Wednesday, December 11, 2013

Vote for me!

If I win I will donate the money to Alzheimer's research. Thank you. You can vote once per day with Twitter and with Facebook. 
Best health blogs 2013
Healthline

“Stand your ground” against dementia patients!

Mr Ronald Westbrook
This should never have happened, and it makes me indescribably sad. Ronald Westbrook, age 72, a man with advanced Alzheimer’s, was shot in the chest 4 times as an intruder under the “stand your ground” line of thinking where you can shoot anyone you feel is threatening you. No charges were filed against the shooter.
Mr. Westbrook wandered from his home in the middle of a cold night, dressed inappropriately for the weather, with his two dogs. At 2:30 a.m. a police officer questioned him but apparently was satisfied that the man lived in the area and was walking his dogs.
About 90 minutes later, 34-year-old Joe Hendrix heard a knock on his door. Perceiving a threat, he called the police and then went outside to confront the intruder—an elderly man wearing thin clothing, carrying some mail, with two dogs. Hendrix decided the confused senior citizen was “coming right for him” (as they say on South Park as a defense against shooting anything) and shot him four times in the chest with a .40 caliber handgun.
“Under Georgia law, people are not required to try retreating from a potential conflict before opening fire to defend themselves from serious imminent harm," said Russell Gabriel, director of the Criminal Defense Clinic at the University of Georgia. State law allows people to use lethal force to stop someone from forcibly entering a home if those inside reasonably fear they are going to be attacked. Deadly force can even be used to stop someone from trying to forcibly enter a home to commit a felony.”
My best friend grew up in the boondocks of Pennsylvania, a place full of gun-toting rednecks from which she escaped as soon as she graduated from high school. She was taught how to use a gun when she was seven years old, and to respect a gun, and when not to shoot a gun. When I told her about this story she was appalled on many levels. I’m not a “no one should have guns” person, but there should be rules…and one of the rules shouldn’t be “it’s coming right for us” so let’s shoot it, straight out of South Park. She said if everyone was properly taught to use and respect firearms as children, this sort of thing wouldn’t happen.
The shooter, even though he killed an unarmed, sick, elderly man, was not charged with a crime.  I know I said that before, but I'm still in disbelief.
Long-time readers know that my dad "escaped" twice from my mom.  Once he was angry, once he thought he knew where he was going but got confused and lost.  Both times he was returned to us unharmed; we were probably more frightened than he was.  I can't imagine the phone call to his poor wife, who hadn't realized he was missing.  "Ma'am, your husband left your house and was shot to death.  Sorry about that."
Would Mr. Westbrook have died a horrible death like my dad?  Perhaps.  Or perhaps not.  Even if that was the case, he shouldn't have been shot.  He was probably scared and or confused.  One article said he used to live there at the Hendrix residence, or thought he did.  Maybe he thought he was home.  Then a strange man came outside, shouting things at him that his poor old brain couldn't process, and instead of helping him or welcoming him, the man from inside the house shot the old man to death.
His wife was a nurse, well-qualified to be caring for him at home.  She had the doors alarmed.   There's no mention I can find of how he defeated the door alarms and got out of the house.  But there didn't seem to be a reason for him to be in a nursing home, or that his wife could no longer handle his care.
This is just heartbreaking, and yet the news cycle was all about some guy from a movie about driving fast dying in a car accident while driving fast. 
(I read several articles about this, some with varying details.  I picked the best one to showcase here.)
enlarge article here
Original URL and photo source

