50 some observations

I haven't written for a long time. I've been really busy. I became a body shop at home consultant in October to make some extra money, and I like it A LOT. Plus I did NaNoWriMo (finished in 15 days this year, kinda slow) this month.
We've been doing puzzles on Friday night instead of playing cards. I like the puzzles better. My dad gets really frustrated, throws pieces, gets upset when he can't match them and I'm in the corner putting pieces together like clockwork. (Is that an apt metaphor? You know what I mean.)
I've been noticing a pattern in the odd behaviors of my dad.

• Hoarding napkins when we go to restuarants (could I make that up? no, I couldn't).
• Obsession with how much things cost.
• Always having to be able to see his things (coat, hat, etc) when he's not home.
• Taking lots of free pens and business cards when offered. (I mean, lots. He'll take a dozen if you let him. The people at the Alzheimer's study allow him to take handfuls, but most places don't.)
• Freaking out about seatbelts in the back seat of the car.
• ALways having to know where the cat is. (Is the cat inside? Did you let the cat in? Where's the cat? Where's my baby?)
• Cutting his food until it's puree, throwing away all the "fat" (which includes actual fat, char marks on grilled chicken, the coating & skin on fried chicken, and basically anything that doesn't match in his eyes).

Some of these things are about saftey-where's the cat, where's my coat, the seatbelts, but the rest are about control.
He's trying to control his environment because he can no longer control his own mind.
And what does control cover? Fear.
Basically, he does all these odd things because he's afraid. And that's SO SAD. I don't have words for it.
His other new thing, which comes and goes (I can only hope it goes away permanently, but I doubt it)--is that we're trying to poison him. The medicine is making him worse, and between the pills he takes every day (Namenda and Accricept, however they're spelled) and the study at Yale, he's degenerating, and that's because we're trying to kill him. He's got it in his head that he's got only 2 years to live. (In reality, he's got about 9--at his age, 11 years from diagnosis, and it's been 18 months). Some days he refuses to take the medine. I get so frustrated trying to reason with him "why would I want to kill my own father? Don't you understand that the pills are what's keeping you functioning at all?" Yes, he's failing, but he'd be failing worse without his pills, but I can't PROVE it to him. And proof means nothing. His world is an irrational one, and that means I can't reason with him AT ALL.
And my grandma's going off the deep end. Her blood pressure is through the roof. She isn't eating. She reads the side effects of her medicine and manifests them all immediately. She claims to be dizzy all the time and paces, paces, paces. She wouldn't talk to anyone at Thanksgiving dinner and as soon as we finished eating (she ate less than a child would) she made Will take her home (it snowed and she wouldn't drive). The doctor wants to see her this week. I told my mother to ask him to give her a sugar pill presciption and tell her it's for the dizziness. She won't. I will try to call the doctor but I don't think I have any authority over my grandma's care. We all have the same doctor--me, mom, dad, gramma, and Will. Talk about a general practicioner!! My mom thinks grandma's depression medicine isn't helping her anymore--either she needs to up the dosage (she takes 1/4 of a pill at a time) or change prescriptions.

49 Paranoia...

I took my dad with me to the vet today. I really needed the help--I brought 4 of 5 my surviving birds, plus I can barely get in & out of the car (if you've been reading my other blog, you know about my fall last week and my smashed coccyx).
I asked my parents to come over my house (usually on these excursions I pick up my dad) so they could help me catch birds, if necessary (I can't bend over either), and I actually asked my mom for help cleaning. My father just stood there, his coat on, his hands folded before him (his favorite new posture) fretting about how much gas I have in my car. And why couldn't my mom drive instead of me (because she was staying at the house to clean). And we should leave soon so we could come home soon (he can't comprehend an APPOINTMENT anymore, I guess). So we ended up getting there about 1/2 an hour early. Luckily they were able to take us right away. My father always asks for the cut feathers and the vet assistant gave him a whole bag of lovely feathers, macaw and Amazon and cockatoo.
We had gone out to lunch before that. My mom put my dad's coat, her coat, and her purse on the back of her chair. (We were at a table cuz it's too hard for me to slide in and out of a booth.) He kept turning around the check the coats. He wanted the coats across from him, next to me "so I can see them"--even though I could see them, I guess that wasn't good enough.
He was so upset that my car only had 1/4 of a tank left. He's seen how much trouble and pain it is for me to climb in & out of a car (that's why he didn't want me to drive). I said, "If you will pump the gas, I'll stop." but he can't do the credit card and I have no cash. So my tank is at 1/4 (slightly less now) which is completely unacceptable. The tanks on my parents' vehicles aren't even allowed to get to HALF. (I noticed that on vacation but thought it was an abberation--I guess not.)
So now I've seen my father be paranoid about money ("did they take off the coupon?" "Put some of that money away, that's too much.") and gasoline, and my mom's purse and their coats being stolen in an almost-empty restaurant with no one even sitting near us.
I can't imagine his frustration when he can't talk, either. Because he knows. He says, "I can't talk right anymore" or "that's not right." We try to correct him gently, without making a big deal. It's not like he can learn from his mistakes, like a person learning a new language. He's forgetting his only language.
But I've noticed that when he talks to my birds, and when he talks to the cats, that he talks okay. I wonder if he doesn't try as hard to be correct with them, and not being nervous about being right makes him better?
He also thinks my husband's name is Rick. I guess that's from his friend Rick, and Rick's son Rick. Too many Ricks, not enough Wills. He hasn't called Will "Rick" to his face, but when he refers to him and Will's not there, he calls him Rick. He also mixes up Joanne, my mother in law, with Janet, my mom's best friend.

48 "fix the tv"

I don't think my dad's getting better at all. His language skills are just dropping away. And he KNOWS it. This is horrible to watch, and too horrible to look away.

Sunday night when we were leaving my grandmother's, he came outside to ask us to fix the tv for him. Neither Will nor I knows anything about fixing TVs. But it became obvious he meant the computer. My mom's been having this weird problem where she can't get onto any secure sites on IE. And Netscape can't log onto ANY sites, secure or not.

