Look at Them Swim

This is the essay I submitted to Chicken Soup for the Dementia Soul.  I did not hear back from them, and the book comes out on 4/22/2014, and you're supposed to hear back two months before.  So here it is for your enjoyment, and  you don't have to buy the book.

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Look at Them Swim

Dementia is a terrible disease and as it progresses, most days are filled with incidents we’d rather forget.  But every once in a while, there are brief moments of joy and laughter.
My dad had Alzheimer’s for four years, and his first symptoms were speech-related (aphasia).  As the disease progressed, what he had to say became more and more random and often unintentionally hilarious. 
Some people have said, “How could you laugh at your sick father?”  Those people have never lived with someone who has dementia.  You take the fun where you can get it. 
His lack of connection to the real world sometimes made him adventurous.  We’d take him out to eat and he’d look at the pictures on the menu. 
“What do I eat here?” he would ask us, pointing.  “Do I eat this?  Does this one go with that one?” 
“You like this one,” I’d show him.  “Remember?  We used to get it when we went on vacation in Plymouth every year.”
“Oh, the beach!  I like it there.”  And he’d be off, talking about the beach we visited every summer for thirty years.  How we would walk around in the tidal pools at low tide looking for starfish and sea urchins and once in a while even a lobster.
Meanwhile the waitress is waiting, looking annoyed.
“So do you want to eat this?”
“Yes!”
“He has Alzheimer’s,” I’d explain, and order his food for him.  It was always amazing how people who were impatient or angry with my father’s weirdness changed instantly when I said that, often going out of their way to make sure he had a good time (even if we were just at Home Depot buying some nails).
Once the food came, my father would look at it doubtfully.  “I don’t think I like this,” he would complain.
“You do,” I would assure him.  I never ever lied and made him eat something he hadn’t liked before.
“How do I eat it?”  Sauces and side dishes confused him.  “Does this go on here?”
I’d show him the “right” way and he’d eat some of the food, and then his face would change.  “I remember this!” 
He knew, you see, that he had Alzheimer’s.  He didn’t ever seem to understand what it was, though.  He called it “this thing in my head that’s killing me” and carried around a scrap of paper on which he had carefully written ALZHEIMERS in his precise block printing, that he could show people.  Then he would display his Safe Return bracelet, and if I was there, he would point to me and say, “That one gave this to me” like it was a prize. 
He knew he couldn’t remember.  He knew he didn’t understand.  And when he did remember, or understand, he would be so happy.
“We eat this at Plymouth!” 
“Yes, we do.  It’s good, isn’t it?”
And he would be happy, for a little while, and so would I.
I don’t know when he forgot who I was.  My name left his head very early, along with all names.  I was “that girl.”
He didn’t know who I was, but he knew he liked me.  If he was out with my mom and they saw an SUV like mine, he would get all excited and point. “Is it that girl?”  If he saw an overweight redheaded woman on TV he’d think it was me.
He was injured one night while I was visiting—he got in the middle of a fight between the cat and the dog—and the cat opened an artery on his hand.  I used first aid to stem the bleeding until the paramedics arrived.  When they did, and fixed him up, he pointed to me.  “This girl, she helped me.  She saved me.” 
When I left that night, he followed me out to the car and very shyly asked me for my phone number.  “In case I get in trouble again.” 
I wrote my home, cell, and work numbers down. 
He stared at the paper and then at me.  “I know these numbers,” he said slowly.  “I know YOU.”
“Yes, you do,” I said gently.
As his disease, and his aphasia, progressed, conversation became more difficult.  I used to call it Alzheimer’s Mad-Libs. 
I called looking for my mom and my dad answered.  
“Bob,” I said, “Where’s Ann?”  Dad and Mom were concepts long gone.
“Oh,” he replied.  After a long time, he said, “She took the thing to the place, for the, you know.”
“Tell her I called.”  I tried fruitlessly to explain who I was.
“Okay.”
When my mom got home, of course he said, “They called.”  She had no idea who. 
Meanwhile I’m at home playing fill-in-the-blank.  She took the dog to the vet for shots?  The car to the shop for repairs?   Grandma to the doctor for her eyes? 
My mom got Caller ID after that.
We had a dachshund and a tuxedo cat, raised together as best friends, who had both died not long before his diagnosis.  I’d bought them a Siamese cat, but my dad missed the dog.  When he took walks with my mom, he would approach every dog and think it was his.
My mom did not want to start over with a puppy, not while dealing with early-onset dementia (Dad was 63 at his diagnosis).  I found a nice older rescue dachshund in Massachusetts and arranged to go pick him up.  The day before, my mom bought a leash, collar, bowls, and toys. 
My dad piled everything by the door. “Take it all back,” he said.
“Don’t you want a dog?  You miss the dog.”
“No.  Take it back.”
We decided to get the dog anyway.
The three of us drove 90 minutes to the rescue place.  We gave a donation and loaded me and the dog into the back seat. My dad kept turning around to look at the dog on the way home.
“Can I pet him?”
“Yes, you can pet him.”
Nothing about taking the dog back or not wanting a dog, of course.
He’d pet the dog, stare at him, stare at me.  Finally he said, “That’s a nice dog you have there.”
“That’s your dog.”
“My dog?” His whole face lit up.  “My dog?”  He was like a child at Christmas.
When we stopped to walk the dog at a rest stop, my dad couldn’t stop petting him. 
“Do you want to sit in the back seat with him?”
“Oh yes.”
All the way home he hugged that little dachshund.  When he was dying a year later, I brought his dog to him.  He had been unresponsive for days, but he moved his hand and put it on the dog’s back and kept it there until I took the dachshund home.
My favorite memory of him is when he was looking out the window at Mom’s flower garden, where beautiful butterflies fluttered among the colorful blooms.  He pointed and said, “look at them swim!” because he had forgotten the word “fly.”  He loved butterflies and I dearly hope that wherever he is, he is swimming with them right now, and that he is glad that when we remember him, we laugh.

dementia patient hit by train

The first time my dad went missing, he was really lost.  The second time, though, he was angry.  He was going to go walk in front of a truck.  He wouldn't get into my car (once he was located) and it took a police officer to get him into a vehicle and home.
It's really hard to judge how much people with dementia retain.  The last time I saw my dad before his catastrophic head injury, he surprised me by hugging me and saying he loved me.  Did he know who I was that day, or was he just happy "that girl who helps me" came to visit him at the nursing home?  I'd like to think it's the former.  In that situation, we all hope there was a spark of recognition there, just for that moment.
We'll never know what was in this dementia patient's mind when he managed to escape his nursing home and walk into a moving train on Saturday night.  The unidentified man, in his 70s, was not even reported missing by the nursing home until an hour after he had been hit by the train.  Who knows how long he was wandering outside in Canada in February.
Police said the train engineer sounded the warning horn, but the man continued to walk toward the train....(T)he man was conscious, breathing and talking when first responders arrived.

Mighty fine reporting there.  Conscious and breathing?  Talking and breathing?  I think the breathing is a given when someone is conscious and speaking.
The man is now in the hospital with undetermined head injuries.
I'm trying to envision this.  Was he walking down the tracks, directly at the train?  Was he walking perpendicular to the train, toward the side of it?  Another article says he was walking down the tracks.  That train engineer must have stood on the brakes not to have completely taken the old guy out.
The nursing home doesn't seem to be too broken up over one of their dementia patients, who should have been in a locked, alarmed ward, wandering off and almost getting killed by a train.  There's no mention of any family, unless the "unidentified" part means the family hasn't been notified yet.  The second article I found was only a few hours old and still says that.
I don't understand how, in the technologically advanced 21st century, how an old man with an addled mind managed to escape.  How difficult would it be to install, at every exit, RFID readers that also required a code.  If a patient learns the code, she still hasn't got the card, and if she's stolen a card, she (hopefully) doesn't have the code.  Employee's card is missing, immediately remove that card's number from access.

RFID chip and grain of rice

You can get something that works in reverse as well--you can get it for cat doors.  The cat door has a chip reader and your cat wears the chip on its collar.  Any animal without the chip can't enter.  So only your cat, not your neighbor's cat or a raccoon or a skunk or a family of hungry rats.  The one I linked to even works off the animal's already embedded RFID chip.  (Because if you love your pet, you'll chip it at the same time you get it fixed.) 
The embedded chip is the size of a grain of rice and there is no reason that it couldn't be embedded in a person.  They aren't tracking chips (not yet anyway) but they would work for doors.  I know Bible lovers think RFID chips are the mark of the devil but they need to get over themselves.  The first time a child or a mentally handicapped person or a dementia patient is found because of a microchip, their tune will change.  One would hope.

