125 death is all consuming

My mom and I finally met with an elder-care lawyer yesterday for advice on how to proceed with the inevitable; putting my dad in a home, having him die, what happens to the house and my parents' life savings.
It's not pretty.
I am so ANGRY about this. My parents worked hard their whole lives, saving money when they could, making their home nice (it's no mansion, but it's a decent place, bigger than mine), only to have everything consumed by this disease and the slow way it is killing my father. It's not fair. It's not right.
It's not about me, either. Yes, I did have it in the back of my head that some day my parents would die and I'd get their house, which I could sell for a nice chunk of change for my own retirement (given my mom's family's longevity, that's truer than you'd think--my grandma's still going at 89 and my mom's barely at retirement age). Of course that would be great, not that I ever want someone to die so I can get their stuff--that's just morbid. And my parents wanted me to have everything they worked for once it wasn't necessary to them anymore.
But that's all gone now. There will never be an inheritance for me. Just documents to sign, information put into my brain that I don't want to know. I don't want to make medical decisions for my parents, I don't want know anything about living wills and medical powers of attorney. I don't want to plan and pre-pay for my parents' funerals. I want to be an ostrich with my head in the sand. I don't want to be told that once I have these powers that I can't leave the country because if I'm not available the power that I don't want in the first place will be taken from me if there's an emergency while I'm gone, and my parents' wishes won't be respected if I'm not right there to force someone to listen. So this goddamn disease is not only stealing my father's brain and life, my mother's peace of mind and her home, but my experiences swimming with sting rays in Grand Cayman and climbing pyramids in Mexico.

The cost of Alzheimer's? Everything you ever owned, everything you ever thought you would get, and things you never even thought about.

124 Where does memory live?

Yesterday I stopped by my parents' house to talk to my mom about (FINALLY) contacting an elder-care lawyer to help her safeguard her money and home when my dad finally has to get put away. I brought ice cream. You would have thought I handed my dad a million dollars when I gave him that hideous purple sundae (black raspberry). He eats like a child, getting ice cream, whipped cream and hot fudge all over his face and not knowing enough to wipe it off. Plus the farts, oh the farts.
I had downloaded a trial game at home that I thought my mom would like, plus she's getting a weird error message on her computer, so we went downstairs for a while to try out the game and see if I could get the error (I couldn't). She told me she'd read about a study where rats with Alzheimer's could retrieve lost memories and make new ones.
I tried to explain about brain atrophy but she didn't want to hear it.
Someone posted a link on Yahoo Answers to an article which I guess is about the same study.
It starts out:
Mental stimulation and drug treatment may help people with brain ailments such as Alzheimer's disease regain seemingly lost memories.
Calling Alzheimer's a "brain ailment" is like calling .... oh, I can't even come up with a good analogy. An ailment is a cold, a stubbed toe, a headache. It's a minor inconvenience. "Having a bad day, dearie, oh yes, I've got a touch of the Alzheimer's you know, but I'll be right as rain tomorrow."
Scientists used two methods to reverse memory loss in mice with a condition like Alzheimer's -- placing them in sort of a rodent Disneyland to stimulate their brains, and also using a type of drug that encourages growth of brain nerve cells.
I thought brain cells couldn't regrow, only connections between neurons?
If apparently lost long-term memories could be retrieved, this suggested the memories had not been actually erased from the brain.
If the brain is atrophied, where are the lost memories being retrieved FROM?
The researchers used genetically engineered elderly mice in which they were able to activate a protein that triggered brain pathology very much like that of people with Alzheimer's, with atrophy and loss of nerve cells.

