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.

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.

Thinning the Herds

Like a highly skilled sharpshooter, Alzheimer's is taking out one part of Flip after another. I arranged to sell most of his musical equipment as he can't use it any longer, and it takes up precious space in our small apartment. There is too much for me to transport, some of it heavy, so someone came from one of the guitar shops to look it over yesterday. Today, she called with an offer which was considerably less than I expected as we have a small fortune invested in this gear. Although some of it has hardly been touched as it was purchased after his abilities began to disintegrate and is in mint condition, it is still officially used, and the store needs to make a profit when reselling it. Flip and I agree that musical equipment should be used.

I was also forced to factor in my own attachment to his guitar gear because of my memories of him playing music. Flip was a fantastic guitar player who actually jammed with Jimi Hendrix in Maui when he was 19, but maybe removing the visual reminders will be less painful for both of us. I know that my memories are not worth money, but being offered so little seemed to imply that they are not worth very much at all. It's hard to separate Flip from Flip-the-musician, though. He has made music all his life, and more than anything else, it has defined him.

"How can you tell the dancer from the dance?" WB Yeats

Stir It Up

Flip looked up from his computer. "Barbara " " " " (indecipherable) line." He has Alzheimer's so all the words were garbled.

"What?"

He tried again. "Barbara " " " "." No luck. He walked into the kitchen and pointed to the glass mason jar in which we keep our coffee beans.

The charades game was on. "Barbara Boxer?" Blank stare. "Barbara Streisand?" Vigorous head shaking. "Bob Marley?" He nodded excitedly. Ahhh. "Bob Marley has a line of coffee beans!" He nodded again, beaming. And Flip wants to buy them. Of course.

"Are you thinking they have pot in them?" I asked. He looked hopeful. Ganja coffee. There are many flavored coffees on the market, it's not such a stretch. Jamaican Blue Mountain is my lifelong favorite coffee, but it sells for about as much as a Porsche, another brand I hold in high regard. I can't afford either, however.

Flip was intent on supporting Bob Marley's business enterprise. I reminded him that it would not benefit Bob Marley himself since he is dead. Flip looked crushed. Apparently he had forgotten. I felt bad for both of them, but I was on a roll. "He died in 1981," I added. I could have skipped sharing that detail. It was probably mean, although I was just trying to clarify something, anything, in hopes that our world would somehow return to its formerly reasonable state.

Rohan Marley, one of the singer's sons, founded the company as a tribute to the great reggae legend. He says, "My father came from the farmland in Nine Mile. There, he learned a deep respect for nature and humanity - respect that helped guide his life and ours. He said he would return to the farm one day. That was his dream."

Bob Marley's real name was Nesta Robert Marley. Maybe they're calling the new product "Nestacafe."

When Support Groups Go Bad

Yet again, I have confirmed that I am not a joiner. Today I attended my fibromyalgia support group for the first time in months. The normal procedure is for each of the members to tell what is going on in her life, and how it affects the disease. Although I like most of the women in this group, sitting for two hours discussing illness strikes me as counter-productive because what you focus on expands. I would rather ignore the disease and do more interesting things. But to be fair, I may have that luxury because I am not as severely afflicted as some of the others.

There is a new woman in the group whom I had never met before. Leslie has a glass-shattering voice which caused my nervous system to accelerate from neutral to full bore migraine in 60 seconds. She hijacked the conversation to inform us that she has traveled the world extensively, that she has been a fixture for many years on the 100 Most Beautiful Single Women in San Francisco list, but that she has no boyfriend although she had stated earlier that she'd spent the night on her boyfriend's yacht in Sausalito. She inflicted a shtick routine on us about getting a bikini wax, announced that she has not had full toenails for years because of a fungus, and demanded the answer to all her life's problems, but when anyone made a suggestion, she yelled "NO!! I already tried that."

I didn't make any suggestions because I was lost in wonder that there is a list of the 100 Most Beautiful Single Women in San Francisco, and that she is on it. I was mildly curious about her ranking on that list, but chose not to engage her in any more conversation than necessary because her voice was like cracking black ice on a winter pond, the kind that kills people.

I only went to the group because Shirley, the leader, has a new dog, a Belgian Shepherd, and I wanted to meet her. The dog, who is beautiful and sweet, has been debarked. I would have preferred that if anybody permanently lose her voice, it be Leslie. Life is unfair.

Yesterday, Flip and I attended our weekly Alzheimer's meeting at which the diagnosed parties are separated from their caregivers into two groups which meet in different rooms. When I rejoined Flip afterward, he told me that Heather, the woman who leads his group, had yelled at him. He was unable to remember exactly what she said, but he was very clear that she tore into him, broke his balls and it was humiliating. He stated that he would not return as long as she was there.

It seems that he welcomed a new attendee, and Heather's agenda did not allow for "side conversations." I think the meetings should be more flexible as these people are already dealing with a horrible disease, and perhaps her ego also needs an adjustment. I don't know exactly what happened since I wasn't there, but protecting Flip is my main concern. Nothing should be added to his huge and unfair burden which can be prevented. Plus, they don't have any dogs at the Alzheimer's meetings.

I suggested that from now on, we be each other's support group. He agreed. "They're just bitch sessions anyway," he said.

"So how are you doing this week?" I asked, dangling my reading glasses over my book.

"Shitty," he said as he idly thrummed his guitar. "How are YOU?"

"Crappy." I put my glasses back on and found my place. "Ok, meeting's over. As you were."

I feel so supported now, it only took ten seconds, and we didn't have to go anywhere. I think we may be onto something.