FOLLOW-UP

Stroke damage = vascular dementia





An update on Alzheimer’s Aunt: after many delays, she finally went to a throat specialist. He found that her throat was 60% closed (if I understand it correctly; this is 3d hand information filtered through her) and she has one or more throat polyps. He “opened” her throat while she was under anesthesia and then she was required to take some “suspension” drug for 30 days. Turns out her insurance didn’t pay for that drug and it was $300 so someone made the decision simply not to get it for her.
Fast forward two weeks to Thanksgiving at my mom’s house. I was sick that whole week and my mom was going to move the turkey dinner to Sunday, but Alzheimer’s Aunt decided she was coming so we couldn’t cancel. I didn’t feel like being with people or eating, but as a dutiful daughter I went to see my mom and my cousin (and my aunt, I guess). I didn’t much feel like eating—I had been sick for 5 days at that point, sleeping about 20 hours a day due to intense pain in my head (probably, looking back, I had a sinus infection, but between the holiday and the weekend there was no way to get to a doctor and on Monday I was getting better already). I took a very small amount of food just to be polite.
Alzheimer’s Aunt loaded up her plate with everything. My mom had accidently bought a six pack of caffeine-free Pepsi instead of caffeine-free Diet Pepsi and since Alzheimer’s Aunt is a Pepsi fanatic (addict) my mom offered it to her.
I had finished about half my meager plate when Aunt started to hiccup. I pushed the plate away and walked into the living room and laid on the couch. When someone asked why, I said, “I don’t want to be trampled” meaning by her when she starts to vomit and that was taken as a joke.
Did Alzheimer’s Aunt stop eating when she started hiccupping? No of course not. She kept shoveling food into her mouth, just like the time with the donut.

I’m going to do an aside here. If, as part of his Alzheimer’s, my dad had started to choke and “spit up” when he ate, and he had a clear warning sign such as hiccups, there is no way I would allow him to keep eating or to stay at the table once the warning bell commenced. He would be immediately told, “Bob, go into the bathroom.” If he didn’t go, he’d be led there. Of course, my cousins would say that’s a perfect example of me “being mean” to my dad, while I see it as an example of taking care of someone who can’t take care of himself. 

Finally the people remaining at the table persuaded her to get up. Instead of going into the bathroom, she went the other way, into the kitchen. Meaning to get to the bathroom she would have to then go through the crowded dining room. Of course, while in the kitchen, it started. She forced her way through the dining room, spewing and gagging, into the bathroom.
This happened at least 4 times. (I went to sleep on the couch.) I don’t know how much of a mess she made in my mom’s bathroom, but last time she left it there for someone else to clean up (actually I cleaned it and told my mom after).
I was invited back to the table for dessert but between being sick and hearing puking, I declined. My cousin commented to her mother, “I noticed that you get sick when you drink soda or eat bread. The other night you drank water and didn’t eat bread and you were okay.” Alzheimer’s Aunt’s instant response: “I didn’t eat bread.” “You were eating stuffing, that’s bread, and you drank several cans of Pepsi.” “I didn’t eat bread.”
Sigh.
I wonder if, 2 weeks before, if she had been giving the prescribed drug, if she would not have been “spitting up” all over the place on Thanksgiving. I can only assume the procedure failed, whether due to the lack of the drug or some other reason.
Aunt was talking about the throat procedure. She said, “I thought I had throat cancer all this time!” I was dumbfounded. If I thought I had cancer, I wouldn’t wait TWO YEARS and LIE to my doctor about symptoms. I wouldn’t even wait two weeks, not after I saw my friend lose her mom in 13 days from cancer—less than two weeks from diagnosis to death last year. Seemingly fine at Thanksgiving, dead by Christmas.
Since Thanksgiving, there has been another bout of “go check on her, she’s dead” wherein it was found that she had left her traditional phone off the hook and turned off her cell phone. My cousin said, “she can’t understand that she needs to hang up the phone because she lost so much comprehension due to the strokes.” I said, “Yes, that’s vascular dementia.” “No, my mother doesn’t have dementia! She’s not like your dad.” (well that much is true) Well, according to this site and many others, “Stroke, small vessel disease, or a mixture of the two can cause vascular dementia.” That seems pretty straightforward to me.
In other Alzheimer’s Aunt news, one of her out-of-state children has decided to move back into the hoarded house and get it fit for habitation. Then she is going to give up her apartment (she’s been there what, a month?) and move back in with her child and child-in-law as caregivers. The house has been about 90% cleaned out (3 overflowing 25-yard dumpsters of trash) but there’s still a whole room of things she “has to have” and of course the place is filthy beyond imagining, smells horrible, and needs pretty much everything done—floors refinished/replaced, bathroom remodeled downstairs for her use, everything else scrubbed and/or painted and/or replaced. Good luck to the two of them moving in there. I wouldn’t live there even for free like they will be.
(I am going to continue calling her Alzheimer’s Aunt because it has a nice ring and Dementia Aunt is ugly. I know now she doesn’t have Alzheimer’s, of course.)
image source 

Tuesday, November 26, 2013

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.)

