Thursday, December 21, 2006

114 medical news round-up--lots o' new info!

One thing I didn't mention in my last post. When my mom finally got home from the hospital, my dad just kept hugging her and wouldn't let her go. Not like a husband who loves and misses his beloved wife, but like a child who lost his mother. So sad. He understands that he is completely dependent on her. And "that girl" of course, whoever she is.

New chemical gives insight into Alzheimer's
A chemical designed by doctors in Los Angeles could give unprecedented insight into the ravages of Alzheimer's disease and provide a new way to test for treatments....Previously the only way to determine if a person suffers from the devastating brain ailment has been to remove some brain tissue or with an autopsy.
The new study by doctors at the University of California, Los Angeles, is part of a larger quest to find a better method to diagnose the condition using tracers that can be detected with a positron emission tomography, or PET, scan.
The chemical, known as FDDNP, attaches to the abnormal clumps of proteins called amyloid plaques and tau tangles that develop in Alzheimer's sufferers and inhibit messages being processed by the brain.....
It was 98 percent accurate in determining the difference between Alzheimer's and mild cognitive impairment.That was far better than the 87 percent success rate for a PET scan test that measured sugar metabolism in the brain, and the 62 percent accuracy rate when doctors used a magnetic resonance imaging scan to gauge brain deterioration....
Finding an easier way to track brain deterioration not only would help doctors diagnose the disease, it could become easier to assess experimental Alzheimer's treatments, as researchers try to prevent the accumulation of plaques and tangles, or to reduce them if they accumulate.
That's exactly what the study my dad's in is trying to do. Too bad this technology wasn't already available. They could be doing this instead of all those MRI's and mental tests. What a great boon this will be both to research and to those fearing they have the disease.

Possible Alzheimer's fingerprint found
Scientists appear to have found a fingerprint of Alzheimer's disease lurking in patients' spinal fluid, a step toward a long-awaited test for the memory-robbing disease that today can be diagnosed definitively only at autopsy. Researchers ... discovered a pattern of 23 proteins floating in spinal fluid that, in very preliminary testing, seems to identify Alzheimer's — not perfectly, but with pretty good accuracy.
Far more research is needed before doctors could try spinal-tap tests in people worried they have Alzheimer's, specialists caution....
Scientists believe that Alzheimer's begins its insidious brain attack years, even decades, before forgetfulness appears — and if so, there should be evidence of those changes in the spinal fluid.

It's great that everyone's going for early diagnosis....but there's still no damn cure, still no REAL treatment that halts the progress or reverses the damage.

And like a wish granted, this article was posted in the last few minutes, as I wrote:
Potential Alzheimer's Disease Treatment Discovered
An antibody with the potential to block production of the brain chemical linked to Alzheimer's disease has been developed by researchers at Cardiff University in Wales, UK. The research is published today in the Journal of Alzheimer's Disease... The results of the study show that it is possible to decrease production of a small protein called *-amyloid (A*), which is believed to
be the main cause of the disease. Deposits of A* build up in the brain, preventing it from functioning properly. The team has developed an antibody that binds to a naturally occurring
protein in the brain, amyloid precursor protein (APP), preventing the production of A*. The antibody blocks the access to APP of an enzyme, b-secretase, crucial for the formation of Ab....
(I)t is possible that (this) antibody could be used as a preventative treatment to protect people at high risk of Alzheimer's Disease through their family history or other factors... The team believes that a form of the antibody could be used as a treatment to reduce A* build-up in the brain, improving the patient's memory and quality of life.
Some scary science stuff in there (well, not scary, just unknown to me). But it sounds interesting. I wonder if the "vaccine" they pour into my dad's veins works on the same principle?

Intellectual activity and not a pill, best therapy for Alzheimer's
Modest neuroprotective effects caused by education and intellectual activity at the cellular level may lead to dramatic reductions in the number of cases of Alzheimer's....The study suggests that the most effective neuroprotective therapy for Alzheimer's disease may be education and intellectual activity, and not a pill.
The researchers say that mounting evidence accumulated over the last few years support the notion that intellectual activity increases what neuroscientists call "the cognitive reserve".
According to the model, a mere five per cent increase in the cognitive reserve in the general population may prevent one third of Alzheimer's cases.
So all those dumb matching and video games I play might someday save my brain? All the reading and writing and art? God, I hope so.

S. Korean scientists find key factor in formation of Alzheimer's

A team of South Korean scientists said Wednesday they have discovered a crucial factor in the formation of Alzheimer's disease, a finding likely to help develop a treatment for the neuro-degenerative disorder...The team...discovered that the density of PIP2, a type of an organic compound forming the base of brain cells, plays a crucial part in the inherited form of the disease....The familial type is known to be formed from an overflow of proteins called beta amyloid in brain cells among people with mutated presenilin, another protein. However, scientists in the past could not find the correlation between the two proteins.
The team discovered that the density of PIP2 plays a key role in controlling the level of the two proteins, and that mutations of presenilin led to an increase in PIP2 density, while an artificial increase in the PIP2 density caused a fall in beta amyloids...(A) cure for the disease could be produced when and if we figure out how to control the concentration of PIP2.
More science. I wish I understood it better.

Testosterone 'could prevent' Alzheimer's
Men with higher levels of the hormone testosterone could be more resistant to Alzheimer's disease, a new study claims.
US scientists say they have discovered a direct link between a lack of the male hormone and the onset of similar neurodegenerative diseases in mice.
That's pretty straight forward. And testosterone is already an approved drug. What's the hold-up? It can't HURT can it?

Pomegranate Juice May Thwart Onset of Alzheimer's
If you opt for a glass of pomegranate juice, you may be staving off Alzheimer's disease...pomegranates, when compared to other fruits and vegetables, pack notably high levels of polyphenols. Polyphenols, according to researchers, are one of many antioxidants known to neutralize the harmful effects of free radicals, which attack healthy human cells and cause them to mutate into cancer cells. Free radicals have also been linked to triggering arthritis, atherosclerosis, diabetes, premature aging, and Alzheimer's disease.

Sounds good...and pomegranate juice is yummy enough...

Stem cell Alzheimer's treatment discovered
Scientists have discovered a new treatment for people suffering from diseases including Alzheimer's, dementia and depression involving stimulating the brain to produce more nerve cells.
Starts out good, but then it never really says anything, including how stem cells can help. I'm leaving it in because it's Yule and I feel generous.

Anyway, that's all news from the last COUPLE of days. Amazing.

Wednesday, December 20, 2006

113 "what are you doing here?"

My dad ended up having to go to the doctor and get an antibiotic for his hand. It's still a little painful and there's quite a scab there.
He can be so funny. Sunday night we got to my grandmother's at the same time. I got out of the car and walked over to their car and my father says (I kid you not), "Hi! What are you doing here?" Like I don't come there every week.
Yesterday afternoon my mom called me to say my grandmother needed to go to the hospital and I had to go dad-sit. So I went over there after work. My mom had left me a note telling me what to cook for supper, what time to have tea, and what time to let the dog out to pee.
My father comes in and starts talking to me. Then he says "there's a girl coming." I replied, "that's me." But obviously that was too confusing for him. I made supper and set the table for two. My dad carried the food to the table and put it right next to his plate and said, "I guess it's just me." I sat down across from him and he looked at me and said "You're eating too?"
I went downstairs to check my email on their computer. He followed me. He was very upset that I didn't have my shoes on. Why I need shoes on to walk downstairs to a finished basement (where I used to LIVE) is beyond me. He started showing me all the pictures he'd hung on the walls, some of which have been there for years. Then he showed me a picture I drew as a child, of my guinea pig and my cat. I said, "I drew that. It's Bubbles and Nippy." He replied, in Bob-Speak, that he thought the other one drew it. Not sure who the other one is, I'm an only child. Then again, I'm no longer "the girl" since she was supposed to come over and I showed up.
Oh? Grandma? She had a muscle spasm in her back. Told my mother she had a heart attack. My father REALLY had a heart attack and he told my mother he was just tired.