Screen print of first article.  Screen print of second article. RFID chip

5 years

Five years ago today, my dad died.  He was in one of my dreams the other night and I got to hug him.   It's taken a long time to feel really okay about all this.


(revision:  I wrote this when I was terribly ill, which accounts for the fact that it's actually been SIX  years since he died.  Leaving it as-is.)

Chicken Soup for the Soul; Living with Alzheimer's and other Dementias

I just submitted a story about my dad to the new Chicken Soup for the Soul book, which is dementia/Alzheimer's themed.  I'd like it to be in the book, of course... but if it doesn't make it, I'll post it here.  Wish me luck.

Alzheimer's Aunt: A diagnosis

Almost two years after Alzheimer's Aunt started showing signs and symptoms of being extremely ill, something has finally been done.

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Before I explain that, I want to tell you about my last major encounters with her and her illness.  I haven't been writing about her much because frankly it makes me so sad and angry and it's all so pointless when nothing is being done.
Alzheimer's Aunt went on a trip, by herself, cross country, early this summer.  Direct flight (the thought of her trying to change planes is terrifying).  I ended up going along to navigate when one of my cousins drove her to the airport in New York City.
The night before, I talked to my cousin.  "Are we making a Dunkin Donuts run before we pick her up?"  "We'll make it after."  "Um, do you think that's a good idea....?"  They don't like anyone to point out the vomiting so I tried to imply it delicately.  "Oh, she won't eat, it will be fine."
6:30 a.m. we picked her up and headed to the donut shop.  Of course she wanted something.  I stayed in the car with her while my cousin went inside for everything.  He came out with my muffin and her donut, and our waters, went back in for his coffee and hot sandwich.   Alzheimer's Aunt opened the bag with her donut in it and held the donut over the top and proceeded it eat it in the most disgusting manner possible, literally shoving it into her mouth and chewing loudly with her mouth open--nom nom nom.  She ate the whole donut before my cousin came back with the coffee!
We drove out of the donut place heading for the highway about a mile away.  About 150 yards from the Dunkin Donuts, she started to hiccup and choke.  We gave her water and pretty much immediately after that she spewed vomit all over herself and the passenger side of the car and the console of the car.  I was in the back seat looking at the rest of my muffin and thinking how good of an eating deterrent Alzheimer's Aunt is. The car filled with the smell of vomit.  I wanted to cry.  We hadn't even left town yet.
My cousin said, "Don't you think you should go home and change?"
"Oh, should I?"
No, we want to sit in the vomit-filled car with you, while you are covered in vomit, for a 100 mile drive to the airport.  Then some lucky people will sit next to stinky puke-covered you all the way to California.  That will be a real treat for them.  At the other end, your friend will pick you up and you'll get vomit in her car too and won't she be happy to see you then.
She finally agreed to go home and change while we mopped out the car, gagging.
The trip to the airport started 40 minutes late because of this.
All the way there she talked about things that happened over 40 years ago and neither of us cared.  I just sat in the back seat checking WAZE for traffic jams while my cousin used a regular GPS unit for navigation. 
By the time we go to the airport, I really had to use the restroom.  My cousin was extricating Alzheimer's Aunt from the car with all her luggage.  She moves in slow motion.  I was hopping--I need to pee!--while she stood there confused looking at her bags. Finally we started to walk to the terminal.  We had to walk through a glass hallway, then across a street.  I was across the street and at the door (and remember that I walk slow because of a chronic leg problem) and they weren't even into the glass tunnel yet!  Finally they were close enough for me to shout that I'd meet them at the bench by the door after I used the bathroom and I ran before I embarrassed myself.
The bathroom was in the opposite direction from where they went so it took me a few minutes to get to it. When I was done--ahhh--I went to sit at the bench I'd designated.  My cousin wasn't there.  Curious, I walked into the terminal a little way and there they were at the desk with the bags.  An argument was clearly in progress.  I threaded through the ropes past people.  Alzheimer's Aunt was clutching her ticket and other papers asking the same questions over and over.  The attendant looked like she didn't know if she should laugh or cry or get angry.  My cousin wanted to walk her all the way through security and to the gate but without a ticket that's not allowed.  But just as clearly, there was no way she could do it alone.  The gate was a high number, in the 20's, which means she would have to walk  more than 10 gates length of hallway to get to the correct one.   Finally they called for a wheelchair.  A nice man came with the wheelchair.  Alzheimer's Aunt stared at it.  "I don't know," she said, "I don't know how to do this, I haven't been in a wheelchair since I had my children," and stands there clearly vacillating on what to do.  Finally the guy grabbed her shoulder and kinda pushed her down into the chair.  It's a chair.  You sit in it.  How can this be puzzling?
My cousin had to give all kinds of instructions to the guy with the wheelchair.  I was thinking, "he's going to walk her to the gate, dump her in a regular chair, and leave her.  He's not her keeper." but whatever.
My cousin was so exhausted from the long drive and everything that we just sat there on the bench for about 15 minutes not moving.  He was almost crying, saying that he didn't know how she was going to make it through the flight and other airport alone.  But still, not admitting that MAYBE SOMETHING IS WRONG and of course I have to keep my lip zipped and cannot comment or make suggestions.
My hope, no matter how mean, was that in California she would display enough problems that her friends and family out there would demand something be done.
But two weeks later after she was home, no one was saying or doing anything different.  I shrugged, gave up again, went on with my life for a couple more weeks.
Then I got a call at 9 a.m. to go over there and check on her.  I refused.  "She could be dead!  You have to go! She hasn't answered the phone in two days!"  "I don't want to.  She won't answer the door for me anyway."  "You have to!"  "Okay, say I go there and she doesn't answer the door.  So then I call the police and they break in.  If she's okay, they see the hoard and report her.  If she's not, now she's dead and then what should I do?"  "Oh no don't call the cops if she doesn't answer, call me back."  I went there, banged on the door (no doorbell), yelled, knocked, generally was obnoxious.  No answer.  Took out my phone: "she's not answering, was here banging for 10 minutes, your move."  That cousin tapped another cousin to "rush over".
I had a lot of errands to run (which was one reason why I didn't want to waste time on Alzheimer's Aunt's false 4-alarm emergency) and I went and did them.  On the way home, I decided to drive by and if my other cousin was there, to stop in.
No one was there, nothing looked different.
When I got home, I called the first cousin and asked if the second cousin had found Alzheimer's Aunt okay in the house.   The answer?  "She's going over around 6 pm."  Wait, but it was urgent that I drop everything at 9 a.m. and go?  I felt very angry.  Walked away from the situation again.  Found out later that she did indeed hear me knocking but "didn't know who it was" (me yelling "It's Bert!" perhaps should have clued her in?) so didn't answer.

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Then last week, everything changed.
First, somehow, some of her local friends got her to a doctor who decided she needed a colonoscopy and upper GI endoscopy to find out what was happening with the vomiting.  I was floored when my cousin told me.  Apparently she'd been vomiting copiously when out with those friends and lying to them saying she didn't have that problem anywhere else.  She said the same thing to the people in California and of course said it to family here.  My thought is that some of the California friends called the Connecticut friends and spurred them into action.  Of course me suggesting that same course of action months ago (look back through my blog and see!) was derided and met with hostility.
I've had a colonoscopy and they aren't fun--but the day before is much worse, when you have to not eat solid food all day and have to drink the 2 gallons of snot-like concoction.  I vomited half that stuff up, what was she going to do?  My cousin said, as if it made perfect sense, that she had to call her mother at 6 a.m. to remind her not to eat that day and continue to call her all day and tell her not to eat and then at night call her about mixing and then drinking the purge.  Any normal person would put a note on the calendar; who needs to be called all day to be told these things?  Again, I bit my lip.
She also had another appointment with an eye specialist.  Don't forget her being blind!  Although the eye doctors all said her vision was perfect, she complained constantly that she couldn't see or read.
Monday one of my cousins called her to remind her that the eye appointment was that day.  Alzheimer's Aunt was even more confused than usual, arguing that it was another day (the day of the colonoscopy) and also slurring her speech.  Alarmed, her daughter raced over there (at least she didn't call me).  One of her friends happened to be in the area and dropped in on her at virtually the same time.  They piled her into a car and drove her to an emergency clinic, where they took one look at her and put her in an ambulance.
She had had a stroke.
When she got to the hospital, finally she had the CT scans and MRIs I'd been saying for TWO YEARS that she needed, since she collapsed.  And, amazingly, the scans showed that she had been having strokes all this time.  And the brain damage was in her visual cortex causing her blindness.  And one of the signs of stroke is vomiting.  And weakness in the legs.  And mental confusion. (see handy graphic)

