Respite Care Widow

Flip is in a respite care center for three days. I told him he was going to camp, and that the nice people there would get to know him and try to help us through his disease. He seemed positive about going, which surprised me, but by the time I left an hour and a half later, he had noticed the decrepit old people hovering like crows in their bathrobes and said something in my ear which I'm sure meant "WTF?!" but was unintelligible, like everything he says these days. He had been set up at a table with a 26-piece jigsaw puzzle of the New York City skyline at night. He is by far the youngest person there.

I told the program director that if he seemed miserable and really wanted to come home, I would pick him up early. I know that I badly need a break from constant caregiving with almost no sleep, but leaving him didn't feel nearly as good as I thought it would. It feels like a betrayal just when his own body is abandoning him. It reminds me of having to take beloved but incurably ill animals to the vet to be put down. And yet, the prospect of three nights of uninterrupted sleep and a spotless bathroom is alluring. As he has rapidly lost the capacity to do most things for himself, I have had to take over and do them for him.

I know that if our situations were reversed, Flip would do the same for me. In our wedding ceremony, we vowed to always put our relationship before our individual wills, and I believe we nearly always have. It's painful to realize that for the most part, Flip has left the building. It is time for him to be in a facility where he can get 24-hour care from people more skilled than I who work in shifts so one person doesn't have to do it all. I have almost forgotten how easy it is to bathe, feed and dress only myself.

He is on a locked floor with an elevator which only operates when the code is keyed in by employees because he is a flight risk. I called the reception desk on his floor at 8:00 pm to see how he was doing. A woman named Freweyi called him to the phone. As soon as he heard my voice, he began to spout rapid Martian and got so worked up that she took the phone away from him. Whatever he said, I know it was code for "COME AND GET ME. NOW." I may not understand what he says, but his intent is usually clear. I know he'll survive the experience, but I would get more out of my three free days if it were not at his expense.

Alzheimer's is the gift that keeps on giving.

Land of the Free

New York, my home state, signed into law a marriage equality bill yesterday. It is not the first state to do so, following five other states plus the District of Columbia, but it is by far the largest and most populous state to uphold the principle of equality for all, and more than doubles the number of same-sex couples living together in this country. The impact will be enormous when some of those couples choose to marry, and social commentators more knowledgeable than I are confident that most states will follow suit within a decade. This is a proud day for America as we finally begin to live the principle that we are all created equal. It's about time!

We do not have the moral or ethical right to dictate whom others choose to love. I have never understood why so many people feel strongly about an issue which is not their business, and I believe it cowardly at best to cite the Bible as justification of their prejudices. There are numerous passages in that book which preach fairness and tolerance toward ones fellow humans, but bigots conveniently ignore those in their lust for power and control. I think it matters not whether one loves a man, woman or Boston fern, and feel deeply sorry for those who cannot love anyone at all.

The battle for gay rights began in 1969 when police raided the Stonewall Inn, a gay bar in New York's Greenwich Village, and its patrons resisted. The incident is considered the start of the gay and lesbian movement, so it's most fitting that this issue has finally come full circle. I am proud of those who have fought for so long for their basic human rights, and I am proud of those legislators who helped to make them a reality for all. In the face of so many foreign wars, a tanked economy, and general, widespread despair among Americans, we finally have something to celebrate.

There But For the Grace of God Go I

Flip just returned, highly upset, from a walk, the only activity he can still perform by himself. I tried to determine if he had fallen, or nearly been hit by a car, but those things seemed not to have happened. His speech is completely gone now ~ his attempts to express himself are unintelligible to the extent that even with a longtime common frame of reference, I usually have no idea what he's saying. But as nearly as I can tell, he attempted to be friendly to other people he met and was rudely rebuffed. I have seen strangers turn away as he smiled at them, and I understand their instinctive fear of someone unknown evincing familiarity. But he has also grown quite frail ~ he now weighs 154 pounds at 6'4" despite all my attempts to fatten him up, and looks very old lately. He is clearly no threat to anyone -- at worst, a kindly old man struggling to retain contact with the rest of humanity which is failing him dreadfully. It's a sad thing when fear eliminates compassion.