Tuesday, December 12, 2006

112 Father-biter cat, take 2

Last night I had a lovely dinner with a friend of mine. We're writing a book together and it was our first meeting to discuss it. As soon as I got home, I prepared to take a shower. My clothes were already in the washer (which wasn't turned on yet, thank god) when the phone rang. It was my mom. She said my father got attacked by the cat again and she couldn't stop the bleeding and she was trying to get him to go to the hospital.
At least this time I had a choice of clothing, and I pulled a (not clean) black t-shirt from the laundry pile rather than the lovely green shirt I'd had on. I learned the hard way when I had a lavender t-shirt on and the cat clawed my dad in June and the shirt was ruined by blood. My husband drove me to my parent's house.
My dad had a thick gauze pad strapped to the meaty part of his hand, beneath his thumb, and a wet dishtowel wrapped around that. He didn't want to go to the hospital. When I re-wrapped the dishtowel, he said to me, "you do this too?" and I said "Yes, I do everything, come on, we're going." It took a while to get him outside. I sat in the backseat applying pressure to his hand. The hospital is only 1 town away (maybe 15 minutes) but he had bled through the towel by the time we got there, and I had the full story.
Jasper was outside. The white cat came into the yard. Now the white cat is a very sad story. It belonged to our lovely neighbor who died many years ago. Her son lives right across the street but he didn't take the cat in. He basically just threw it away. The new owners of the house didn't adopt it (my friend adopted the cat which came with her house; people do it) and the cat's been living outside, going feral, for years. It looks awful and it's pitiful. I thought it was a brown cat, but it's a filthy white cat. It's white again after it rains. How sad is that?
Anyway, the white cat came into the yard. My father rushed to "save" Jasper (who now attacks the dog--he doesn't need saving from another cat, except maybe from the diseases it carries). Jasper freaked out and bit my dad. This was around 3:00. My mom bandaged it up, it seemed fine. They had dinner and she went to the store for more first aid supplies. When she came home, my father had taken off the bandage for whatever reason and was bleeding all over. That's when she called me.
He's on blood thinners & anti-clot meds because of the stent (whatever it's called) and I think that's the problem.
All the way to the hospital he was alternating between incoherent stories of the two cats, of how they tried to "kill" him in Hartford, apologizing for being a bother, and begging us not to take him to Hartford Hospital.
In the waiting room, a nurse re-wrapped his hand. Blood had dripped from the towel all over his pants. His hands were covered in it. Mine too. She had no sooner finished the temporary gauze wrapping then it flushed red. I finally saw the bite, and it was clearly a bite. One puncture looked sealed, but the other was in a more star-like shape and keep oozing very dark blood.
Because of his Alzheimer's, they got us into a room quickly (and it was a room, not just a curtain alcove) and my dad refused to get into the bed, terrified that we'd leave him. We put the animal planet on for him and got him to sit in the bed and keep his hand up over his heart. He kept asking to go home. It was very sad.
Of course hospitals are like airports. Hurry up and get there, and then wait.
Eventually a doctor came. He said he was an evaluation doctor, or something like that. The admitting nurse had said he needed stitches but this guy didn't agree. He put a cloth mesh across the cut and re-wrapped it, showing me how so I could re-do it the next day (today) and sent us home. We were only there about 90 minutes. Anyone who's been to the ER knows 90 minutes is amazingly short.
The doctor also declined to put him on antibiotics (except for the cream on his hand). When I go over there today, this thing better not spurt at me.

Thursday, December 07, 2006

111 Alzheimer's in cats

Who knew? A recent study shows that our feline friends also get Alzheimer's.
I have to wonder HOW you would know your cat had AD. With my dad (who is NOT a cat) it started with his posture, then his language skills. I only have one cat left, who is 13 and mopey over the loss of his best friend, and he's also got a cold right now. I can't imagine how I'd figure out if he had dementia as well. My dad doesn't forget things that are long-term (like where he lives, that my mom and I are important people to him). My cat doesn't really know much. He knows where his food bowl is, where his poop box is, and all the soft places to sleep. And he knows us, of course. I wish the article went into more details about the symptoms. Not that I think my cat is demented (well, not in an Alzheimer's way, anyway), but what if he was? Then what?
Cats can develop a feline form of Alzheimer's disease, say U.K. and U.S. researchers who identified a protein that can build up in brain nerve cells and cause mental deterioration. ... We've known for a long time that cats develop dementia, but this study tells us that the cat's neural system is being compromised in a similar fashion to that we see in human Alzheimer's sufferers. ... The shorter life span of a cat, compared to humans, allows researchers to more rapidly assess the effects of diet, high blood pressure, and prescribed drugs on the course of the disease. However, we also need to understand more about our geriatric cats for their own benefit, so we can slow down the degeneration the disease brings and keep them as happy cats for as long as possible... Like humans, pet cats have a longer life expectancy than they used to, which means they have a greater likelihood of developing dementia.
Recent studies suggest that 28 percent of pet cats aged 11-14 years develop at least one old-age related behavior problem, and this increases to more than 50 percent for cats over the age of 15.
My cat is 13 and right now his only problem is his cold, which the vet said is viral since it reoccurs periodically and goes away on its own.
(cross posted to my pets blog)

Tuesday, December 05, 2006

110 Intruder alert and melt-down

Last Friday night I took a shower at my parents' because I had put fresh sealant in my ever-leaking tub. I left my towel, soap, shampoo, body scrub, and loofah gloves on the sink in their bathroom and went into the dining room to work on the puzzle (still Noah's Ark). It was really windy and the wind was scaring the dog who kept barking. The dog went running into the bathroom barking and then my dad went in there. He came out whispering and hunched over, saying that someone was out there. My mother went into the bathroom and looked out the window. No one. In a normal tone of voice, she told him no one was there. He got very angry, slamming his hand like a karate chop into the table, whispering "yes there is I'll prove it". He then went into the bathroom and came out with my wet towel as "proof" someone was in the house.
(I can't make this stuff up, you know.)
My mom said that it was my towel. She pointed at me, sitting there with wet hair, as proof. He couldn't understand. She took the towel and put it back into the bathroom. A little while later he went into the bathroom and came out with something else of mine, saying "who's here? whose stuff is this?" We could NOT get it through his head that it was MY stuff and there was no intruder. It wasn't like I was hiding or anything, I was sitting right across the table from him.
The dog was really scared of the wind and he kept barking and barking and my dad started hitting the dog with his hat (not hard, more like swatting) so I had to rescue Ace and hold him, because if I put him on the chair he'd jump off and we don't like him to jump onto the hard floor (he has a bad leg). Have you ever tried to do a puzzle while holding a 16 pound dog?
This morning my mom called and said my dad had a melt-down in Target. She doesn't really know what happened. She thinks maybe he thought they were going to Yale (same highway, same direction). He didn't want to go inside the building, then once inside he got very agitated and loud, started yelling, people were looking and pointing, and she had to bring him home since it's too cold to sit in the car. She thinks he's upset enough to take off, so she doesn't want to leave him home alone. Thus I am drafted to Dad-sit tonight.

Tuesday, November 28, 2006

109 a better Alzheimer's test (actual tests to look at)

This is from Saint Louis University. Supposedly this test is BETTER than the other test for finding early dementia. I took it and had no problems. But I'm not even 40 yet.
A study showed this test spotted early stage dementia in more people (no stats given.)
This is the test, taken from the SLU site:

Saint Louis University Mental Status (SLUMS) Examination

1. What day of the week is it? (1 point for the right answer)
2. What is the year? (1 point)
3. What state are we in? (1 point)
4. Please remember these five objects. I will ask you what they are later: apple, pen, tie, house, car. (No points yet)
5. You have $100 and you go to the store and buy a dozen apples for $3 and a tricycle for $20.
* How much did you spend? (1 point)
* How much do you have left? (2 points)
6. Please name as many animals as you can in one minute. (No point for naming 0-5; 1 point for naming 5-10; 2 points for naming 10-15; and 3 points for naming more than 15.)
7. What were the five objects I asked you to remember? (1 point for each object remembered.)
8. I am going to say a series of numbers and I would like you to give them to me backwards. For example, if I say 42, you would say 24.
* 87 (0 points)
* 649 (1 point)
* 8537 (2 points)
9. (Draw circle.) This circle represents a clock face. Please put in the hour markers and the time at ten minutes to eleven o'clock.
* (2 points for hour markers labeled correctly)
* (2 points for correct time)
10. (Show a triangle, a square and a rectangle.) Please place an X in the triangle. (1 point)
11. Which of those objects is the largest? (1 point)
(note: no picture of objects given or described)
12. I am going to tell you a story. Please listen carefully because afterward, I'm going to ask you some questions about it.
Jill was a very successful stockbroker. She made a lot of money in the stock market. She then met Jack, a devastatingly handsome man. She married him and had three children. They lived in Chicago. She then stopped working and stayed at home to bring up her children. When they were teenagers, she went back to work. She and Jack lived happily ever after.
* What was the female's name? (2 points)
* When did she go back to work? (2 points)
* What work did she do? (2 points)
* What state did she live in? (2 points)
SCORING: High school graduate: Normal: 27-30; Needs more evaluation: 20-26; Dementia: 1-19.
Less than high school diploma: Normal: 20-30; Needs more evaluation: 14-19; Dementia: 1-13.

