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.

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)

transitioning

Today I was sitting in a restaurant, eating, and a text message came in on my phone. I thought it was my husband responding to an earlier message from me, and it wasn't.  It was from a really good friend of mine, whose adult son has cancer, and the message was to let me know that his time had come, any minute now.  Maybe even as I'm writing this, who knows?  The second part of the message was to ask me to spiritually be part of her son's transition team.  She also asked for my dad's help.
I was sitting there just crying over my food and the waitress came over and though the food was wrong (again, it had already been remade once) and I told her what I'd just learned and she said "Do you need a hug?" and she hugged me.  It was so sweet.
I'm so sad for my friend, but at the same time I am so honored that she took time out from being with her son for the last time to think of me and to invite me in.  And invite my dad!  If there is ever a time in the world to be completely selfish, it's when you're watching someone you love die.  There is no room for anyone else there.  And she let me in.  She asked me in.  I'd go there if I could, but she's hundreds of mile away, and she's got 7 other children plus some grandchildren--no room for me to be there physically, that's for sure.
A transition team is basically anyone who is there, in body or spirit, to help someone transition between worlds.  You could work with women in labor, welcoming their new babies to this world, or with the dying, saying goodbye.
I wrote back and told her of course I'd be there with her in spirit and I assigned my dad and grandma and all the pets and whoever else is up there to welcome her son home with open arms, to bring him into the Elsewhere Bar and teach him what's what.
I'm so sorry for her loss.  Not having any children, I can't imagine the pain of losing one.  But I know how much it hurts to lose a beloved pet, and I'm sure it's 100x worse if it's your human child.  She had sent me a message in the fall saying that he was doing really bad and in a lot of pain, and that he, and everyone else, was praying for his pain to end, for him to die.  I know that feeling all too well, and the combination of relief and grief that will follow upon his death.
(image source)