While we were at Grandma's, my mom said she and Dad were going to come to our house and work in our yard in the morning. I suggested they stay for lunch and we'd make hotdogs and hamburgers, and I invited Grandma, who said her usual "my mornings are so bad" (but she never says HOW they are bad). She refused to eat the lovely pizza I'd made, saying she it would make her sick. Instead she had a salad with a single piece of bacon. Will, mom and I all tried to tell her she needs to eat more protein, that's why she's weak and dizzy. But she said she "can't" that she's got no appetite. But of course she ate an entire piece of cake for dessert.

The next morning, I go off to Walmart to get some Rustoleum for the birdcages and my car, and I called my mom to tell her there was a truck on route 5 being loaded for Katrina victims. I bought 3 bags of stuff--baby food, baby washclothes, soup, kid's water with flourite--and dropped them off on my way home after checking out gas prices, which seem to be stablilizing at around $3.19 for "cheap" gas and $3.49 for expensive gas.

I was outside washing a birdcage when my parents drove up. I could hear them yelling at each other. Obviously not a good day. Because our neighbors have at least 7 vehicles (no lie) they had parked one of them in front of my house, and both our cars were already in the driveway plus I had set up a bird cage washing station in the driveway. But my mother wanted to park in the driveway, and she wanted to back in, and no one likes to back into our driveway (it's very narrow). So that caused all kinds of commotion with my dad trying to tell her how to back up and me just standing there with my lovely new jet-sprayer in my hand hoping I wouldn't be run over.

My father comes up to me and says that he didn't know he was coming here (we had told him last night) and that he had other things do to, but he couldn't tell me what those things were. I am thinking that he wanted to go to the dump; my mom had put some branches in the back of the truck which she dragged to our brush pile behind the garage in the woods. His constant refrain is that nobody tells him anything. I think we need to start writing things down for him, with a date and time: Sunday night at 6:00: You are going to Bert's house tomorrow to work in the yard and eat hotdogs.

Our black cat, Zen, was outside on his leash being loveable, and when it was time to eat I also brought out Lance-bird (in his cage). My father sat right on the ground with a handful of potato chips to talk to the bird and try to get him to eat a chip (he doesn't like them; he takes a courtesy nibble and drops them). We had just finished eating when the phone rang and it was grandma; she was making the laborious 3 mile trip into Wallyworld. She hasn't been for years and it turns out she really didn't remember where we lived! But she found it okay.

During our conversation, my father was just zoning out, so I asked him to go get Zen, who was way up by the garage. He said that Zen doesn't like to be picked up and scratched and bit him. Zen LOVES to be picked up. He didn't want to go get the cat, and finally came back carrying him under his front paws, back paws dangling, way out in front of his body. It would have been funny if it wasn't so sad. Zen is a much nicer cat than his stupid Jasper.

After we finished painting the bird cage, my car, and the bulkhead to the basement, we went to my parents' house to fix the comptuer. Since Will wouldn't listen to any of my suggestions, I went upstairs to read and talk to my dad about butterflies. I noticed that he was talking to himself (or to the butterfly) and he sounded fine. But when Will fixed the computer (it was some stupid Norton setting) and came upstairs, my father said the butterfly was "swimming" in the garden. he's losing more words every day.

He said that his head and should hurt from the infusion and he doesn't want to be in the study anymore. My mom says he got the placebo even though she was convinced they'd give him the real stuff. She doesn't understand "double blind". Sigh.

47 Alzheimer's study visit & grandma

I had to take a ride down to New Haven last night to help my mom find the specific place at Yale New Haven Hospital where my dad had to go (today) for his first "infusion" of the experimental "vaccine" against plaque. So they are there right now; I believe it's an 8 hour thing the first time. Whew.

It's so frustrating to be around him; I can only imagine how frustrating it is to BE him. He is becoming more and more aware of his shortcomings, and he beats himself up about them.

I came by after work for supper. Basically my father was like, "why is she here?" and my mother explained (again) that she had to go to New Haven to figure out how to get to the hospital. He immediately freaked out "you can't go to New Haven tonight! Why didn't you go during the day?" (not so coherently). I explained that I worked until 5 so I couldn't go during the day, and my mom didn't want to go alone (basically going with my dad would be the same as going alone, since he wouldn't be able to help her with directions and the map). He was resentful that my mom gave me the leftovers to take home to Will (who's back in school, 4 nights a week as of this week). He refused to come with us to New Haven.

It ended up being really easy to find. Just a bunch of lefts off the highway, and there's valet parking. The whole trip there and back took hardly more than half an hour; my father was astonished at how quickly we came back. (There was no traffic at exit 1 which was why it was so quick).

My mom's been to at least 1 other office visit for the study. She hasn't asked me to go since they made it clear at our first meeting that I wasn't needed or wanted. Of course my mom can't remember half the stuff she needs to ask them or tell them, but whatever.

My grandmother is being desperate for attention and it's really stressing my mom. Since we've come back from vacation she's asked to go to the hospital 3x. She's got nothing wrong with her. She claims to have liver cancer (like her husband died from) and says she wants to die. So far, she's had an anxiety attack and some gas pains. That's it. No cancer. No internal bleeding. No heart attack. No stroke. (these are the things she claims to have had). I love my grandmother but it seems clear to me that she's doing it for attention. While we were away, she was fine. My mother thinks Grandma's back in her depression again, like a few years ago. She is at her wits' end. She has even suggested taking my grandmother into her house, but then grandma wouldn't be able to go to the senior center, which is her only activity...or my mom would have to drive her there every day, another stress. And to her daily church service. She won't drive herself hardly anywhere, just church and grocery shopping. I have more hours now at work, and I really need the money, so there's no way I can be a grandma chauffer. (however you spell it).