Alzheimer's Dementia is incredibly isolating. I'm sure it's because people don't know what to say, so they avoid discomfort by avoiding contact with us. His old friends have long since abandoned him, and it's impossible to make new ones now. No one should ever be shunned as undesirable, and it's particularly sad when that person was as outgoing, witty, talented and kind as Flip. He is not sowing what he reaped, at least in this lifetime. He was the most generous person I have ever known, yet I can't remember the last time anyone who was not born to me returned his smile. Apparently he has been deemed a person with nothing more to give.

Yesterday over lunch, I said, "You know I love you, don't you? I get impatient because taking care of you is hard, but I do love you." And for just a second, he was lucid and said clearly, "I know." Then he lapsed into gibberish, none of which was understandable at all.

I feel called upon to provide the loving mothering he never got from his own mother because he deserves as much, and more. But the burden is enormous. The expectation in our dealings with others is that they learn more every minute, which is the normal human condition. With this disease, the process is reversed so that its prisoner unlearns everything he ever knew, day by day, until presumably he is as blank as he came into the world. Watching Alzheimer's relentless march through Flip's brain is like taking an arrow between my own eyes over and over.

It would be nice to insert something positive here, but hopelessness characterizes this disease. If I could ask one thing of others, it would be to return a friendly gesture whenever possible instead of recoiling in suspicion because we never know the burdens others carry, and a smile really could make someone's day.

"A warm smile is the universal language of kindness.”
William Arthur Ward

A Self-Inflicted Wound

Today's news reported the death of Huguette Clark at age 104. She was the daughter of William A. Clark, a U.S. Senator and copper magnate from Montana whose fortune was rivaled only by that of John D. Rockefeller. She lived as a recluse for 75 years in a luxurious apartment in Manhattan, but apparently spent the last 23 years in hospitals for unknown ailments. Her only relatives, nieces, nephews and cousins, were denied access to her as were all but her trusted accountant and lawyer, both of whom are now under scrutiny for perhaps mishandling her vast funds. At the time of her death, she was worth an estimated $500,000,000. She gave sparingly to charity, and had no friends. Even her lawyer and accountant knew her only as a voice behind a closed door, like the Wizard of Oz.

Huguette Clark spent her early years in Paris and New York and spoke English with a French accent. She took dance lessons from Isadora Duncan in her teens and was a fixture on the society flapper scene of the 1920's. She married in 1928 but divorced two years later, never married again and had no children. She owned multi-million dollar estates in California and Connecticut, but confined herself to her sumptuous quarters on 5th Avenue with her priceless collection of French dolls.

The normal expectation is that wealth will buy freedom but Ms. Clark seems to have kept herself a prisoner, which intrigues me. The world is vast and wondrous. I cannot imagine having the means to see it all, and not doing so. I never dreamed I would find anything to respect about Paris Hilton, but she undeniably makes use of her family's wealth. Yet even beyond the waste of bottomless resources which bestowed an enormous capacity to enjoy life and do good, Ms. Clark's story seems like a life unlived. We have all heard that money can't buy happiness, but I wish she had at least tried. How very sad to die, and be missed by no one.

On Celebrating the Death of Osama bin Laden

I'm glad he's gone but I don't think his death solved anything, although it surely helped our President's reelection campaign. Bin Laden was a symbol of evil, but his victims are all still dead while al-Qaeda is still alive and will surely seek reprisal against us. Our public celebrating compounded their perceived insult, and while I admire the unbelievably brave Navy SEALs who took him out, it always makes me nervous when civilians take to the streets chanting slogans. Especially when they're chanting in my own language.

I would have preferred solemnity and quiet after President Obama's announcement, not because bin Laden deserved it but because our own national dignity does.

Old Dog Learns New Tricks

For a very long time, a young man who lives in the building next to mine has been smoking in our doorway, creating noxious conditions for non-smokers. I am well versed in the dangers of second hand smoke as I grew up with it, and have had pneumonia five times. My brother suffered from asthma as a child, unsurprisingly, as we were daily victims of our father's chain smoking at home and in closed cars. Walking out of my building through clouds of blue smoke every day has make me angry, and has also made my hair and clothing stink on a regular basis.

Yesterday, after glaring at our neighbor for months, I finally summoned the courage to ask him not to smoke in front of our door. I was prepared to back up my request with the fact that a San Francisco ordinance makes it illegal to do so within 18 feet of a door or window, but tried to find words which would not be overtly hostile.

