Sadness has seeds

I had a dream about my dad early this morning.  In it, he had Alzheimer's, but not how he had it in real life.  He had literary Alzheimer's.  You know how characters in books and movies with dementia always have their moments of perfect clarity, just as you know that in real life, that just ain't happening.
There was the usual weirdness in the dream.  We had a 2,000-year-old Roman tool for digging trenches that had belonged to a guy whose name was something like Placebo.  My dad and I went to the railroad tracks near Krauser's and we were stealing bushes, digging them up with the old tool.  My dad had driven there so he was in pretty good shape that day.  Obviously we were in yardwork mode.  I saw a person I know who does yardwork and suggested that my dad go and talk to him about working in his yard.  My dad refused and then he slipped from literary AD to real AD and I couldn't understand at first why he wouldn't talk to the guy.  I said "Why won't you go talk to him?" and he said, "Because sadness has seeds."
While the rest of the dream was clearly what I call "taking out the trash" (my brain defragging), that statement was so profound I remembered it when I woke up.  I had to stay in bed and think about it.  It's almost like he was saying that sadness is contagious, that he thought he'd become sad because the yardwork guy would plant a seed of sadness in my dad, and it would grow.
I can only hope that this blog and all my horrible experiences with AD are not planting too many seeds of sadness in my readers.

3 years gone

3 years ago today, I got woken in the predawn hours with the call that my dad was on his way out, and he didn't live to see the light again.
Yesterday we were playing the letter-tile game and my mom was getting all the Rs and we laughed about it and said "Hi Bob!"  We're trying hard to remember the funny and silly things Alzheimer's made my dad do. We don't talk about the knife he was carrying.  The bruises on my mom.  When he tried to kill the ER doctor.   His blood smeared on the hospital wall.  Him in hard restraints.
Some say it gets easier.  I think what really happens is that you forget.  Because I'm fine, until I remember.  Or until I go back and read this blog.  And then it hurts, and I'm angry, all over again.

Hi there

The 3d anniversary of my dad's death is this week.  He's been gone almost as long as he had Alzheimer's. It's blunted now; I don't think about it as much, but when I do, the anger and the grief are still there.
On Sunday we were playing a word game that uses tiles similar to Scrabble.  The first game, every letter pulled was R.  I had every R.  R was my dad's favorite letter, since his initials were RRR.  My first license plate was ORRR because RRR was already taken. (I loved that, as you can imagine.  Not.)  Anyway, as I kept getting more and more Rs, I could only think it was my dad's simple way of saying hi.
Hi Dad.  Miss you lots. 

syndication #3 and award

My award is up.   And I am syndicated onto a third site, ehealth forum.  My link in the sidebar is going to the wrong forum, hopefully I can get the proper code.

Knowing is the worse part

I have now bought a car without my dad.  It wasn't the first or last thing I'll do in life where I feel cheated, that he should have been involved.  I think the experience would have been a little smoother with him along.  But that's immaterial, because he wasn't there.  Because Alzheimer's stole him from me.
My mom and I spent a couple of hours the other day cleaning out my husband's Santa Fe and making into MY Santa Fe.  My dad, of course, sold us that Santa Fe, back when he still had a functioning brain, so it is a tenuous link to him.  Mom and I did a pretty crappy job cleaning the car's insides.  Not much better on the outside.  Cleaning cars was Dad's thing.  He always offered to wash my car, or at least clean my windows and my dashboard, right up to when he got taken away by the police.  Mom and I were joking about my father, and how he would have come outside and taken over and the car would have been spotless inside and out.  Instead I ended up taking it to a detailing place and paying an outrageous sum of money for someone to do it uncaring when my dad would have done as good a job for free out of love.  At one point I said to my mom, "Tell him to get his lazy ass down here and help us with this car!"  and she said, "I wish it could happen."
It's weird that we say similar things about my grandpa and my yard (he had the greenest of green thumbs) but I never feel cheated out of my grandpa.  He was 70 when he died of cancer (I was 19).  I miss him, but it's different. I feel like he got a good run.  My dad was 3 years younger but his last years were bad.  My grandpa had a couple of bad months--he was diagnosed in April and died in July.
When my dad got diagnosed with Alzheimer's, I don't think I really UNDERSTOOD.  I cried, but I didn't know yet what I was crying for, or how many tears would be in my future.  I started this blog, not knowing it would be a roadmap for so many other people on the same journey.
When Terry Pratchett got diagnosed with AD a week or so after my dad died, I was hysterical. Because by then, I KNEW.  I had seen the end of the road and I hated (hate) to think of the mind that made Discworld going down that path.
Today, via Facebook, one of my oldest friends contacted me.  We've been friends since 7th grade, almost 30 years.   Her mom, who is about the same age as my mom, just got the word:  Alzheimer's.  Worse, my friend lives in another state than her mom.   And she, like me, is an only child.   Oh, my friend, I wish I could spare you this pain. 

