beat me with his fists until I fell down in the garage while my mother, standing on the steps between the garage and the laundry room, said "Don't kill her. Don't kill her." This was a valid warning as my father had been a Golden Gloves boxer in his youth. Finally, I was allowed to crawl to my room, where nobody checked on me all night to see if I was still living.

In the morning, my mother stopped me at the door and informed me that I couldn't go to school "looking like that," as if it were my fault. She kept me home for nearly two weeks while my bruises healed and then gave me a note stating that I had been sick. She looked deeply into my eyes, conveying wordlessly that if I told anyone, I would be a bad person. I never did.

The incident was never mentioned again, and I'm positive that like Judge Adams, my father believed he had done nothing wrong. I believe as strongly that violence never changes minds or hearts and that only kindness and respect can do that. I still do not consider religion or race important in choosing ones life partner or friends and have always felt that we learn little from those whose backgrounds are identical to our own. The world's people constitute a vast smorgasbord of cultures and appearances, knowledge and world views, all of which are wasted when we cleave only to our own kind.

There are a few animals in nature which eat their young. I consider beating ones child, either literally or emotionally, exactly the same as eating ones young. The laws regarding corporal punishment of children are different in various states, but I really hope they throw the book at Judge Adams. There is no way he should be deciding child abuse cases, and what he did to his own daughter is unforgivable. I applaud her courage and hope that she, too, got the counseling she needed. It's tragic that she didn't have the parents she needed.

Friday, October 28, 2011

Dry Bones


I am a body divided. I have been partitioned and parceled out to several orthopedists, each of whom treats only one specific body part, like a paint-by-numbers kit. Or packages of chicken parts at the butcher's. Don't they know the thigh bone connected to the hip bone, the hip bone connected to the back bone? (Now hear the word of the Lord.)

Last week I saw a neck doctor for a stiff neck which has been hurting for at least two years and makes noises like a car that needs brake pads. He sent me for x-rays: Degenerative disk disease, herniated disks, osteoarthritis, and a couple of disks facing the wrong way. No wonder it hurts. He prescribed physical therapy and Aleve, which I decided not to take after I opened the bottle and then read the warnings. Anti-inflammatory drugs are contraindicated for those with bleeding disorders, and I am such a person.

I went to the drugstore for Tylenol and they didn't have any gel caps, only tablets. I am a poor pill taker. Tablets are harder for me. They did have Walgreen's brand Acetaminophen in a gelcap, and it was even on sale so I took a bottle to the register. The sale price was one for $3.99, two for $5.98. I only wanted one. The clerk rang it up for $8.99. I told him what the sign said. He went to look at the shelf and returned, saying it was $8.99. I peeled the sign off the shelf and took it to a different register. The second clerk said, "You have to buy two."

I said, "You never have to buy two just because it's offered. See, it says One for $3.99 or two for $5.98."

"That's for a different product," he said. "24 count." "This is a 24 count," I said. "$14.99," he replied. I walked out and went to the other Walgreen's a few blocks away - yes, I live in a two-Walgreen's neighborhood - where the clerk rang up one bottle for $3.99 plus tax. No problem. She even wished me a nice evening. It's hard to believe those other two people have jobs when so many with working brains do not.

Today I visited a shoulder doctor because my right shoulder hurts so much that I am trying to become left-handed. This may be even harder than switching ones sexual orientation. The condition has persisted for at least a year. He also ordered x-rays: Osteoporosis, a probable torn rotator cuff, inflammation and tendonitis. He gave me a cortisone injection and a prescription for physical therapy. All roads lead to Rome PT. Surgery may be necessary at some point, but I can't do it now because of my responsibilities to Flip and a cat who gets injections twice a day. It is outpatient surgery, though, so I could get home in time for the evening shot.

This is a song with many choruses as I also have bursitis in one hip, for which I was given 8 or 10 cortisone shots by an orthopedist in 2009. I haven't yet made an appointment with a hip doctor, but it will not be the same one. He is on my permanent shit list, and I don't think he liked me either.

The whole thing is absurd. Last time I looked, I was healthy, young and strong. And now I need a whole body transplant. How did this happen? I am trying to keep it in perspective by reminding myself that I would unhesitatingly choose body over brain issues. We have all heard the old homily about how if all the world's problems were in a huge pile, we would pick out our own. It always made me sneer, but when I think of what Flip is enduring with Alzheimer's Dementia and Parkinson's, physical pain doesn't seem all that bad. Of course, it doesn't seem all that good either. On the upside, it's nearly Halloween and Day of the Dead and I am the best skeleton costume ever. I need to figure out how to light myself up in the dark.

Thursday, October 13, 2011

Big Brother is Watching Me


My mother used to refer to my life as "The Perils of Pauline," which I think was an early movie serial about a heroine who went from one catastrophe to another, a perennial damsel in distress. I felt vaguely offended and never asked her what it was. Nor did she ever tell me. My mother would be happy to know that today, there was a new installment.

I got a traffic citation in the mail - how cowardly - with photographic proof that I ran a red light. There were four pictures: my car at the red light, my car turning right at the red light onto a freeway onramp, me at the wheel and my license tag. Also included was information from the car's registration and my driver's license: My height, weight, age, birthday, hair and eye colors -- total violation. I smell a rat. It isn't that I believe I am perfect. I am capable of running a red light, but I don't believe I could do so without knowing about it. I am a careful and conscious driver. But if I did, it's legal to turn right on red unless indicated otherwise, and I don't believe there is any signage to that effect at this intersection.

Nowhere on the paper does it state the amount of the fine although I'm sure it's a whopper as mere expired parking meter tickets are $75. The fine for a moving violation involving a red light would probably make the paper burst into flames, causing extreme consternation at the post office. What is more, it states that within 30 days I will receive another notice telling me what the "bail" amount is, and if I don't respond by the deadline, they will attach more fees, have me arrested and take my firstborn son. They are placing the onus on me in a city notorious for bad mail delivery. (Example: We never get mail on Saturdays. I've heard rumors that the post office is considering saving money by discontinuing Saturday delivery but it won't make a difference in my neighborhood. We don't get it anyway.) So now I have to try to remember to keep track of the date so if I don't receive the nasty missive, I can report it. Or move to Saudi Arabia, maybe, where women are not allowed to drive at all.

I have the option if I qualify of attending traffic school - in Oakland - to prevent getting points on my license and higher insurance premiums. After I pay up, of course. I wonder if there is an online traffic school I could do instead. I hope they don't sentence me to ten lashes with a whip. And make me wear a burka.

Tuesday, October 11, 2011

Update, because Updates are so much Fun.


For over a week, Flip has refused to enter his room unless he is unconscious. When I check on him at night, the nurses tell me he is either wandering aimlessly and falling a lot, or sitting in a wheelchair by their station. It's clear to me that he knows something is not right about Shekiya, and he expresses his displeasure in the only way he can. It was time to do something.

The director wasn't available so I spoke to Hillary, the director of nursing, about the problem. He took a firm party line, stating that if Flip is dissatisfied, he should be the one to move despite the fact that (a) when I complained initially about Shekiya's placement with Flip, the director said she would move "her" and (b) Flip suffers from dementia while Shekiya, who is 36, apparently does not. It would be disorienting to Flip.

He said, "Shekiya has not complained and moving her would be prejudiced." He leveled a stare at me and said, "I don't know if you're prejudiced or not." I responded that as it happens I am not, but that I do not regard this as a political issue. It's a medical care issue and I would object to any apparent female being Flip's roommate if it made him uncomfortable. (It occurred to me later that he may have been referring to the fact that Shekiya is black, as is he, but at the time I assumed he meant prejudiced against transgendered people.) Who knows? There are so many potential reasons to be prejudiced. Pick a card, any card. I am developing a prejudice toward unreasonable people, though.