46 vacation

For the first time since I was 17, I went on vacation with my parents. We had separate rooms, but shared a car. My father wanted to bring two cars. Not with gas at $2.90 a gallon, I don't think so!
My dad is a total fussbudget. If he didn't have AD I would probably want to smack him. When he starts going on and on about something and we can't even figure out what the hell he's talking about, I start to understand elder abuse. How my mom puts up with it all day, every day, I don't know. Especially now that she's lost her job and she's home with him 24/7.
He fusses about the car hitting potholes. About trucks being too close on the highway (on the side, in the back). About his "baby," the stupid cat, back at home at the pet lodge. That he doesn't know where he is or that he hasn't been to this place before, or he doesn't recognize the foods on the menu, or that his soda is diet and not regular. I am a fussy eater but if I ever get as bad as him, shoot me. Really. He has to pick through his food like a monkey looking for nits (the term for that, which I just learned, is "fossicking"), discarding all the bits he thinks are "fat" (including the grill marks on chicken breast!). After every meal, he's got a napkin or small plate piled high with food that he thinks is fat.
He couldn't understand why we didn't take the car to go whale watching (20 miles out in the Atlantic). He hated taking the ferry to P-town and complained "no one told me it would be like this" (we told him, he just can't remember). He ordered raspberry ice cream and because it was pink and not purple he insisted it was strawberry even after my mom ate it and said it was totally raspberry. He wouldn't come in the pool with me and my husband. He gave nice shells that he'd found away to strangers on the beach but wouldn't let me have any (my mom snitched one for us once we were home).
And the damn cat. "My baby could be dead, the cat could be dead"-- he just wanted to go home to that pain in the butt cat. (And ironically, when we got home, it was one of my pets that had died; one of my birds. :( )
He had a fit every time my mother paid for something. There'd be a bill for $64 and she'd pull out 4 twenties and he'd say "Put some of that money back, that's too much!" He fussed every time she paid for anything, looking at the bill and complaining about what it cost. He constantly wanted to put gas into the car. I am a person who puts gas into my car when the red light comes on. Isn't that what the red light is for? He puts gas in the car if it's NEARING HALF. I can't imagine. I fill my car up about every 10 days; he must go several times a week.
He freaks out about the seatbelts in the back seat. he doesn't say anything if I don't wear a seatbelt in the back, but if he's in the back, he has to have the seatbelt on. Even if we had to unload the car so we could move the seat and find the belt, that's what he would want.
Speaking of unloading the car, luggage for 4 people for 5 days fills the back of a mid-size SUV. That's just a fact. it's stacked higher than the back seat back. He fussed about that, wanting to get out of the car and direct traffic whenever we had to back out of a parking space with the car full.
And fussing is the word. He frets, complains, fidgets. It really is like having a child. All his food has to be ordered special for him. He wouldn't eat his shrimp cocktail because the shrimp came in the sauce, so that meant the sauce wasn't right. The next night I told them to put the sauce separate and he ate them happily and thought the sauce was yummy. In a chain restaurant, he was unhappy because his favorite meal there now comes in a large upright bowl instead of a spread-out plate, so that means they changed it and he doens't like it as much. He stops strangers to talk to them about the baseball game, and then has incomprehensible conversations with them, and we have to apologise and explain he has AD and drag him off.
It's frustrating and sad.

45 alzheimer's study & other news

Mayatime: 12.19.12.8.10 11 Oc 8 Xul (manifestation portal/burner)

Yesterday we went for the first of many visits to Yale for the new Alzhiemer's study. I managed to get permission to skip lunch and leave work an hour early to go with my parents. Just as I was leaving work I saw that my lunch bag had leaked watermelon juice everywhere and I had to pause to clean it up so fruit flies didn't come. I was just a block from my parents house when my cell phone rang. It was buried in my purse and I couldn't locate it easily, and I was on Route 5 which takes all one's concentration, so I just let it go to voice mail. When I dug it out it was my parents' number. I called, no answer. (this was maybe 30 seconds later) I pull onto my parents' street and they are DRIVING AWAY without me. It was 2:18 and my mom had said we'd leave at 2:30.
But as soon as I parked my car and got into theirs I found out why she was so flustered. She lost her job yesterday morning. Now she has no insurance to pay the $300+ a month for dad's medicine. This country SUCKS.
We ended up parking in the wrong spot in New Haven (I did not see another driveway, but they claim it was there) so we couldn't get the parking validated. Such a little thing, $6 for parking, but when you've just lost your job everything looks huge.
We were at the clinic office for 2 hours. They did a physical on my dad, had us in a conference room while they explained the study and had my parents sign lots of papers. I wanted (want) to be involved but I was totally superfluous. They only want ONE contact and it has to be the person who sees him the most--so that's my mom. I can go with them, but I can't offer my opinions. I'm pretty useless apparently.
The treatments are via injection (IV) and I think he gets one every 2-3 months, for 27 months (9 injections). The first two treatments are SIX HOURS long. One hour for the IV drip and 5 hours to see if he has an allergic reaction. The rest are only 2-3 hours long. He has to get lots of MRI's and cognitive tests (obviously).
It's double blind, and a 50% chance my dad will get the real medicine and not water. He doesn't have to go off his existing medicine. This is supposed to be a treatment that dissolves the amyloid plaque and might even stop it from being re-formed. Not sure if it's permanent, that's one of the things I forgot to ask.
The psychologist noticed his extreme language difficulty as he tried to tell one of his famous stories and it just fell flat. I told her how he's always been a story kind of guy, even when I was little he made shadow puppets (Jerry Giraffe) and told stories about them. She had him read out loud, and he'd get the words wrong, and sometimes he'd know it, and say the word two or three time and shake his head and say "that's not it, that's not right, I can't talk right anymore" and other times he wouldn't notice he said it wrong. He kept saying "place-boo" instead of "pla-cee-bo" (placebo), but he probably never heard or said that word before in his life.
They asked a lot of questions: did he ever do the laundry? Does he still do it? Does he wash the dishes? Are they clean? Does he know his way around the neighborhood? Can he still drive? Does he use the stove? Can he prepare food? They took my mom into another room and asked her a lot of questions without me. They took my dad away and asked him more questions (good luck with that!), and had him pee into the cup, and took blood.
I understand that it's all for benchmarking. The psychiatrist did listen to my opinions while I was there in the conference room but in all other things I was excluded.

44 great news!