losing grandma, part 1

I was awake at 3 a.m. and beyond this morning.  I was sick, I've got a cold and an ear infection.  First thing this morning I rescheduled the cats' vet appointment so I could stay home all day and just be sick in bed.  (And I called the doctor about my ear.)  Moments later, my mom called me.  She said she had "bad news" and I knew it was death but I thought it was the dog or cat or some distant relative (last summer, for instance, one of my second cousins went on a "vision quest" and was found dead under a tree three weeks later with an uneaten banana and a bottle of water, and a few years ago my mom's cousin was a Memorial Day weekend motorcycle fatality statistic).
But no, not so distant. Apparently around 3:30 (as I was lying awake plotting my sick day), my mom was woken up by "a god-awful noise" coming from my grandmother's room, like a rattling gasping for breath.  When she went in, my grandmother was unresponsive with fixed eyes.  She called 911 and the fire department intubated (sp?) her and brought her to the hospital.
Grandma had a "massive stroke"--the one the doctors had been warning her would happen if she didn't take her blood pressure medicine.  Of course she always laughed them off and went right on taking 1/4 of a pill instead of whatever her real dosage was.  She'd had a minor stroke a while back and my mom called me out of work and it ended up being nothing that serious (that was when she moved in with my mom, 4 1/2 years ago, right before my dad died).
But this one, yeah, this is it.  My mom told me right out at 8 this morning "she's not going to make it this time."  She's on a respirator.  If the EMTs hadn't put the tube in her she'd be dead already.  They did a  scan of her brain and it's massive bleeding everywhere (like my dad after he hit his head) no chance of recovery. I don't want a vegetable for a grandma.  I had one for a dad and I didn't like it one bit.
I called the funeral home and had them pull the paperwork for my grandma's prepaid funeral (from 1987 when her husband died)--why my mom couldn't think to do that, I don't know, but they appreciated the heads-up.  I don't know if my mom has called my grandma's brother or sister-in-law.  I told my godmother (my grandma's niece).
I just never know what to do while in death limbo.  Call everyone and say "she's gonna die" and then tomorrow or the next day call and say "she died"?  Wait until she's dead?  What if her brother wants to come from California to say goodbye?  What about the few friends she has left?  I'm not good with complex thinking when I'm sick with some kind of hideous flu.  I suppose I have to write the obituary too.  It's all I can do to compose this post, obit will have to wait.
My mom has grandma on a DNR, obviously--she's 93 (her 94th birthday is this weekend; the picture above is from last year's party).  But right now the ventilator is keeping her alive.  Her heart is strong and healthy but the doctors don't know if she'll keep breathing without the tubes or just die.  So that's what I get to do this afternoon, go and pull the plug on my grandma and watch her die. 
Happy Valentine's day to my family, right?  My dad died on Thanksgiving, and my grandpa, great grandpa and great grandma all died within days of my birthday.  My  husband's grandmas both died around his birthday (one actually ON the day).  So why not ruin Valentine's day with a death anniversary too? 
I need to think more positively, but right now I can't.  The doctors say she's not in pain.  She's simply  not there anymore.  Hopefully she won't linger and suffer like my dad did (and he suffered--there was no lying to me and saying "he's not in pain" even though he was a vegetable; he moaned and thrashed like an animal in a trap).  I didn't get to say goodbye to her properly but really, that's rare.  When someone is hanging on forever like my dad, you never know when the last time will be to say it, and the flip side is the immediate and quick death with no time for the last time.  If that makes any sense.  She lived to be, essentially, 94.  She had no dementia, no cancer, no ill-health other than arthritis and high blood pressure.  She could walk (slowly) and talk (just fine) until the end. Most people would be happy with that kind of life.
Sunday night, in fact, she was in a really good mood.  We were playing a word game and my mom took a spot where my grandmother wanted to put her word and my grandma was sassing her and we were all laughing.  We were planning on where to take her for her birthday (Red Lobster, for lunch, on Friday).  Now it's more likely that on Friday we'll be eating an after-funeral meal instead.
Bye, Grandma.  I love you.  I'll miss you.  Say hi to Dad & Grandpa for me when you get to the Elsewhere Bar.

A place to say goodbye, or hello

I was stuck at a red light the other day, right next to a cemetery, and several of the graves had little American flags on them.  I started to wonder if my dad was eligible for a flag.  He got a medical discharge out of the Air Force.  I know he wasn't in long enough to get any benefits.  Does a flag count as a benefit?
But it's a moot question, cuz my dad doesn't have a grave.
I guess when I decided to cremate him I wasn't thinking about that.  When I worked around the corner from the cemetery where my grandpa is buried, I used to get a spicy chicken sandwich from Wendy's and then sit on his grave and eat it.  Then I'd go back to work and say that I had lunch with my grandfather.  It didn't make me feel CLOSER to him (although I physically was), it just seemed like the right thing to do.  I only worked there a couple of months and I haven't been back to "visit" my grandpa since.  I have to wonder what state his gravestone is, since I don't think my mom's been there to clean around it or plant flowers and obviously my grandma hasn't driven anywhere in 4 years.
Of course, visiting my father is easy.  His ashes are at my mom's.  She'd probably let me borrow them if I asked.  I guess technically every time I eat at mom's, I'm having dinner with dad like I had lunch with grandpa--he's only on the other side of the wall from the dining room.
But it's weird not to have a GRAVE, with that ponderous gray stone that distills a life into 10 words or less (name, dates, maybe a "beloved father and husband" inscription).  The ceremony at the grave site, well those are always terrible and I'm not sad we didn't have one (I'd have been a lot sadder if we had, if you know what I mean).  Everyone I know who died has a grave.  Except my dad.   Does that mean I don't love him?  I could spend all my money and buy a plot and pay a backhoe to excavate a hole and put his pretty green stone box underground and put up a big ugly gray stone to tell everywhere were the pretty box is hidden.  That seems silly.  My mom wants the box buried with her.  Fine with me, but I'm keeping a spoonful or two of dad so he can be in the coral reef with me.  Because I know how much my dad loved nature and he'd think being a coral reef was awesome.  And although no one would ever actually do it for me, I think it's pretty cool that to visit a coral reef grave, you have to scuba dive.  "Going to visit my dad, gotta get my tanks filled." The big blue sea, the immense green ocean, becomes your gray stone.