Now her family springs into action.  They have to be at the hospital with her every minute of every day.  Her copious vomiting is rebranded as "spitting up." (I refuse to say it and get stared at angrily every time I say "vomit" and corrected in a frosty voice "Spitting up.")
Now the house is going to get cleaned.  Now she is going to move out.   Now they all admit how worried they've been for 2 years but didn't know what to do (and wouldn't listen to me).  I really want to be a total bitch and scream I TOLD YOU SO but I won't.  What will it accomplish, nothing.
Now she needs speech therapy and occupational therapy and physical therapy and has to go into a rehab facility for 100 days.  Now she can never live alone again.
Except.
That her family quickly went into a weird denial again once she got into the rehab facility.  "Well the therapists say she could 100% regain function, maybe she can go home."  And cleaning gets put on hold.  I ask, "but isn't some of the damage from two years ago?"  "They said they can fix it all."  Glare.  How dare you, puny cousin who knows nothing about anything, say different.
One of my cousins actually said "I was secretly worried about dementia but she just had a stroke, thank god."  I said, "Brain damage from a stroke is called vascular dementia; she did and does have dementia."  Oh, the looks!  The anger!   I just have to be the one who says dementia instead of stroke, who says vomit instead of spit up.
Right now the family's reaction is schizophrenic.  On the one hand, it's all "She had a STROKE, she can't be LEFT ALONE."  On the other hand, "She will be JUST FINE and HOME in NO TIME."
Cognitive dissonance at its finest.
I tried to explain that the nursing home doesn't want family members with her for every minute of visiting hours.  I paid, with my own money, for an MP3 player and loaded it with books and pointedly said, "Now she has something to occupy herself so she doesn't have to be bored and people don't have to be with her, entertaining her, at all times."  They actually said to me that they thought the audio books would DISTRACT her from getting better and they didn't want her to have them. But she was so happy she almost hugged the player.  I fully expect to find it smashed or lost within a week.
Some of my cousins and I went out with some friends right after it happened.  These friends recently had a close family member have 7 strokes in 2 weeks and also had a grandfather in a nursing home for 22 months.  The talk was of Alzheimer's Aunt.  I spent the meal drawing on my napkin and chewing my inner cheek as they said things like "Hindsight is 20/20"  "who could have known something was wrong?"  "if only she had a CT scan two years ago" and other platitudes.  I said all that, all along, and was silenced all along, and now they pretend I never said a word.
Alzheimer's Aunt had to spend a certain number of days in the hospital before she could get transferred to a rehab facility.  A local one agreed to take her and she was moved there a couple of days ago.  Family in constant attendance at hospital and now nursing home.
I got woken up just before noon today with a screaming phone call. "No one was there with her all morning!  Why aren't you there?"  "I'm asleep, I was up late, and I'm about to go out with my mom and I was there until after 7 p.m. last night."  "Well you better be there by 3."  "I won't be home by then."  "She can't be left alone!"  Yes she CAN, she is in a NURSING HOME with professional staff all around her, she is not alone!  If you expect her to go live alone again, you need to give her some space now.
So that's the status as of today.  I'm here writing this and not visiting because I am an evil selfish bitch (yes, I was told that more than once) and everyone associated with Alzheimer's Aunt hates me because I don't do my share (she has several children and direct nieces and nephews, and I'm not one of them, btw--I'm another layer out) and I'm so mean and bossy always telling them what to do.  The fact that I was RIGHT all along, that she needed a brain scan, is ignored.  
I was hoping that once she was diagnosed things would calm down.  But her family seems to thrive on drama. 
(image source)

Silver alert for missing man brings back memories

Friday everyone around here was posting on FB that an elderly man, age 67, was missing from Southington, CT, a town about 20 miles away.


(Harold) Smith's family members are not sure what he was wearing when he left home, but he almost always wears black sneakers and white socks, according to police.
....
Smith cannot read or write, but he does recognize his name, according to police, and frequents the downtown Southington area and Plantsville Center section of Southington.

Although no where does the article say he has dementia, from living with a dad and aunt, I can read between the lines. Earlier versions of the article described him as very "approachable" but for some reason that's left out of this one.
I was ready to drive to Southington myself and start looking for him.  He's the same age as my dad was when he died and in the picture he's wearing a green shirt.  Brought back so many memories of the two times my dad wandered off and how both times it wasn't the cops who found him but ordinary people who were looking like my mom's neighbors.
It made me sad that he had been missing since Wednesday and people only started posting his picture on Friday night.  Maybe they were hoping he'd turn up.  Maybe his family was ashamed.  I don't know.
Yesterday I was checking on and off all day to see if he'd been found and finally the news came that he was okay.  It's been so warm, which is just as worrisome as the freezing cold day my dad took off.  I was thinking they'd find him in a ditch or something awful.

Harold Smith, 65, [sic] was found in the area of Blacks Road in Cheshire, after he approached a farm worker on Sunny Acres Farm. He told the worker that he had run away from home.... Smith told police that he left home and walked down the linear trail to Cheshire. He left the trail and then walked down Route 10 until he reached Blacks Road and entered a field on the Sunny Acre Farm. Smith found an unsecured abandoned vehicle and sought shelter inside it for three days. He then approached the farm worker after seeing him in the field. 

Looking at a map, it seems like he wandered at least 5 miles (by normal roads) into the next town.  I can only imagine his confusion as he sat in some junky old car for three days.  Was he angry at his family, hence the running away? 
I hope the Smith family hugged him and loved him when he was returned to them and they didn't yell at him.  I also hope they investigate some kind of GPS system for tracking him and continue to let him take walks, as it seems like he likes to do.

full copy of missing article
full copy of found article

August equals Alzheimer's Anniversaries

August is a month of anniversaries relating to Alzheimer's for me. My dad's birthday. The anniversary of when his aunt died of dementia, right after my dad got diagnosed. My parents' wedding anniversary, and also the anniversary of the next-to-last time he flipped out (the next one being the one that got him removed from the house a couple of weeks later). Also the anniversary of when my dad's mother died, although she didn't have dementia that I know of, I believe she died of cancer (never met her even though she lived 1 town away and died when I was 16--long story). I lost a couple of pets in August too, my beloved black cat Zen and my sweet rainbow lorikeet Gwennie.  
So August, for a long time, has not been a happy month.  And when I was a child, before any of those bad things happened, it was dreadful because it was the end of summer.
August is a time of reflection for me, to remember all this stuff.  There's nothing to learn from it really, nothing to gain except making myself sad.
And because I've been thinking about my dad a lot, since it's August, it's not surprising that he popped up in a really weird dream the other night.  In the dream he came back to life, and he wasn't so dementia-y (is there such a word?) although he wasn't 100% back to normal, and he lived a few more years.  I was walking up Route 5 going from car dealership to car dealership telling everyone that my dad was back alive again.  Because it did seem like he had died and been cremated but somehow came back from that.  And in real life, there is just about every car brand known to man available on Route 5, from BMW on the North Haven line to Cadillac and Hyundai on the Meriden line, and my dad worked for a lot of them in his 40 years in the business.  Why I would walk that 10 mile line instead of calling people is another dream mystery!  Then he died again, in the dream, and we had to hold his memorial service all over again. 
And I woke up thinking, I never saw my dad dead.  When I got to the nursing home his body had been removed from his room, and if it was still there (I imagine it was, it had only been an hour or so) they didn't offer to show me.  At the funeral home that afternoon, the director went and got me my dad's Alzheimer's alert bracelet, and it was cold like it was in a fridge, but again, I didn't see him. 
Now I start getting all paranoid.  Did my dad really die in 2007?  Even though his bed was empty at the nursing home and he was in it 15 hours before, unresponsive, maybe they had moved him and it wasn't him who died...and he's been alone and unvisited for 5+ years in the nursing home...
Gods, how awful would that be?  I can't even imagine it.
I think it's a common wish-fulfillment kind of dream.  We're getting to the time that my dad SHOULD have died.  He was diagnosed in 2004 and they said he'd live 9-11 years and that was 9 years ago.  He should have still been with us.  And maybe if he hadn't hit his head twice, he would still be here, who knows?  Or he might have killed my mom or someone else.  No way to know.
If there are other dimensions constantly spawning off, the lands of opposites, maybe in some of those worlds my dad's alive and okay.
And maybe he's just in the Elsewhere Bar, having a birthday beer.
Happy birthday, happy anniversary, wherever you are, Dad.