Unfortunately I can't find any articles online to link to in reference, but last week in the New Haven Register, there was an article on a new study being offered at Yale University on Alzheimer's. (This is apparently the same vaccine, but several years ago.) My mother wanted me to call and see if my dad would be a candidate, so I did. The first step was just to leave my name and number. A few days later someone called back and asked a lot of questions. Of course, not the questions I had prepared the answers to, like which medicines does he take and how much of each. No, how tall is my dad? Umm. How much does he weigh? Umm. (I guessed, and my mom said I was pretty close.) For how many years has he taken multi-vitamins? What brand? umm. Then she asked "What does he do?" I kind of laughed. "He's got Alzhiemer's. He's retired." "No, what did he used to do?" Oh, that's easy-sell cars. And so on. I asked if he seemed good for that study and she said no, but he'd probably be able to get into a different AD study at Yale.
Friday my mom had a 1/2 day at work because of the corporate picnic, which she didn't want to go to, so when we did our usual Friday afternoon lunch, I went to the house to pick her up and my dad came along. She said that Yale had just called and accepted my dad into the vaccine study!
I explained the concept of a placebo to her--that depending on how the study is set up, at least 1/2 of the people get a placebo, which is a fake pill (or, in this case, a fake injection). Then some people may get a lesser dose of the medicine, and others the full dose. The study is double-blind which means neither the doctors or the patients know who is getting what.
Her response was, "well, Daddy's young and in good health so they'll give him the real vaccine."
Double blind. No one knows.
"Oh, they know."
I can I argue with such complacency?
And she thinks this could be a complete cure. Not so.
This drug removes the plaque from the brain. (According to the CNN article I linked to above, it does NOT remove the tangles.) It does not regenerate dead/lost cells. I can see that it would halt the disease in its tracks depending on how it really works (the disease, not the drug). If the tangles and plaque CAUSE the disease, the injections will be a great help. If they are only SYMPTOMS, it might not help much at all. Lost memories could not be regained, but we could hope that new memories could be made to replace them and no other memories would be lost. So what if my dad forgot someone's name? If he's re-introduced to that person, he'll remember her now. Not sure what would happen with things like math ability--could math be retaught the way a child learns, or is the capacity for doing math just gone? I don't know a lot about how the brain works (although I know a hell of a lot more than a did just over a year ago.)
And yeah, the 1 year anniversary of my dad's diagnosis just passed. So I did 43 entries in a year, or an average of one every 8 days. Not bad.
One of the best things about this study, in my opinion, is that he doesn't have to stop taking his existing medicines. I worried that he would get into a study, have to discontinue the medicines that were clearly helping him and slowing down the disease, and he'd get the placebo and lose everything we'd worked to keep, and gain nothing.
The bad thing about this study is that the previous study was halted because the vaccine gave people encephalitis. WebMD says this about encepahalitis:
Encephalitis is an inflammation of the brain that is usually the result of a viral infection. When the brain becomes inflamed—swollen and irritated—normal blood flow to the brain is altered,leading to symptoms such as confusion, fever, and severe headache.
Great. Just what my dad needs. More confusion. Apparently encephaltitis can also lead to death. My mom skipped over that part of the article obviously. I'd think that if they are offering it again they've fixed that part. I hope.

43 father's day gift

I don't think I'll ever enjoy Father's Day again. It was the day after father's day last year, on the summer solstice, that my dad was formally diagnosed with Alzheimer's. So we've gone through a whole turn of the wheel almost, and it will never get any better. How's that for cheerful?
Well, my fish died last night, I can be sad can't I? Yeah, my betta. That means all my original fish are dead. I had the betta and the sucker fish. The sucker only lived a couple of days. I got 2 albino cory-fish, one of those died, and I got another albino cory and a green cory. I have the 3 cory-fish left.
So for Father's Day my dad wanted another dinner-and-a-movie night. We did that for my mom's birthday in April and he enjoyed it. So we went to the Pacific Buffet, where he ate not a single vegetable-just plates and plates of shrimp and clams and that damn stinky "red sauce" as he calls it (cocktail sauce). He insists on keeping a "scraps" plate which he will not allow the waitress to take, filled with putrid shells and shrimp peelings, and of course it was right in front of me. I have to assume his nose has stopped working because everything he enjoys eating is especially odorous--salmon, for instance, and clams over linguini. Or maybe it's just that he likes seafood, which I hate and detest and am completely repelled and disgusted by.
We went to see Mr & Mrs Smith, which was a fun movie. The plot got a little silly in spots, but it was entertaining, and Angelina Jolie and Brad Pitt have good chemistry together. (Not like the young couple in The Notebook, who had zero chemistry.) Ate lots of popcorn. It was pretty crowded for a Tuesday. (The theater has matinee pricing on Tuesday night, so that's when we usually go.)
When we got home, I fed the fish. The betta was hanging out in the front corner of the tank near the top so I gave him a betta pellet (he doesn't like--DIDN'T LIKE--betta food, he always ate the catfish food from the bottom) but he ignored it and went to eat on the bottom with the cory fish. This morning he was dead, all the color leached from him, his eyes staring. :(