I found a copy of the other test, the Mini Mental State Examination on this site. I've looked for it before so I'm not sure if this is a new page or what, but this is it:

What is the (year) (season) (date) (day) (month)? 5
Where are we: (country) (city) (part of city) (number of flat/house) (name of street)? 5

Name three objects: one second to say each.
Then ask the patient to name all three after you have said them.
Give one point for each correct answer.
Then repeat them until he learns all three.
Count trials and record. 3

Attention and calculation
Serial 7s: one point for each correct.
Stop after five answers.
Alternatively spell 'world' backwards. 5

Ask for the three objects repeated above.
Give one point for each correct. 3

Name a pencil and watch (two points).
Repeat the following: 'No ifs, ands or buts' (one point).
Follow a three-stage command: 'Take a paper in your right hand, fold it in half and put it on the floor' (three points).
Read and obey the following: Close your eyes (one point).
Write a sentence (one point).
Copy a design (one point). 9


1. Ask the date. Then ask specifically for parts omitted, for example, 'Can you also tell me what season it is?' Score 1 point for each correct.
2. Ask in turn, 'Can you tell me the name of this place?' (town, country, etc). Score 1 point for each correct.

Ask the patient if you may test his or her memory. Then say the names of three unrelated objects, clearly and slowly, about one second for each. After you have said all three, ask him or her to repeat them. This first repetition determines the score (0-3) but keep saying them until he or she can repeat all three, up to six trials. If he or she does not eventually learn all three, recall cannot be meaningfully tested.

Attention and calculation
Ask the patient to begin with 100 and count backwards by 7. Stop after five subtractions (93, 86, 79, 72, 65). Score the total number of correct answers. If the patient cannot or will not perform this task, ask him or her to spell the word 'world' backwards. The score is the number of letters in correct order, eg dlrow 5, dlowr 3.

Ask the patient if he or she can recall the three words you previously asked him or her to remember. Score 0-3.

Naming: Show the patient a wrist-watch and ask him or her what it is. Repeat for pencil. Score 0-2.
Repetition: Ask the patient to repeat the sentence after you. Allow only one trial. Score 0 or 1.
Three-stage command: Give the patient a piece of plain blank paper and repeat the command. Score 1 point for each part correctly executed.
Reading: On a blank piece of paper, print the sentence 'Close your eyes' in letters large enough for the patient to see clearly. Ask him or her to read it and do what it says. Score 1 point only if he or she actually closes his eyes.
Writing: Give the patient a blank piece of paper and ask him or her to write a sentence for you. Do not dictate a sentence, it is to be written spontaneously. It must contain a subject and verb and be sensible. Correct grammar and punctuation are not necessary.
Copying: On a clean piece of paper, draw intersecting pentagons (as below), each side about one inch and ask him or her to copy it exactly as it is. All ten angles must be present and two must intersect to score 1 point. Tremor and rotation are ignored.

A score of 20 or less generally suggests dementia but may also be found in acute confusion, schizophrenia or severe depression. A score of less than 24 may indicate dementia in some patients who are well educated and who do not have any of the above conditions. Serial testing may be of value to demonstrate a decline in cognitive function in borderline cases.

This is the test my father has described to me, more or less, in Bob-speak.
There are other different types of tests on at this link.

Disclaimer: I'm not a health care professional and I have no experience administering these or any other tests. This is just for information. If you think you or a loved one has AD, please go to your doctor and take these tests with him/her.

Monday, November 27, 2006

108 Thanksgiving, dad & grandma -style

We had Thanksgiving at my mom's house, as usual. My mother-in-law brought shrimp cocktail, stuffed mushrooms and a lovely cake. My dad loves shrimp cocktail. He would have eaten ONLY shrimp for his Thanksgiving meal if we hadn't taken the platter away. Then he didn't know what anything was. He would point. He said "I don't know what this is, but it's good" about the stuffing, but then he was picking it out of his mouth (and putting it into the stuffed mushrooms serving platter of all places). He also picked the mushrooms out of his mouth.
My grandmother was her obnoxious holiday self. She claims to be "sick" and that we "don't understand" how sick her medicines make her. My mother and I tell her constantly to just stop taking them them, but then she's "sick" in a different way. There's no winning. She actually drove herself, in spite of the rain, but then complained that she was tired, she was missing her nap, etc. She treats my dad like he's 5, she either talks down to him or around him, and I don't like that. (Not that I never talk around him, but I don't talk to him like he's a baby.)
The cake was to celebrate my husband getting a new job. My grandmother picked up a knife and hacked a random hunk of out it before Will even got to see it, and then got angry that it was chocolate, and went on a tirade about how she can't eat chocolate. Will just sat there in shock. "She ruined my cake," he said in disbelief. Funny that she eats chocolate ├ęclairs every Sunday and never complains. But on Thanksgiving, chocolate makes her sick. Then she left. Apparently the next day she called my mom and was angry that she didn't get any of the dessert my mom made me ( graham cracker-pudding-chocolate yummy melange). We didn't offer it to her after her anti-chocolate rant. Why would we? She is getting so very rude, and she seems to think that's okay because she's 88. Ruining the cake is only part of it. On Sunday nights when we're over, she puts on this tape of country music (which Willy and I HATE) at full loud volume and does her "exercises" (simple stretches) totally ignoring us. She has ALL DAY to do this stupid tape, why does she wait until we're there? She sees me for 2 hours a week, and that's how she choses to spend that time? She knows we hate the music and basically sit there gritting our teeth until she's done. If I got up and left when she turned it on, then I would be the rude one. I don't get it. She also doesn't do the puzzle. She does her "exercises" while we do the puzzle for her. I don't even want to stay anymore and work on the puzzles anymore. She picks these ugly dark paintings and they aren't fun to work on.
Friday Will had off from work so the four of us went out for lunch at the Pacific Buffet. Where my dad had, of course, more shrimp cocktail. They didn't have his "shells" (clams). Will said he saw my dad get kind of lost, he went to the other side of the dining room where we sat last time instead of where we were this time. Dad was scooping ice cream with the little plastic eating spoon but he thought it was funny. He explained how he thought the spoon was going to break (in Bob-speak). My mom said he was in a terrible mood that morning and she almost left him home but that got him even madder.
Will and I went to a movie and that night I went back over to do a puzzle. I had seen some cheap puzzles at Big Lot and my mom braved the Black Friday crowd with my dad and they picked some up. He choose a Noah's Ark puzzle for the animals. As soon as we started putting it together he lost interest and wandered off. He pointed to the picture of Noah and said "He's the guy! look, he's got the little thing." (Meaning, baby sheep he was carrying).
He also did something VERY funny. I had been there about half an hour, and we were eating our tea and crumpets (water and the chocolate graham cracker dessert) and my dad says "I saw that girl today. They said they were coming later." I had no idea what she was talking about. Then my mom said, "That girl is your daughter and she's sitting across the table from you." He looks over, says "hi!" very cheerfully, shakes my hand, and then says to my mom "I told you." It was hilarious.
Some days you have to laugh, or you cry.

Friday, November 17, 2006

107 new study about angioplasty

I just saw this on CNN. It seems that "Opening arteries days after heart attack seems not to help" which of course means my dad went through that horrible time at the hospital for nothing (see entries 100, 101 & 103).
The highlights:

New research has overturned one of the most fundamental beliefs among doctors treating heart attacks: that opening a blocked artery is always a good idea, even days or weeks later.
Instead, the study revealed that doing this too late may not help, and there were disturbing hints that it might even be harmful. People who had balloon angioplasty to open an artery three to 28 days after their heart attacks fared no better than those given standard medicines to prevent a second attack.
The results don't apply to most Americans suffering a heart attack, but suggest that 100,000 of them a year might be able to skip the expense and risk of angioplasty and take medications instead, doctors said. ....
Angioplasty did seem to help prevent chest pain years after the procedure....People need to be clear about why they're having the angioplasty" and discuss with their doctor whether it is being done to try to improve symptoms or to try to prevent heart attacks and death.... The study also underscores the importance of fast medical help for heart attacks.