I reiterated that Flip was unwilling to enter his room and he demanded to see for himself. Flip refused to be moved out of the hallway where I had fed him lunch in a wheelchair. Hillary insisted that he could not tell the reason for Flip's behavior and that I could not, either, pointing out that Flip wanders a lot anyway. I said it was not an issue until Shekiya arrived. He refused to budge from his position. I said that I still stand by my initial objection and had decided to take a wait-and-see position so as not to make problems for the director or for Shekiya, but that my primary concern is for Flip. Since he seems not to be anyone else's, my only option is to transfer him to another facility. I had hoped to keep him there despite the inconvenience to me, but if he has to move to a different room, I might as well move him altogether because both will be disorienting.

I think they are bending over backward not to be perceived as politically incorrect while railroading Flip, whose mental capacities are seriously compromised. Meanwhile, they shoot him full of potentially dangerous drugs the minute he seems agitated, and because he is uncomfortable with his situation there, he is increasingly agitated. They are choosing a specious political correctness over compassionate patient care.

The doctor we saw yesterday leans toward the belief that Flip suffers from both Alzheimer's and Parkinson's. We are doubly blessed. There is no way to tell how much the Parkinsonian symptoms were exacerbated by various medications he was given, but his physical movements resemble those of Michael J. Fox.

The staff member who went with us yesterday to help was very nice, but when she tried to pull Flip from the car and into a wheel chair, he fell on the pavement and she fell on top of him. She is a huge, heavy woman, but neither was hurt although her skirt was muddied in the rain. Next week, we'll be going to the hospital for an EEG and back to the doctor on a different day. Two more outings. I can hardly wait.

Wednesday, September 28, 2011

Mario/Shekiya


Flip has a new roommate! Her name is Shekiya, formerly Mario. She is a transgendered person with darling sandals. It struck me as inappropriate that a person who considers herself female and is referred to as "she" by the nursing home staff should share a room with a male, so I expressed my view to the social worker who took me to see the director. Also present was the new patient's doctor, who was displeased that I dared to challenge their authority.

I explained that I am not prejudiced against transgendered people and in fact, I also support same-sex marriage. (They are different issues, but rights organizations always lump them together as LGBT {Lesbian,Gay,Bisexual and Transsexual} people.) Nor do I object to the patient him/herself. My objection is based not on biology but on personality, and Shekiya believes that she is female. If a person who was born female but was transitioning to a male identity like Chaz Bono were to become Flip's roommate, I would be fine with it because that person would identify as male, like Flip.

The doctor, who strongly resembled a rhinoceros and will henceforth be referred to as Dr. Rhino, made me repeat everything I said. I explained that since I cannot see the patient's genitalia and do not want to, and since everyone refers to said patient as "she," I felt that she should be rooming with another she. Dr. Rhino repeated exactly what I had just said but added a question mark at the end. For clarification. I was losing patience and prefaced my repetition with "As I said."

The director shared that it is the first time they have faced this issue, and they expected problems from the family of whoever they placed her with. But since Flip was a musician and therefore more likely to be liberal, as well as from San Francisco and not very aware of his surroundings anyway, it was the best place for Shekiya. She was missing the point. It was not about being politically liberal but about the fact that I did not believe Flip should be sharing a room with a female. Stephen, the social worker, assured me that there was in fact a male/female pairing in one of the rooms. I know who they are -- a husband and wife, which is not the same thing at all. Apparently, nursing home policy is based on genitalia and therefore Shekiya must be placed with another man. I asked what she was there for, but they insisted they were not at liberty to tell me.

The director agreed to move Shekiya as soon as they could arrange for another room, which might take "awhile." I went back to Flip's and Shekiya's room to feed Flip his lunch, and it occurred to me that it really doesn't make any difference. In fact, although Shekiya seems to complain a lot about everything, Flip could do worse for a roommate. I am still struggling with the fact that my husband has dementia and lives in a nursing home, so I was probably more likely to be thrown by the new development than I would have been otherwise. There is also the consideration that a person who believes she was born into the wrong gender has almost certainly suffered a great deal of rejection already, and I don't want to add to it.

This is new ground for everyone but if I claim to support transgendered rights, how can I fairly object? This is my chance to actually practice what I preach, even though I don't see this as a transgendered rights issue. So I went back to the director and told her that I was withdrawing my objection, and would accept the new arrangement. My only regret is that I can't share this with Flip, who would get a huge kick out of it.

Besides, if I play my cards right, maybe Shekiya will let me borrow those adorable sandals.

Tuesday, September 27, 2011

Gullible 'Til the Cows Come Home


This afternoon, I went to a gazing. I had no idea what to expect but since I had never been to one before, it seemed like a good idea.

A friend had sent me an email about Braco, a Croatian man who heals with his gaze, although he does not call himself a healer. He travels the world gazing over rooms full of people who are encouraged to open their hearts and gaze back into his eyes. There was a long line of pilgrims in expensive designer hippie clothing, angel tees, glittery shoes and even a white woman in traditional African garb, many of them snacking from greasy paper bags while hoisting soda cans. There was the obligatory woman on crutches and others pushed in wheelchairs. I was jostled rudely by two men who didn't apologize while cutting the line.

Many people were there for all the sessions, running all day and evening, but I went for only one because I can't sit still that long, do not have a groupie mentality and have never wanted to join a cult. But I am curious. The session consisted of a lot of cheerleading, testimonials both in person and on a movie screen, a great deal of hype and instructions to be open to whatever came and to gaze back at Braco during his 7-8 minutes before us. When he finally made his appearance, he stood on a platform but since everyone in the room was standing and I am 5'1", I only briefly glimpsed his eyes. If there was anything genuine going on, I'm sure the energy reached me anyway.

Braco looks like a peaceable man. His hair is long like Jesus, and his face, which never changed expression, seemed kind. I thought of holy icon paintings with eyes that follow you around the room. The website had recommended that we bring photos of those for whom we seek help as the power of Braco’s gaze can reach people through photos, and the same level of healing and transformation occurs as if they were there in person. I held my loved ones' photos over my heart as directed so they could receive the blessings I silently asked for them.

His website says, "Some call Braco a healer. Some call Braco a Conduit of Divine Energy. Some call Braco a Gazer, a Lightworker, a Miracle Master, or even a Vibrational Healing Artist who is somehow able to silently and instantly heal or peacefully massage the consciousness of tens of thousands around the world for years into feeling better or embracing more joy. We just call Braco a beautiful man ... with an extraordinary gift to share." Also available are Braco DVDs, books and jewelry. He has a worldwide following so you would think there is something real happening.

The peppy hostess asked that pregnant women past their first trimester and children under the age of eighteen leave the room as the energy is too powerful for them. They are allowed to stand outside the door, though. The website claims that Braco does not accept any payment for his work, and the charge per session is only $8.00. However, thousands of people attend his sessions every day, many of them for the entire day at $8.00 a pop, so he is not hurting. He also offers a line of Sunce (sun) jewelry that displays a symbolic golden sun with 13 rays. The price of the jewelry ranges from $190 for a pair of earrings to $2395 for a diamond pendant. Testimonials claim these talismans bring good luck to the wearer.

A woman sitting next to me, giggling incessantly, said that she had been to many Braco sessions and could hear his voice inside her head as if it were originating there. It was impossible to tell if she was euphoric or merely neurotic. Another woman claimed that she had heard his voice saying "Hello, Yes!" to her and knew that he was taking care of her creative difficulties and dispelling negativity. We were told to be YES by the handlers, who suggested that we would feel heat, tingling or other healing sensations or find ourselves laughing or crying as the energy reached us. New Age music played while members of his team roamed the audience with microphones to take testimonials. We were assured that we would experience the deepest love we had ever known. We were also told that healing changes might not occur instantly, but would definitely occur. It seemed that he was taking credit for anything good that might befall us for the rest of our lives while officially claiming not to be a healer.