42 adventures with Grandma

Mayatime: 12.19.12.6.9 9 Muluc 7 Zotz
06-10-2005

This morning I had barely woken up when the phone rang (7:15). A woman's voice said "Willy?" and I said "no" and before I could clarify that he was at work, she said "I have the wrong number" and hung up. The caller ID said it was the hospital. I called back and got a switchboard. I called my husband at work and asked if there was a woman missing who might have called him at home and he said no. I went to start my day, reading the news, my email, making bird food, etc. My cell phone rang. It was my mom's cell phone calling. My grandma was in the hospital with a stroke, and yes, she had hung up on me when she called earlier. (Stress, confusion, I don't know--she said she didn't recognize my voice!)
I called my husband again and he said he would come home and take me. I was surprised because he has this "thing" about grandmothers in the hospital ever since he had to be there when they pulled the plug on one of his grandmas about 12 years ago. I called in to work and fed the birds and we went.
My mother said that my grandma had called her at 4:30 saying she couldn't breathe and was calling 911. The police officer who responded with the ambulance called my mom (her number's posted by my grandma's phone) and my mom met the ambulance at the hospital. My grandmother couldn't remember calling my mom or 911, didn't know where she was, but knew the President's name and other things like that which they ask. They did a CAT scan and a chest x-ray and left her in the cubicle. When I got there just before 8:00 she had just come back from the CAT scan. She knew who I was but she seemed very weak. She was breathing harshly like I did last year when I had the terrible bronchitis.
It's terrible to just sit there and talk around someone like that, but she wasn't really responding, kind of dozing off or zoning out. My mom had left my dad at home. She called him to ask him to hang out some laundry and that took about 5 minutes to explain. I sat with my hands on my grandma's legs giving her Reiki. She took it in a gentle warm flow. (my hands are still on even as I write this at 11:00)
Apparently, I'm not sure when, my grandmother felt ill and started to vomit, and instead of vomiting (she said it was all bile, guess it runs in the family, I'm very bile-y too) she swallowed it and it went into her lungs. The ambulance people were very concerned over this (and eventually when we saw a doctor, so was he).
My husband went to get some breakfast (there's a Dunkin Donuts in the hospital) and while he was gone I asked my mom about her cousin, the one who fell in the septic tank. My grandmother started contributing to the conversation saying that the woman is 76, she's my grandpa's niece, and the shoulder she broke was the one she had polio in, and giving more details about what happened. After that she seemed okay. Will went backt to DD and got her a coffee which she drank through a straw. Then it was just sit around and wait. No one came by.
Someone was interviewing a guy out in the hall about hearing voices: "Do you hear the voices all the time? Did you tell the people you live with that you hear voices? Do you hear them right now? Is someone bothering you where you live? Who is it? Is it a staff person or another patient?"
Finally I went and talked to a nurse because my grandmother was getting terrible leg cramps and charley horses in her feet and calves and they got so bad I couldn't rub them away. I was holding her feet vertically because it seemed like the droop was causing the cramps, and that seemed to help. A few minutes later a doctor came by and recognized me from when my husband had been in the emergency room about 6 years ago--he remembered my eyes. He said my grandmother's tests were all normal for her age and she could go home if she wanted to, but if she started coughing or having fluid in her lungs she would have to be admitted for pneumonia.
So after a long wait for someone to come by and remove her IV shunt (which wasn't attached to anything) we were able to take her home, after much fussing over her lack of sunglasses and keys and her cane.
She's home now, and I guess she's going to be okay. But it was scary. My mom was freaking out--there's no way she could deal with my grandmother after a stroke and take care of my dad. She would have had to put my grandmother into a home, and that would be terrible. Not that it still might not happen, but not today.
Ometeotl. Back to the Order of the Feathered Serpent blog, if that's where you came from.

41 cat attacked!

Apparently a couple of days ago, a woodpecker attacked Jasper and injured his thick stubborn skull.
My mother said Jasper was outside under the tree, and the woodpecker was in the tree. (I don't know if it was a little black and white woodpecker like we have at our house in the Circle, or the bigger red one.) And then Jasper was at the door, crying, with his head bloody.
The cat hates me, but I am fond of him sometimes. He's cute. And my father adores him enough for three people. And I hate to see any animal injured.
I talked to my mom today and she said it scabbed over and it's not infected. I guess it didn't penetrate into his skull. She now thinks it wasn't the woodpecker at all, but a blue jay. Blue jays are really mean; I know they kill baby birds of other species, so perhaps one would attack a cat (or defend itself against a cat who tried to attack it).
Something terrible happened to my mom's cousin. She was out in her yard and a sinkhole opened into her septic tank; she fell in and was there for who knows how long. A neighboring child heard her calling for help but the child's parents didn't believe her at first. Apparently she became hysterical and forced her parents to check it out, and they found Theresa down in the filth with a broken shoulder. Other than the shoulder I guess she's okay. I haven't seen her in many years but I remember her being kind to me when I was a child, and inviting me to sleep over (which I never did).
Something terrible also happened to my husband's cousin. The story is a little confusing. He and his friend were in an SUV in a Jack in the Box drive through line in Las Vegas, where he lives. The car in front of them got the wrong order and an arguement ensued. Andy's friend beeped at the car to get them to move, and somehow the driver of that car beat Andy up, breaking his facial bones, and in all the confusion Andy's friend ran him over. Andy's friend was arrested for being drunk. Andy has all kinds of injuries to his face and feet.
My cousin better be careful; things happen in 3's.

40 vacation update

40

Not really much to report on the Dad situation. He is resigned to using his vehicle when we go on vacation, but not to letting my husband drive. So my mom and I will have to do all the driving. I hate driving. Oh well.
We are hoping he will agree to stay for the whole week-last year he came back after 2 days. If he wants to come back, Will & I are just going to rent a car and stay. We haven't been on vacation in over a year and we're not coming back early. The only time I ever came back early from a vacation in my life is when my grandma fell in Provincetown and broke her ankle. I remember how pissed off my grandfather was, because he was having a good time. (He wasn't mad at my grandmother, but at the situation.)
He was very upset that I was going away over Memorial day weekend (to see Tlakaelel-see my other blog.) That meant I wouldn't come over on Friday night to play cards and eat popcorn, and I wouldn't be at Grandma's on Sunday. I did stop by one night that week, because a high wind had hurt many of my plants and I needed new pots and potting soil, and he was so sad that he wouldn't see me that I finagled my mom into having a memorial day "picnic" on Monday night when I came back. I ended up leaving Chaplin earlier than I had planned, so I had plenty of time to take a shower before I went there, which was good because my mom's best friend was there too. She is a sweet lady. Her boyfriend (I always thought it was her husband!) died last summer and she's been sad and lonely so my mom's been spending a lot of extra time with her.
Her name is Janet and my mother-in-law's name is Joanne and I know my dad confuses their names, but when he sees them he knows who is who (that Janet is my mom's friend and Joanne my husband's mom) but not which name goes with which lady. Ah, what's more important? A name or the relationship? And I never knew my husband hadn't met Janet before, so that was nice too.
We are going to bring all our cards, including Waterworks, on vacation. I am going to pop lots and lots of my special popcorn, but with no butter. There's a microwave in the breakfast room we can use to melt the butter for each night's bowl of popcorn.
I am looking forward to it.

39: green playing cards

Every week when we play cards, my dad bemoans that the card backs are blue and red. "Why aren't there green cards?" he asks, over and over.
So like a good little daughter, I found some green cards. The Bellagio in Las Vegas has green & brown decks. A guy on E-bay was selling them as a a pair, one green and one brown. He agreed to send me two green decks instead. He's from Canada, a foreign hostile country far from here, so clearly that's why it took THREE WEEKS for the package to arrive. Those Canadians--who do they think they are?
The cards came on Friday. I had to buy a gift for a baby christening, so I made sure the tissue I got was green and I wrapped the decks up and gave them to my dad.
He was underwhelmed.
Reminded me of the dreadfully expensive Far Side book I got him last year, which is still in its wrapper under the coffee table.
He wants to play war where we each have our own deck of a different color. He doesn't understand that the decks won't stay that way, or that his green special Bellagio decks don't match the standard red and blue decks we were playing with.
Sigh.
My mom said he's hardly driving at all. If he goes to "work" he's been walking--it's only down the hill and across the street. The street is route 5, however. Hopefully no one will run him over. Although some days, it seems like that would be a blessing.