So I guess we did it for the right get rid of his chest pain...and for the wrong stop another one from happening.

Wednesday, November 15, 2006

106 raking leaves the Alzheimer's way

Thank you all for your comments & suggestions on the Medicare thing. We did write to Congresswoman Rosa DeLauro (email) and she sent a (snail mail) letter the same day with all the forms we needed to authorize her to step in and help. Meanwhile my mom kept calling Medicare during the more "acceptable" times and finally got through to a person who CLAIMS it is fixed but everything has to be re-submitted by the doctor and the hospital. So I am not convinced we are out of the woods yet.
Then my grandmother got a letter from Medicare saying they were cutting her benefits because an audit showed she had more than $10,000 in "stocks and investments" which she doesn't. She wanted me to take care of it. I know nothing about Medicare and insurance. Why me? My mom ended up going over there and making the calls. Of course because she's not my grandmother, that causes its own set of problems. She's got POA for my dad, but not my grandma, who's mostly competent. It didn't exactly get resolved, but my mom said they kept questioning my grandmother's address so she's thinking they mixed her up with someone else.
I asked my mom if I could borrow the leaf-blower to do my yard. Instead they decided to come over on Saturday and help. Which is fine, great, all that. I was feeding the birds so I didn't come out right away. As soon as I did, my dad looked up at me and said "Hi!" in absolute astonishment, as if to say "what's SHE doing here?"
I took the leaf blower and did my garden and my Meditation Circle. My dad raked the section of my yard closest to the house and my mom raked up by the garage.
My father picks up every twig, stick and fallen branch.
Every one.
He breaks it very carefully into pieces about a foot long.
And places them on the nearest table.
I have one wooden picnic table and two round resin tables. All three were piled high with carefully broken twigs, all aligned parallel with each other.
Then he starts carrying the leaves up into the back, where we have a big compost-kind of pile. He gets confused and then brings the leaves back to the leaf pile in the middle of the yard and puts them there. In fact, I think he may have been bringing leaves FROM the compost pile TO the yard for a while.
My mom started to carry the leaves from his section and he was standing there confused and she accidentally conked him in the head with the rake handle as she went by. She felt bad, but this is how he is. He hasn't the sense to duck or get out of the way. (When I am leaving their house or my grandmother's, he will stand right behind the car or right in front of it, waving and waiting. Sometimes he walks away and then wanders back. I'm afraid I'm going to hit him some day.)
My mom gets impatient with him, and I know she shouldn't, but I can see why. Sometimes he just doesn't GET it. She's saying 'hurry up and finish, I want to go home' and he's just standing there watching us work. Then he goes to pick up some leaves, and there's a branch, and he has to go through his breaking up the branch routine. He hands ME the pieces. I say "I don't want twigs. I don't save twigs." And I throw them back into the leaf pile, which gets him all upset.
After he left I found twigs piled everywhere. It was like being in Karl Wagner's short story "Sticks."

Tuesday, November 07, 2006

105 Medicare nightmare

My mom got a bill for $22,000 from Medicare saying they were NOT covering my dad's angioplasty/stent/stint (however the hell you spell it--I can't even get 2 people to agree on how to SAY it) . Their reasoning? My mom has a job and therefore has other insurance. Which she hasn't for 2 years.
Like a dutiful daughter I went over yesterday and called Medicare.
Can I give you some advice?
DON'T ever call Medicare.
A polite recorded voice told me there was high call volume and all representatives were busy and I might have to hold for a while. Fine. The voice then suggested I call back at another time, and gave me some options. I held on. The voice said again that all representatives were busy, suggested I check the Medicare web site for help, and then hung up on me.
This happened three times. I was on hold various times, from a minute or two to close to twenty.
Total bullshit.
So I went downstairs, went to the Medicare web site, and they have NOTHING. No contact form. Everything directs you to call the SAME number that just told me to check the website instead and hung up on me.
I hate government. I've voting today. Any incumbent, I've voting out. No one could be worse than who we have now.
As far as my dad goes, he's been really quiet. He asks me all the time "when are you coming again?" and I tell him the date and time, he looks at his watch and says "what's today?" So I'll explain. "Today's Friday. I'll see you at 5:00 on Sunday at Grandma's for dinner." "Okay." He shakes my hand, pats me on the shoulder.
One day recently, when I was explaining when I would come over again, he said, looking sad, "You're really busy, huh." It makes me feel so guilty, like I should move back into their basement. Yeah, like that would work. But then on Friday when he said "When you coming again? About a week?" and I said Sunday, he was happy.
But when I went over yesterday to call Medicare, he didn't even come and talk to me until I was leaving, and then he only waved.
A couple of weeks ago, I went over on a Wednesday night for dinner and then stayed to do a puzzle. My mom decided to take the dog for a walk. My father got very upset. "I don't like it when she's not here," he said to me, prowling the house. "I don't like it at all." I explained that he wasn't alone, I was there with him, but that didn't matter.
However, my mom was surprised when this weekend, he was talking to someone on the trail where they were walking with the dog, and he said "my wife" (he doesn't know her name, though--she's "hey" and "they"). My mom said he was trying to talk about me, but he couldn't remember my name or say "daughter". So I guess he does know who we are, to a certain degree. But he doesn't respond when I call him "dad" anymore so I call him "Bob."

Wednesday, October 11, 2006

104B off topic: NaNoWriMo

I'm doing NaNoWriMo again this year. That's the craziness of writing a novel (50K) in 30 days. Join me. Link to my NaNo blog below and in the sidebar. Will include word counts, excerpts, etc.
Expect silence from me, unless something huge happens, during the first couple of weeks of November.
.Gevera Bert's NaNoWriMo Blog

My progress:

Monday, October 09, 2006

104 smoking pot HELPS memory and a little wine will do you fine

The propaganda says that smoking pot makes you stupid, slow, and forgetful. New research (actual science, not anti-drug campaigning based on fear and ignorance) shows that pot may actually HELP people with Alzheimer's retain their memories. Ironic, isn't it? Although pot still remains illegal everywhere, and who knows how one can obtain it in such a way to avoid prosecution.
The story says:
New research shows the active ingredient in marijuana may prevent the progression of the disease by preserving levels of an important neurotransmitter that allows the brain to function....(M)arijuana's active ingredient, delta-9-tetrahydrocannabinol, or THC, can prevent the neurotransmitter acetylcholine from breaking down more effectively than commercially marketed drugs. THC is also more effective at blocking clumps of protein that can inhibit memory and cognition in Alzheimer's patients.
And if THC had any other source, it would be aggressively pursued. I'm no dope fiend or anti-dope activist, but it's a shame that pot has such a bad rap. Alcohol is legal and just as destructive to mind and body IF ABUSED, and so is tobacco.
Speaking of alcohol, another study says red wine is also helpful to those with Alzheimers:
Red wine has...been shown to reduce levels of bad cholesterol and to protect against heart disease and some cancers....(Researchers) working with mice carrying a gene linked to Alzheimer's, fed them either red wine, water, or ethanol. They found that mice given red wine had significantly less memory loss.
I detest the dead-grapes taste of wine. My dad likes it but only drinks at holidays.

Friday, October 06, 2006

103 "it was like this" (illustration)

Photo source: scan of "Prince Valiant", October 1, 2006.

This is the picture I spoke about in my last entry--notice the bracers which my father interperts as the restraints put on him, and the screaming look on the man's face. This is how he felt. This is what it was like for him.
A picture really is worth a thousand words.