Then again, whether you believe in life after death, or the Elsewhere Bar, or that life is a candle that just gets snuffed out at the end, everlasting life is really when people who are still alive remember you.  If you're a fan of Terry Pratchett, the British author whose battle with Alzheimer's started exactly when my dad's ended, you might have read his book Small Gods (it's pretty stand-alone if you're not a Discworld reader).  It's about a bunch of gods who no one worships anymore, because no one remembers them.  That's what happens eventually to people I guess, no one is alive who remembers you and you fade away.  But I've written all this and as long as Blogger is online, even if I die today, people will read my blog and remember my dad.  And maybe me.  So this blog serves, I guess, as my dad's big gray stone, a place to visit him and say hello.  Because he's here, somewhere. 

The Last Time

This morning I was thinking about two different friends of mine, both facing losing their moms to cancer.  At least they get this holiday season with their moms, and they know it's the last one, is the direction my thoughts went, and I started composing some sort of holiday blog post in the back of my mind.
And when I got home from driving and musing, and logged onto Facebook, I saw to my dismay that one friend's mom had succumbed to her cancer only 2 weeks after her diagnosis.  Last year was their last holiday together and they didn't know it.  Her mom was healthy and fine in mid-November (or thought she was).
You don't know when it will be the last time.  The last time you see someone, talk to them, celebrate a holiday, hoist a pint, laugh or cry or cringe at a movie together.  It is worse when a healthy person gets taken in an accident of course, as there is no warning, but as my friend just found out to her sorrow, a mom can be fine on Thanksgiving and dead of cancer by Christmas.
When my dad got diagnosed, the doctors estimated, based on his age and how far his Alzheimer's had progressed, that he would live approximately 11 years.  How GOOD those years might have been, they didn't say.  Just that he should have made it to about 75 years old.  So at that last Christmas, the one we didn't know was the last, in 2006, we thought we had 8 or 9 more years, when in truth it was less than a year.  
Ironically, every year my mom thinks it's her mother's last Christmas (she's 93 now) and every year Grandma keeps going like the Energizer bunny.  We're almost numb to thinking about her not being here anymore, to the point that when it does happen, we're going to be in total shock.
I guess we all know somewhere deep inside that anyone and anything can be taken from us without warning. And maybe we should live like that, never going away mad or holding a grudge.  Always kissing our loved ones goodbye and telling them they are loved.  But we don't.  We get angry.  We slam doors.  We leave without saying goodbye.  Everyone would like to think they are immortal and so are all their loved ones.

I believe that as long as someone remembers us, our memory is immortal, and our souls hang out in the Elsewhere Bar and do whatever needs to be done in the next life.  But Alzheimer's and other forms of dementia can steal away even that breath of life, taking those memories forever.
I can't offer a solution.  I'm not a god or a doctor, just a person who has lost so much, who grieves to see her friends in similar sorrow.  
Love who you have while you have them, and remember them fondly every day after that.

Happy Birthday

This week would have been my dad's 71st birthday.  I like to think of him hosting a pint of beer up there in the Elsewhere Bar, buying a round for the newcomers, those who just came in confused and lost.
Happy Birthday, Dad!  Wish you were here--as yourself, not the shell you were at the end.

1253 days

My dad officially had Alzheimer's 1253 days.
He was diagnosed on 6/21/2004 and he died on 11/26/2007.
It's been 1253 days since he died (as of today, 05/02/2011).
It's been as many days since he died as the length of time he--WE--suffered through the trials and terrors of Alzheimer's.
The 1253 days that he was sick took forever to pass.
The 1253 days he's been gone have been a blink of an eye.