where do the things we love go after death?

My beloved Pathfinder is going to the junkyard this week.  I've had it since Memorial Day weekend of 1994 and driven it a hair under 150,000 miles.  (It saddens me to think it will never reach that milestone.)  I am sure, in my heart, that we see those we loved again on the other side.   Everyone with pets knows about the rainbow bridge (look it up, bring tissues).   A while back, I talked about the Elsewhere Bar, where those with dementia and Alzheimer's go to find themselves again after death.  I'm sure my dad's the greeter, slapping them on the back and helping them find a seat.  Outside in the field, of course, are all our pets, and other loved ones wander about doing whatever it is one does in whatever form of heaven one believes in.
But where's my car?  I love my car almost as much as I love my pets.  I can't bear to think that it's being cubed/crushed (after being an organ donor--they're taking everything worth anything off it first) and that's it, just like I can't bear to think that death is just a candle going out and there's nothing on the other side.  (Belief in heaven is the only thing stopping me from being an atheist.)   So I've added a new territory, of sorts, to my concept of heaven, and now the Elsewhere Bar has a parking lot.  My dad's old Corvette can hang out with my Pathfinder, and any other cars that were much beloved when they were on the road. 
As I kept going in Meriden Hyundai trying out cars and talking to various sales people, it got easier not to see my dad there.  Easier to say "I'm Bob's daughter" and realize the person I'm talking to didn't know him.  But oftentimes in the process (which still isn't over) I got frustrated.  I wanted my father, just so he could EXPLAIN things to me.  So I'd know no one was ripping me off. Not that they would, but I am paranoid when I'm spending that much money.
(Today is also a sad milestone. It's been a year since I had a bird.  Maybe that's why I'm sitting around thinking about death.)

today is World Alzheimer's Day

Today, September 21, is World Alzheimer's Day.  But like with any disease, no one pays any attention to it until it affects them personally, or someone they know very well.
The link (which goes to the Alzheimer's Association website) contains many things you can do today, like write to Congress, and astonishing facts on dementia:

• Dementia care costs around 1 percent of the world’s gross domestic product (GDP).
• If dementia care were a country, it would be the world’s 18th largest economy (ranking between Turkey and Indonesia).
• By 2030, worldwide societal costs will increase by 85 percent (a very conservative estimate considering only increases in the number of people with dementia).

syndication and award

A third website, Avacara, has approached me about syndicating my content onto their site.  I am honored, really, that my terrible little story, which is not at all special or uncommon, moves people that much.  (It is also on alzcare.net and Wellsphere.)
I also just received an award for this blog, although the award's web page is not up yet. The site medicalassistantschools.org has honored me with a "2010 Top 25 Alzheimer Blogs award" which is pretty exciting.
Of course I remain ranked #1 on Google if you search for "Alzheimer's blog" (or "Alzheimers blog") which is just amazing. People pay huge amounts of money to get to the first page on Google's results.  And I am at the very top on merit. It's humbling.
I'd trade it all to have a functioning, happy, living father.  Although it is nice to be able to say "I am an award-winning, syndicated, top-ranked blogger" with full honesty. 
(Badges are forthcoming for the syndication and the award; they'll be up on the sidebar as soon as I have access to them.)

Update (9-27-2010)  Avacara wanted full ownership of my posts with no compensation (ie, they wanted the copyright) so that's not going to happen.  

happy birthday, dad

Today would have been my dad's 70th birthday.  It still seems unreal that he's gone.  The few years he had Alzheimer's seemed to drag on forever while they were happening but now it's been the same amount of time he's been gone and it's like the blink of an eye. 
Where ever he is, it's got to be a better place than he left.
Miss you, Daddy.  :( 

buying a car without my dad....