Thursday, October 05, 2006

102 "You know her better than me"

My dad gives me the funnies every week. He has no problem remembering that. In fact, if he forgets to give them to me, he gets very upset. And if he gives them to me and I read and discard them in his presence, he becomes confused, fishing them out of the trash and giving them back to me. He can't understand that I just want to READ them, not OWN them.
This week, before he even gave me the funnies, he asked my mom to call me "because you know her better than I do" and ask me if he could have them back. My mom said he even knew my name on Sunday--and sure enough he did call me "Bert" when I was leaving my grandmother's.
When I found out WHY he wanted them back I was very sad.
In the October 1 Prince Valiant, there's a cell (is that what they are called?) of the comic which shows a man with a beard, wearing leather bracers (wrist armor) and yelling. It's part of a battle. But my dad isolated that cell (maybe they're called frames? neither seems right) and showed it to everyone. He pointed out the leather wristbands. "That's what it was like. See those?" He showed the bruises on his wrists. "That's what it was like." The cell/frame, out of context, could easily be a man in agony. As soon as I can get a copy, I will post that frame here. (I've got 2 copies promised to me--we'll see--my dad already cut his copy up before I could scan it and it's not online for another month.)
On Monday I had to take my female perfect lorikeet, whose name we don't know how to spell (rescue bird)--it's Aunnie or Onnie, like a combination of "aunt" (not "ant") and "annie"--to the vet for a check-up. Right before I lost my Zen she was diagnosed with fatty liver disease. I have been feeding her half-rations and pouring medicine into her 2x a day for 2 months now. She was up to almost 100 grams in weight, with a fatty bulge in her abdomen and another in her chest, and her blood was full of fat too. I brought her mate Hogan too. Onnie is the same age as Gwennie (they came from the same breeder in the same box) so she's around 13, which I think makes Hogan 15 or 16. Hogan has never been sick the whole time I had them (since 1995) and he's also the only bird I have with perfect feathers. This is the first time Onnie's been sick. I always try to bring my dad to the vet with me. It's helpful for someone to get the door for me and it's also to get him out of my mom's hair for a couple of hours.
He settled in my SUV with the box o' birds on his lap. "Where are we going?" "To the vet. You know, up in Berlin. You'll know when we get there." "Are we going to Hartford?" "No, we're going to Berlin." "Not Hartford?" The hospital was in Hartford. "I don't want to go there." "We're not going to Hartford. You'll see." He peers at the birds. "Which is the original one?" "I don't have him today. Lance is at home. This is Hogan and Onnie. Remember a long time ago we went to the airport to pick up some birds? Onnie was one of them." "No." But he does remember, because when we went to pick up my poor doomed sweet Prism in May, he remembered going there before to get birds "a long time ago" (12 years).
He's happy with birds in his lap. He holds up the box and talks to them. Tells them they are pretty and have nice green feathers. He worries about the state of Onnie's plucked head (Hogan pulls out her feathers) and tells Hogan "don't hurt him like that."
Onnie is down to 68 grams, more like what she should weigh. Her blood was like "cranberry juice" as the vet commented, not like cream of tomato soup like last time. We're waiting for the bloodtest to come back. Hogan is fine, he just needed a wing clipping and he likes car rides.
On the way home, a truck ran a red light on route 68 near Stop and Shop and almost "schmocked" us ("schmocked" is my father's new all-purpose word which he invented). My dad saw and alerted me so the accident was avoided. I thanked him. He waved his arm in my direction and said "They don't like it when I do that. They get mad." He means my mom, of course, who has forbidden him from saying anything about her driving. Which I can understand. He can be annoying. But in this case, he was right.

Thursday, September 28, 2006

101 “It was awful”

My dad came through the angioplasty as well as can be expected. He had to have a stent put in because one artery was almost completely blocked. He's back home now.
So I’ll back up to Tuesday morning.
My parents picked me up at 5:45 a.m. which is about an hour earlier than I am usually awake, much less out the door. We found Hartford Hospital without much trouble; there wasn’t a lot of traffic yet. (My dad thought there was but I think it was just that everyone had their lights on, which for some reason makes it look like there are more vehicles.)
Going to the hospital is like going to the airport. Hurry up and wait.
They put him in a room on the 8th floor first. They told us the wrong room and then said they were doing the procedure there in the room in front of us. Eww. No way. But it was the wrong room, wrong procedure, so we got moved to another room. He had to put on the little gown and cool little blue sockies with tread on them (I wanted to keep the sockies; I don’t know what happened to them.) and get into bed. They hooked him up to all sorts of IVs and things. Then we had to sit around and wait.
Finally they came to get him and moved us to another floor and a waiting room. My mom and I just sat there. The TV was on really loud, annoying morning talk shows and then the same news stories over and over. A few other people were in there and we talked to them a little. I tried to read.
The doctor, Dr Farrell, came and explained they were going to have to put a stent in because of the blockage, a medicated one which meant he’d have to be on more medicine (why a medicated stent requires more drugs then an unmedicated one will remain one of life’s great mysteries). The doctor was concerned about dad's compliance with taking the pills. But my mom watches out for all that for my dad.
We got to watch a video of the procedure afterward, how the dye floods the arteries and outlines the heart, and where they seem to disappear or get smaller is where they are blocked. He has several others which are partially blocked but the doctor didn’t put stents in them. He understood what my mom wanted—keep him comfortable, nothing heroic or crazy. He was awake (slightly sedated) for the procedure and the doctor said he did really well.
Once my dad was all done they took my mom away to sit with him but wouldn’t let me come in because it was “too crowded” so I probably sat for another hour alone. By then the TV was off, thank god. Then they moved him to the 10th floor. That took a while because they wanted to put him next to the nurses’ station so they could keep a close eye on him due to the Alzheimer’s. He also had a private room. By then it was after 1:00 p.m. We got him situated and then my mom and I left to have lunch, let the dog out, and I had to go to school. Plus I was exhausted because I didn’t fall asleep until after 2 a.m. (I don’t sleep well anymore without my Zen-Zen kitty).
When my mom went back up at suppertime, there were a bunch of psychologists waiting with my father. They were trying to “evaluate” him, whatever the hell that means. They wanted my mom to stay overnight with him. She refused-she’s got the dog, the cat and the crazy grandma to deal with. She can’t sleep up in Hartford on a whim.
These people had no idea what to do with him. My mom got mad and said “Don’t you have any other Alzheimer’s patients here?” and they said “yes but not on this floor.” Well then GO to the other floor and say “WHAT DO WE DO WITH THIS GUY?” How hard is that?
So my mom told him she’d be back to pick him up around 9:00 a.m. and went home.
When she got there the next morning she found out that he had been agitated and kept trying to pull out his IV and catheter so they put him in restraints and sedated him. She was a little late getting there due to traffic and having to stop at a gas station, and he was totally upset, saying that they told him she was dead and she wasn’t coming for him.
The thought of my poor gentle daddy drugged in restraints is so upsetting to me I can’t even put it into words. Yes he can yell and get upset but he doesn’t DO anything.
I went to see him last night after work and asked him how he was. His succinct answer? “It was awful.”
My mom said she will NEVER ever put him through that again. He’s already fighting his diet changes, fighting taking more medicine (she started last Friday with all that). She says 1-2 years and he’ll have “the big one” and that will be it. She switched his salad dressing with low fat (put low fat in the other bottle) because we’ll never be able to get him to stop drinking it. She’s going to switch his cookies to low-fat too, but she said he reads the package so it will be my job to buy low-fat cookies and empty the package into the cookie jar. He refuses to eat the baked potato chips (she’s already tried) so it will be no potato chips for him.

Friday, September 22, 2006

100 --my dad had a heart attack

Well, it's a momentous number--100 posts. And a momentous day.
My dad, back in July, while mowing the lawn, got overheated and had to come in and lay down. It was a horrible hot day, right around the time Zen died. He said his chest hurt right in the middle (sternum). He has refused to mow the lawn since. We worried that it was a heart attack but he had no numbness or tingling or anything in his left arm. My mom's friend's wife is a nurse and said it sounded like a pulled muscle and that's what I thought too. After a few days it stopped hurting, they went on vacation, it didn't hurt while they were there. I never even posted about it, that's how insignificant it was. Dad's too stupid now to get out of the sun, that's what we thought, and with my Zen dying I really had no desire to do much of anything.
Then he started complaining that it hurt again so my mom decided to take him to the doctor, but the doctor was away (hence Dad running out of medicine and running away a few weeks ago) and due to the doc's backlog he couldn't see my dad until today. He did a cardiogram (I guess I'll have to learn a whole new vocabulary of illness) or something and compared it to one done at Yale in July and immediately sent my dad to another doctor. Meanwhile I was at the post office and I'd forgotten my phone at home so I couldn't be reached.
So it turns out my dad probably did have a heart attack mowing the lawn. He has some kind of really bad blockage and signficant damage to his heart including dead heart muscle. My mom said the doctor wouldn't give her a straight answer on if he had a heart attack or not, but what else would kill the heart muscle?
Today at lunch she was saying that my dad was on another "I won't take any more medicine" kick and now he's on even MORE medicine for the rest of his life. However long that will be.
He's going on Tuesday for an angioplasty in Hartford so I have to take the day off from work. I can't afford to monetarily (I get no paid time off) and also it's the busiest week of the month while I'm doing the paper's layout. But it's my dad, and my mom wants me there in case something goes wrong and some kind of decision has to be made.
So I guess I'll post again on Tuesday or Wednesday with results.