38: more on the accident

Mayatime: 12.19.12.4.14 13 Ix 12 Uo May 6, 2005

I have a few more details about my father's accident. He's never been in a car accident before, EVER in his life. That's pretty impressive and I wish I could say the same. He said he looked, there were no cars, and he pulled out, and there was a car, and he hit it. Then he panicked and just kept going.

I have to wonder if the "car from no where" ran a stop sign or something. I live 2 houses from an intersection, and I always look before I back out, but EVERYONE runs the stop sign, so one moment no one is there and the next moment some idiot comes barreling down the hill (it's REALLY steep) and flew around the corner: right behind my backing-out car!

My father just continued to his destination, which is where the cops caught up to him. The guy who works there came out and defended my dad (how nice of him), who is a regular customer. My father gave the cops a card with my mom's number at work, and they called her. I guess they didn't believe he's got Alzheimer's, even though he's got the Safe Return bracelet on. So many people don't know what it's really like. I didn't...even a year ago I had no clue what it really was. We learn the hard way sometimes.

Evidently, when I came over on Tuesday, my father had it in his head that my mother called me and told me to come over and yell at him. That's why he wouldn't look at me or talk to me. I would NOT yell at my mentally-ill father. If my husband had done it, yeah I'd yell and kick his butt too. But it's not my dad's fault. His thinking is impaired. Aliens have stolen his brain. Damn them. Damn them to whatever Hell they believe in.

37: the accident

This is a first, to post here first instead of my regular website.

Yesterday my dad got into a car accident. I found out when I went over there for something else yesterday afternoon. My mom didn't give me a lot of details. She just said that he hit someone (car, I assume, not pedestrian) and didn't know it and kept driving. The person chased him, called the cops. The cops wanted to take his license on the spot. They called my mom at work. She went there; don't know what she said but they didn't take his license.

He was folding the laundry in the dining room while my mother and I were working on something in the kitchen. I realized he hadn't come outside to greet me, hadn't said hello, so I went over to the counter between the rooms and said "Hi Dad, you didn't say hello to me yet." He barely glanced up, said hello dutifully, and put his head back down.

My mother and I finished what we were working on and I had something to drink. I went to sit in the living room and harass the fatherbiter cat. My parents came in and sat on the other couch, and the evil cat decamped to go sit with them. My father just sat with his head down. He wouldn't talk to me or look at me. He was so sad. I just wanted to cry. I was talking to my mother about the break-in at my house on Monday and he didn't respond at all. Usually he'd be all heated up, saying he'd go kick the person's ass, etc. (He's totally non-violent, he just likes to say things like that.)

for more info on the break-in, see my other blog: www.ofsinitiate.blogspot.com.

36: sad BBC story about dementia

Mayatime: 12.19.12.4.6 5 Cimi 4 Uo April 28, 2005

I just read this story on the BBC website and it broke my heart. I'm sitting here sobbing. I know the link will go away so here's the whole story.

Link: http://news.bbc.co.uk/1/hi/scotland/4485827.stm (has a picture of their yard, pretty boring)

Story:

BBC NEWS

Church elder smothered sick wife

A 80-year-old church elder who smothered his wife of more than 50 years as he struggled to cope with her dementia has been admonished.

The High Court in Glasgow heard that Kenneth Edge, from Grangemouth near Falkirk, was "severely depressed" and could not come to court.

Judge Lady Smith took the unusual step of dealing with Edge in his absence.

Edge earlier admitted culpable homicide by smothering his wife Winifred, 85, with a pillow in March 2003.

His doctor took the view it would be "severely detrimental" for him to come to court.

Lady Smith said: "In the circumstances I am prepared to admonish him in his absence. There seems no point in continuing this case to try to get him to court."

'Loving marriage'

The judge heard that Mrs Edge, a former Sunday school teacher, had been married to her husband for 55 years.

They had no children but shared a variety of interests during a "long and loving marriage".

When his wife became ill with senile dementia Edge began to suffer blackouts from the pressure of taking care of her at their house on Grangemouth's Cedar Street.

The court heard that Mrs Edge had not been sleeping and her husband was trying to remain alert at night to help her.

On the night she died, Mrs Edge woke and began waving and thrashing her arms around.

Confessed to police

Her husband put a pillow over her face and Mrs Edge offered little or no resistance.

When he realised what he had done Edge phoned the police and confessed.

At a hearing 18 months ago, Lady Smith told Mr Edge: "It is perfectly plain that you have punished, and will continue to punish, yourself because you have removed from your life your lifetime partner whom you have loved and cared for.

"You did so in circumstances precipitated by the enormous stresses and strains you had been put under as you tried to care for a woman who ceased to be the woman you married, and whom you had known and loved for more than 50 years."