Some days, I really miss my dad.  I just adopted a rescue cat.  He would have loved to hug this big old cat and would have been able to help me calm him and integrate him into the household.  He never really knew the other cats I have now--I'd had Sputz 6 weeks and Ursi only 1 week when my dad was taken away.  He never saw my mom's dog and cat become friends.  He doesn't know I've lost 100 lbs or published books or that this blog is #1 on Google ("Alzheimer's Blog").   He hasn't seen the deck we built last summer or the new hardwood floor in the birdroom.  Hell, he doesn't know all my birds died (unless they are up there with him in the Elsewhere Bar--I like to think they are).  He doesn't know that some Navy Seals shot Osama Bin Laden in the head yesterday.   My dad would have been 71 this summer.  He should still be here.
Alzheimer's robbed my dad of all these things and more.  Alzheimer's robbed me and my mom of so many things.  My mom will never be the same.  Being a caregiver for 1253 days stripped something essential out of her that is never going to come back. 
My dad was always into playing his "special" numbers in the lottery.  He'd be telling me I should play 1253 in the Daily 4.  I'm going to Stop and Shop tomorrow, I'll pick up a ticket. If I win, I'll donate the money to Alzheimer's.

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.)

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.

new GPS watch debuts at Consumer Electronic Show

A new product, aimed at children, will debut at the Consumer Electronics show in Vegas. This watch will track its location with 10 feet via a GPS chip. The device is called Nu.M8 and I really don't understand why they aren't making an adult-sized version for adults that are impaired (not just AD and dementia, but mentally challenged in other ways).
Right now, it appears that the device only works in the UK, although it is debuting in the USA this week. It seems to require some sort of access fee if you use the service, and it is accessed through the web or a cell phone.

I have written to the company asking them to come out with an adult version. Please, even if your parent or loved one has moved onto the Elsewhere Bar like my dad has, and you think this device could help someone else's loved one, take a moment.
(original URL; screenprint on Flickr)

My father’s ghost

I had one of my rare dreams the other night—a dream that I am in (as me) and involving people and places that actually exist. It was a long and complicated dream and I’ll spare you the details. But as part of it, I was hanging around with a bunch of ghosts. Not scary ghosts going “whooo” and rattling chains, simply spirits of dead people. One of them was my dad. And at first (in the dream) it was cool to have my dad’s ghost around—not much different from having a flesh-and-blood Alzheimer’s dad—there but not there, you know?

But as I spent more time trying to communicate with my father’s ghost, I realized something horrible. Something that stayed with me when I woke up, even as the other details of the dream faded away.

My father’s ghost still had Alzheimer’s.

How unfair is that? In the dream, and now, awake, I raged against that. That is not how it is supposed to be. If you have dementia, when you die, you get everything back. You have to. You die and you go to the Elsewhere bar and have a drink. Whatever it was your soul was supposed to learn (or teach you) by stripping away your memories and your personality, you learn it and have a good chuckle, and then you hold the door for some newcomers (8 per hour, just from the US).

You don’t come back as a sad, demented ghost.

I don’t know what in my psyche triggered that dream and I can only hope that it was wrong.

(cross posted to my Shamanic Musings blog)