Saturday, September 09, 2006

99 Guest speaker on Nursing Homes

My friend Patty, who lost her dad to AD this year, asked me to post this. Please visit her site and her blog as well.


How do we address the care of our elders, before they die but after they've lost their independence?

One things for certain, we'll all have close personal knowledge at some point with death. We'll experience it in as many different ways as there are people on the planet. But before death comes, many of us will be cared for in nursing homes as our elders are today. What is that like? How little we know and how much we need to learn - now! - while we have the time and the opportunity to get it right! For instance, how many of us can answer the following questions?

  • How does it feel to not sleep beside your spouse?
  • How does it feel to be unable to communicate your needs?
  • How does it feel to be dressed and undressed by a stranger?
  • How does it feel to be fed, not when you're hungry, but when it's "time"?
  • How does it feel to be fed what you don't like to eat?
  • How does it feel to not drink when you're thirsty?
  • How does it feel to be really thirsty, offered water through a straw you don't remember how to use, and have the water taken away because you're"not thirsty"?
  • How does it feel to need to use the bathroom but have to use a diaper?
  • How does it feel to wait for a stranger to come in and change your soiled diaper?
  • How does it feel when you have to wait for hours?
  • How does it feel to wait overnight?
  • How does it feel to holler for help and be ignored?
  • How does it feel when you can't bathe yourself but have to wait for your twice weekly bath by a stranger?
  • How does it feel to want to hug your child but you can't move.
  • How does it feel to cry and be ignored?
  • How does it feel to be hollered at to believe in Jesus when you're Jewish?
  • How does it feel to be cold and not pull your blanket up but instead have to wait for someone to notice, in the middle of the night?
  • How does it feel to be placed in a wheelchair for hours in a room full of strangers in wheelchairs with no music, no sound other than the CNA talking on her cell phone?
  • How does it feel to never go outside in the fresh air and sunshine?
  • How does it feel to know you won't get past the front door until you die?
  • How does it feel to be talked about as if you weren't in the room?
  • How does it feel to know you're spending down your life's savings to pay for this care?
  • How does it feel to not get your teeth brushed for weeks?
  • How does it feel to have your skin tear when you're pulled?
  • How does it feel to not move and develop bed sores?
  • How does it feel to not have them heal because you're only bathed twice a week?
  • How does it feel to have them spread?
  • How does it feel for your children to not see them because they're on your bottom, under your diaper, under your clothes?
  • How does it feel to hear the nursing home won't install web cams because they want to protect the privacy of their employees?
  • How does it feel to be old, incontinent, with Alzheimer's, in a nursing home in America?

These are all ordinary, everyday situations that our parents in nursing homes all over our country face on a daily basis. Don't believe me? Ask around - you'll hear the same heartbreaking stories coming from all over the United States. Ask your legislators if they know what's going on. And if they're shocked ask them if they would dare do something about it.


I have an idea but I need 12 brave legislators to take a leave of absence from their posts for one week. Preferably the ones who have campaigned as strong advocates for the elderly. And since Florida leads the country in aging, that would be a great place to "host" this event.
I propose they take up residence on one floor of a hotel, set up to follow ordinary nursing home procedure. This will be there "pod." Theyagree to be diapered, and unable to walk, bathe or feed themselves for one week. They rely soley on one statistically-average aide - no education other than CNA certification, unverified background check, questionable documentation, no
experience - to do all of their care. This aide will make only $8 per hour. There will be one aide only - reflective of the acceptable staffing ratio in most nursing homes - 1 CNA to provide ALL the care for 12 residents.
These "residents" must not talk, they must not move, they must not read, they must not verbally or physically communicate, they must not do anything but lie there. They can moan, they can cry out, they can grab the hand of someone walking by, but they can't articulate their needs, no matter how dire.
They can't propel their own wheelchairs, they can't lift themselves up, they can't roll over in bed, they can't get water when they're thirsty, they can't get aspirin when they have a headache, they can't use the phone, they can't go outside in the sunshine and fresh air, they can't do anything for themselves. They can do absolutely nothing.
They have to exist as the patients of nursing homes exist, entirely dependent upon others for their care.
When the week is over, we'll have the information we need to address the nursing home system as it exists today. Maybe it will be great, maybe it will be awful but either way these 12 elected officials will know first hand what they're legislating about, care of the elderly. If everything is fine, we won't have to change a thing. If everything needs to be overhauled, these brave 12 can lead the way for the rest of us who just don't know what it is we're in for.
I believe that experience will change the laws in the state of Florida within one week. And if this one-week experiment is conducted nation wide, it will transform the way we care for our elderly.
The men and women who swear to lead us, to govern us, to protect us, should know first hand that the golden years have turned to lead in our country. The men and women who campaign tirelessly to attain their elected office should be willing to give us this one week, just seven days, to see firsthand how shamefully the nursing home system, as it's structured today, is failing our elders.
Without that knowledge, how can they honestly say they know of what they legislate? WITH that knowledge, they'll have the power to pass the most sweeping legislation in our history.
Our mothers, fathers, aunts, uncles, ARE these elderly people. For once and for all, 12 legislators can transform this haywire nursing home industry by participating in this challenge. All they'll have to do is nothing. When has it ever been possible to accomplish so much by daring to do nothing.
Thank you for your consideration.
Patty Doherty
PS. Oh, and one more thing, these 12 legislators will have to pay $1500 each for their care - the average cost of one week of average care in an average nursing home for an average Alzheimer's resident.

Here's my idea, Patty. I'm going to write to the producers of 30 Days and see if THEY will take this challenge.

Friday, September 08, 2006

98 AD news--fighting tangles rather than plaque

I know I just did an entry. I should have checked the news before I hit "publish"!
This is a study with enzymes which attack and cut up the tangles. I guess my understanding of tangles was (is) incomplete. I thought they were just dead neurons, caused by the plaque or maybe something else. This seems to imply that, if cut apart, the brain cells are viable again.
Researchers think they may have found a way to target neurofibrillary tangles, the jumbled bits of protein inside brain cells that might contribute to Alzheimer's disease....
Much of Alzheimer's research has focused on so-called amyloid plaques, a buildup of proteins inside the brain between cells that appears to contribute to dementia. But Geschwind and his colleagues looked at tangles, another part of the puzzle. These tangles of protein, called tau, are associated with cognitive decline in Alzheimer's and similar "tauopathy" diseases.
Neurofibrillary tangles are "a kind of compressed bunch of filaments that are just like a tangled bit of twine inside the [brain] cell."....It's not clear if tangles hurt brain cells or are just a symptom of a dementia problem....
Geschwind and his colleagues suspected that an enzyme known as puromycin-sensitive aminopeptidase plays a role in degenerating brains...The researchers found that the enzyme appeared to prevent both the decline of brain cells and snip apart tangles. Research on brain cells taken from humans suggested that the scientists are on the right track....However, it will likely take years for a drug for humans to be developed.
When I see a story like this, I just hope that it will save someone else's father.
And then I think of nanotechnology. Can't we train little robots to eat plaque and untangle neurons?

97 Floor covering vs broken hearts, support group, tag sale

For 6 years I worked as a product manager for a floor covering distributor. I used to know EVERYTHING. Now I've finally let most of that go--it's been 6 years since I worked there. But one thing I remember is when you chemically seal a vinyl floor (join 2 pieces together) or use the special caulk-like bonding product for commercial vinyl (I forgot the name of it--see how great that is!) , that seal is the strongest part of the floor--not the weakest. Isn't that ironic?
So I have to wonder if the human heart is the same way. If it breaks and heals, is that break now the strongest part? If my heart has been broken a hundred times, or a thousand times, is it just a mass of seam sealer, stronger than ever?

Yesterday I went to a support group meeting with my mom. It was interesting to hear other people's stories and experiences. I would like to have talked more. There weren't a lot of people there and I hardly talked. I can't imagine a standing-room-only meeting like my mom said a lot of them are. It was in the same room where we talked to the pre-med students back in April.