Sunday, October 06, 2013

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.

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.


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)


Monday, September 09, 2013

Encouraging new treatment for dementia is emerging

Some of my friends email me or post to me on Facebook when they see a science article talking about Alzheimer's or dementia, as everyone knows this is the cause nearest to my heart.  I do read them all.  Some I just shrug and say "yeah maybe" or "you wish" but this one...well, this one seems promising.
I'll let the first paragraph of the article speak for itself:

The first experimental drug to boost brain synapses lost in Alzheimer’s disease has been developed by researchers at Sanford-Burnham. The drug, called NitroMemantine, combines two FDA-approved medicines to stop the destructive cascade of changes in the brain that destroys the connections between neurons, leading to memory loss and cognitive decline.

To me, that means that they shouldn't have to get FDA approval, right?  This could be an off-label usage?  I'm trying to understand how the drugs are being combined.  I'm thinking of PhenFen, that diet drug that was two other drugs combined. (And it ended up killing people, didn't it? Maybe that's a bad example...)

The decade-long study...shows that NitroMemantine can restore synapses, representing the connections between nerve cells (neurons) that have been lost during the progression of Alzheimer’s in the brain.

That's A LOT to promise.   And they aren't done promising yet.  They are abandoing the old method of looking at the "amyloid beta plaques and neurofibrillary tangles" (what the drug my dad tested was looking at) in favor of something different.

To try to dumb down the science in the article a bit, the researchers found that the plaques didn't harm the neurons directly, but they did cause an overabundance of a chemical (glutamate) to be released, and that overabundance is what harmed the neurons.  If I understand it correctly, it seems to burn out the "locks" (receptors) on the neurons that glutamate is the "key" to.  A drug called Metamine can target those receptors, but it turns out that an overdose of glutamate also causes the receptors to repel the Metamine, meaning it's not as effective as it should be.  The researchers also discovered that part of the nitroglycerine molecule (the heart drug) can also attach to that receptor.  Working together, the piece of nitro can allow the metamine to bond to the receptor and keep it from burning out.

That would be good enough, to say that it would stop dementia in its tracks.  Have your loved one with a bit of impairment, maybe you have to drive him around or make a picture menu for the remote controls of the house, but better than the slow slide into oblivion that dementia offers now, right?

But wait, there's more.

By shutting down hyperactive eNMDA receptors on diseased neurons, NitroMemantine restores synapses between those neurons. “We show in this paper that memantine’s ability to protect synapses is limited,” (Stuart A) Lipton (MD, PhD) said, “but NitroMemantine brings the number of synapses all the way back to normal within a few months of treatment in mouse models of Alzheimer’s disease. In fact, the new drug really starts to work within hours.” 

Yes, it RESTORE NEURONS TO NORMAL.  In mice for now.  


Screenprint of original article

Sunday, September 01, 2013

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

Monday, August 26, 2013

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.


Had a Dad Alzheimer's blog one of the best blogs of 2013



“Had a Dad” Alzheimer’s Blog Selected as One of the Best Health Blogs 
From (Healthline) 
To (Bert) 
Hi Bert, Healthline editors recently published their final list of the top Alzheimer's blogs on the web for 2013 and “Had a Dad” Alzheimer’s Blog made the list. You can find the complete list at http://www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs (in no particular order). We encourage you to share your newfound status as one of the best blogs on the web with your friends, family, & followers. We also created a set of badges you can easily embed on your site anywhere else you see fit.Please let me know if you have any questions. Congratulations! 
Warm Regards, (Healthline) 
Twitter: @healthline.com 

Facebook: 
https://www.facebook.com/healthlinenetworks 

Monday, July 15, 2013

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? 