Invisible Illnesses and Special Treatment

Two kinds of posts endlessly circulate on Facebook.  Both of them are quite whiny.  This one popped up yesterday and is representative of the Type 1 post, INVISIBLE ILLNESS and is presented with odd spellings and punctuation exactly as everyone else posts it:
"Ignorant people can be so cruel!! I'm posting this because recently I have been mocked and laughed at for things beyond my control... I have three of these illnesses as does some of my friends.... Not one of my Facebook friends will copy and paste (but I am counting on a true family member or friend to do it). If you would be there for me no matter what then copy and paste this. I'm doing this to prove a friend wrong that someone is always listening. I care. Hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (IBS, Crohn's, PTSD, Anxiety, Arthritis, Cancer, Heart Disease, Bipolar, Depression, Diabetes, Lupus, Fibromyalgia, MS, AS, ME, , Epilepsy, hereditary angio edema , AUTISM, Borderline personality disorder, M.D.,D.D.D., CFS, Histiocytosis,O.D.D, A.D.H.D, RSD, PBC,RLS etc.) Never judge!
I would add Alzheimer's to that, as early stage AD is also "invisible" (honestly, what does that even MEAN)?
And then we get the Type 2 post, the I'm not special enough one:

So first you are complaining that you have an INVISIBLE disease (or your child does) and then you are complaining that your invisibly diseased child (or self) isn't getting special treatment?  Honestly it's one or the other.  If I see a kid screaming and losing it in public, I don't worry that the kid has an invisible disease, I assume the kid is a brat.
In my dad's early stages of Alzheimer's, he appeared perfectly normal and most of the time he acted that way.  We didn't say anything to anyone about his disease unless he started at act weird.  We didn't want people pitying him for no reason.  But once something kicked in and his behavior went a little sideways, we'd simply explain, "he has Alzheimer's" and most of the time people were understanding.  Is it embarrassing for your grown up father to throw a temper tantrum in a restaurant? Of course it is, and of course people stare, and what do we do?  Not get pissed off and passive aggressive toward those people--we removed my father from the situation.  We never expected anyone in public to simply "deal with" my dad in a full-blown Alzheimer's rage.  We also did not want anyone trying to "help" except if they were calling the police (although one time we asked someone to call the police and that person flat-out refused).
I guess I don't understand the combination of "invisible" diseases and the sense of entitlement it seems to entail.  If your disease is invisible, that means no one knows you have it (unless you are trumpeting it in every passive-aggressive status on FB), so why should anyone have to be "understanding" or "kind" to you?  Is your disease manifesting in some way that requires you to need special treatment? If so, it's not INVISIBLE. 
What I'm trying to say is, pick one.  Either you have something wrong with you and you need no special treatment, or you do need special treatment.  You can't have it both ways.  You can't also expect the general public to be able to diagnose your "invisible" disease at a glance and know if you need assistance and provide whatever it is you think you are entitled to.
I will always offer to hold the door for someone in a wheelchair or who is using a walker or cane (I was raised right, after all) or to help an elderly person put groceries into their trunk but I can't read your mind and know you can't open the door yourself because of your invisible disease and if you're going to get pissed at me because of that, that is your issue not mine. 
This weekend I had a party and my new friend came with her husband who is in a wheelchair.  We were able to easily rearrange things so he could be comfortable and yet still be part of the group.  I had food without wheat for my gluten intolerant friend, meat without salt for my friend who just had a stroke, grilled chicken for friends on high-protein diets.  Because I knew about these things in advance, it was simple to do. But if my friend had arrived with her wheelchair-bound husband with no warning and gotten angry that the party was up several steps on the deck, is that my fault or hers for not telling me her husband is handicapped? 

bad burn for my mom :(

I took my mom out yesterday for her birthday and she mentioned that her internet connection was down.  Which of course was my fault because I was tinkering with her Wifi on Sunday (which isn't the connection she uses for her computer--she uses a wire right from the modem).  So I felt bad, which was her intent, and today I stopped by in the midst of errand running to see if I could figure out what was wrong.  Turns out I did nothing wrong and it was the modem and I had to call AT&T to get talked through fixing it.
While I'm on speaker phone, my mom casually says, "Hey look at this," and shows me her arm.  She was wearing a white long-sleeved top.  Under the sleeve was a bandage--on her whole arm--and it was oozing fluid through the bandage and through the sleeve.  I was dumbfounded.  She said, laughing, that she put a hot cup of coffee on the couch arm and the cat knocked the whole thing over her arm and she didn't want to bother me.  So she went to see her friend who's a CNA in the morning (happened at 8 last night) and her friend wrapped it up and they put over-the-counter salve on it. 
Her CNA buddy should have known better.
As soon as the modem was fixed, I made her go to the emergency clinic.  She unwrapped her arm and showed them.  It looked like raw meat from just under her shoulder to her wrist, all around the whole arm.  She said it didn't blister, the skin just "fell right off."  Apparently the only bad burn is a blistered one?   Clear fluid was just weeping from it steadily, literally dripping from her elbow and fingers like she was standing in the rain--they had to give her one of those diaper-like pads to put under it to catch the fluid.  Honestly it was completely disgusting and there is no way if that was my arm I wouldn't have been at the ER or clinic as soon as it happened.
I told her the doctors were going to give her antibiotics, maybe a shot, most likely a pill, and prescription burn cream.  The over-the-counter burn cream is for when you have a little 1st degree burn that's a couple of square inches.  Honestly her burn is square FEET and third degree.  
I wish my grandma was still alive because she would have called me, like she did when the dog attacked my mom and she drove herself to the ER last summer.  Instead I found out by accident.  If I hadn't gone over spontaneously to fix the computer, I never would have known and she wouldn't have sought treatment.
And my mom is sane.  She hasn't a hint of dementia.  I don't know what her excuse is.  Being strong and not wanting to bug someone is stupid when it comes to a serious life-threatening injury like a 3d degree burn over an entire limb!
The women in the office at the clinic were dumbfounded as well to hear that my mom thought this burn was no big deal, mouthing to me behind her back that it was a good thing I'd dragged her in.
Two doctors consulted over it.  The only good thing they had to say was "at least it's not charred."  I had to learn how to clean and bandage this oozing raw mess, twice a day until Saturday, when she has to go back and find out if she's got to go to the burn unit.  Yes, burn unit.  And she wasn't even going to go to the doctor's office until I forced her!
We had to get prescription cream, and not a tube of it, but a TUB, and prescription pills.  Then we had to buy all kinds of bandages, gauze, tapes, and everything needed to bandage the arm 4 more times.   She kept insisting she felt fine and she wanted to take me out to dinner.  I had a run one more errand and then we stopped to eat.  She started to shake, going into shock, and we ended up getting the food to go and going home so she could take more pain killers and go to sleep. 
I'm really worried.   This is one of those times I wish I had a brother or sister to help.  I guess i should be glad my dad isn't around to see this because he'd be completely freaking out.  And he'd grab her arm, I can't imagine how bad that would be.  I am shuddering to think that I have to touch it, clean it, salve it, gauze it, bandage it, then sleeve it 4 times in the next two days. 

my cat and my dad

My rescue cat, Romeo, was doing something today.  I don't even remember what it was--begging for food probably because he's on a diet.  But for some reason I thought about my dad and tried to remember what my dad had to say about Romeo. 
Then I realized, he never met this cat.
And that made me feel really, really sad.
I got Romeo almost 2 years ago shortly after his 9th birthday.  He had had, as well as I can tell, 5 homes in the last year (before that, 1 home).  He was afraid of everything, with severe PTSD to the point where he had to be sedated for six months or have a fear-induced heart attack.  He's got some poor litterbox habits (hence the "shaming" picture).  But now that he's figured out we are keeping him even if he has litterbox issues, he is really sweet and loving and adorable and I am totally his "person" and he follows me around and constantly rubs his head on me so the other cats know I am his. 
I think my dad would have liked him.
But realizing that, although Romeo is 11 years old and dad's been gone only 5 years, they never met, made me think of everything else my dad will never see and never know.
That made me alternately sad and angry.  I don't MISS my dad much anymore, but when I do, it always knocks me for a loop.  And I have to wonder if I'm angry because he died or if I'm angry at how he died.  Would I have felt such anger, started this blog, if my dad had cancer, or died of a heart attack (what probably would have happened without the Alzheimer's, since he had at least 1 heart attack that we know of while he had dementia.  I don't think so.

alternate universes, or the "maybe" game

For some reason I started thinking about alternate universes today.  Forgive my lack of scientific words, but there is a theory (not science fiction or fantasy, but a real actual scientific idea) called a Multiverse, that posits that everything that ever could have happened, did happen, just in some other world that lies parallel to ours.  That makes me wonder if that place (those places) are the afterlife we dream of and hope for.  In some of those worlds:

• My dad is still alive and clear-minded and we visit Aunt Bert every Friday because she is also alive and clear-minded at 94 years old.  
• My grandpa didn't die of cancer 25 years ago.
• My grandma didn't have a stroke a year ago.  
• I am thin.  
• I am a paleontologist with a dinosaur named after me and I have held the claw of a raptor and the tooth of a t-rex.
• I have run my fingers through a tiger's fur.  
• I have written best-selling novels and I hobnob with famous writers.  
• I am working with elephants so I can clone a mammoth.  