I would like to believe. I sent him my kindest thoughts while he was in the room and thanked him for any help he could give. I want to think I am not so cynical that such things are lost on me, so unspiritual that I cannot open my heart enough, and yet I would also like not to be thrilled by the Emperor's beautiful robes if he is really naked. We will see. The physical pains from which I seek relief have taken a long time to develop - it's unlikely that they can be vanquished in seven minutes. I'll be paying attention.

Afterward, while passing a restaurant on the bus, I heard a woman say, "Five dollars and you can eat roast beef until the cows come home." Lady, if those cows are already roast beef, they are not coming home. I had opted for public transportation to avoid parking hassles, but that may have been the highlight of my day.

Monday, September 26, 2011

Asked and Answered


I have become friendly with a woman who visits her mother, Mary, a lovely 93-year old woman from Senegal, at the nursing home. Ethel, the daughter, was named for her grandmother, but the name is colossally misleading. Ethel resembles Lena Horne, one of the most beautiful women of all time, and should not have a name we associate with Lucy Ricardo's sidekick, Ethel Mertz. Or gasoline. "Fill 'er up with Ethyl." I always stop in Mary's room to talk to both women when I am there to see Flip.

Today, Ethel stopped me in my tracks. "Do you date?" she asked. Brain freeze. "What?" She repeated herself. "Do you date?" "You mean, like men?" I said. "Yes," she said, smiling. I scrambled to compose my face because this was not a question I have even asked myself in over twenty years. "Uh, no." I stammered. "Because you're married?" she said. I started to laugh. It seemed obvious, but Ethel was serious. "You're so pretty," she continued, "and I have a friend."

I said, "Have you been listening to Pat Robertson?" She took a step back. I wasn't sure how to interpret that, but she didn't know who he was. I explained that he is a televangelist who recently remarked that it was okay to divorce a spouse with Alzheimer's and go on with ones life, and that this was getting a lot of airplay. I said that while I wouldn't judge a person who did that, it wouldn't work for me. She agreed that everyone is different. I told her that I always welcome new friends and have both male and female friends, but I still feel married to Flip.

Driving home, I thought about what my marriage means to me now. "In sickness and in health" is obvious, of course, along with "for better or for worse." Flip is the love of my life, and we've had twenty beautiful years together. It has never occurred to me that I "deserve" the trappings of marriage despite his present inability to participate in it. Sex without love has never appealed to me, even when I was young and had more demanding hormones, and I can enjoy good conversations with men or women without hoping that they will lead to someone's bedroom. I wonder if this means that I am over some mythical hill and have become a lesser being than I was. Perhaps it does, but frankly, my dear, I don't give a damn.

I am still grieving the disaster which has taken Flip from me, and from himself. It's strange to mourn someone who is still alive. Perhaps on some illogical level, I am waiting for him to "get better" and return to his former self, although I know that won't happen. Alzheimer's is for keeps. It takes no prisoners. Elvis has left the building. And yet, he still knows who I am, and he trusts me. I am not offended by Ethel's question because she meant well. She hoped to put two lonely people together so they wouldn't be lonely any longer. She doubtless even believes we would get along. But the equation is far more complicated than 1+1=2.

I have three grown children who mean the world to me, so I am not alone. I really don't want or need another partner. I think it may be time for me to fall in love with myself a little, to explore some of my own interests and learn skills I have put on a back burner for so long. I'd like to become more fluent in French, Spanish and Italian, and to learn Japanese and Mandarin. I'd enjoy classes in painting, French pastry making, sewing, photography, advanced knitting, as well as traveling. This independence is a gift from Flip, who believed that I could accomplish anything. He praised and celebrated my mind, my talents, even my cooking, and always made me feel special. The best way I can honor him is to become as fine a person as he is and my own capabilities will allow, and I'm not sure I could do that if I were part of another couple.

In the past I have flirted with the idea of becoming a Buddhist nun, but the required discipline would frustrate and bore me. Freedom appeals to me, the kind of spontaneous freedom to go where I please without accounting to anyone, to stay up all night reading (or writing) without disturbing someone, to skip dinner if I'm not hungry or to eat a box of cookies if I like. I will always miss Flip by my side because he was the best friend I've ever had as well as my ideal romantic partner. But if we are not destined to walk into the sunset together, I'd rather go by myself. And I'm going to retire his number because no one could ever take his place.

Saturday, September 24, 2011

The Goddess of Swimming


I think I'm in love with Diana Nyad. Even her name is beautiful, and she is an amazing woman. The 62 year old long distance swimmer is currently making her third attempt to swim the Florida Straits from Cuba to Florida, a journey of 112 miles, after aborting her last attempt in August because of an 11-hour asthma attack and an intensely painful shoulder injury. Her first attempt was in 1978 at age 28, but she claims to be in the best shape of her life now.

The swim was made successfully by Australian Susan Maroney at age 22 in 1997. However, she did it in a protective shark cage while Diana Nyad is trying to become the first person to make the swim without one. Instead, she is relying on special equipment that surrounds her with an electric current imperceptible to humans but strong enough to keep most sharks at bay. Kayakers are also paddling alongside to gently prod away any that make it through. There are also hundreds of jellyfish species in those waters, some of which have already stung Ms. Nyad early in her swim.

She blamed the asthma attack on an allergic reaction to pain medication she took for the shoulder injury, but she is confident she can achieve the record which has been her lifelong goal. She said the asthma had her flailing through the water "like a dying, floundering fish."

"The asthma took me down, but ironically enough, that 29-hour swim was like a very, very expensive training swim," she said.

This time, her 30-person team has injections for asthma just in case. Nyad was subdued but determined as she greased up ahead of the swim.

"Not that I was ever cocky, but having been through this now and been so deeply and emotionally disappointed, I don't want to take anything for granted," she said.

In an interview several weeks after the August attempt, she told CNN's Dr. Sanjay Gupta she was still strong, and was not ruling out another attempt.

"I am capable of swimming from Cuba to Florida, and I will give it up, if I just can't make it," she said, "but I didn't prove that to myself in this particular swim."

To attempt this swim again, Nyad said she would need good weather, calm waves and warm water, though she was willing to swim in less optimal conditions than she once thought she needed.

"I used to have almost a paranoia of waiting for the (ocean) surface to be (completely) flat," she told Gupta. "(During the August attempt) we were out in some slappy waves, and it wasn't fun, and you can't glide across the surface, but I can make it."

She will not be allowed to touch the boat for the length of the crossing if the record is to count, nor can her team physically aid her other than to pass her food, medicine, a new swimsuit and so on. She will try to sustain her energy by eating peanut butter sandwiches and pasta, and she sings Beatles, Bob Dylan and Janis Joplin songs in her head to keep her mind occupied, especially during nighttime.

"I never ever — it's the cardinal rule — I never look up because it's very depressing to see the horizon with no lights, no nothing. And I never ask my trainer here in the boat what time it is or, 'Are we almost there yet?'" Nyad said. "They're going to tell me when we're about 10 hours away."

If she succeeds, the Los Angeles woman would set a new record for open-water swimming without a shark cage. She already holds the previous record for a 102.5-mile (165-kilometer) swim from the Bahamas to Florida in 1979.

Diana Nyad touches my heart because she is not just a superior athlete trying to set a record. She hopes to be an inspiration to others that they can still achieve their dreams at any age. She also wants to help end the bitterness between the United States and Cuba which has persisted for over 50 years. I hope she makes it. I am cheering her on in my heart and hoping that her particular Red Sea parts for her, all the way to her goal. But I also believe that when anyone attempts to do a difficult thing, no matter what the outcome, that person has already succeeded. Diana Nyad proves that the tyranny of age is only in our own minds and that if we overcome massive negative cultural conditioning, we really can accomplish our dreams. She gives me hope, and that is no small thing.