"Would you please not smoke in front of our door?" I said. He replied, "I don't. I smoke in front of my own door." I said, "Well, it seems as if you're over here a lot, too." He said, "Is the smoke getting into your apartment?" "Yes." "Oh, sorry. I won't smoke there anymore," he said. I thanked him and went on my way, quite stunned at how nice he was about it. He is also so young that my maternal instincts fluttered for a moment, but I refrained from lecturing him on the effects of smoking. Quit while I was ahead.

Today, I noticed him puffing away on the far corner, across the street, his back to my building. I almost felt bad for banishing him, so I walked over and said, "I just want to thank you again for being so nice yesterday." He smiled and said, "There are lots of other places I can smoke." I continued, "I hesitated to mention it because I know everyone is mean to smokers. I don't hate smokers, I just hate smoke." Exhaling like a chem trail, he said, "No problem."

I've been hating him for months, and it was so unnecessary. I could have saved myself all that angry energy if I had manned up and mentioned it sooner. How could I have forgotten that most people are really nice if given a chance to be? I don't think we'll be Facebook friends or go to movies together, but now I'm sending good thoughts his way, and it's such a relief. Some of life's lessons come from the most unexpected places.

Be Careful What You Wish For

First, the good news: I won the gift basket at the farmers' market I visit every Sunday morning. Once a month, they have a drawing for a wicker basket with $100 worth of produce, and I have never won it before. I had a strong feeling I would win it this time so when they called with the news, I was not surprised.

The produce in the basket is predominantly green in honor of St. Patrick's Day. I thought briefly of giving it back as I am not Irish and therefore, perhaps, undeserving, but luck of the Irish, the urge passed. And now I am in a moral quandary as there was a huge stalk of brussels sprouts, which I heartily despise although it is undeniably picturesque ~ like a shillelagh with lymph nodes, capable of inflicting grave mortal damage. So I mentally inventoried everyone to whom I could give the thing and came up empty. Throwing it away is not an option because it would be wrong to scorn free food, nasty as it is, grown by a farmer and given to me. There have been times in my life when I was hungry, and I'm not about to tempt the fates again.

I looked online for recipes and learned that brussels sprouts on the stalk are likely to have tiny bugs in them and should be soaked for 15 minutes. I'm a vegetarian. After removing the little heads from their momma, I set them to soak in the kitchen sink last night and they are still there, emitting a terrible odor. As a child, I was often importuned to eat because of all the starving children in Europe. I passionately wished that my parents would take all that liver and cauliflower and send it to them. In today's world, there are starving children everywhere, and some of them would doubtless love to dine on brussels sprouts. Again, I am powerless to repair this inequity.

Yet my resistance is great. I even looked to The Buddha for loopholes, but he laughed. He instructed that we think about where the food came from and the amount of work necessary to grow it, transport it, prepare it and bring it to the table. I've already covered the growing and transporting part on my own, am stuck on preparing and eating it. One should then consider if one deserves the food. Do I detect a slight bit of wiggle room there? Clearly I am unworthy if I am spending so much energy on not eating food I was given. I am the very definition of "unworthy." If you look it up in the dictionary, you will see my picture. Food is only received and eaten for the purpose of "realizing the Way," which is undeniably difficult to accomplish while gagging. What we have here is a doctrinal dilemma.

The Five Moral Precepts are no killing, stealing, sexual misconduct, lying, or partaking of intoxicants. I do none of those except maybe lying on occasion. You would think I could finagle a pass on brussels sprouts. Reading further, I learn that onions, garlic and other pungent plants are forbidden. No one could deny that brussels sprouts are pungent. I read faster, but no. The five plants are onions, garlic, scallions, chives and radishes because eating them creates anger and bad temperament as well as attracting hungry ghosts. I would be willing to attract ghosts if they would take these brussels sprouts off my hands.

My limited understanding of Buddhism tells me that food, eating and taste are all illusions anyway, not a part of our true, seeing nature, which is distorted by our ignorance. Buddhism aims to end all suffering, and I believe that I can best advance my true, seeing nature by not suffering at dinner. After all, charity begins at home. That's my story and I'm sticking to it.