New Sheriff in Town

Yesterday we saw a new neurologist. The doctor we've been seeing for the past year is a lovely man but his approach to Flip's disease is completely laissez-faire, what-will-be-will-be. Sitting in his presence for a few minutes every three months feels like a coffee klatch without the coffee, so I sought a doctor who specializes in Alzheimer's.

Dr. G is personally quite repulsive. He creeps me out, and not only because of his attire: Blindingly bright turquoise nylon shirt so tight that his belly bulges between the buttons in flaccid bits and a tie that looks like Salvador Dali vomited. He walks like a chicken and his hair appropriately resembles a cock's comb. Let's just say that he is old enough to know better.

He enters the room, strutting, and informs us that he doesn't have to work -- he does so because he loves it. I think this is meant to be reassuring but it falls far short of its mark.

I am uncomfortable that he makes eye contact only with me the whole time he is with us. To be fair, I have done most of the talking because Flip's disease is impeding his verbal skills. Since doctors allot only so much time per patient, it is more ergonomic for me to explain what is going on. But if he is going to treat Flip as a nonentity, then he is not our man.

He touts himself as being on the "cutting edge," an expression which I have found usually indicates a huge ego. And while some degree of ego is probably necessary to accomplish anything, too often it controls the beast and blinds it to its own faults.

He has one of his assistants, of which there are several, make us copies of the particulars on two drug trials he is running. The sheaf of papers is a good two inches thick. I have my reading material for the next millennium right there.

One drug is an hour-long infusion by needle which is given every six weeks, followed by an MRI to monitor swelling of the brain which is a possible side effect. He minimizes the seriousness of this for us, but I am a lay person. Swelling brains do not sound good to me.

The other medication is a daily pill, the possible side effects of which are: headache, diarrhea, rash, head cold, dizziness, problems with balance, nausea, tiredness and muscle pain, vomiting, abdominal pain, cough, sore throat, itching and visual disturbances, as well as intestinal blockages requiring hospitalization. Confusion is another, although I am not sure this could be determined in a patient with Alzheimer's.

Either of these regimens could have been an important part of Dr. Mengele's repertoire, or the Marquis de Sade's. It seems that quality of life should be a factor.

Flip asks me if there is a third party regulating these trials, and I tell him there is not. Basically, I am all he has. Unfortunately I am not a trained medical person, but on the plus side, I am reasonably intelligent, I can read, and I am absolutely devoted to protecting him.

I hate that the doctor must be considered an adversary. We are between that rock and hard place in that seeing Doctor #1, who is a nice man and seems genuinely regretful when he tells us there is nothing he can do, has begun to feel too much like giving up. Our visits to him are basically a quick conversation after which he pronounces, "Yep. You've still got it."

I need to feel more proactive and less resigned even if we are fighting air or tilting at windmills.

Doctor #2, on the other hand, may be on the cutting edge but he is also clearly in the pocket of the drug companies. He is probably being paid for every body he brings into the studies so there is no way his first concern is for the patient. It is obscene that drug companies and insurance companies control medical care in this country.

While I understand the necessity for drug trials, I am extremely reluctant to subject someone I love to them. I want a drug that will erase all symptoms of the disease with no side effects, a drug that will spring fully formed and armed to the teeth like Athena from Zeus' head. I want to know that no animals, human or otherwise, were harmed in the making of this drug.

Is that too much to ask?

This disease is a maelstrom whirling faster and faster. As rational beings, we want to make sense of our life's experiences. Understanding them is second nature because we have no other way to navigate the future. Accepting that perhaps there is no sense to be made here goes against all our conditioning as reasoning beings.

Alzheimer's is the best reason I know for living in the here and now.

Call me Lady Godiva

As we headed home from the chocolate shop I asked Flip, "Do you want me to carry the rest of your truffles in my purse?"

I licked my fingers on which a little dark chocolate dipped candied orange peel had melted.

"Can I trust you?"

"You married me. There is an assumption of trust."

He paused, then handed over the aromatic little gold Godiva bag, which I stuffed in with my wallet, keys and his other glasses.

Men only get married so they can use purses without carrying them.

"Are you sure you won't eat my chocolate?"

I shrugged. "If you died, I would eat your chocolate in a minute, no question. But you're still living. That changes everything."

"It warms my heart," he said.

He reminded me for the 5th or 6th time today that he is a good-looking guy. He claims that I never tell him so, which is not true, while he tells me "all the time" how good I look, also not true.

I finally put it to him. "Overweening ego and Alzheimer's is too much on the same plate. I can't deal with both, so take your pick."

He's thinking about it.

I softened the blow. "You are a good-looking guy," I said. "I'm lucky to be seen with you."

He got all misty.

"Of course, they don't know you're balmy."

As soon as we got home he turned on the television. Flip is on intimate terms with every "Law and Order" episode ever aired.

"Alzheimer's is in all the ads," he remarked.

"Oh, good. I'll take three."

I watched, too, for a minute. "It's becoming epidemic. It will be much more common in a few years as the boomers age. You're a pioneer, a trailblazer."

He studied the actor in the Aricept ad, who was much older than he is. "He's pretty good."

"You'll have to work hard to top that," I said.

Some of the commercials are really sneaky. They cut to them seamlessly and mimic the lighting in the shows, sucking you in before you can put the remote on mute. (And I do mean sucking.)

There is a test to let you know if you've been watching "Law & Order" too long:

If you see a woman's face with closed eyes and assume it's a cadaver but when you look more closely you realize it's an ad for face cream, you might have a problem. It makes me uneasy that I've grown so used to seeing dead bodies that I automatically process corpses over cosmetics.

There is also the matter of the very flowery commercial which shows a sweet-looking older woman getting married in a lovely gown and -- Depends. I think this scares me even more than becoming one of the corpses because if someone kills you, you're dead. It's over. But Depends is forever.