Thursday, September 22, 2011

It Makes Me Fighting Mad


A video of two eight-year old British boys cage fighting has gone viral. The children were not wearing protective padding or head gear as they grappled in front of a large adult audience. Cage fighting, or mixed martial arts (MMA,) is the fastest growing adult sport in the world.

Former presidential candidate John McCain famously called such events "human cockfighting." I agree.

Wikipedia describes MMA as "a full contact combat sport that allows the use of both striking and grappling techniques, both standing and on the ground, including boxing, wrestling, Brazilian jiu-jitsu, Muay Thai, Kickboxing, Karate, Judo and other styles."

Children as young as four are being encouraged to participate by parents whose credentials for parenthood should be revoked, in my opinion.

The British culture minister, Jeremy Hunt, condemned the match as "barbaric," but Nick Hartley, the father of one of the boys, insisted that his son was not in any danger. "He loves the sport. It's not one bit dangerous, it's a controlled sport. He likes to do it, he's never forced to do it, he wants to do it, so leave him to do it," Hartley told the BBC. "Until he gets a bit older and he starts doing physical contact, kicking and punching, then maybe, but at his age it's wrestling, like grappling." Lancashire police said it had "looked into this matter fully and there are no issues for us to pursue"

Chris Cloke, head of child protection awareness at children's charity NSPCC, said: "We would strongly discourage parents from letting their children take part in this kind of fighting. It's quite disturbing that some of those involved in the bouts were as young as eight, an age when they are still developing, physically and mentally. The organisers of these activities should think very carefully before allowing children to be involved when they are egged on to inflict violence."

The sport's violence has provoked controversy everywhere. It's illegal in New York and Connecticut but in Tennessee, where it is popular, boys fight boys, girls fight girls, and sometimes boys fight girls while their moms cheer them on. Christie Hawkersmith, the wife of a fighting gym's owner in Winchester, Tennessee, insists there are strict safety precautions for kids in mixed martial arts bouts.

"Under 18, they cannot punch to the face, it's not an all-out brawl. They learn skills and they try to master those skills," she said. Her husband added that the kids learn discipline and self-esteem, and that people who think mixed martial arts too violent for youngsters are ill informed."It's a proven fact that football has more injuries, and more severe injuries, than [mixed martial arts] by far," said owner Bunny Hawkersmith.

Four-year-old twins Danika and Nyomi Arellano are already seasoned competitors. When they are not in the cage at Bunny's gym, they like to take part in beauty pageants. It's a split decision on which type of event they prefer.

"Pageant," said Danika.

"MMA," said Nyomi.

And what is their mother's view of the controversial sport? Rita Arellano admits she has mixed emotions when she sees her daughters fight. "Deep inside yeah, it's like, Uhhh! It's hard to see your kid. You want them to win, but you don't want to see them get hurt."

One of the top three movies this past weekend was the mixed martial arts film Warrior, starring Tom Hardy and Nick Nolte. Is the moribund economy causing a general increase in violence, or have we devolved into a society that really doesn't care about others? We still have states endorsing and even celebrating the death penalty, and in a presidential debate last week, the audience cheered loudly for those without medical insurance to be allowed to die.

What manner of self esteem is instilled by training young children to maim other young children? Is this really the kind of world we want our children to inhabit? Really?

Saturday, September 10, 2011

We'll Always Have Chocolate


I realized today, really realized in my gut, that I can't save Flip. My husband is gone, and there was no precise moment in time when I could say goodbye and gain closure. His expression is mostly blank, he seems unaware when his diaper needs changing, and he walks in a half crouch like a giant praying mantis. I can still visit him every day and take him small comforts and treats, but I cannot hold back the force of this disease which is destroying him.

The occupational therapist told me that his is "a very complicated case." His symptoms don't fit the parameters of any specific disease so it is unclear at this point whether he has Alzheimer's, Parkinson's, Lewy Body Dementia or some bizarre combination of these with perhaps other components as well. My own body aches with mostly unshed tears. I think I'm afraid that if I start crying, I won't be able to stop.

It's horrifying to think that he may have been misdiagnosed all these years, and that he could have been helped before it reached this point. His neurologist of the last four years specializes in Alzheimer's, so perhaps she sees Alzheimer's in all her patients, as when you're pregnant and suddenly the world is full of pregnant women. You drive a red car, and every car on the road is red. The newest research confirms a genetic link to Parkinson's, and since Flip's father and sister had it, it seems likely, especially considering how early it manifested in him. To be fair, I took him to several neurologists before we settled on her, and all concurred in the diagnosis. Of course, he hadn't yet begun to exhibit the symptoms which suggest Parkinson's. Even the best of doctors can't diagnose what they don't see. I hold them all blameless.

He has an appointment with another neurologist, his 6th or 7th, in October. I don't think anything can change the course of his illness now, but all knowledge is helpful to some degree. Flip said "Susy" very clearly today, but the rest of his sentence was lost in translation. He deserves a Medal of Honor for not exploding with frustration at his inability to express himself. I couldn't do it.

It is time to take myself in hand. Most people eat too much when they are stressed but I am the opposite, a compulsive starver. I only have an appetite when all the signs are right. When I was a child, I read a book called "The Story of 100 Operas" and thought the Aida story the most romantic of all. At the end, when her lover is in a tomb with the walls closing in on him, crushing him to death, Aida jumps in to die with him. Many of my previous relationships reflected that view, sadly. Flip would not want this for me, and as it turns out, neither do I. So I am going to do the most life-affirming thing I can think of, short of buying shoes. I am going to hunt down a piece of chocolate cake with mocha buttercream icing and eat every crumb. If it's the last thing I do.

Saturday, September 03, 2011

Let the Good Times Roll

Disclaimer: Vulgar language abounds in this post. Only adults with strong stomachs need apply.

The nasty nursing home crone was stationed in the hall today, lurking in wait. As I took Flip for a walk to keep his blood moving, she yelled, "You have a lovely husband." Surprised, I said, "Thank you. He is lovely." I thought that maybe yesterday was an off-day, that she is really a nice old woman.

"You're a witch," she added.

"I'm glad we cleared that up," I said and tried to pull Flip away by his hand, but he was stalled in place.

"Too bad you're an ugly fucking bitch," she screeched. "You're a fucking piece of shit slut and everybody hates you. I hate you." (I could use coy asterisks, but what's the point?) Usually, people have to know me before they hate me. She was jumping the gun.

I pulled harder on Flip's hand and he decided he didn't want to be moved. Who could blame him? All the action in the place was right there. Everyone else was dozing in wheelchairs.

"Fucking slut asshole!" she yelled. "Eat shit and fuck you." She reprised all her insults, including some I've forgotten, cackling like the green broomstick witch in The Wizard of Oz. She could have been her understudy - she really had the laugh down. She kept on shrieking with hateful laughter as I dragged Flip down the hall, not nearly fast enough.

Latifa, one of the nurses' aids, sidled up to me, "Just give her the finger," she said. "She told me I was FAT. I told her 'You're much fatter than I am.'" She flounced off muttering "FAT."

"Fat and ugly. Fucking ugly!" screamed the old woman behind me. "Your husband hates you, too!"

I learned that her name is Roberta. It figures. Roberta is my middle name, which I've never liked. I dislike feminizations of male names in general, but I dislike it mostly because it sounds ugly unless you're Spanish, which I'm not. When my older daughter was a child, I once threatened her with writing a story about her and calling her character "Roberta" if she didn't stop whatever she was doing. It was effective. It's an icky name.

Latifa told the director of nursing that Roberta needed to be out of the way somewhere, preferably in the locked psych ward, and she was removed from her post in the hallway. Dementia has not been kind to her. Of course, dementia is not kind, ever, to anyone, but it's possible she was a lovely lady before. It's hard to imagine because she is so utterly hateful now. There is probably a cautionary tale here, but since we have no control over what happens to our minds as we age, I know of no way to ensure that we will not turn into Robertas. And that is a very chilling thought.