Wednesday, May 08, 2013

Stick N Find Bluetooth Location device


I just found this product through a post on, of all places, the I Can Has Cheezburger (LOL cats) site.
If my dad was still alive and at home, I'd be Fry from Futurama: shut up and take my money.
Basically, the StickNFind is a tiny round sticker that you can place anywhere.  You use your i-phone or Android phone to track the location of the sticker.  If you lose your keys, for instance.  Or you can put it on your pet's collar, stuck to a tag.   Or your wandering dementia-ridden dad.  When you are within 100 feet your phone can find it.  If your phone can't find it, you can set up an alert that goes off when the tag comes within range, say, if you are driving around looking for said pet, or dad. 
The battery lasts for a YEAR and it's just a simple watch battery.  They are 2 for $50 and come in many colors.  And it's a one-time fee (except for the batteries), no monthly upkeep charges.
I've talked about GPS shoes and watches and things before, but this is very versatile.  It just doesn't have a great range.  For what it is, the price isn't outrageous.  The biggest hurdle may be the smart phone.  I only got an Android phone a few weeks ago, and there is no app for any other operating system except Android and i-phone.
You can use the app to make the sticker flash or buzz (if your keys are lost in the dark).
You can create a "virtual leash" which tells you if the sticker gets too far away from your phone.  This is for pets.  Of course if you aren't at home and your pet gets out of your house, that isn't very useful. 
The same company puts out a slightly bigger device called a BluTracker that has a range of half a mile and a battery life of 2 months (rechargeable).  The pictures it looks to be about the size of a package of dental floss.  It has the same features as the sticker, plus a little more. It can be pre-ordered for $70.

Note:  This is NOT a paid advertisement, just a product I found that I think would be useful to the Alzheimer's community. 

Wednesday, April 10, 2013

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 saneShe 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. 

Thursday, February 21, 2013

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.