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I'm going to go off topic now, into metaphysics.
If you believe in some sort of god-spirit-soul-thing outside you, then I guess you can logically believe that something outside you can hold your memories. Like the Akashic Records, a grand place "out there" where every memory from every lifetime of every person is recorded. Since we can't hold all those memories in our little brains/bodies, they are stored elsewhere. (IMO, this is the true nature of God--all of our memories and thoughts and intent all working together.) If this is the case, than brains have very little to do with memory. They hold a form of short-term memory that's only good for this body--memories of this lifetime. The real repository is out there somewhere, accessible to our souls and god and people like Edgar Cayce.
If you believe this, then yes, no matter how damaged a brain is, as long as the soul is still attached to the body (another topic for another day), the memories can be retrieved.
Think of it this way. If you back up your files onto a thumb drive and then your hard drive crashes, you might forget you had the thumb drive and think the files are gone. But if you find the hard drive and plug it in, voila, there are your files. Think of the Akashic Records as a vast thumb-drive for your life, and all lifetimes if you believe in reincarnation and recycling.
Do mice have Akashic thumb drives? I don't know. I'm not a mouse. I would think not, but who am I to say.
If you are mister or missus scientist and you're laughing at all that, and to you memories are chemical pathways in the brain, then if the brain is atrophied and the pathways erased and the neurons dead, then memory and personality are erased forever.
I'll have to enlarge this and put it on my main website as an article.
Comments welcome, as always, especially from my more technical readers.

123 no more Alzheimer's study

My mom had to take my dad out of the Alzheimer's study at Yale. I was (am) so sad to hear that. The people at the study were a great resource for her, very helpful. But my dad's violent reactions (not just a metaphor, but truly violent) to being taken into New Haven for the tests, and for the serum, were getting worse and worse. Yesterday on the way he was hitting my mother as she was driving on the highway and screaming at her. She can't do it anymore. She won't do it, and I don't blame her. That kind of reaction in him could cause a car accident.
He only got one dose (out of 9) of the serum. But he was so disruptive at the hospital that the people at the study had already made the decision to ask him to leave if he acted that way again. On the one hand, you'd think they would understand his behavior/reactions (aren't they trying to study this disease!?) but on the other hand, someone screaming and yelling and making a huge fuss in the hospital is inappropriate.
I felt like the serum may have been helping him. Then again at the time when he got his first/only dose, he also went on a 3x higher dosage of anti-anxiety drugs so I might have just been seeing that.

122 so sad

My mom found a piece of paper on my dad's end table. He writes himself a lot of notes--I saw one where he had written my mom's name in big letters and propped it up so he could see it. Yet he still calls her "hey." He has other ones with his address and birthday.
The note she found made her cry and when she told me about it made me cry too. If I can find out the full text I will. But basically my dad had written "My name is Bob Rizza. I am 66 years old. I can't drive a car. I can't talk. I can't remember anything." It continued with a list of other things he can't do anymore.
How can ANYONE make jokes about how when you have Alzheimer's you make new friends every day and it doesn't matter because the person with AD can't remember he has it, etc. My father knows.
How fucking sad is that note? And he wrote it to REMIND HIMSELF that he doesn't know anything. It wasn't addressed to anyone.

121 news: Alzheimer's patient and dead rat

I have no idea of the truth of this story (you know the Internet), but it's been everywhere the last couple of days. There's a germ of truth in everything, so I wonder what it is in this case?
Staffing was so inadequate at a California senior center that a rat crawled into an Alzheimer's patient's mouth and died there before staff noticed, a lawsuit claims.
The lawsuit, filed Thursday on behalf of 90-year-old Sigmund Bock, alleges that administrators at the Paragon Gardens Assisted Living and Memory Care Community in Mission Viejo overbooked their facility to receive corporate bonuses, but cut back on staff to increase profits.
Hmm. Remember my last post, about running nursing homes for profit?
Melody Chatelle, a spokeswoman for Sunwest Management Inc., the Oregon-based company that operates Paragon, denied the allegations....Chatelle said that Bock was found holding a glue trap that had been placed in his room by a pest control company to catch a single field mouse. She said the dead field mouse was inside the trap when Bock picked it up.
So how did it get from the trap into his mouth if that is the truth? I can see how it changed from a mouse to a rat in the telling (a dead rat stuffed into your mouth is so much more impressive than a dead mouse...although it must have been a very small rat or he had a very big mouth).
Bock's attorney... said two traps were placed in Bock's room and both were laced with poison, not glue....Paragon records show a staff person noticed Bock "playing with a rat in his room and eating candy ... with the rat".... A short time later...paramedics called to the scene noted "possible ingestion of rat poison" in their report and an emergency room file says that Bock was "found in room in care facility with dead rat in mouth."
Obviously he thought the rat was some kind of pet. But that still doesn't explain how it got into his mouth. I assume it died because it ate the poison. Can a person with AD be so far gone he'd stuff a dead/dying rat into his mouth? Would such a person be capable of playing with a rat and eating candy with it? Seems like two different levels of functioning to me.