That is something that can sustain me.  Every once in a while, I get a hint of cross-over, I feel like just there, so close I can touch her, Another Bert has done something amazing, and I get an echo.   Maybe on days that I feel sad for no reason, something bad has happened to one of my Others.  My pet lived, but hers died.  She has lost something that I got to keep.  And I have lost so much, and perhaps they kept it.  (They can all keep the weight I've lost, that's for sure.)
I am reading Terry Pratchett's newest book, Dodger.  To think this came out of the mind of someone who was diagnosed with Alzheimer's 5 years ago is amazing.  I know he has some help writing now, but his voice is still strongly there.  And maybe, for this world, the trade-off was my dad died and Sir Terry got to live.  Maybe in another world, my dad lived and they lost Terry Pratchett. 
We should know all this, shouldn't we? We are living in the future, aren't we?  The original Cyberpunk game was set in 2013 (then moved to 2020 and now it's being reborn in 2077).  1984, 2001, they were all supposed to be amazing futures.   Cell phones are amazing, the internet is incredible, but where are the flying cars? Why don't we live on the moon?  Why don't I have a port in my head to connect my computer?  Why don't we have awesome cyborgs and laser weapons?
Why can't we see into those other universes?  Just to KNOW, not to communicate.  Even if he's dead now of a heart attack, to know that somewhere my father didn't suffer and die as a virtual vegetable.  That my garden is beautiful because my grandpa lived long enough to help me with it.  That maybe everyone I know who is boring and ordinary, like me, is extraordinary somewhere else, even if it's only on one world out of a million.
Maybe there are other worlds where dementia and cancer don't exist or have been cured.  (I imagine they are even more grossly overpopulated than this world, though.)  Where there are no Alzheimer's blogs or awards for them because they aren't needed.
And maybe in all of them, my dad is dead.  I don't know if I'll ever know.  But I like to think that it's possible he's still there, somewhere, even if it's just at the Elsewhere Bar.
(image source)

two more awards, need more votes!

Healthline

I'm up for 2 more awards for this blog. For Healthline's Best Blog of 2012 contest, you can vote EVERY DAY on both TWITTER and FACEBOOK.  Ends February 15, 2013
For the Senior Homes Best Senior Living blog (which I was also nominated for last year) you can vote ONE TIME through FACEBOOK and once through GOOGLE+.   I'm not sure when the voting ends so do it soon!

Xmas and Alzheimer's Aunt, and more awards

It is interesting to me to examine the difference in my feelings toward my dad's illness (absolutely Alzheimer's--hey someone should photoshop an Absolut ad for Alzheimer's) and toward my aunt's illness which may or may not be some kind of dementia, Alzheimer's or just generic insanity.   Of course, she is not my dad (or my mom) so I'm more distant from the problem, and I was never close to her even before all this.
But I think the biggest thing is her children's inability to DO SOMETHING ABOUT IT.
I saw Alzheimer's Aunt (AA) at my cousin's house on Christmas Eve.  There was a mix-up over food; I was incorrectly told there would only be snacks while we opened gifts, so I ate lunch first, and then got there to discover a huge meal laid out, so the fact that I didn't really eat anything caused some tension.
I got stuck next to AA on the couch during gift time.  We were all drinking eggnog and being festive.  AA started gagging and puked her eggnog back into her glass and then set it on the table beside my glass.  Yes, a glass of puked-up eggnog is just the thing on a cold holiday evening.  I had been enjoying my eggnog until that point. After that, I just wanted to go home.  She insisted on playing a holiday trivia game from the 1970s and was angry when none of us could answer any of the questions or frankly, cared.  She spent about 15 minutes telling a long rambling story about something that happened 40 years ago that had no relevance to what was going on currently.  She seems to have no connection to the here-and-now anymore, and when she tries (see below), she fails.  I know slipping in time is an Alzheimer's thing, although my dad never did it.
Then Alzheimer's Aunt tried to talk to my cousin's boyfriend about a TV show she saw that she thought had something to do with the place where he works. 
"What station was it on?" (he is trying to be polite)
"I don't know." 
"What was the name of the show?"
"I don't know."
"What day was it on?"
"I don't know." 
"What else was it about?"
"I don't know.  But have you seen it?" 
"Uh, I don't know?" 
I felt so bad for him.  Basically that's her conversation:  old stories that we've heard before, from the 60's mostly, and that we don't care about, or her trying to explain something she saw on TV that she didn't understand and can't remember.
We tried to play a word game that involved cards with big letters on them (you made words from the cards in your hand) and even though the letters were several inches high in the middle of the cards, she complained constantly that she couldn't read them.  I ended up quitting the game halfway through out of sheer annoyance.
When it was time to leave, of course, just like last year, AA wasn't capable of carrying her own bag of gifts to the car and everyone had to rush around babying her.  My cousin, whose house we were at, said "Watch the steps" as AA left.  AA walked outside and promptly tripped over the welcome mat.  My cousin said, "I told you to watch out!" and AA replied, "you said the STEPS, not the RUG."  Really? 
The next day Alzheimer's Aunt came to my mom's house for the family Christmas dinner.  I had invited some friends as well, one being my friend who lost her mom to Alzheimer's and who also just lost her elderly aunt, leaving her free of sick old ladies to care for, for the first time in many years.  My friend majored in psychology and works at a rehab facility that also has group therapy for all kinds of mental illnesses.  Point being, she knows it when she sees it.
Partway through the meal, AA started hiccuping.  That is the signal that she's going to blow.  We managed to talk her into actually going into the bathroom rather than spewing vomit all over the table like she usually does.  After a few minutes in the bathroom, she came back in and started eating again.  I might note that there was never a sound of running water so she didn't wash her hands or rinse her mouth.  As usual (like the night before) her hygiene was severely lacking.  Her breath smells like death.  Her hair isn't clean or brushed.  She sleeps in her clothes, wearing them for days, and they stink. But she pours on cheap perfume like that will hide the rest, and it only makes it worse.
After the meal, I went to use the bathroom, and discovered that Alzheimer's Aunt had vomited all over the floor and the wall and just left it there, no attempt to clean it up. (Makes me wonder about the state of her bathroom, but then I decide I don't want to know.)  I cleaned it up as best I could but I was really pissed off.  She could have said something to my mom, or asked for a roll of paper towels or something.  Everyone was joking about how long I took in the bathroom and I just said, "Oh, I ate too much" but I really wanted to say "I was cleaning up puke from everywhere!  It was DISGUSTING."  Privately a bit later I told my mom what had happened and she was pretty angry too.  She thanked me for trying to clean it up. (And after we left, she said she scrubbed the whole bathroom with bleach because she didn't know where the puke had been.)
My friend said that whatever else is going on, whether it's dementia or Alzheimer's or something else, that Alzheimer's Aunt is severely mentally ill.  She was appalled at the whole puking thing.  So I feel a little vindicated, that it's not just me.
AA's stories keep changing.  She's blind, but she's reading a book. Then she wants someone to take her to  Barnes and Noble because she can't drive, only she IS driving because she talks about going somewhere by herself.  My mom drove by her house and said AA had backed the car in, missed the driveway, was half in the yard, in a bush, almost against the house.  I saw the car parked a similar way. She says when she goes out that she "picks a car and follows it" presumably hoping it's going where she is?  That could be why she gets lost all the time. She "can't see" her phone so she dials random numbers and talks to strangers.  We switched her plan to unlimited minutes yet she ran out of minutes somehow.   She said she paid the bill.  But she didn't.  I guess she thought having a prepaid phone meant you just pay once?  No clue.
The bottom line with Alzheimer's Aunt is this: In the last year she has lost an alarming amount of weight.  She looks sick, not healthy--her skin is grey and sagging.  Her hygiene has deteriorated to the point of not having any.  She vomits uncontrollably when she eats.  She claims to be blind although eye doctors say her eyes are fine.  She makes no sense when she talks.  Her doctor gave her a partial dementia test, which she seems to have failed but he made excuses for her wrong answers so she did not get any kind of brain scan to look for damage or disease.  Her family will not test her for any kind of mold toxicity because "the doctor did a regular blood test and she's ok" even though a mold test is a specialty test. AA refuses to see any other doctor that might be competent and actually diagnose her and give her a treatment plan.
I alternate between feeling helpless and feeling very angry.  Whenever she does anything stupid or gross or inappropriate I have to literally bite my lips to keep from speaking up.  My friend, who has finally witnessed Alzheimer's Aunt in action, said that I'm not wrong to feel this way, but she's not my parent and her own children are in willful denial about their mother's poor state of health.  Between whatever's going wrong inside her, and the unhealthy hoarder environment of her home, she's going to die.  And she used to be a nice lady, a smart lady, someone who was interesting to talk to.  It's such a waste.
I loved my dad and his illness was a waste too.  But at least we fought it, we took him for treatments, we enrolled him in clinical trials, we took him to various doctors.  We didn't sit back and say "Oh, that Bob, he's always been a little strange" and just let him die.