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/scotland/4485827.stm

Published: 2005/04/26 12:11:58 GMT

© BBC MMV

35: vet visits, green playing cards, depressed cats, happy fish

Mayatime: 12.19.12.3.17 9 Caban 15 Pop

Last week my dad was supposed to help me take two of my birds to the vet. Three of my six birds have epilepsy, and they have seizures when I take them out of the house or in the car or basically anywhere. I called him the night before to remind him to be at my house at 4:00; the appointment was for 4:30. Then I called him at 3:40 and said, "Come over now. I'll see you in 15 minutes." I went outside with one of the cats and cleaned the lawn furniture, watching the cars go by. None of them were my father. Eventually I went inside and saw to my horror it was 4:08. It takes 20 minutes to get to the vet, and no dad! I called my parents' house and asked my mom when my father had left. She replied that he was sitting there waiting for me to pick him up! I did not have time to pick him and that nullifies the whole point of having someone there to shut and open doors for me while I carry the birds to the car. I was kind of angry. It's not like I depended on his memory--I called and said "come over now" how much more explicit can I be? Apparently he chose to hear "I am coming over to get you."
I was 2 minutes late getting to the vet, but they didn't say anything. The vet who hates my birds was there (she said flat out after one of them had a seizure in her exam room that she didn't want to work on them ever again) and they asked if I wanted her or the other doctor. I said the other doctor. Then when I came out and needed another appointment for the next two birds, they tried to get me to go to her again. I didn't want to say "She hates my birds" because that sounds mean, but she's the one who refused to work on them.
I still go over my parents' house once or twice a week to play cards. Now we play War. Since there's three of us, we use 2 decks. I bought a 2 pack of decks, a red deck and a blue deck. Every time we play, my father says, "Wouldn't it be nice if we had a green deck?" (That's not what he SAYS, it's what he MEANS.) He loves green. I shopped around and found that the Bellagio in Las Vegas has green decks, and a found a guy who was selling used Bellagio decks in pairs of green and brown, and he agreed to sell me a pair of green decks. One night while we were playing cards, we were talking about Patches, our black and white kitty I gave to my father for Father's day many years ago. She died right after I gave my parents Jasper. My mother says she died of a broken heart because she missed the dog so much (they were puppy and kitten together and best friends)--after Alf died, whenever a neighborhood dog barked, Patches would rush to the window to see if it was Alf. I should scan in some pictures of them and put them here. So my father asked if a cat would miss a person when he died, specifically, if Jasper will miss him when he dies. It was a very sad moment. Then my father decided, on his own, that Jasper would miss my mother more if she died than he would miss my father. (Probably true, Jasper adores my mother and tolerates my father, who insists on picking him up constantly and carrying him around, which he hates.)
My mother keeps talking about getting another cat, but my father thinks Jasper would be jealous. In reality, what would happen is, my father would transfer his adoration to the new cat. I don't ever remember anyone interacting with Nippy, the cat we had when I was born, but once we got Streaker, the first Siamese cat, no one except me ever paid attention to poor old Nippy, who died when I was 15 and she was 16 (I guess she died-she was sick and never came home). Then when we got Alf, Streaker was pushed aside. He died of feline aids, and I got my father Patches, and although he still liked the dog, Patches became his favorite. And so on. I guess I should be glad I'm an only child, or I'd probably be ignored too in favor of my younger sibling. (Can't even imagine having a sibling. I wonder what it's like?)
I had to buy another fish tank. The old one I had the betta and his catfish friends in was starting to crack; every day there were more cracks and/or the existing cracks were larger. So my betta is extremely spoiled now. I bought him from one of those little round bowls where he barely had room to turn around, and put him in a 2 gallon tank with a filter, 2 plants and 2 friends, to his utter astonishment. Now he's in a FIVE gallon tank with 5 plants, two rocks, a stone monster, and 2 friends. Spoiled, spoiled, spoiled. I've spent about $100 to sustain this $3 fish. It was pretty funny; I set up the new tank right next to the old one. I took the plants and the stone monster out of the old tank and put in the new, along with the heater. So the 2 gallon tank was bare except for the rocks and the 3 fish. The betta would swim to the glass and press up against it, looking into the next tank where his plants were. Then he'd swim to the front of the tank and look at me as if to say, "why can't I get to the plants?" It took a whole day to get the new tank warm enough to transfer them. As soon as I did, the betta went right into the plants. The little fish still zoom around and then nap. At least someone in my life is happy!

34 playing War, cape cod, fish, depression

03-28-04

Mayatime: 12.19.12.2.15 13 Men 18 Cumhu

It’s been a long time since I wrote. I’ve been letting the days blend together. I think I mentioned that my dad’s new passion is playing cards. He constantly wants to know when I’m coming over to play cards with him. I picked up a pair of decks (a red and a blue) and we don’t play Solitaire anymore (“patience” some people call it)—we play War. War is easy; I remember my grandpa teaching me to play it when I was a child and couldn’t even understand that some cards were higher than others (I don’t think I could even read yet!). We play with the double deck, me, dad & mom, or sometimes my husband comes over too. My dad’s pretty good at figuring out who won each hand. We had an amazing war on Friday night: a 4 way ace war. I forgot who won that hand, I think my mother did.

My mom also remembered an old card game we used to play, called Waterworks. I had tried to get it at a toy store, but they said don’t make it anymore. (Not true: you can follow the link to Amazon, but it seems like a cheesier version; I bought the old version from the 1970's with real metal wrenches and a fun plastic bathtub card tray.) I found a couple of incomplete sets on Ebay so I picked them up for $3 and $4 each. It was as fun as mom & I remembered, but my father hated it. He refuses to play—he only wants to play War or Solitaire. My grandmother likes it too, so we play with her.

My parents are taking my husband and me on vacation with them this summer, just up to Plymouth, Massachusetts (pilgrim town) where they like to go, where they stay at a lovely hotel. I used to like to go too, and then I went to Grand Cayman. Sorry, pilgrims, pirates win! Hopefully there will be nice weather this year; last year it rained and my parents came right home, which was good because their damn cat was pissing on my loveseat. He also pooped there. My cats have been known to pee in inappropriate places, but only ONCE in 11 years have they pooped outside the box—and the cat had been accidentally locked in the bedroom all day, it wasn’t his fault. Jasper had no excuse except that he’s an evil little beast. Actually he’s not evil, he’s rather cute, but he doesn’t like me sometimes, and it’s very odd that once in a while he runs to me purring and talking, and the next time he flees for his life when he sees me. Cat insanity.

Since I’ve written last, I acquired some fish. I got a nice turquoise betta, and a pleco suckerfish. The pleco only lived for a couple of days, which everyone seems to think is funny because the fish warranty from that pet store is only 24 hours. The betta seemed lonely to me, so a week or so later I picked up a pair of baby albino cory catfish. They are adorable, they race all around the tank, and the betta seems to like them: when they are resting he floats right above them. It’s just a little tank, about 2 gallons, perfect to have on the bookshelf in the living room. I got a micro-heater for it (I think the pleco died from the water being too cold—I also never saw him eat) and also a light (not sure what happened to the light which came with the tank—the light, the pump, the tubing, the net—all that wasn’t with the tank when I found it again)—I got an adjustable goose-neck lamp which I can always use when I don’t have fish anymore. I had a light-box (for crystals) upside down on the cover, but it felt unsafe. This way the light doesn’t touch the tank at all. It does raise the temperature a little, so it’s only on when we’re home because I don’t want to cook the fish! I leave the blinds open so they get sunlight.