I snapped a picture of her today but my new iMac is running a different version of iPhoto than I've been using, and I can't figure out how to get it onto my desktop. But know that even in my moment of despair, my last thoughts were of my awesome blog friends.

Thursday, September 01, 2011

Hell on Wheels


I would like to reward those of you who have stuck with me through these depressing blog posts with one that is all fluffy and hilarious. But that is not going to be this one. Flip was discharged from the third hospital this afternoon and transported to the third nursing home, one I had visited a couple weeks ago and disliked because it's bleak and smelly. It was the only one in the Bay area which would accept him, but I am holding my breath as he lasted only three nights in the first and two in the second. I am braced for The Phone Call which tells me that he has been taken back to the hospital again. With an armed guard.

If that happens, they will quickly discharge him and absent another nursing home, I will have to bring him back to our home which at this point is not safe for either of us. There is also the fact that if he comes home, MediCal will revoke his approval and refuse to pay for anything, nor will he be allowed to reapply. Much as it pains me to say this, our life will not be tenable at all with me caregiving 24-7 in our small apartment as I did for so long. The disease is advancing at a shocking rate.

The first thing I was asked upon arrival was whether I had selected a mortuary. So much for sensitivity. Since the answer was no, Marlene, the admissions woman, asked if she could write in the name of a local one because the form required something on that line. I shrugged, and she assured me that she could change it when I found one I liked. Question: Does anyone like mortuaries? Auditioning funeral directors is not high on my to-do list. I said that Flip and I had discussed burial and cremation over the years and we both leaned toward cremation. (But that doesn't mean I ever expected to do either of those things. It was just a philosophical discussion, that's all.)

There was an Inspirational Hour going on in the main gathering room. A man was standing on a table loudly hawking Jesus while other residents mostly snoozed in their wheelchairs. "Oh, Jesus," I muttered. Sometimes I wonder how enduring tasteless and predatory behavior in his name all these centuries compares with the agonies of crucifixion. The answer could surprise us.

As I sat in Flip's new room with him, a harridan in a wheelchair rolled up and began to scream at me. The old biddy knew every word for female genitalia and wasn't afraid to use them, so I shut the door. She slammed it open and I shut it again. Open. Shut. Open. Shut. All accompanied by a stream of invective that would have made a sailor's parrot blush. Finally, I leaned myself against the door to hold it shut and she rammed it with her wheelchair. I was definitely in the wrong weight class. Nobody came. Flip looked unbelievably weary, and I knew he was sure he was either in a nuthouse or in Hell. I yelled down the hall, "Can I get some help here?" and about ten minutes later, Marlene returned with more forms for me to sign. All business, that one. The old hag began to curse her out, too, demanding that Marlene take off her dress because it was really hers, stolen this morning. I closed the door again and told Marlene that I was concerned the woman would give Flip a rough time when he is already going through so many changes, including another new place. "Oh, she hates females," she said. So comforting.

And that was our welcoming committee. They really went all out and the entertainment was phenomenal, but there wasn't any cake. There should have been cake.

Tuesday, August 30, 2011

Just When Things Were Going So Well

I wuz robbed. Seriously. I realized it after I hauled my laundry to the launderette and opened my car trunk for the supplies I keep there, all newly replenished and unused, I might add. They were gone. Last week, when I picked up Flip's suitcase full of clothing from the first nursing home, I left it in the car so I wouldn't have to carry it up and down stairs next time it was needed. The suitcase is gone, too, plus an expensive bicycle pump, never used, and many tools of various kinds. I wonder what else was stored there that I can't recall. Yet how can I complain when Flip is losing everything?

For several days I've been putting things in the back seat because the trunk was full. There is no sign the lock was jimmied - the culprit must have used a skeleton key or something. He's done it before. I suspect it happened the other night when I was parked about 1/2 mile from the ER in a neighborhood so dodgy that one of the security guards escorted me to my car about 1:15 am. I should mention that my car does not look as if it would have anything valuable in it.

Flip and I picked out two matching suitcases on wheels a few years ago for a trip to New York. Mine was red and his, green. Now his is gone, and the symbolism is blatant. It makes me very sad.

What kind of person would steal laundry supplies? I cannot fathom the level of depredation that requires.

Monday, August 29, 2011

Another Hospital, Another Show


Yesterday I visited Flip, as always, and when he fell asleep after I fed him lunch, I left. The traffic was very heavy both ways because it was Sunday. I bought more cat supplies and a few groceries as I intended to force myself to eat dinner although I have no appetite anymore, but the nursing home called to say that Flip had gotten outside. He was combative and they needed me to calm him down. I said I would come but it wouldn't be for a while because the cat needed his insulin injection at a precise time. I checked a few minutes later and they had called the police and an ambulance to take him to the hospital again.

After I ministered to Pekoe, I headed back to the East Bay in very heavy traffic. I think there was a Giants game and AT&T Park is near the entrance to the Bay Bridge. When I got to the hospital in Berkeley and parked in the garage (most of the doctors' spaces were empty,) I went to the ER, which had no record of him. Finally, they learned that Flip had been taken to a different hospital campus in Oakland and gave me directions. I found street parking but wandered all over the vast complex trying to find the ER. You would think it would be easy to find -- people are generally in a hurry when they go there. I saw a man steam cleaning a huge truck and yelled to him, but he couldn't hear me, so I kept walking.

Flip was on a gurney in a hallway talking to himself and didn't seem surprised to see me. They needed a urine sample so someone handed me a urinal, but I was unable to get him to produce anything. I told him that if he didn't, they would have to catheterize him, a procedure he doesn't take kindly to, understandably. After several hours, I told the attending doctor his saga including the fact that every time he is given Ativan, he becomes aggressive. The doctor wrote on his chart that he is "allergic" to Ativan. Finally. A voice of reason. Flip was given a shot of Haldol and Resperidol. One of the security guards offered me a sandwich as I mentioned that I had eaten only a croissant (almond) with coffee and a banana all day. The sandwich was turkey - starvation trumps vegetarianism - but Flip thought the sandwich was for him so we shared it. Then he conked out.

The doctor spent a couple hours on the phone, trying to find a hospital that would take him as they don't treat Alzheimer's patients. No one would. I thought of Mary in her hour of need, with no room at the inn. They decided to admit him anyway and have their social worker locate another facility in the morning, if such exists. The admitting doctor needed to speak with me, so I waited another hour. I asked the security guard if there was any coffee, and he found me a cup. It was still scalding after I added two creamers, so he got me four more, which was perfect. Another security guard escorted me to my car about a half-mile away, we high fived each other, and the coffee got me home safely at 1:45 am. There wasn't much traffic.

Today I will go to the hospital and also pick up Flip's belongings from the nursing home, the ones they haven't lost. We are no closer to finding him a place in San Francisco but I can't care for him at home any longer, which breaks my heart. All I can do is be a presence, speak sweetly to him and rub his back. It's like watching someone drown.

I just received calls from the attending doctor and social worker at the new hospital, who are going to put out a bulletin asking for placement in San Francisco. "This time I know our side will win." (Victor Laszlo, Casablanca.)





Saturday, August 27, 2011

Is There a Writer in the House?


When I turned off my computer last night, I noticed kitty paw prints on the monitor. I had no idea Pekoe was a writer! I looked to see what he was working on because I'm nosy like that. I justified my snooping as getting to know my new roommate so he'll be happier until my daughter, the love of his life, returns from Paris.