---

Healthline

Now onto something good. I'm up for 2 more awards for this blog. For Healthline's Best Blog of 2012 contest, you can vote EVERY DAY on both TWITTER and FACEBOOK.  Ends February 15, 2013
For the Senior Homes Best Senior Living blog (which I was also nominated for last year) you can vote ONE TIME through FACEBOOK and once through GOOGLE+.

5 years gone, and Alzheimer's Aunt strikes again

This week was the 5 year anniversary of my dad's death.  He's been gone longer than he was diagnosed with Alzheimer's.  I'm not really any sadder than usual, except when I re-watched the episode of Walking Dead where Maggie tells her dad (who has been bitten by a zombie, and his leg cut off to try to save him) that it's okay for him to die.  The specifics of the speech, of course, weren't equal to the one I gave my dad, but it was 5 years ago to the day that I gave "it's okay to go" talk to my dad, and there I was watching it on TV.  I did cry, I admit.  I posted about it on Facebook and one of my friends talked about how hard it had been to give that talk to her mom when she was dying of cancer.  You have to say all the usual things.   
I love you.  It's okay to go.  I'll be fine.  We'll all be fine.  There won't be any more pain once you leave.  I will miss you every day, but it's better for you if you go.
My mom and I went to see the movie Lincoln and his last lines are something like, "it's time for me to go, but I'd much rather stay" and he goes off to the theater.  I'd like to think we'd all rather stay, given the choice, but with if your life is full of pain and suffering, sometimes it is time to go.
Another Walking Dead moment (it's a great show) this season was when Hershel (recipient of the zombie bite and the "it's okay to go dad" speech several episodes later) inexplicably asks his daughters to sing "The Parting Glass."  I have read it, in poem form, and it's dreadfully sad.  Why you'd want to hear it sung during the zombie apocalypse, I don't know.  It's even sadder when it's sung.

Here are some of the lyrics. It's supposed to be a drinking song but it seems to me like a dying song and always has seemed like that:
Of all the comrades that e'er I had
They're sorry for my going away
And all the sweethearts that e'er I had
They'd wish me one more day to stay
But since it fell unto my lot
That I should rise and you should not
I gently rise and softly call
Good night and joy be to you all
Fill to me the parting glass
And drink a health whate’er befalls
And gently rise and softly call
Good night and joy be to you all
I've been melancholy all week, between anniversary of dad dying and the onset of my yearly Seasonal Affective Disorder so I'm in non-functioning cocoon form for the next few weeks.

---

Except today.  Today was special.  And last night.  I got to see Alzheimer's Aunt.  Oh how exciting.
I got an URGENT text last night at 5:30:  "You have to go to the store NOW and buy Pepsi and bring to (AA)."  Really?  Being out of soda is now a national emergency?  I replied that I could go around 6:30 as I was not home.  At 6:28 I texted my cousin to tell him to tell Alzheimer's Aunt I was coming over.  I went to the drug store AT THE END OF AA's STREET (ie, she could have walked there) and bought 4 small cold bottles of Pepsi as directed (not diet,  not caffeine free, not big bottles, not cans, not room temperature) for the outrageous price of $8 and was at her door by 6:44 pm.
And she didn't answer.
I was just about to dump the soda on the porch and go home when she finally came to the door. 
"I was going to bed because you never showed up." 
"Didn't (my cousin) tell you that I was coming over?"
"yes but not when and you didn't come immediately so I was going to bed, I couldn't wait for you anymore." 
Yet the soda delivery was incredibly urgent?  I was like, whatever, and I left, really feeling put-upon for being treated like a delivery girl and not even getting a thank you.  I expect lack of courtesy from Alzheimer's Aunt but nothing from my cousin, who claims he told his mother I was coming at 6:30 and he doesn't know why she went to bed instead.
And don't forget, Alzheimer's Aunt isn't supposed to be drinking soda, only water, and no carbs in her diet.
Today I was going to take a drive and go to a store I like that's about 20 miles away and eat lunch at a restaurant nearby that's the closest location to me.  A nice couple of hours.  Instead, Alzheimer's Aunt wanted me to go to lunch with family members.  They were supposed to pick me up after taking her to the bank at 11.  So I figure, 11:30 or so.  Then it's 12:30, and nothing, no text, no calls, no car in the driveway.  Finally I get a text. "(AA) wanted to go to the library, the liquor store, and the craft store.  We'll pick you up soon."  Really?  I love the amount of time this blind woman spends at the library checking out books and buying craft supplies she can't use.  And what if I wanted to go to the craft store, I wasn't even asked.
By the time they picked me up it was after 1 p.m. and I was hungry.  We went to a seafood place I don't like very much but I'll eat a hotdog there (it's a New England thing--fried seafood and hotdogs in a little shack).  We start eating.  Alzheimer's Aunt starts hiccuping.  I start frantically trying to cram my hotdog into my mouth because I know what's coming.  Sure enough, BLAEAGH--puke everywhere.  Down her shirt, her pants, onto the floor, her purse, the table.  Then she just sits there wide eyed while my cousins scramble to get napkins and literally clean her up like she's a baby.  (everyone in the place staring at us, of course--luckily no one sitting right next to the puke bomb) They try to get her to go to the bathroom and clean herself up but she refuses.  I handed the rest of my hotdog and my fries off to my cousins and just sat there staring silently at the wall until it was time to leave while everyone else FINISHED THEIR FOOD (and mine).  I don't know how they do it, once the puke starts I can't eat anymore.  One of my cousins suggested, mildly, that Alzheimer's Aunt talk to her doctor again about the vomiting and AA just kind of waved her hands and said "I know but he says it's nothing."  Nothing.  For a grown woman to vomit all over herself, almost every time she eats?  I know I harp on that, because IT IS NOT NOTHING.  IT IS SOMETHING. 
Every time someone outside the family asks me "how is (AA) doing" I answer, "I don't know, I don't care, and I don't want to know."  I don't care if it makes me a bitch.  I can't handle this.  If she was being cared for properly by a competent doctor, if she had a real diagnosis and prognosis and treatment plan and medicine, I wouldn't be so angry.  She's going to DIE and my cousins are just blithely going along, enabling her bad behavior and reinforcing it and when they find her dead in her hoard it's really going to slap them in the face.  And no doubt somehow I will get blamed for it.

