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.
Tuesday, August 30, 2011
Monday, August 29, 2011
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
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
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
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
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
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.
"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
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
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.
Friday, August 05, 2011
Flip is in the hospital. I took him to the ER a week and a half ago because he was massively confused and combative, and I thought he might have had a stroke. After many hours, it was evident that I could no longer safely care for him alone, and he was admitted. He has been there ever since.
I spend many hours with him every day, and he seems to be worsening at a shocking rate. The hospital staff is wonderful, and has arranged for personal care assistants to be with him at all times as he needs help eating, walking and performing the most private acts. He is deprived of his dignity on an ongoing basis, mightily confused and often agitated, but still aware enough that he is miserable. It will be easier when he loses that awareness, even though it will also be sadder as there will be almost nothing left at that point which is incontestably Flip. This disease is eating his brain, his body, and his very essence. For me, every day inflicts a fresh wound as I steadily lose him in increments. He is dying inch by inch. What manner of deity concocted such a cruel punishment, and why has it afflicted someone who has always been incredibly compassionate, generous and kind?
The hospital case manager is pressuring me to take him out of there as he has overstayed his welcome, but the nurses who are actually involved in patient care agree that I can't safely care for him any longer. They claim to be amazed that I managed to do it for so long.
Yesterday, I visited my first-ever nursing home. It truly did resemble death's waiting room superimposed on an elementary school with a very low budget. All the residents I saw were decades older than Flip. I also disliked the fact that it was located in Daly City, which is a particularly odious part of the Bay area. I think Daly City is God's punishment for anyone stupid enough to leave San Francisco without crossing either the Golden Gate Bridge or the Bay Bridge. Plus, I have always gotten lost there on my occasional forays to Krispy Kreme Donuts, the only one in the entire Bay area, on the way back from Home Depot. Yesterday was no exception. Mapquest helped me to navigate many surface streets and two freeways until I got to Daly City, at which point I got so lost I thought it must be a sign and nearly turned around. I was a half-hour late for my interview.
Today, the nursing home's administrator came to the hospital to assess Flip and decided that since he can still walk, he didn't belong there. Good! I wasn't planning to take him there anyway. In fact, I'm not sure what I'll be able to arrange because he doesn't qualify for Medi-Cal, called Medicaid in other states, but we can't afford private care at thousands of dollars per month. So we're at an impasse. I know there has to be a solution which hasn't yet revealed itself to me. One of the worst aspects of this dilemma is that I would normally discuss it with Flip and we would arrive at a solution together, but that is no longer possible. It feels a lot like betrayal and it tastes bitter, like blood, in my mouth.
A young couple moved into our apartment building today. I haven't seen them yet, but I have been hearing them since I returned from the hospital. They just noisily saw friends off who noisily arrived an hour ago, and yelled "Thanks for the champagne!" From this I infer that they are at the beginning of their life together, and I wonder what it will hold. Will one of them develop Alzheimer's after twenty happy years, and the other be where I am now? I'd like to think that in twenty years this disease will be cured or rarely contracted like small pox and bubonic plague. It deserves to be obsolete. But statistically, it is gaining in the polls and becoming epidemic, just when our national healthcare system is at its sickest. What manner of deity indeed?