My beloved car is dying, which makes me sad, so sad, beyond words.  It has served me faithfully for over 16 years, since it had 17 miles on the odometer.   The time has come, the Walrus said, to talk of a new car....but how do I do that without my dad? 
I have never bought a car without his help.  In fact, except for my now-dying Pathfinder, every car I've owned I bought FROM my dad.   (He worked for the Chevy dealership of the same company and I got his discount so it almost counts.)   And now I have to do it without him.  It makes me sad, it makes me mad.
Okay, I get that he'd be 70 this year and retired and it's not like he should still be working there, waiting for me to come in.  But he should be ALIVE, damnit, and able to get into my dying Pathfinder and drive to the dealership of my choice and help me with this task.
But he's not alive and he's not here to help and I feel so lost.

I went up to Meriden Hyundai, which is the dealership he retired from, today to test-drive an Elantra Touring.  I needed to find out if it would bottom out on our driveway before I set my heart on it.   To walk in there and not see my dad through the window....  To see someone else at his desk....  To tell the saleman "I'm Bob's daughter" and see the look of incomprehension because my dad left before he started....  It was heartbreaking.  I was tearing up.  I was asking the guy all these questions...and he was nice enough, don't get me wrong...but I was thinking, "This should be my dad helping me."  And I just felt so sad, and so angry.
No matter what, I have to buy a car.  My Pathfinder's illness is terminal and I'll only be able to stretch out its dying for so long.  And no matter what, I have to buy a car without my dad.
It's been a long time since Alzheimer's made me this angry.  But today, I'm back to wanting to punch Alzheimer's Disease in the face, to beat in its head with a baseball bat.  It stole my father.  I have to buy a car alone.  What else have I been cheated of? 
(And yes, I liked driving the car, and yes it bottomed out.  I don't want to turn this into an ad, so enough of that.)
(image source)

Alzheimer's and driving don't mix

One of the things my mom and I worried about (needlessly, actually) was how we were going to get my dad to stop driving.   A car salesman most of his life, my dad loved cars, loved to drive.   We used to take "Sunday drives" that lasted a couple of hours when I was a child, just wandering the state before heading to Grandma's for dinner.  Once we saw a small plane crash.  Another time I swear we saw a UFO.   My parents thought it would be educational to park beside a cow field and watch a cow give birth. (Ugh.)
My dad was no dummy and he was one of the rare ones who accepted that he was mentally impaired and did not fight it most of the time.  He "got" that he had problems doing things.  He might get angry when he discovered he couldn't do math anymore, but he would stop trying once he knew that was gone.
On his own, he slowed down how much he drove and where he went.  He only went to places he already knew how to get to and if he was with my mom, she drove (which NEVER in my life had happened before--my mom only drove when my dad wasn't in the car).  Eventually he stopped going on Route 5 (taking a hugely convoluted route to my house to avoid it) and started walking to a few places that were really close.
One horrible day my mom got a phone call at work (just a few months before she had to stop working to be with my dad full time).  My dad had gotten into a car accident and fled the scene.   It was his first, and only, car accident.  He was going to Agway to get bird seed and I think something for the garden.  At a stop sign, he pulled out and hit someone and just kept going.  I think he panicked.  He didn't really "flee"--he just drove to Agway, where the cops caught up to him.  The clerk who waited on my dad every week came out and talked to the cops, and they managed to get my mom's work number and call her, and she left work to go there, and my dad didn't get charged once the situation was explained by the clerk and my mom.  It was just a fender bender, no one got hurt.  Thank all the gods.   My dad never drove again.   We did not order this, he decided on his own.  About six months later, my dad announced that he was selling his truck to his best friend's son.  If he missed driving, he never said.
We were grateful that he didn't hurt anyone and that we didn't have to fight him or lie to him to get his keys.
So I'm not at all surprised that Healthday said recently that people who have been recently diagnosed need to be monitored very closely when they drive, although Healthday seems more concerned that dementia patients will get lost than that they will hit someone.

(A) study of Alzheimer's patients suggests the risk of getting lost -- even on familiar streets -- may be greater than once thought. Even with early dementia, there may be no safe period behind the wheel because the disease is unpredictable.