We all remember Snoopy's great epic, derivative of Tolstoy, which began "It was a dark and stormy night." I admit I was a bit surprised at the excellence of Pekoe's spelling, even though he was raised by my eloquent and highly educated daughter after she saved him from a beer cooler in which he had been abandoned as a newborn kitten. It seems that despite my love and respect for non-human animals, I still retain a trace of human arrogance, which embarrasses me. I have always believed that we two-leggeds are not the pinnacle of Creation -- we are simply more likely to sing our own praises than other species.

Pekoe seems to be having an existential crisis, trying to make sense of a world in which everything familiar is gone, like coming home to find all the furniture moved. He and Flip are having remarkably similar experiences. Pekoe has moved from the home he knew to one he had never seen before, and the person who was his entire world has disappeared. We both hope ardently that it won't be for long, although I, who have been to Paris while Pekoe has not, am also thrilled and excited for her to be realizing a dream which was also something I would have loved to do when I was young. Strangely, it turns out to be just as exhilarating to experience my dreams vicariously through my children. This grown child, my youngest, has also visited Tahiti (twice,) another dream of mine from the time I saw my first Gauguin painting as a child. I even bought an English-Tahitian dictionary in my teens, when Barnes & Noble was a single brick and mortar store in Manhattan, so I would be able to converse with the natives on arrival. I'm still waiting, but somehow the fact that my daughter has been there makes it more a part of my world than it was. And she did not find it lacking, although she said that nearby Moorea is far lovelier.

Pekoe's writing is amazingly precise, yet unpretentious. I think posting his work here will not create ugly problems regarding copyright laws as I am not plagiarizing but giving full credit where it is due. It's likely that this is his first draft, so hopefully you will take that into consideration when you read it, and be kind. Here, then, in his own words, is my roommate, Pekoe:

Catie's mom is trying hard, I'll give her that. I'm sorry I scratched her (twice.) She speaks sweetly to me, at times in a voice so high it must hurt her throat, and seems to have an endless supply of foods to tempt me when I go on a hunger strike. We both know that I am only allowed to eat one food, the same flavor even, because I am diabetic, but the poor woman is desperate. The first morning I was here, I refused to eat and she ran to the store in pajamas to buy tuna for human consumption and a ripe avocado because my lovely Catie had mentioned that she should not leave avos ripening on the table as I've been known to ravage them. (I really like mangoes, too, and their skins are easier to penetrate with tooth and claw. I'm strategizing how to make her understand that I need a mango. Humans are dense, even when they mean well.) She also laid in a supply of Gerber's baby food (chicken) which savvy cat people know we can't resist. She was unbelievably grateful to me for eating, couldn't thank me enough and even sat on the floor stroking my back while I ate. Despite my intention to be indifferent to her advances, I let her. I think I'm going to like it here, but of course she can't be allowed to become overconfident. Humans will walk all over you if you let them. For now, I'm allowing her to sleep in my new bed. It's a queen size, and she isn't a large human. I can be generous.

I like her house plants and wonder what happened to the rest of them. There is a pile of plant saucers which makes me think that some of them were removed, probably because they were toxic to cats. How stupid does she think I am? I know better than to nibble on anything that could hurt me, but it must have made her feel better to think that she was providing a safe environment for me. There is a cleared two-story table in front of the bay windows with a nice view of the garden, and a big tree next to the building with a pair of small birds who visit me sometimes. They are rather entertaining creatures. I may let them live awhile, at least until I figure out how to open these heavy windows. If I can pull that off, the screens are easy. I have very sharp knives at the ends of all my claws and I know how to use them. I wish she would get me a fish tank as I need a hobby.

I'm not sure how I feel about sharing a bathroom with her. At Catie's house, I had my own bathroom. There is a chair in there which is made of the same material - I think it's porcelain - as the sink. Whenever she sits on it, no doubt to admire my new litter box which I am doing my best to keep full, I rush in and rub against her knees so she can pet me. It also provides a leg up to investigate the stuff she keeps on the shelves above it. Last night I had the most fun hiding. She kept calling me and looking under the bed a million times, checking the door to make sure she had closed it. Finally, I got bored and came out of the kitchen cupboard. All the pots and pans clattered to the floor after me and it was very satisfying, especially since I had just pooped and she had to pile all the cooking stuff into the kitchen sink and wash everything. I notice that cupboard door and all the others are firmly closed now. She is obviously educable. Now, how to use that to my best advantage...

Friday, August 26, 2011

Hope Springs Eternal


There is no comfort in resignation. To achieve that state, you have to give up a dream, a belief that things will get better than they are. It requires the most brutal honesty with yourself and strips away illusions. If I believe that it will be easier for Flip and because I love him, for me, too, when he loses all awareness of his situation, I am relinquishing forever the good stories I might tell myself about a cure for his disease which will completely restore him to his former self. And while I know that brain cells cannot regenerate themselves, I am unable to completely write off that life raft of a thought and wish him oblivion. Oblivion is too final and irrevocable. I cannot sanction it.

Flip does not go gentle into that good night. I admire his fighting spirit. I applaud that something in him is trying bravely and desperately to hold the fort, against all odds. I love that he values life enough to struggle so against a disease that is sweeping him away from his moorings like a monster riptide. I just want things to be the way they were.

He was discharged from the hospital today and transported to a nursing home in Oakland. I think he's relieved to be out of the hospital, but not impressed with his new surroundings. He has a roommate with only one leg and a loud TV. His attendant until 11:00 pm is a pleasant Ethiopian man named Tesfu, who brought him "dinner," egg salad on white bread, noodle soup and applesauce because he missed the regular dinner hour at 4:45. I hope the real meals are better. I am quite a good home cook, and it makes me sad that he will never again taste any of the meals I make which he enjoyed so much. It seems wrong to make them just for me, not because I'm unworthy but because cooking and baking are both forms of artistic expression and demonstrations of my love. Cooking for oneself seems like masturbation with food.

The first thing I was asked was whether they should let him die naturally if he got sick. No euphemisms were used. I know they need to know, but I was barely in the door. I said that it would depend on the circumstances, the quality of life he'd be leaving, and that he should not be in pain. Also, I did not wish to make such an important decision when I was utterly exhausted. I was given a sheet of paper, pink, which I promised to fill out and bring back. I haven't looked at it yet.

The neighborhood, which is reputedly dangerous, is just a barrio and seems perfectly safe in daylight. At night, many places are unsafe. More terrifying was the ride home, driving due west into the setting sun which was below the visor on my windshield. I missed a turn because I was literally blinded on a murderous freeway with everyone speeding around me, but managed to find the Bay Bridge which was so fogged in that I had to navigate by the tail lights of the car ahead of me. And tomorrow I get to do it all over again.

The facility in San Francisco has apparently changed its mind about accepting Flip. He has been branded as trouble because of the incidents of aggressiveness, even though they were caused by a drug he was given to control him. It's going to be a long, hard road. The turbaned tollbooth man is gone. (I hope it wasn't something I said.) Perhaps I only dreamed him. Why not? If life is a dream, everything we see is our own invention. I think it matters less if something is real than what we do with that perceived reality. Giving up our hopes and dreams diminishes us, and maybe with a little practice I could even rebuild a husband.

Thursday, August 25, 2011

'Twas Brillig and the Slithy Toves


A very hard day today. Flip was fine when I fed him lunch and took him for a walk around the floor, but he awakened from a nap a totally different person, angry, aggressive, frustrated and not his sweet-tempered self at all. He was throwing punches at everyone, making fists, baring his teeth and hissing like a small child who is pretending to be a scary monster. Several people were in fact scared, and the woman who was scheduled to be his evening sitter refused because she said he spat at her. (I think he must have hissed and perhaps some saliva escaped, but I didn't see it.) Security was called (again.) He remembered the words "Fuck you!" and hurled them at everyone. I think he has reached the end of his endurance for the hospital, which is like prison in his case as everyone is pushing and pulling him and controlling everything he does. Another dimension to his pain derives from being relatively young and used to exercising his body. In his mind, I think, he is fighting for his life, Flip against the world. He even yanked my arm off his, even though I had just helped him in the bathroom by aiming his penis (inexpertly) at the toilet. His life has lost much of its dignity.