My mom's having a tag sale tomorrow. I called to ask her a question about it so I could make some signs. My dad answered the phone. Never a good sign--it means he's home alone. I was on the phone with him a full 7 minutes (my phone has a timer). This is how the conversation SHOULD have gone:
"Hi Dad, is Mommy home?"
"No, she's out walking the dog still."
"Okay, can you have her call me? It's about the tag sale."
"What number are you at?"
(I say the number) "I'll see you later Dad."
"Okay, bye."
Instead, he thought my mother was at work and I was giving him HER number. Then he couldn't understand who I was. I asked him what time the tag sale was tomorrow and he told me the time right now. I told him she was probably out walking the dog, but that seemed to confuse him more than thinking she was at work (she hasn't worked for months). Then he couldn't get the number right--he kept transposing the numbers. Then he didn't understand who I was, finally saying "Oh, you come over all the time."
My mom called back and gave me the information. One minute 37 seconds.
Last night I brought over a carload of stuff for the tag sale. Plus 3 dismantled tables. My father was extremely distressed by this. We asked him for help carrying the stuff into the garage. In the time it took him to take the card table from the back of the car and carry it 5 feet to the garage, my mom and I had unloaded the rest of the car and piled the stuff up in the other room.
My father got even more upset. "All that's my stuff." He had some old promo things from when he sold cars, bags and day timers and things he's NEVER used. My mother showed him each item and he still said "it's mine." She said, "The stuff you wanted to keep is over here." She led him to a shelf and handed him the items. "Not that!" he yelled. "That's mine! You can't!" "We aren't selling these. That's why they are over here." "That's mine!"
I tried to explain that EVERYTHING I'd brought over was MINE and I was selling it, that it was okay to sell things that weren't being used. I also gave him a couple of empty Pepsi bottles. He was upset that our pile of tag-sale goods was impinging on his area to sort empty bottles into garbage bags. He put the bottles into bag, it was the wrong bag, he got mad and said the guy at the recycling place "would kill me" if he brought in the bag that way. I really don't think it's such a big deal, whatever. Maybe it is to the guy at the bottle return center.
I went into the other room to see the cat. He was in a foul mood. He hissed and smacked me across the face when I petted him. He really can be an unpleasant creature. Ace followed me in, whining and barking at the cat so my mom swatted the floor with the newspaper and yelled at him. While we were in the big room Ace snuck back into where the cat was and started jumping up at the shelf where the cat hangs out, barking and whining. Jasper started hissing and trying to smack the dog from his perch. My mom yelled at the dog again. My father yelled at my mother for yelling at the dog and said the cat started it.
On that note, I went home.

Wednesday, September 06, 2006

96a Web Rings

I think right now people are finding me mostly through Yahoo Answers. Which is fine, but I want to open myself to other kinds of traffic. So I've joined some web rings.--two through the regular "web ring" process and one private web ring called Memory Lane. You'll see the links toward the bottom of my sidebar.
I found the Memory Lane webring through the Tangled Neuron site after the owner of TN wrote to me. I was not surprised to see the Unforgettable Fund, run by my friend Patty's family, as one of their links.
I still don't know what I have in mind for all this information. Do I want to write a book, start a support group, I don't know. Right now it's just a sharing. I walk behind my dad and you can follow along.

Tuesday, September 05, 2006

96 Alzheimer's brain images

A split-view image showing PET scans of a normal brain (L) and a brain with Alzheimer's disease (R).

Left : Normal brain
Right: Alzheimer Brain

How many times do I have to say how awful this disease is?
My father will never get better. He will never be my daddy again. He will be a shrunken confused frightened man (who calls my mom "hey" and thinks my husband is just some guy who comes and mooches food and who knows what he thinks of me) who will get more confused and more frightened until every day is the best he can be, and yesterday was always better.

95 Alzheimer's and suicide

My mother and I have both said, repeatedly, that if we come down with AD we'll kill ourselves rather than be a burden.
However, it seems like we aren't allowing my dad the same choice. When he talks of suicide we dismiss it or try to stop him.
I was wondering how many people with AD kill themselves. Here's what I found:
In the Netherlands, 22% of those diagnosed with Alzheimers elect assisted suicide.
The Alzheimer's Association website has a 2 page PDF about suicide with no facts/figures. Their position is that no one should actively commit suicide or help another with it (Kevorkian is mentioned) and that refusal of treatment is different, and that's okay.
The abstract of another article says about 8% of AD patients attempt suicide.
When you think about how many people have AD--what is it, 14 million?--that's 1 million, one hundred twenty THOUSAND suicide attempts. 1,120,000. Nothing about successes.
This cause of death list says AD moved up to number 7 in 2004 (last available year) with almost 66,000 deaths. Suicide is #11 but it doesn't break it down by WHY people killed themselves.
I found this kind of random series of journal excerpts from a man who worries he has AD and the final entry is that he does, and he mentions suicide. His site is very interesting and I've written to him.
But the end result is, after an hour of Google, I can't find any real stats except that one tiny study.

Saturday, September 02, 2006

94 lost dad

In spite of all my metaphysical training I can only feel punished by all this. I can only think "why me" and understand why there is religion, why ancient man looked for gods to give meaning to life's stupid shit. And as nice as it is to think the gods never give us more than we can handle--I'd like to be handling a little less right now if you don't mind.
My mom finished last week's puzzle without me. Which is fine. She saved it for me, and I decided to save it permanently and hang it on the wall (I bought the set of 3 with the intent of saving at least 1 of them). So this morning I headed out at 9:00 a.m. to the bank for cash and to the craft store for puzzle glue then to the grocery store for food. I saw a maroon Hyundai in the parking lot with a very familiar license plate so I parked next to it, and then looked up to see my parents coming out of the door. I gave the glue to my mom and said I'd be over in about an hour to glue the puzzle. My dad helpfully told me where to go to find the Dunkin Donuts inside and buy a coffee. I hate coffee. Oh well.
I did my shopping and headed to my parents', getting there around 10:15. Of course my mom had already put 2 coats on the puzzle so there was no need for me to have come over at all. In fact she'd used the whole bottle up and was finishing it with mod-podge decopague stuff (which we used last year to make wooden tiles for fortunetelling).
Since I hadn't seen the cat the night before, I went downstairs to look for him. He was on his shelf, sleeping on the little quilt my mom made him, next to....a pile of Ritz crackers. At the back of the shelf was an open box of Ritz. I asked my mom about the crackers. Maybe the cat likes them, who knows? Our first cat Nippy loved potato chips. Nutter loves corn on the cob and Zen loved blueberry muffins. But apparently the cat doesn't like Ritz. Who knows what my dad was thinking when he left them there for him.
The cat was in a good mood, purring and happy. My mom ate the crackers. Then the beastly dog came downstairs barking and whining and jumping on my mom while she was holding Jasper so Jasper freaked out and the dog got yelled at and the newspaper got slapped against the floor but the dumb dog doesn't get it.
My dad followed me out to the car and started freaking out about my headlights. There's some foglights that I've never used and could care less about and he has a fixation with them. I explained that everything works fine at night but it's daytime so I don't need them. "They don't work?!" He says incredulously. He hears what he wants to. I explain, again, that I don't use them in the daytime, but he doesn't get it.
His anti anxiety/anti depressant medication ran out and their primary care doctor is on vacation for another week. Obviously it was working and now it's worn off. I told my mom to call the doctors at Yale and get it from them like she did the first time. But it's Labor Day weekend and she can't get them until Tuesday.
I went home, put away the groceries, made lunch, had lunch, hung out reading with the cat for awhile. At 1:45 my grandmother called. She talked to Will. He said she was hysterical and crying, that my dad took off "across the park" and my mom couldn't find him. We piled into the car and drove to my dad's last known location. But there's no park on that street so that didn't help much. I called my mom's cell phone; of course it was off. I called the house; they weren't home. We checked for my mom's car at my grandma's complex; wasn't there. Drove to the park around the corner, they weren't there. Then my mom called to say they were home.
She told me 2 different versions of what happened. In the first version, my grandmother gave my dad some puzzle pieces that he couldn't put together and he got angry. In the 2nd version my grandmother took away my dad's pieces and he got angry. Either way, he left--that's what he's been doing lately, leaving when he's pissed off. He yelled at my mom (what else is new) and walked across the field (not a park) and my mom got him into the car and home.
My grandma flat out told me I was lying when I called her back (thank all the GODS for cell phones) and that I had to go to my mom's and see for myself that he was home and safe. I dropped Will off and went to my parents' house.
My dad just stood in the doorway and stared at me. It was very disconcerting. Then when I came in he said something to me about "going to jail" but I wasn't sure if he meant I was going to jail or he was. I played with the dog again, played with the cat. Mom said she'd already called grandma but I called again and told her everything was okay. She answered "I hope so" in a very un-hopeful tone of voice.
Mom told me that my dad had given her his money and said he was going to go kill himself. He threatens this all the time now.
She let the cat out and then the dog. I was in the garden playing with the cat and my dad came out with his coat on. He's been freaking out because there's a small stain on the coat, his favorite coat, which he claims to have had for 25 years. My mom asked him where he was going and he didn't answer. So we figured he was just hanging out outside with us.
I left, headed home. As I was walking in the phone was ringing. It was my mom. My dad took off on foot. I got back into the car and went back there. I told her to call the police.
One of the neighbors said they'd seen him heading up the hill. So I drove up the hill, to the center of town, in a big loop through Choate and back. Then I did an extra loop down to Community Pool and back on Route 5 just in case the neighbors were lying. I got back to my mom's just as the police arrived. I called Will to say I needed him with me. It's hard to drive and look. I really wanted to talk to people I saw walking too. My mom talked to one cop in the house and I was describing my dad to the other 2 cops. Neighbors were driving by gawking and listening. The cops said I should keep looking too. I was turning my car around when the guy across the street came running out with his hand up and his cordless phone to his ear. He said his wife found my dad by Walmart and she was with him. I told him to go into the house and tell the cop with my mom and I'd go see if I could get him. I remembered that his wife had driven by when I was describing my dad. Apparently she just went off and looked for him. If I had gone past community pool I would have found him myself.
As I drove by Walmart I was thinking that I should have gotten more precise instructions than "behind Walmart" when I saw a maroon SUV driving very slow with its hazards on. In front of it was my dad, trudging along. I pulled next to him and told him to get in the car. He first said "why?" and then said "I'm just going along with a smile on my face" and he grimaced and kept walking. In the rearview mirror I could see the police car coming with its lights and sirens on. I said "we called the police, they are coming to get you." The cop took charge and told my father they would see how fast his cruiser could go. He took all his gear out of the front seat and put my dad there. I thought that was so kind of him, not to make him ride in the back like a criminal.
I thanked the neighbor profusely and headed back to my mom's again. All the cops had come back already--they probably hadn't gotten very far. They really wanted to bring my dad to a hospital. I think that would have freaked him out. And what would it have done? He needs his medicine.
I stopped and bought a bag of Halloween candy on the way home. Sometimes I just need chocolate.
In good news, my mom told me yesterday at lunch that at the end of the study, all the participants who got the placebo will be given the real drug at no charge. I guess that's good news and the drug is working. But is my dad on it right now? We won't know for another year or so.
I just called the study office at Yale and got the pager number of the head doctor. But my mom doesn't want to "bother" him. ARGH. My dad just freaked out and took off TWICE in one day. It's not a bother for a doctor with an established relationship to my dad to call in a prescription for him.