And just think how many people don't get diagnosed promptly. I am sure, I know in my heart, that my dad was impaired for years and my mom and I were in denial.
But the study only looked at MISSING drivers--not car accidents. I think some reevaluation is needed to look at other dangers as well.

Of 207 drivers with Alzheimer's who went missing while driving, 32 died and 35 were found injured, the research showed. Another 70 were not found at the time the data was analyzed. Some had driven for almost two days and covered more than 1,700 miles while lost. Most had set off on routine trips....

The Alzheimer's Association offers a web-based program called "Comfort Zone" that families of Alzheimer's patients can use if the person can still drive safely in familiar places. The driver agrees to limit driving to a "comfort zone," and a global positioning system (GPS) monitors driving. If the driver leaves the area, the family is notified in real time.

(image source.  article source.  article screenprint.)

Alzheimer's blog roll

I want to update my list of blogs that talk about Alzheimer's.  If you are a reader and have such a blog, or website, please send me the URL (even if you have before) and I'll post it on my sidebar.  I only ask that you publish a link to here on your sidebar.   Thanks.

Dimebon fails Phase III testing

I wrote a while ago about Dimebon, a promising new Alzheimer's drug. 
From the Alzheimer's Association:

The Alzheimer drug latrepirdine (Dimebon) did not meet either of its primary research targets in a late-stage clinical study, faring no better than a placebo at treating the disease, according to Pfizer Inc., the drug's manufacturer. The Alzheimer’s Association is disappointed to learn of the negative Phase III clinical trial results, but we remain optimistic about the future prospects for better Alzheimer treatments and prevention strategies.

Pfizer is going to continue to test the drug, hoping it might still have some theraputic value, perhaps in concert with other, existing AD treatments.
Although my dad is beyond the need for treatment, it saddens me that this drug won't save someone else from our family's pain.

Virtual Candlelight vigil/rally for Alzheimer's

You can light a virtual candle for a loved one with Alzheimer's for free (or with a small donation...come on, make a small donation) at the Alzheimer's Association website.
My dad's candle is here.  It says, "Miss you, Dad.  Enjoy the Elsewhere Bar and be kind to the Newbies."

From the site:

On the evening of March 7, 2010, advocates will gather on the steps of the Lincoln Memorial, share their stories and light candles in honor of loved ones. This moving ceremony is part of the Alzheimer's Association annual Alzheimer's Action Summit. Show your support by lighting a virtual candle now and becoming an Alzheimer's champion. You will be able to write a personal message that will appear on this site.

If you are on FACEBOOK, the Alzheimer's Association is asking you to put this as your status:

More than 5,000,000 people in the U.S. are living with Alzheimer’s disease. If you have been touched by this disease or know someone who has, please post this as your status and use your VOICE in the fight to end Alzheimer’s.

a note from my dad

I've just started a massive cleaning/purging of my house, which is badly needed.   I'm not to the point where I need to call in a cleaning show, but it's not great either.   I'm trying to be relentless when throwing and donating and selling, but it's hard.  Things of sentimental value that are just clutter...what does one do with them? I know they are not the person and not the memory.  But I also don't want to end up in a house full of clutter and trash either.
I made the hard decision to throw out the roses from my dad's memorial service. I have two vases that the flowers were in, and those are useful (and used).  My friend, who is helping, took a few petals and saved those in a shadow box with a butterfly picture because she thought I should have kept them.
I found a little decorative plate my dad gave me, with a bird on it.  For some reason I turned it over.  And there was a note on the back.  Obviously it's always been there and maybe I read it before, but it surprised me to see my dad's handwriting.  There is nothing overtly affectionate in the note, which says:  "Made by Bavano of Cheshire.  Brumm enameled copper. Originally made about 30 years ago in Cheshire.  Hand signed by the artist."  It's the thought behind it, that not only did he buy me this pretty little bird plate, but he took the time to write down its history.   That's how my dad showed affection, he didn't go around hugging and kissing people or leaving mushy notes.
Do I need this plate?  It is not useful.  It is clutter.  It is a dust catcher.  But it's cute.  And it has a note from my dad on the back.
The plate stays.
And since I had the note, I looked up the company.   I think it's Bovano.  There is nothing like this plate on their website but it seems to be a similar process.