Alzheimer's Aunt in Limbo

Finally one of Alzheimer's Aunt's (AA) children took her to a doctor.  Not a competent doctor, not a geriatric doctor, not any kind of specialist, but an old quack whom my mom hates and believes contributed to the death of my dad's aunt (who also had dementia/Alzheimer's).  This guy is old, he is incompetent, he doesn't care.  And old ladies LOVE him.  My grandma used to go to him and my mom made her change to a geriatric doctor who didn't enable her bad behavior.  I wanted Alzheimer's Aunt to go to this same geriatric doctor, but NO, she likes Dr Quackenberger and she's old and she's blind and we can't possibly take her to a different doctor.
And taking her to ANY doctor was held up because she had no insurance, she never applied for Medicare or she threw away her card or whatever reason, she wasn't getting Social Security, she spent the whole $60,000 golden handshake from her job in well under a year and now she thinks she's "broke" even though she makes more than twice what my mom does (and my mom still works!).
So most of the concerns I begged my cousins to bring up were ignored. They asked the doctor about her "possible" dementia/Alzheimer's and the vomiting.  Nothing about mold.  Or psychosomatic problems.  The stupid doctor asked her TWO questions to determine if she has dementia/Alzheimer's.  TWO.  What are your children's ages and birthdays (she said her 41 year old son was 30 but she knew his birth date so apparently that counts as a right answer?!) and to draw a clock, which she did badly and blamed on the "blindness."  She had a basic blood test that showed her liver and kidneys were fine.  Not a test for mold exposure.  When pushed he said he could do a CAT scan or CT scan (I don't know the difference and I wasn't there to hear exactly what he said) of her head but overall he seemed completely unconcerned by any of her extremely alarming symptoms.  (and no head scan was actually scheduled)

The vomiting, he just dismissed out of hand.  That baffles me.  If I started vomiting whenever I ate, I would go to a doctor. I know this for a fact because a few years ago I started vomiting when I ate ice cream, drank milk, or (oddly) ate raw brownies or cookie dough and yes my fat ass was at the doctor to find out why!  I was also coughing uncontrollably until I vomited from that too, no food necessary.  And they immediately scheduled a barium swallow because they thought I had cancer--a tumor that was in or near both my stomach and lung pushing on them, making me cough and vomit. I didn't have a tumor, only a hiatal hernia, and they gave me some medicine and said I also had viral bronchitis, and eventually I stopped coughing. I stopped drinking milk, eating ice cream, brownie mix and cookie dough and threw up only from coughing, and that rarely.  But I didn't just blithely puke everywhere and go on with my life and expect everyone around me to not react to vomit! And to this day, milk makes me vomit unless it is organic (and in tea, it still sets me off sometimes) so guess what, I don't drink non-organic milk and when I have tea with organic milk I don't have very much and keep a plastic bag or small trash can handy.
So the end result of the doctor visit is...nothing.  Maybe some kind of scan, who knows when, seemed pretty casual.
I was on vacation (you can read all about it here; if it's the future, go back to October of 2012 for the 6 vacation entries) with no phone so blessedly for over a week I knew nothing about AA's problems and didn't even think about her.  My mom had said that if Alzheimer's Aunt called her with a pointless demand (I lost my glasses!  I unplugged my computer!  I want to go for a ride right now!) she was going to ignore it.  I guess that didn't happen; my mom didn't mention it if it did.
We came back to Hurricane Sandy (we battled it on the cruise as well) and we had our own problems to deal with so I had no time for her.  I did talk to one of my cousins, who said she had to go there every other day to deal with something or others, and that her mom is "so depressed" and that she "can't deal" with anything and she can't concentrate on books on tape and she can't read big print books and she's still having problems with medical insurance, she claims to have paid for some COBRA coverage but there's no cancelled check, direct withdrawal or credit card payment for any.
My cousin's thought on the vomiting is that Alzheimer's Aunt eats "inappropriate food" that's "too hard to eat" because one time she saw AA eat pancakes and she didn't vomit.  Well I saw her puke up half a plate of spaghetti, how is that harder to eat than a pancake? 
Apparently Alzheimer's Aunt needs a dentist now, so we have to find out about dental insurance, which for some reason my cousins think is part of Medicare but I don't think that's the case.  I know Alzheimer's Aunt doesn't brush her teeth, her breath stinks, so it wouldn't be at all surprising if her teeth are rotten.  Apparently once someone finds out about medical insurance I'm in charge of taking AA to my dentist, who is a really sweet lady from India who hugs me and is very kind.  I hate to expose her to AA's filthy body and sewer-stink mouth and irrational speech. 
A couple of weeks ago Alzheimer's Aunt demanded once again to be taken to Verizon to get the pictures off her old, broken (frustration over voice mail) phone and then to be taken to Barnes and Noble to get her Nook working.   I'm confused why someone who insists in every other sentence that she is "blind" or "can't see" needs photos or an e-reader.  We looked it up and apparently the Nook doesn't read to you (my Kindle does, I say smugly).  I tried to use the Nook to figure it out and show her, and wow what a confusing mess. I love my Kindle!  (sorry for the spontaneous ad; I do plug things I enjoy)
So the end result is, eye doctors say there is nothing wrong with her eyes.  Medical doctor says the vomiting is no big deal and there's no dementia or Alzheimer's (even though no tests were done).  So we have a person who claims to be blind, pukes constantly, and makes no sense when she talks, but she's okay!?  
I give up.

top senior site award

Another award for my telling of my dad's story.  I'm in disbelief every time I get one.  Really?  My sarcasm, my anger, you find it helpful?  O-kay....

The listing:

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The letter:
I'm following up with you about the list NursingAssistantGuides.com published today of the Top 100 Senior Living Sites for Nurses. I emailed you last week to tell you you had been nominated for inclusion, and I'm happy to report that your site has been featured on the final list! You can view the whole thing here: http://nursingassistantguides.com/senior-living/We made this list so that our readers, prospective nursing assistant students and current professionals, could learn more about the growing field of elder care and senior living. As the baby boomer generation ages into retirement, there will be a growing need for nurses and nursing assistants who are passionate about offering lifestyle improving care to elderly patients. Thank you for maintaining such a useful site, and congratulations!
Best, Lauren

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So again, thanks for reading, thanks for the support you give me, and I'm sorry this blog is necessary for any of us.

Alzheimer's Aunt gets a new phone & fails to eat dinner

I'm beginning to think that either we were really LUCKY with my dad (remember, he tried to kill my mom AND a doctor) or (Alzheimer's) Aunt (AA) does not have dementia.
Although I had a meeting scheduled last night, I was basically pulled out of it to go to Verizon to get Alzheimer's Aunt a new cell phone.  Why?  Because she broke the old one in her "frustration" (that word gets thrown around a lot by my cousins) over the voice mail issue.
I'm having a lot of trouble reconstructing the events of yesterday.  Apparently Alzheimer's Aunt tried to use Skype on her computer to call one of her children who is out of state.  She couldn't manage to do it.  Whether that means that she couldn't get Skype to start, or that her child wasn't answering, I don't know.  So "in her frustration" she once again unplugged everything.  WHY does she think that solves ANYTHING?  The landline was disconnected as part of this madness.  Then she panicked when she realized she had no phone and, if I'm understanding correctly, attempted to use the (unplugged) landline phone to Skype her out-of-state child to have him call ME to tell me she has no phone.  That makes absolutely  NO SENSE so I'm guessing either I don't understand the story, or she doesn't even know what she was doing.
Although she had no phone, somehow my cousin found out that AA needed a cell phone immediately (unless the outing was already planned) and I got the call to "drop everything" and go to Verizon. Apparently because I can help my (perfectly cognizant) mom with her cell phone needs, I'm the go-to cell phone person in the family for crazy people.  And I had to prove I'm "helpful" apparently since usually apparently my brand of help is too bossy and horrible and unhelpful.  
So off to Verizon.   On the way, I politely asked Alzheimer's Aunt how she was doing.  She started in with a litany of whining "I'm not having a good week" (it's MONDAY) and I tuned out. Then I found out that she needs a phone jack splitter. I offered to walk over to a department store while they were waiting to be called by Verizon and get one.  I couldn't find one unfortunately--too old school I guess.  I came back and looked at some basic phones (although her daughter insisted that she wanted to get her mom an i-phone, that daughter wasn't there that night and no i-phone was happening for someone who smashes a cheap flip phone "in frustration" over not being able to use it) to see if any had big button or displays or voice dialing but I did NOT point out my choices to AA, only to my cousin.  Alzheimer's Aunt stared blankly at the display of "basic phones" (not smart phones).  She refused to even pick any of them up to see if she liked them or could use them.  She wanted a "stylus" to dial with because her fingers go on the wrong keys (because she's BLIND remember) but somehow she can aim a pointed stick accurately.  She finally settled on a phone that talks when you push the buttons (two-zero-three) and a $50 a month unlimited minutes plan.  Apparently her last cell phone bill went over by $300 because she couldn't figure out how to dial and she'd call random people and TALK TO THEM (oh, those poor people) and also call numbers from old scraps of paper and her call log (remember, she's blind, but somehow she can read when she wants to) to "find out" who they are.  She had the broken phone with her, wanting her pictures.  The guy promised to try.
We were standing by the counter waiting and when I looked over she had the most childish pout on her face, her lip stuck out, her eyes all small.  She didn't want to wait, but she had to have her pictures!  Then she said she was "exhausted" and "faint" and all this was "too much" for her (like we forced her to go there).
Finally the guy came out and said he couldn't get any data off the broken phone, causing more pouting.  She couldn't figure out how to swipe her credit card to pay, she didn't know her PIN (luckily my cousin knows it; I deliberately looked away because I don't want to know it).  She had a new big wallet and was complaining that all her credit cards don't fit.  Half the slots were empty.  We pointed that out.  "That's what my daughter says too," Alzheimer's Aunt whined, "but it's not true.  They don't fit."   Somehow I am the only person who thinks any of this is irrational.
She can barely walk.  She's flat footed and takes baby steps and sways and seems about to topple at any moment.  We finally made it to the car.  It's parked far away because she "lost" the handicapped parking application I filled out for her that needed to go to a doctor to get verified, so she has no parking placard. Probably because it was "bossy" of me to try to get her a handicapped parking pass that she could use in anyone's car so she wouldn't have to walk far.  I'm such a terrible person.
On the way home, she's going through the bag, throwing everything around, all the packaging and receipts and little booklets and cords and things.
"I don't have the phone," she announces.
"you have it," we say.
"No I don't!"  She starts yelling.  "I lost it.  Turn around right now!  I need to buy another one."
"no, you have it."
She throws the bag at me. "Is it in there?  Show it to me."
I verify that the bag is indeed EMPTY because she took everything out and flung it on the floor.  "You have the phone," we say over and over.
"You're gonna be sorry!" she's screaming "you're gonna be sorry when I get home and there's no phone!"
"you have the phone."
"No I don't have it!  I lost it!  We have to go back!"  Then, "oh, is this it?"
"yes, that's the phone"
"oh I thought that was my old phone."
I could go back and read every entry on my dad for the 4 years of his illness and I can't believe I'll find a pattern of behavior anything like this.  The ONLY time is when he lost his bundle of business cards and notes and he blamed my mom and then found them.
The night before the Verizon expedition, Alzheimer's Aunt was supposed to have dinner at my mom's house with one of her kids.  My mom cooked extra, for 2 more people--wouldn't you?  Last minute, Alzheimer's Aunt "didn't sound right on the phone" to my cousin who had to run over there.  She was "having a bad day" and started in on her pity-party poor me victim-mentality and refused to go eat because she's a "burden" on my mom and me, and kept my cousin from going either, demanding a ride in the car instead.  So my poor mom was stuck with all this food.  No apologies issued.  Even before AA was sick, my mom often had her over for meals and holidays.  AA never had her over in return (not that she would in the hoard) or even offered to reciprocate with a restaurant meal.
I am just baffled that my violent abusive dementia dad was easier to handle than Alzheimer's Aunt. I wish someone would bring her to a geriatric doctor and get a formal diagnosis so we'd all know what was really going on.