He has been accepted to a facility in San Francisco, but it will take more than a month before his name comes up on the waiting list. The hospital is discharging him tomorrow, and unless another place in San Francisco comes through at the last minute, he will have to go to one of two nursing homes in Oakland, which is even farther away in the East Bay than Berkeley. The better of the two is in a dangerous slum, and I am not pleased that I'll be alone on the street there at all hours, going to and from wherever I find parking. I have fought hard against this but don't have a choice as he is considered medically stable, and Medicare won't pay hospital charges once a doctor has made that determination. This explains why the hospital in San Francisco booted him against his doctor's orders and without my consent. It's obscene that our health decisions are no longer made by medical people but by insurance adjusters and accountants.

There will be many days like today, and some better ones as well, randomly distributed. A youngish, strong man with an elderly person's disease is a lot like a Doberman Pinscher, a breed that was created by crossing the Rottweiler with the Black and Tan Terrier and German Pinscher. While I have known some lovely Dobermans, it is generally a recipe for disaster to combine an energetic, tenacious terrier with a much larger, aggressive animal. My point, admittedly far-fetched, is that Flip's youthfulness in combination with a mind that is rapidly losing its behavioral filters is someone who could become dangerous to himself and others. While I am not afraid of him, today made me aware that he has become unpredictable and cannot be relied upon to be the delightful, intelligent, extremely compassionate man he always was. I just called to see how he's doing tonight and was told there was another episode. It sounds as if he may have had some kind of psychotic break, but perhaps it's just his brain cells exploding like popcorn over a fire.

So tomorrow he moves again, ready or not. This disease is intellectually fascinating and utterly heartbreaking. I can honestly say that given a choice, I would have preferred to remain ignorant of this particular knowledge.

Monday, August 22, 2011

I'm Sikh of Your Silent Treatment


The nursing home in Marin sent someone to assess Flip this morning and she decided that he was too physically active for their facility, as in ambulatory. This issue comes up every time because he is outrageously young for his ailment. Flip and Alzheimer's are a poor match. He has always been athletic and his body still works fine; it's his mind that is losing ground fast. So he is still in the hospital which would like to discharge him, and we still have no working plan.

Tonight I picked up my daughter's cat's drug paraphernalia, and everything is in place. All that's missing is the cat, who arrives tomorrow. My daughter is moving to Paris in a week and while I am thrilled for her, I am desolate that she will be so far away. I don't know when I'll be able to visit her as tending to Flip's care is still a full time job, and I'll have a diabetic cat who gets injections twice a day. But I'm happy that she is following her heart, and can't wait to see how her jewelry design and photography are affected by living in the City of Light. It's always exciting to watch someone's destiny unfold, especially when it's someone I love so much and who has such extraordinary gifts. Her greatest talent, though, is living life to the fullest.

Every night, returning from the hospital, I seem to be in the same lane at the Bay Bridge because the gentleman in the turban is always there. I always say "Hello" to him, or if I am feeling talkative, "Good evening." He never answers. So then I say "Thank you" as I hand him money and he silently turns on the sign which says I paid. Actually he should be thanking me as I am giving him money but he never speaks, although he does make eye contact with me. I always smile, lips closed, no teeth, but he does not.

I think his outfit is Sikh, and wonder as I drive away whether there is a religious taboo which makes it unholy to speak to a strange woman. Sikh teaching emphasizes equality of all humans and rejects discrimination on the basis of caste, creed, or gender. Maybe he is silent because the prospect of speaking to everyone who passes through his toll booth is daunting. Or maybe he is mute. He looks like a nice man with kind eyes and I would really like to exchange a human greeting with him. I wonder what would happen if I silently offered him a flower, after paying my toll of course. I wonder where I can find a lotus.

Saturday, August 20, 2011

Miles To Go Before I Sleep


Today I crossed all three Bay Area bridges: Golden Gate, Richmond, Bay. I drove to Marin to check out a nursing home, then up to Sonoma to see another after which I went to Berkeley to see Flip in the hospital and finally home after stopping for cat food. You know all those t-shirts that say "My parents went to the Bahamas and all I got was this lousy t-shirt?" Well, my daughter is moving to Paris and I'm getting her diabetic cat who requires insulin injections twice a day, so whatever hell I get into will have to be confined to the 12 hours between shots. This morning before my grand tour criss-crossing San Francisco Bay, I went to the pet store and selected a litter box, litter, scoop -- like putting together a baby's layette.

The place in Sonoma was dark and dreary with a nurses' station, like a very scutzy hospital. The director had Nazi tendencies, which is never good. He said dementia patients are not allowed on the patio, only in their own wing, and that Flip's 5150 psych hold might blacklist him so he was going to call the director of the place that had him handcuffed to get her side of the story. The one who gave Flip the bum rap. He would also visit Flip to assess him. He referred to the "general population" as opposed to the dementia unit inhabitants. It sounded like a prison term, which seems fitting. As he was showing me around, he suddenly stopped in a doorway and said, "Don't look in there. Mr. Jackson has fallen out of bed." I peeked and an elderly man was trying to clamber onto the bed from the floor. My tour guide didn't go in to help him or call someone else to do it.

The facility in Marin was the least odious of all I've seen, sunlight pouring in the windows and the beautiful Northern California hills beyond. There was a little more human warmth and kindness evident and the residents looked better cared for. No bad smells. I suspect they don't leave people on the floor if they fall, and the man I spoke with seemed very kind. Flip will probably be transported there tomorrow or Monday. I've told him that he's going to a new place until he's able to come home. I wish it were true. I am not in the habit of lying to my husband, but the truth in this instance would be too painful for both of us. I'm exhausted and living on Odwalla bars, mostly Strawberry-Pomegranate.

There was a very drunk man ahead of me in line at Safeway, where I stopped for cat food before coming home. He was clutching a bunch of roses by their heads which I first thought were plastic as they were improbable colors until I noticed they were half-dead. He lurched toward me, leered, and slurring badly, said, "I got flowers for my lady so she'll forgive me." "Well, you shouldn't have done it," said I, ever the sympathetic one. "I don't want these," he told the checker as he flung them on the counter and staggered away, knocking over a display of home carpet cleaning machines.

"How are YOU?" she said to me.
"Sober."
"I don't know what it is," she said, shaking her head. "They all get in my line. And he didn't even buy her flowers." ("Of all the gin joints, in all the towns, in all the world, she had to walk into mine.")

It's been a very long day. I've had my dinner Odwalla bar, Berries GoMega, and need to sleep. Sometimes I think about waking up in a different life, but I'm still curious about how this one will evolve, so I guess I'll keep it.




Tuesday, August 16, 2011

What Fresh Hell Is This?


Flip got himself sprung from the nursing home. Yesterday as I was leaving for there I got a call from the director, who said he tried to escape and I needed to get there right away. I arrived breathless 40 minutes later to find the nursing home surrounded by police cars, but it didn't occur to me they had anything to do with Flip. I walked in to find him lying on the floor with his hands behind his back in handcuffs, baring his teeth in frustration while nine police officers, six paramedics, a psychologist, the nursing home staff and several nosy residents in walkers and wheelchairs surrounded him.