Monday, August 28, 2006

93 Freud & at the car wash

I was thinking about how my dad's AD is progressing. If you look at it from a perspective of superego/ego/id, it seems like the superego is already gone. The ego is being stripped away. All that's going to be left soon is the id--the primal part. Already his filters are gone--the way he farts outrageously and pretends he doesn't know, how querulous he is about everything, the way he will just get up and walk away (or say something is bullshit and then walk away) if he doesn't like it--the way he did at the senior center.
The Id is a base (basic) creature of wants and needs, essentially thoughtless. I wish I could put a tape recorder into my dad's head to see what's in there, how does he think, does he think? When he seems to be "not there" is anything happening in his head? Last week I brought my car over to their house to wash it. My dad's got all the buckets, sponges, cleaning fluids etc. He used to love to wash cars. He had no interest. My mom had to go find him and he was in the backyard talking to the cat about butterflies (typical). She asked him to come and help us wash the car and he answered "I have to go to the bathroom."
So her and I washed my car. She got me pretty wet--she's not at all careful where she aims the hose. Then she decided since we had the bucket of solution already made we might as well wash her car too. So I backed my car to the bottom of the driveway and we started washing her car. By then my dad came to the front yard. My mom asked him to do my windows. He just stared at her. I decided to go pick up my husband's car and wash that too (he only works a short distance away). I switched cars and came back. My mom had thoroughly soaped her car and was rinsing it. My father re-did the whole car and rinsed it again. She sprayed him with the hose by accident and he had a conniption. I didn't much care about getting wet--I had just come from swimming at the gym and was going to go home and shower anyway. But you'd think someone had sprayed him with toxic waste. Or poop. He just over-reacts to everything (that filter thing---lack thereof-- again).
He took over washing my husband's car and did his windows without being asked. So not sure what the disconnect was about washing MY car windows.
Since I wasn't needed to finish Will's car I went in the house and got the dog, who was flipping out and whining at the door to the garage. I sat on the steps with him and we were singing. He loves me and he loves to "sing" with me. He obviously had an owner he sang with before. He has rules about singing. You MUST be holding him and he has to have his head higher than yours. This means he climbs up onto your chest or shoulder, squirming madly with joy, and puts his head back in true wolf fashion and lets out these wondrous howls. All the person has to do is make fake howling noises to keep him going. In between howls he whines and licks and nibbles your nose, face and ears. It's truly hilarious and he does it most enthustically with me. (My grandmother gets upset because he won't "sing" with her but she doesn't pick him up so that's why he won't do it.)
When Ace and I get going with our wolf-song, my dad gets angry, puts his hands over his ears, glares at us and will eventually get up and leave the room or shout for us to shut up. Whenever the dog barks that's his reaction. And Ace doesn't bark any louder or more than Alf and Alf's barking never bothered my dad.
Last week I planned to go somewhere different for Friday lunch with my mom, since my dad was supposed to be at the Senior Center. But he got kicked out so he came along for pizza. It's a fun place decorated with pictures of old cars which he should have liked. I used to go to school with the guy who opened it (he doesn't own it anymore) and my dad worked with his dad back when the two of us were born. Of course my dad couldn't remember that. They have a nice little lunch special of a personal pizza w/ 2 toppings, soda and salad for $6 when usually the pizza alone is $7.25 (no toppings). And I had a coupon for $2 off.
Literally it took 25 minutes for us to get my father to decide what he wanted. He wanted a tuna sandwich. I said no, that if he ordered that I would just leave because I wouldn't be able to eat. We showed him the chicken and broccoli pasta, which he likes everywhere. No, he wanted the goddamn tuna fish. Tuna is so repulsive to me that just thinking about it makes me gag. My mom tried to get him to order a lunch special with us. He couldn't understand what it was. We ordered garlic bread with cheese while we argued with him. He twice started to get up to walk home because he couldn't have his stinking fish. Then he said he would go sit across the room "since you don't want me here." I explained that I want HIM there, just not TUNA FISH. We were going to get him a cheese-only pizza but he couldn't understand what the cheese was. We said "it's what's on the garlic bread" (of course he had taken one bit of a piece and thrown it aside in disgust) and he said "no, I don't want that." So we ordered him a sauce-only pizza. He ate his salad with double dressing (ew) and then when the pizza came he didn't like it because it had no cheese and he ate my mom's pizza instead, which had cheese and meatballs on it.
This week we went to Friendly's. Again with the tuna fish and the fight over it. The one time we let him get tuna there and I didn't eat and ended up leaving, driven away by the stench, he got very upset. But he can't remember that. We offered him a choice of a couple of things on the menu but his finger kept going back to the tuna. Finally I just ordered something else for him that I knew he'd eat. We got mozzarella sticks and for some reason he hates them, and when the waitress put a plate in front of him to eat off of he said "no, no" like we were poisoning him. He used to eat them, once upon a time. At least they don't stink. It's the stench of fish that offends me. Eat it all you want, but I don't want to smell what you're eating from across the room.

Only a small bit of AD news. Scientists have tinkered with mouse brains so that the cells shed the plaque before it kills them.
By tinkering with an enzyme in the brains of mice afflicted with the rough equivalent of Alzheimer's in humans, scientists were able to improve the rodents' memories. ... the new research expands on previous findings that suggested a shortage of an enzyme in the brain may be connected to Alzheimer's. The enzyme, known as Uch-L1, appears to be crucial to a cell's ability to get rid of malformed proteins and maintain memory.