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As far as my dad goes, his anti-anxiety medicine has been tripled AND he's on the "real" medicine now as part of the study (all this time he's gotten the placebo). He seems a bit improved. He's better at puzzles. He seems to be farting less often and less loudly. He still picks incessantly at his hands, ripping off the skin and then licking at the wound. Because of the blood thinners, sometimes he really starts bleeding. We all (semi-automatically) say "Don't pick," and touch his hands to get his attention, but after a moment he's back to digging away and licking. The licking bothers me more than the digging--there's something so primal about it.
His OCD seems slightly better. At lunch on Friday, he dropped something on the floor and didn't care, unlike the time at the other place where he fixated on the dropped paper. Yesterday I saw him pick up every crumb and piece of lint from the carpet and put it all in a pile on the coffee table. My mom inadvertently knocked the pile back onto the carpet. He picked some of it back up, but not all, and my mom threw it away, and he seemed to lose interest. But then I saw him picking up various papers and magazines and hiding them under the couch cushions. He did it so quickly and so casually that if I hadn't been sitting right there I never would have noticed. He had a different bunch of magazines in plastic bags that he was trying to show me on Easter but no one could understand WHAT about the magazines was important, why he had them in individual bags or what he wanted to show me.
He still gets excited out of proportion, especially when it comes to anything concerning the car. If my mom hits a bump or hole in the road, he winces and says "ooh" loudly (even if the car barely moves) and he's still a little nuts about her parking far away from the door wherever they go (which was always his thing) and parking exactly between the lines.
He wears a ratty old hand-knitted green hat all the time, inside the house and out. Often in the house he'll have his winter coat on (on top of the 3 or 4 shirts he's wearing, and his fleece with the pockets bulging with special things he likes to carry everywhere). One night we let the dog sleep on his coat on a chair at the table while doing a puzzle. He came in, saw the dog sleeping on his coat, made me put the dog on the floor and then put his coat on. I swear it was because he didn't want the dog on the coat!
The dog is getting fat. He's not as fat as our last dachshund, but he's still chunkier than he should be. When we got him in June, he was thin and his ribs showed. (Too thin, but he'd been on the run for who knows how long.) Now he's got blubber. My mom says my dad feeds him all the time, whenever my dad has food the dog has some too. She's stopped feeding him wet food (due to the pet recall), which makes up for some of the calories, but he's still getting blobby. I am concerned because we don't know his medicine history (other than the injuries he had when we got him and the obvious scars on his body) and we don't know how his back will do with all that weight on it. Anyway, back to my dad, this isn't my pets blog.
His speech hasn't improved. When he wants something he's just as likely to point to it and say "that". We gently tell him the name. "Corn. Here you go." But it doesn't "stick". I noticed when I was there the other day he's got my mom's name written on a piece of paper next to where he sits. He never uses it, though, always calling her "hey" and grabbing her arm. I'm "hey" and an arm-grab too. For some reason he remembers my grandma's name sometimes, though. He never grabs her arm or calls her "hey". The cat and dog are both "baby", as are any of my birds he comes in contact with. He asks if every bird is the "original" one (meaning the one I've had for over 18 years) so he does remember that much.