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.

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.

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.

---

DO WE DARE LOOK AT THE ELDERLY IN NURSING HOMES?

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.

THE DARE

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.
DARING TO 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.
Sincerely,
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.

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.

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.

96 Alzheimer's brain images

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

source
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.

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.