The director took one look at my face and said, "It's all right."
"It is NOT all right," I said. "He's in handcuffs." I knelt down and stroked his face while they all watched, transfixed by the unusual entertainment. An ancient crone dragged her walker closer for a better look, scraping the floor.
"He hit one of my employees," said the director.
"I'm sorry about that, but he is not a criminal. He's an Alzheimer's patient. He doesn't deserve to be in handcuffs." Flip grimaced and moaned as they cut into his wrists since he was lying on them. "Take the damn handcuffs off him!" I yelled.
"Ma'am, it doesn't help for you to yell at us," said a paramedic. "It's for our protection."
"I'm not trying to give you a rough time, but he's a very gentle person," I said.
"We don't know that."
Mitch the psychologist stepped forward and told me that Flip tried to leave the building and was being forcibly restrained when he decked someone. (That's my boy.) The director called the police and every unit in Berkeley responded. It was a lot of head of policemen, a cluster of blue as far as the eye could see.

Someone grabbed a towel from a nearby room to place under Flip's head and the old man (wheelchair) whose room it was bellowed, "I want it back. And it better not have any semen on it." (I couldn't make up this stuff.)

Eventually, Flip was hefted like livestock onto a gurney and wheeled to the ambulance. They wouldn't allow me to ride with him so I followed in my car. I have never been in an ER with bouncers before -- every ten feet, a large man in a shiny black suit sat at a table, looking mean. They put a 5150 on Flip, which is an involuntary psych hold on a person deemed a danger to himself or others. Big, bad junkyard dog. He would love it if he were still in his former mind. Of course if he were, none of this would have happened.

After many hours, he was admitted to a room and a very large man from Cameroon (2 sons, 2 daughters, 16, 13, 5 and 2) was assigned to sit with him all night and watch him. Mark Fezeu (I give his real name because somebody should name a street after him) was as gentle and patient as he was big. He handled Flip with supreme grace, asking permission in his deeply accented, lovely voice every time he touched him for any reason. He never compromised Flip's dignity, even while helping him in the bathroom.

When I left the hospital at 9:00, I discovered that the parking lot across the street from the ambulance bay had closed at 7:00 and I couldn't get my car out without crashing the turnstile. I went back to Flip's room, where a nurse brought me a cot and placed it in the bay windows with city lights (as far as the eye could see.) I didn't sleep all night, so I saw Mark change Flip's wet linens and hospital gown twice with great loving humor. At first light he noticed I was awake and said, "Susan, should I shave him?"
"Mark,you've already worked twelve hours. Don't do anything you don't have to do."
"But I do have to do it," he said. "We have to keep him handsome." And he did. Mark should have sonnets written to him or win peace prizes as he and nearly everyone I have met at this hospital is proof of the fabled kindness of strangers.

The ER doctor tried to get Flip readmitted to the San Francisco hospital that discharged him so rudely on Friday, but they refused to take him back. Yes, they have that option. So for now, Flip will remain in the Berkeley hospital until we figure out what to do for him. I believe he's in good hands. There has been a lot of discussion, not initiated by me, about DNR orders regarding Flip. I should probably give some thought to my own, too.

Meanwhile, despite my repeated failure to get Flip's brother involved in his situation, I thought I should inform him of these changes. No good deed... As I related the handcuff episode, he interrupted me to yell that I was "too defensive" of Flip, that "he broke the law and deserves to be punished." How curious that Flip is the one considered demented. Then he screamed that if I had done my homework, this would not have happened, and it's all my fault. He said that this hospital has the lowest ratings of any hospital in Berkeley. I'm sure he's wrong as it seems like a wonderful, caring place. I tried to ask how I should have anticipated that Flip would ever be in a hospital in Berkeley but he interrupted to rant some more. He insisted that it wasn't a hospital at all, but a nursing home with a different name. He said he knows I think he doesn't care (good guess, Sparky) but not a minute goes by that he doesn't think of Flip. (You could have fooled me.) Every time I tried to say something, he burst out with more profanity (hitting the sauce a bit much, I think) and I abandoned my intention to tell the hospital it was okay to give information on Flip to his brother. The HEPA Law binds hospital personnel not to disclose anything except to the patient's next-of-kin, which is me. The third time he yelled "BULLSHIT" I hung up. He has since sent me sarcastic emails accusing me of lying to him about which hospital campus Flip is in. I wish I could discuss this with Flip, who would put it into perspective and enable me to breathe again. I remember breathing. I always liked it.

Flip's wrists are raw and bloody from the handcuffs. At least no tasers were used and for that, I am grateful.

Friday, August 12, 2011

Save the Flip


I am livid. I am trying to convince myself that things happen for the best, but it's a hard sell.

Flip's neurologist put him on Dilantin a few months ago for severe muscle spasms or seizures. One of the known side effects of this drug is confusion, not really optimal in an Alzheimer's patient, and his symptoms continued to worsen until I got his doctor to wean him off it. She then put him on Gabapentin, also known as Neurontin, which increased both the frequency and intensity of his seizures. The hospital doctors decided that since he wasn't improving, they would triple the dosage. It practically killed him, so I went to his neurologist's office and left her an urgent message. She had him taken off it immediately and ordered an EEG, which was apparently shocking in the amount of full-blown seizure activities it showed. She said the seizures couldn't be left untreated and put him on a third drug called Keppra, jump-starting him with an IV.

Meanwhile, the hospital's case manager had found a nursing home in Berkeley, which is a good distance from our home in San Francisco, especially in traffic, as well as an expensive commute with gas at $4.00/gallon and bridge tolls. I told Flip's neurologist of my reluctance to place him there, and she stopped by his hospital room yesterday on her way to the airport and wrote in his chart that it would be unsafe to move him over the weekend until it is known how he reacts to the new medication. She also ordered another EEG for Monday, which she assumed would buy me a little time to find another place. I arranged to visit the nursing home today anyway, and was about to leave when I got a call from the case manager.

He said they had discharged Flip and arranged for an ambulance to transport him to Berkeley at 3 o'clock. I asked about the EEG ordered for Monday and he said they were doing it today. "It won't show much," I said. "He's only been on the new drug for a day and a half and the last one isn't out of his system yet." "We're doing it anyway," he said. "I wanted to let you know." (Oh, what a good boy am I.) Deceitful turd. I spoke to a nursing care director recently who told me that she used to be a musician, too, but the music business wasn't mean enough. We agreed:Health care is.

I went to the hospital to spend time with Flip before his transfer, and the little creep case manager had his door closed, which is unusual as his room is really a closet. I'm sure he didn't want to run into me. (I have power.) The EEG was done in Flip's bed. I noticed that the abrasion gel hadn't been washed out from the one he had the other day.

The ambulance was an hour late, and it took me an hour and a half to drive there in rush hour Friday traffic. The place is dispiriting, to say the least. Flip shares a small room with an elderly gentleman who has a loud boombox. There are two small cubbies, both on the other man's side of the room, and his large easy chair and table block access to the one for Flip's things. I had packed him a suitcase and also brought a small CD player and some CDs including his own music so he can always remember who he is. There is no room for any of it. I didn't see a bathroom with a sink, only a toilet. I should have taken him camping instead.

His dinner consisted of a sandwich made of either stale bread or toast - it was impossible to tell - with a slice of American cheese inside. Dry. No mustard, no mayo, a small cup of unheated canned tomato soup - how much trouble is it to microwave it for a few seconds? and a "salad" of shredded iceberg lettuce with a dollop of bottled dressing. Dessert was a small cup of canned fruit. There was nothing with any nutritional value at all. He ate a little. I would have passed on all of it. They attach ankle bracelets on the residents so they can't escape.

I have to spring him. Realistically, I can't take care of him alone any longer, and our apartment is too small to have someone else here to help. But I can't leave him there. I just can't. I've told him he is there to recover until he's well enough to come home. I'm not exactly lying because I'm not committed to his being there for the rest of his life. If the place is better than my first impression and he ends up staying there, I will have to move to Berkeley. Then I'll be Heart in Berserkley. But it doesn't have the same ring.

In case my day wasn't perfect enough, I have no hot water. An unhappy plumber arrived at 10:30, but he can't get into the boiler room so it won't be fixed until tomorrow, at best. Sometimes I think God doesn't believe in me.