Thursday, February 14, 2013

Alzheimer's Aunt falls down

The view from my font window; beyond the fence
is a sidewalk and on the other side of the tree is the street.
Unless you've been living under a rock, you know that we in New England just got walloped with a huge snowstorm.  My town got 38 inches of snow in one day and at one point supposedly snow was falling at 6 inches per hour.  Lotta snow.
If you want to watch it in action, there is an awesome video (less than a minute) in time-lapse. 
So you can imagine what it was like to shovel out of this insane mess, even with a snowblower.
After 3 days, I finally got my car out.  I called my cousin and said "I'm venturing out, does your mom need anything?"  The reply was "well she's not shoveled out so she wouldn't be able to get anything you brought."  Okay.
 I called my own mom who said she was going to walk to Wal-mart to buy dog food.  I told her no, that I would buy it and bring it.  But her street wasn't plowed yet (cul-de-sac) and neither was the street leading to it.  I convinced her that the dog could survive on just dry food for a few days and set off on my own adventures.
Of course who do I see wandering down the street on foot, clutching a bag of dog food?  MY MOM!  I get her into my SUV and get her as close to home as I could (not very, unfortunately) and promised to take her to the store for real the next day if the street's still unplowed.
The next day I am waiting for her to call me about going to the store together and my cousin calls wanting Alzheimer's Aunt dug out and driven around.  Of course everyone has a million reasons why they can't do it and I have to.  I was pretty angry; I said "I've got my own mom to deal with, her street isn't plowed and neither is the street that's attached to."  So then I had BOTH of them in the car.  And later my mom complained how bad Alzheimer's Aunt STUNK.  She REEKED.   It's her breath, like death, like a dead animal under the porch in the summer, combined with an unwashed body and dirty clothing.
My mom was actually coming over my house after shopping to help me dig out my husband's car, so he could finally go to work rather than keep working from home.  So that's my mom, who does stuff.  In contrast, this is Alzheimer's Aunt once she's in the car:
"I tried to go outside and I fell down."
I just clamped my mouth shut.  When there's almost 4 feet of snow, it doesn't make you fall down.  It holds you up.
"I couldn't get up, I laid in the snow for 15 minutes."
I just don't believe her. I don't believe she even went outside.
"No one came and shoveled my sidewalk."
Finally I spoke.  "Who did you think would come when every road in the state was closed?"
"I thought my neighbors would do it."
"Did you ask them for help?"
"No."
"Then why did you think they would shovel for you?"
"They would see that I didn't shovel."
Well, for all they knew, you weren't even HOME.  And I bet if she had gone outside and made the slightest effort and others were outside shoveling, someone might have come over and asked if she needed help.  Sitting in the house, no doubt with the stuck-out lip face, pouting, isn't how you get your walk shoveled.
I announce, rather loudly and passive-aggressively, that I need gas for my car.
The silence is deafening.
So I have to shovel you out and drive you around but you can't pitch in for gas money?!
The next day, I was talking to my cousin about her.  I learned that Alzheimer's Aunt has spent approximately $6,000 in the last few months that can't be accounted for.  Part of it may be her house taxes, but even if she paid the whole year, that wouldn't be that much money.  I said, "Do you have power of attorney?  It's simple.  Invoke it.  Take her checkbook, take all her credit cards.  Call QVC and cancel her account.  Have new credit cards issued so any cards she has saved online (like at Amazon) won't work.  Go to the bank and say that she cannot take money out of her accounts anymore or get any loans.  Give her $200 cash for groceries and nothing else."  Then my cousin said that Alzheimer's Aunt has been going to her bank and opening $5,000 lines of credit like they are free money.  She has a mortgage on the house (she's lived in it for over 40 years) too, we don't know for how much or what she spent that money on.  But no one wants to invoke the PoA and "deal with all that" so they will let her spend herself into the ground. 
I suggested (I know I'm not supposed to suggest) that it's time she move into senior housing. "No, it would cost more."  I did the math and I think it would be significantly less.  The mortgage payment is about what rent would be.  She would no longer have to pay house taxes, water/sewer, oil, gas, or electric.  How would it cost more? Oh, but she can't live in a simple 1 bedroom senior apartment because she's got a 3 bedroom house hoarded to the brim with stuff she won't give up.
Is she going to the doctor anytime soon?  Getting tests?  Anyone care what's really wrong with her expect me, the person she cares about the least? 
Nope.
It's all very sad.
Also, in an aside, 1 year ago today my grandma had her (final) stroke and we pulled the plug.  I will write about her later.


Monday, February 04, 2013

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)

Thursday, January 31, 2013

click to give $10,000 to Alzheimer's

I just got this message on Facebook, from Max Wallack:

I am a 16 year old sophomore at Boston University who is dedicating his life to help Alzheimer’s patients and their caregivers. In 2008, I founded PuzzlesToRemember, which, by now, has distributed over 19,300 puzzles to Alzheimer’s facilities around the world. I also volunteer 20 hours a week in an Alzheimer’s research lab.
I recently learned that I am the recipient of a $1000 grant from KidsWhoGive, which is a philanthropic program run by Farm Rich Products. I will be donating these funds to the Molecular Psychiatry and Aging Lab at BUSM.
Donating consumer goods like puzzles is helpful, but the knowledge created from research can have a much wider and longer lasting impact on society. There are 5.8 Alzheimer's patients in this country alone, with a new patient being diagnosed every 58 seconds.
I recently learned that KidsWhoGive having a “run off” competition between the nine students they have chosen throughout 2012. These students are being voted on by the general public. The winner will receive $10,000 for their “cause” I would really like the opportunity to provide $10,000 for research at Boston University Alzheimer’s Disease Center.
Please vote here every day until Feb 5 and help me bring this money to research. Just click on the word “vote”
http://kidswhogive.com/vote-on-entries/entry/?submissionId=164
This is a wonderful opportunity for people to donate for Alzheimer’s research without it costing them anything. Please share this information with your colleagues, post on your facebook page, your blog and publicize anywhere else in order to get as many votes as possible. It could make all the difference!

Wednesday, January 23, 2013

two more awards, need more votes!

best health blogs 2012
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.


best health blogs 2012
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+.

Tuesday, January 08, 2013