Anniversary & Hopes, plus more death

It's been a year today since I saw my dad. Tomorrow it will be a year since he died. That means, somewhere around the time I was putting Nutter to sleep, the anniversary of the last time my dad seemed to know who I was passed. It seems so far away, but I know that's because I spent so many years saying goodbye to my father and missing him when he was right there in front of me. One good thing about a long goodbye is that your mourning is totally different.
When my black cat died in 2006, unexpectedly, it was like part of me had been ripped out. I spent months crying and it was a year before I got another cat (not a replacement cat). I spent 18 months saying goodbye to Nutter, and although it was awful to take him into the vet and have the needle put in his leg and see the light go out of his big, pretty eyes, I didn't cry for weeks or even days. I still have my moments (like right now) when I miss my silly white kitty, but I'm okay with the fact that he died. He was 15 and he had cancer and he was done. He told me he was done and I honored that and let him go.
By the time my dad died last year, he was done too, and watching him die was like a battle. I can't even go back and re-read that section of this blog. It was horrible to have my cat killed (and face it, even though we say "put to sleep" and it was a gentle, painless act, at the end my cat was dead and I signed the paper making it so), but it was more horrible during his last days to watch the cat suffer, and to try everything to fix him and not be able to make it better for him—except to offer him that final needle. It really did stir up memories of last year and watching my father suffer with no hope of recovery.
I know I've said it before but why is a human allowed to suffer yet we can easily end the suffering of an animal, a lesser creature? If there was the slightest chance he could have woken and been my father again...oh how I would have fought for treatment. Instead the only treatments prolonged his pain. I can only hope that long before his body gave out, my father's mind and soul had fled to the Elsewhere Bar. No one should have to live for weeks in a body with a fever of over 100, with a broken and bleeding mind, burning up from an untreatable infection. I can't imagine how much physical pain he must have been in. Maybe that's why I was so intolerant of Nutter's final days. We took him to the vet and tried a last ditch treatment, which didn't work and left my kitty sprawled on the floor crying in pain, still unable to eat, hardly able to breathe. The very next morning, I made the call for his final appointment. No way was I letting that go on, as they say, "until nature took its course." I spent too long last year watching Nature's ineptitude with my dad.
I have so many wishes about my father’s death. I wish that he had died from that heart attack the year before (the same heat wave that killed my black kitty, in 2006). The hospitalization for the stent implantation sent him on a long spiraling journey to his death. We would have ranted and raved of course, saying he had more good years left in him, but he didn't. He had maybe 6 months (that next spring is when he started getting really violent) and "good" is relative. I wish that when he hit his head at the nursing home and the doctor told us he wouldn't survive the night, that he hadn't survived not only the night, but the next 6 weeks. His true, horrid suffering started then--with the seizures, the massive brain damage, the ongoing bleeding from the heart drugs (for the damn stent), and of course the lovely MRSA that finally did him in, although it took its time doing so.
I wonder if the resentment and anger over how my dad died will ever fade. I can get over that he had Alzheimer's, even though he got it way too early and his life was cut short. But the actual manner of his death, how he looked…I haven’t been able to put from my mind. The nursing home did the best they could keeping him comfortable and I hold no blame in my heart toward them. I hate that hospital though.

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A new interview with Terry Pratchett, the author I like so much that got diagnosed right after my dad died, just came out. He says he has Alzheimer's but it's actually posterior cortical atrophy (which is some kind of weird variant, I guess). He's having trouble getting dressed and driving but he's still writing. I just read his newest book, Nation, which isn't part of his Discworld series. He was diagnosed partway through writing it. I didn't count how many times the book made me cry. It's not about someone with dementia--it's about two children from different cultures coming together to rebuild civilization after a tidal wave--but it has themes of social isolation, and descriptions of being a grey ghost in the world, unable to communicate with anyone. I wonder if he wrote any of it consciously as a metaphor for his condition? It also has a rather unhappy ending, in that what you WANT to happen doesn't. Rather like how Stephen King ended the Dark Tower series--the only way it could end, but not the happy and desirable outcome. Pratchett claims he has a few more books in him before the darkness takes him, and I hope so. Although the Discworld books don't have an overarching plot like the Dark Tower did, I still want to read more of them. Maybe Pratchett will try to come up with an ending, but I hope not. I hope that when his mind does leave this world, it goes there, to the back of an elephant standing on some turtles (or is it the other way around?) and he becomes a living part of Discworld and for him it goes on forever.