I’ve been really depressed, between this whole dad-thing, and some health problems of my own, and my low-paying job—one of the reasons I hadn’t written in a while. I haven’t felt like writing ANYTHING, haven’t even gone to the NaNoWriMo meetings every month.

I am in therapy—which always seems so self-indulgent to me, and I’m hoping that talking and crying every week to a sympathetic ear is what I need. The insurance doesn’t pay so I have to work off my bill in the office there—more time taken away from “me” –like cleaning my house, going to this dead-end job, and playing video games.

I’ve mastered Zuma, [requires IE, sorry] which is Aztec-themed, and my mother introduced me to Jewel Quest, which is Mayan-themed, and I’m battling my way past cursed masks to get the jewels for the various gods of each level—more frustrating than Zuma, and I’ll probably never master it completely. And yes, I have the paid download versions of them, but the links are to the free online versions. If you download the paid version of Jewel Quest, I have the cheat codes if you’re interested.

33: games & classes &OFS

02-15-05
mayatime 12.19.11.18.14 11 Ix 17 Pax

I haven’t written about my dad for a while. Not much has changed. I’ve been trying to see my dad a few times a week when I can. He likes to play Solitaire. Originally we were playing on the computer, but he had a hard time seeing some of the moves. Like if there was a red ten by itself, and two columns over there was a black nine with a red eight and a black seven, he couldn’t see the black nine well enough to recognize the move.

Solitaire, which most know as a solitary game (hence the name) is a family affair with me and my parents (and once, after a lovely turkey dinner, my husband).
And we still can’t beat the damn computer. My father, even pre-Alzheimer’s, could not understand how to use the mouse.
“Double click it, dad.”
“Okay.”
Click. Long pause. Click.
“No, quick. Click-click.”
Click. Click.
“No, clickclick really fast!” Click. Click.
Even with the setting turned to most sensitive to long delays between clicks, he could not click fast enough.

I think he’s forgotten the mouse exists. He did not know I was moving the cards. He’d say “hurry up before he takes it away” (he=the guy inside the computer).If I clicked on a wrong card, the guy (a recorded voice, you understand) said funny things like “you can’t click there” “not the foundation cards” “you can’t do anything with the foundation cards” and best of all, “don’t you know the rules?”

Because I am a smart-ass, I liked to click on the wrong cards to make the computer guy “angry.” My father thought a real person was scolding me and wants to know where he lives so he can go beat the guy up.

I found a pack of real cards (wow what a rarity) and we started playing on the kitchen table. My mom doesn’t allow me to cheat. I think I should cheat so my dad can win once in a while. He gets angry when we lose all the time.

He also gets angry when he can’t see the move. Basically I flip the cards until I see a move, and then I say “there’s two moves” or however many I see. He ALWAYS sees the aces. Sometimes no matter what, he doesn’t see the move. When we show him, he gets really angry, swearing at himself and beating himself in the head. It’s very upsetting. I try to tell him the game is supposed to be FUN, not something to beat yourself up over. Whenever I leave there after playing Solitaire with him I cry all the way home.

Sometimes I have to go home the long way.

My mom introduced me to an addicting game on AOL and I found out it’s accessible through their web site. I have an AOL account; I don’t know if you have to have one to get to it.It’s called Jewel Quest. Basically it’s a lot like Bejeweled 2, which I play on MSN, but it’s got more of a plot. And it’s got Aztec imagery. I will play any game with Aztec imagery!(I LOVE LOVE LOVE Zuma).

For personal news, I was recently accepted as an initiate into the Order of the Feathered Serpent. It’s a 3-year program of shamanism, healing & self-improvement. My first “lesson” came yesterday-a fat book full of rituals to learn. Yippee!

My classes in Web Design started last night. I’m taking 3 this semester-HTML, Web Design & Photoshop. It’s really a one semester certification, but I didn’t want to take so many classes back-to-back like that, and one’s on Saturday interfering with my workshops.This one, the HTML one, is pretty easy so far. But I also have to take some classes in Flash animation and VB programming.Luckily my husband’s already been through the VB classes for his degree so he can help me and he has the books already too.

Mudras & Healing Techniques for Alzheimer's

Please go to my web site for them, they are simply too complex to post here (too many graphics & links, which is too much of a pain in the ass to do through blogspot)


ObsidianButterfly.com

32 loss of pronouns, lack of water,

01-11-2005

Maytime: 2 Cauac

I’ve been redesigning www.Obsidianbutterfly.com—the had a dad section will be next. I sent not one but TWO books off to publishers (yay) and both acknowledged receipt so the waiting begins (again, on one of them, as I sent the book to them last January and they never answered any of my follow-ups until NOVEMBER when they admitted they didn’t have the ms. (Nice, huh?) So I stayed angry for a month and then re-sent it.

My dad has refused to do the mudras and exercises I mentioned. That makes me sad, but it’s his choice. I have gotten permission from the person who gave them to me to post them here. Maybe they can help someone else.

The new thing I’ve noticed about my father is that he’s mixing up his pronouns. He might say “they called” when he means “she called” –actually pretty much I think “they/their” has become his only pronoun. I’ll have to pay attention when I see him this weekend.

I read a book about water which said that chronic dehydration can cause and worsen Alzheimer’s. All my dad drinks, ever, is Classic Coke. Not diet, not decaffeinated, not Pepsi (he will drink Pepsi in restaurants if we tell him it’s Classic Coke). I gave up drinking soda last month and I hardly miss it. But I don’t know how I’d get my dad to stop drinking it.

On the one hand, it’s like when my great-grandpa (maternal grandpa’s father) was dying of emphysema when I was 11. He wanted to have a cigar. The family figured, he’s dying already, give him his damn cigar. My father’s losing all pleasure in life, why make him give up his favorite drink? On the other hand, what if drinking adequate water really could help his mind? Isn’t that worth giving up the soda? I am going to see my mother later today. I wasn’t planning on seeing her so I haven’t got the water book with me. I can only wonder how bad he would be if he WASN’T on the medicine. And then I know I’m just whining again, so many people have parents and spouses who are so much worse than my dad. But this is my world, my pain.