No matter what (Alzheimer's Aunt) & Alzheimer's day

I've been trying to stay away from the whole Alzheimer's Aunt (AA) situation.  It's mostly making me angry, as you can tell from my posts here.
One of my cousins told me something today, though, that I need to share.  Alzheimer's Aunt is supposed to be filling out some kind of lifestyle questionnaire for the elder care lawyer, so the lawyer can help guide her into the right paperwork, etc.  One of the questions was about being kept alive by machines, being resuscitated, etc.  Alzheimer's Aunt stated, emphatically, that  
if there is even a percent of a percent of a chance, she is to be revived and kept alive by any and all means necessary, no matter the financial or emotional hardship to her family.
This is a woman who did not hesitate to pull the plug on her own mother 20 years ago.  When my cousin, mildly, pointed that out, AA got angry and non-responsive.   
So it's okay for you to kill your mom, but not okay for your kids to kill you in the same situation?  And for your kids to go bankrupt and have their lives ruined caring for a brain-dead person?
Would you like to know WHY?
Because she thinks she's going to hell.  She doesn't agree with her church so she's decided her god is going to punish her.  I suggested that maybe, rather than hashing this out with a lawyer, she call a priest.  A very nice priest came out and talked to my grandma last year for her birthday (ironically, the last birthday present I ever gave her, who knew?) and I'm sure that same priest would come for Alzheimer's Aunt.

Today is World Alzheimer's Day.  Hope, pray, shake your rainstick, whatever it takes. for a cure.

had it with you....Alzheimer's Aunt

The Rolling Stones have a song called "Had it with You" and that's about how I feel.
I didn't attend a single minute, a single SECOND, of the lawyer's meeting.  The lawyer had said she might ask me to print some documents (when she emailed me the day before) but she didn't.  No one thanked me for setting up the elder care lawyer meeting OR for having it at MY house (nearest to AA's hoard but not in it).
As far as I can tell, someone has had to run to AA's house for "emergencies" last Thursday, Friday, Saturday, Sunday, and today.  Most of the involve her not answering her phone (today's panic) or not being able to find her glasses (yesterday's).  Of course when you get there, she's found the glasses or just forgot to charge the phone.  
I was supposed to take her to another useless doctor appointment (check her blood pressure!  Really, with all that's going on, her BP is the priority?) tomorrow and I casually said, before the lawyer got there, "Can the doctor's appointment on Tuesday get rescheduled so someone else can take her?" and one of my cousins said that was already happening.
Because AA is PISSED at me.  I've got an ATTITUDE, I'm ordering her around, I'm not helping her.
She refused to speak to me when she got there for the meeting.  She didn't thank me afterward.  I was talking to one of my cousins before the meeting, and AA's phone rang.  First she says, "Oh, is that MY phone?" when no one else seems inclined to answer.  Then she starts freaking out, flinging her pocketbook around, wailing, "oh this stupid thing!" and basically acting like a 5-year-old until finally she managed to somehow (I don't know how because getting a cell phone out of a purse is probably at least a 3 person and 20 minute job, right) get out the phone and answer it.  Just then the lawyer arrived.  AA did her patented hand-wave "get away I'm on the phone" at her, and that was when -I- walked away.  Lawyers get paid.  You want to pay them while you gossip on the phone about how horrible your life is being blind and helpless, go right ahead.  I'm not paying the lawyer's bill, am I?
So I don't know and frankly don't care how the meeting turned out.  I heard a bit of talk about another meeting being scheduled for signing paperwork that evidently I'm expected to be at (as a witness, cuz you know she's not giving evil bossy me POA or anything else) but no one bothered to tell me when or where so maybe I'll be busy who knows?  I don't know and I don't care.  And I also don't care if I'm a bitch.
She invited herself to my mom's for dinner last night.  She stunk.  Body odor, putrid breath, dirty clothes.  My mom said today when I talked to her, "you didn't eat much" and I said "because AA smelled so bad!"
Today the alarm bells were ringing because she's not answering her phone.  Yesterday it was lost glasses (oh, I found them) and then a hysterical crying melt-down because no one loves her and cares about/for her. Which is such bullshit.  She's got everyone at her beck and call and she's totally abusing the privilege.  During the lawyer meeting she expected her laundry done (by me)!  I'm a fucking MAID now?  And "here's some bills that need to be mailed" that all need stamps!
Oh but she's SO DEPRESSED (but refuses to take the anti depressant that someone finally figured out she needs) she's BLIND and HELPLESS.  And she's not going to ANY doctor EXCEPT an eye doctor to fix her eyes.  She's not cleaning until her eyes are fixed.  She's doing nothing because she's BLIND.  Except, of course, when she makes comments clearly showing she can see.
Had it, had it, had it, had with you.
UPDATE:  today's emergency was that she tried to move her TV and "in her frustration she unplugged everything in the room." (including, I assume, the house phone) My simple question, "How did that make her cell phone not work?"  "She broke her cell phone."  Now, the other day, she was wailing and crying that everyone who calls on the cell "hangs up" in 4 rings and something about "automatic voice mail" and she doesn't understand voice mail and she can't control her phone so she has to control everyone who calls it (that's her words, not mine:  CONTROL).  We've told her that you only have about 30 seconds to answer the phone and no one is deliberately hanging up on her.  She expects everyone who calls and gets voice mail to simply call back over and over and over until she answers!  Because it's too difficult to carry the phone around or keep track of it (she can't keep track of her glasses, having to know where the phone was too would break her mind entirely apparently) so she locates it by the ring.  And I guess when it stops ringing she wanders off so when it rings again, the cycle starts again.  I, personally, won't call someone who puts that kind of restrictions on me.  I'm not calling 11 hundred times until you have the sense to stand next to the phone or know where it is.
In an aside, I asked one of my cousins for a favor.  I needed help with winterizing my koi pond.  You'd think, with all I do for AA, someone would throw me a bone.  Nope.  "She's not answering her phone, I have to go there, can't help you. Maybe another day."  Next time you call me, cousin, that's my answer too.  Can't help you today, maybe another time. 
My mom thinks AA is faking it or at least exaggerating whatever she does have in order to get attention.  She is totally spacey and dementia'd out at one moment and then she's looking at a letter tile game and saying "oh, can you use French words?" and spelling things in French. (Blind, what a miracle, huh?)