I guess that's all anyone can hope for, whether they call it Heaven or crossing the rainbow bridge or going to the Elsewhere Bar, that it goes on forever and no one's in pain anymore. To quote Kurt Vonnegut: "everything was beautiful and nothing hurt".
(screenprint of Terry Pratchett interview)

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Since I last posted, saying I was putting Nutter to sleep, I also lost Zeebo and Onnie, two of my parrots. Zeebo died a couple of weeks after Nutter, with no warning. He was a hybrid and they don't live long--his sister was ancient at 16 and he was 15. A couple of weeks later, Onnie left me too. With no job, I can't afford necropsies, so I don't know what killed them, only that I feel very, very bad. My pet cemetery box has grown to be a pet cemetery shelf, I have so many tins of ashes. Ironically, on that same bookshelf are all my Discworld books.

181 obesity ups AD risk by 80%, and some personal stuff

Obviously this is something that concerns me greatly, as I am morbidly obese and had 2 relatives with Alzheimer's:
Obesity may boost dementia risk by up to 80%
Researchers at the Johns Hopkins Bloomberg School of Public Health have found that being obese can increase the risk of Alzheimer's disease by as much as 80 per cent.
Their analysis of published obesity and dementia prospective follow-up studies over the past two decades shows a consistent relationship between the two diseases. ...Based on a pooled analysis of their findings from 7 of the studies, baseline obesity compared to normal weight increased the risk of Alzheimer's disease by 80 percent on average.
The team further concluded that being underweight also increases the risk of dementia and its subtypes. ...from "Obesity and central obesity as risk factors for incident dementia and its subtypes: a systematic review and meta-analysis" was written by M. A. Beydoun, H. A. Beydoun and Y. Wang. (PMID: 18331422) (article screenprint)

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80%!? 80%!! Just shoot me right now. My father was overweight until he was diagnosed, but he wasn't obese by any standards--he had a big beer belly kind of gut. He had thin arms and legs.
Supposedly just having a 1st degree relative with AD gives you a 50% chance. Increase that by 80% and I might as well invest in long term care insurance right now. Totally depressing.
I'm having a bad week, of sorts. Tuesday at 6:45 a.m. someone hit my parked car and took off, leaving it pushed 6 feet forward with almost $2,000 worth of damage. My husband saw the truck, but didn't get the plate. Yesterday we drove around in the area and guess what? Found a truck--two blocks away--of the right size, shape, color, and brand, and it had a big old hunk o' damage in the front. The police will be knocking on his door, as they've already inspected the truck and seen that the damage matches my car. Jerk.
My grandmother is being a brat. My mom invited one of my friends over to her house for Memorial Day hot dogs and hamburgers. My grandmother barely greeted her and sat all through the meal with the "puss" face on, not talking to anyone. She was angry because my mom went to the Peabody Museum to see the Mexican art exhibit there, and had lunch with me and my friend, leaving her alone. She is really back on the "you can't leave me alone" kick. My mom dealt with being a caretaker for 3 years with my dad. My grandmother doesn't need a caretaker. She doesn't want to LIVE alone, fine, but that doesn't mean my mom can never leave the house. My mom can't get a job. Hell, she can't even take a walk without my grandmother bitching. It's totally not working out, and of course my grandma's apartment and her furniture and car are all gone so there is no going back My grandmother wanted this arrangement and all she does is complain.

Monday was the 6-month anniversary of my dad's death. I did not realize it until Tuesday. I'm glad. Is that awful, to be glad I forgot to be sad on that day? I've been sad so much for him. I want to think of him in the Elsewhere Bar, hoisting up a glass, maybe with some veterans. I hate that I have to drive by the nursing home where he died every day on the way to work, but I guess that's one way to numb myself, right?
(I've got some spare time tonight, so I'm blogging like mad! Enjoy.)

