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.)

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.

a Hidden Cost of Alzheimer's: almost a $million per family

Here is a cost of Alzheimer's I've never heard discussed:  loss of Social Security income.
I'm going to completely make up figures here.
My dad retired, literally, the earliest he could, meaning he got the minimum SS income.  Let's say he got $1000 a month, but if he had stayed until he was 65, he would have gotten $2000 a month.  And assume he lived a normal lifespan to 80 years.  So from age 65 to 80 (15 years) he made $24,000 a year ($360,000).  Then when he died at age 80, my mom would then get that money for the rest of her life--she's from a long-lived clan, so let's say she made it to 95 (her mom's still kicking at 93 and her grandma made it to 99).  That's 20 years (she's 5 years younger than my dad) at $24,000 or $480,000 in SS income.  Not counting what she made for her own SS income from age 65 to 75.
Let's say my mom would have retired at the maximum of 65 and gotten $1800 a month.  That's $216,000 for those 10 years, until my dad died.  So total retirement income for my parents=$576,000 from age 65 to death.  Half a million, not bad.
But that didn't happen.  My dad retired early, to the minimum amount (which I invented as $1000 a month).  So not only did he lose his job's income of several times that amount from age 62 to age 65, but he then lost $1000 every month to early retirement (due to Alzheimer's.)  Let's say he made $3000 a month at his job.  So $108,000 in real income from selling cars, evaporated.   From age 65 on, $12,000 a year of SS, not coming in.
Then we get to my mom.  She also had to retire early (age 60), to take care of my dad.  So instead of the $1800 a month she should have gotten, she only got $900.  Let's say she made $2000/month at her job.  She lost 5 years of that real income ($120,000).   Then my dad died at age 67 and my mom started to get his SS, $1000 a month rather than the $2000 he would have gotten if he just retired 2 years earlier.
Let's summarize the math.
Mom's early retirement, lost income through not working
$120,000 (5 years x 12 months x $2000/month)
Dad's early retirement, lost income through not working
$216,000 (3 years x 12 months x $3000/month)
Loss of maximum SS for my dad, ages 65-67
$48,000 (2 years x 12 months x $2000/month)
Loss of maximum SS for my mom, age 65-95
$360,000 (30 years x 12 months x$1000/month)
total: $744,000.
So if my mom lives to be 95, she will have lost three quarters of a million dollars in income because my dad had early-onset Alzheimer's.
I invented these figures, but they aren't very inaccurate. I would say that for an average family with one person developing Early Onset Alzheimer's, this is probably close to reality.
Has no one else thought of this?  It's really depressing.  And it makes me really angry.  My parents could have had an enjoyable retirement with almost a million dollars.  Now my mom struggles by on the absolutely minimum through no fault of her own--and because I don't work, I can't help her out financially.
(image source)

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)

I am no longer a bird lady (off topic) (revised)

This morning when I got up and went to feed Lance, my 21 year old rainbow lorikeet, he was still asleep.  Usually he is awake and yelling long before I get up.  I brought the cage into the bathroom and he didn't want to come out. I got his medicine into him but he really didn't fight much and I had a really bad feeling.  I fed him and he went right back into the cage, no kisses or playing.  We went to eat and when we got home he was in the corner of the cage on the floor.  We stayed close to him all day.  He slept and didn't want to wake up.  He didn't eat or drink and his poops were very few and solid white (not like they should be).  Around 7:30 Willy called upstairs that Lance was dying.  He had fallen off the perch.  I took the cage into the bathroom and took him out.  I held him and we petted him and talked to him and gave him kisses.  He was just lying limp in my hands, breath rasping, feet unable to grasp.  He kept opening his beak and moving his tongue and I'd like to think he was trying to make kissy noises back to us.  He kept his eyes on me.  His final seizure was very gentle and fairly quick and then he was gone. I got him exactly 21 years ago.

Yesterday he was happy.  He was talking to me and to the cats, making crazy kissy noises and complaining that we were eating in front of him--he liked people food.

His kidneys had been going for months; he'd been on medicine every day since May and been super-hydrated at the vet's three times.  I knew it was coming.  And that it would hurt.  I feel like my chest is crushed.

I don't have any birds anymore.   What will I call the bird room?  

(cross posted to my shamanic blog)
added later:
The day Lance died was 12 Eb in the Mayan calendar.  Eb is the road, the path.  We all follow many roads and paths, and even that day I recognized that my 21-year path as a bird owner, and Lance's life path, were ending.  I am hoping that this is the end of death in my life, for a while, the end of lack, loss and limitation, and the beginning of a new path of prosperity and peace.

I just came across this poem online.
All Is Well
Death is nothing at all,
I have only slipped into the next room
I am I and you are you
Whatever we were to each other, that we are still.
Call me by my old familiar name,
Speak to me in the easy way which you always used
Put no difference in your tone,
Wear no forced air of solemnity or sorrow
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was,
Let it be spoken without effect, without the trace of shadow on it.
Life means all that it ever meant.
It it the same as it ever was, there is unbroken continuity.
Why should I be out of mind because I am out of sight?
I am waiting for you, for an interval, somewhere very near,
Just around the corner.
All is well.

By Henry Scott Holland (1847-1918)
Canon of St Paul's Cathedral

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.

Tales of Loss

So much bad news in my life.
Since August 2005, I have lost 3 parrots (Gwennie, Goober and Prism), a cat (Zen) and a father (the presumptive subject of this blog), plus a job (Connecticut Publishing). My white cat is going to be put to sleep tomorrow, if he survives the night, and my sure-thing job ended without warning, so let's up that count to 2 jobs and 2 cats. Plus my health is still not what it should be--I was nearly immobilized by my leg going bad in the spring, although it's better now due to nearly constant therapy.
Last year, when I was watching my father die, my friend asked me how I got out of bed in the morning without being crippled by grief. I told him honestly that if I gave in, even for one day, and called in sick to my life, that's where I would end up--in a bed the rest of my life, unable to get up and face the world.
There is good among the bad, of course. I've been named a Featured Blogger at Wellsphere:

Gevera Bert Piedmont Alzheimer's & Dementia Community

So anyone who goes there searching for information on Alzheimer's will have access to my blog posts. I've got a few articles in my archive that I want to write about and hopefully I'll get to them over the next few days. So many new treatments seem to be coming out. Too late for my dad, but I try to think that it's not too late for someone else's dad (or mom, husband, wife, etc.)

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.)