173 Woman with AD killed in my town

This is really sad. I didn't know her, but she lived in my town.
The woman struck and killed while walking across Interstate 91 Monday evening has been identified as Patricia Carruthers of Wallingford....Carruthers was in the early stages of Alzheimer's disease and apparently had walked away from her home...sometime before 6 p.m. Monday...
(I)t appears as if Carruthers had wandered across the southbound lanes and into the northbound lanes, where she was hit by at least one vehicle, and maybe a second....
Carruthers, 63, was a former lawyer and a former teacher at Pond Hill School.
She held a bachelor's degree and master's degree in education from Southern Connecticut State University and had earned her law degree from the University of Connecticut School of Law in Hartford in 1989.
Just goes to show that keeping your mind active doesn't stop AD, does it?
(P)olice were still trying to determine the sequence of events in the accident.
Police said there were two vehicles involved -- a tow truck and a tractor-trailer -- but it is still unclear exactly what happened.

I can only hope that when the truck(s) hit her, she died instantly and never knew what happened. One second she was walking on the highway, the next my dad was greeting her at the door of the Elsewhere Bar. Say hi to my dad for me!
Screenprint of news article
Her obituary is online and it turns out I knew one of her sons in high school. I'd say it's a small world, but it's Wallingford, after all.

164 First Christmas with no dad

We had our first Christmas without my dad. As most of you know, I'm a pagan, so I don't celebrate Christmas as a holiday--no tree or anything--but every year I do go to my parents' house and have a big lunch with my husband's family and my grandma, pretty much like Thanksgiving.
Thanksgiving was weird because my dad was alive, but not there. For Thanksgiving, my mother-in-law brought mounds of shrimp cocktail, which was what my dad always ate (he'd eat just shrimp cocktail if given the chance!), and mostly it just sat there. I felt awful because I wanted to pack it up and bring it to him, but of course he wasn't eating anymore and died a few days later, so there was no way he could have enjoyed the shrimp even if we pureed it.
Christmas was sadder, because he wasn't alive or there. And there was the plate of damn shrimp. Does she not learn? Only my dad ate it. My mom had been halfway through decorating for the holiday when he died, and she thought it was ghoulish to have everyone over after the service with her happy decorated house but it also felt stupid to take it all down. My grandmother wanted a tree, so she put it up.
But of course no one really talked about my dad. I don't think people know what to say. My mom did say that she meant this year to be his last Christmas at home--she was going to start looking for a nursing home in January. So none of us knew last year was his last set of holidays. . . but then again, you never know, do you?
It was also weird because it was basically the 1 month anniversary of him dying too--Nov 26 to Dec 25.
His wedding ring is still MIA. Months ago, he went to bed with it on one night and woke up without it. My mom had stripped the bed, shook out the sheets, looked under the bed and still hasn't found it. She did find his old Red Sox hat (the one I wanted to burn with him) and it's on top of his cremains box on her dresser. The hat was hidden somewhere bizarre; I forget where she told me she found it.
My husband asked me if I missed my dad and I said no without really thinking about it. And he gave me this look, like "how could you say that?" and I explained, also without thinking about it: "He's been gone a long time."
I have his obituary tacked on the bulletin board next to my desk at work and I just love the slightly goofy picture of him I picked, of him hugging his cat. Mostly when I look at the picture, I smile.

I've talked about grief in general and my grief specifically with some of my friends. Grief is a selfish thing. We're sad because we don't have the person anymore. We're not sad because that person has lost everything s/he loved, sunsets and soft kittens and cold beer (although I'm sure they have plenty of the latter at the Elsewhere Bar)--and that's the true tragedy--but because we have a hole in our lives shaped like the one we've lost.
The hole in me where my dad was isn't even dad-shaped. It's just a blob. As my dad wore away, I became less dependent on him. I needed him less because I was forced to go to others for the things he used to do for me. (Buying a car without him is going to be a nightmare. I'll miss him that day, that's for sure.)