The flowers are few and far between

7 years ago today, which in 2004 was the day after Father's Day, my dad got diagnosed with Alzheimer's. The aliens were stealing his brain, and I made my first post on this blog.
What a long strange trip it's been, and it will never be over, until they find a cure (or cures) or at least a way to halt it until death comes from another source.
My heart goes out to everyone whose families are still traveling this horrible bumpy road. The flowers are few and far between, but they are there, little tiny bits of brightness and laughter and love.
I hope this blog has been, and continues to be, a flower for those walking the road of dementia.
Happy summer solstice. May the sun illuminate your flowers.
(image source)

Father's Day without a Dad

Once upon a time, I had a dad. Just like the title of this blog.  And yes, when I started the blog, my dad was still physically with me. But the second someone is diagnosed with dementia, it's as if they start very slowly moving down a tunnel away from you.  I knew nothing about Alzheimer's at that point, but I knew enough to steal the lyrics from a Jane's Addiction song to title my blog.  "I turned around and found my daddy gone.  He was the one who made me what I am today.  It's up to me now, my daddy has gone away." (video is NSFW in lyrics or images)
Father's Day has ceased to be a holiday for me.  I think it stopped in 2004, the last time we really CELEBRATED.  Because the very next day, my dad got diagnosed and this blog came into existence.   So to me, Father's Day isn't about a happy time with my dad. It's more like the LAST time with my dad, if it makes any sense.
We are a fatherless and grandfatherless family.  My dad died in 2007. My husband's dad died in 1972 when he was just a wee pup. (He never had a dad--I shouldn't whine, because I had one for 39 years.)  My mom's dad, my beloved grandpa, died in 1987 and his dad died in 1979.  My grandma's still alive, but her dad died before I was born.  My dad's dad died before I was born.  One of my husband's grandpas died when he was a teenager; the other was never in the picture (there was a step-granddad there, but he died in the 1990s). So, in any direction you look from me, no dads.  Only my sister-in-law's fiance has a dad (but  her brother's fiance lost hers when she was a teenager).  I guess we all have to adopt Rudy's father! 
So basically Father's Day is a non-holiday.  We don't discuss it.  We don't celebrate it.  It's as if it's a holiday from another faith--like Ramadan or Chanukah, we know it's happening for other people, but not for us. I'm having a little gathering this weekend and I was astonished that some people can't come because of Father's Day. It's that far off my radar.
I'm sure other people choose to use Father's Day (and Mother's Day) as a day to memorialize their loved ones with dementia, past and present.  But for my family, we lived it, and we like to just let it lie most of the time.  If the subject comes up naturally, we talk about my father, but we never force it.
Love and memory should never be forced.
Happy Father's Day to all those who celebrate, and a nod to those, like me, who have chosen to leave it behind.

Another award...

Best Alzheimer's Blogs

forensicscience.net

Just won another award for this blog. Except that they think I'm a guy for some reason.
Had a Dad: The impetus of this blog was simple: to provide a space for a son whose father was struggling with Alzheimer's. His father has recently passed on, yet he continues to vent here.

Source: Top 50 Alzheimer's Blogs

update 06-21-2011: they have corrected the description to "daughter" with the appropriate pronouns.  Still unsure why they decided I'm a guy! 

$270 raised for Alzheimer's Association

The final tally of how much I raised with my tag sale (and related donations) is $270.  That includes a $50 check a guy brought, and a few other cash-in-the-jar donations.  I was hoping for twice that.  But it's better than nothing.  I ended up NOT taking the money I spent on the ad back, because the total was so low, so you can throw in my $30 worth of ads as part of my donation!

Slow news day

You know it is a slow news day when they put ME on the front page of the paper, above the fold.
The electronic link contains basically the same text as the print article, with a different title:

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Blog chronicled woman's dad's experience with Alzheimer's
Posted: Thursday, June 2, 2011 10:17 pm
Russell Blair
WALLINGFORD - Search "Alzheimer's blog" on Google and the No. 1 result, above the Mayo Clinic, belongs to a local woman who chronicled the experience from when her father was diagnosed until his death 1,253 days later.
Roberta Piedmont's blog "Had a dad," began as a way to express what she was going through, dealing with her father's disease, but it quickly grew in popularity and became a source of support for others.
"I started it the day my dad was diagnosed," Piedmont said. "I wanted it to be a record of what happened - a journal."
Eventually more and more people started reading it and reaching out to her. Piedmont said she began to see the blog as an important tool for helping others going through the same thing realize they are not alone
"I wrote about the suckiest things," Piedmont said. "I wrote about embarrassing, terrible and awful things. Other people think they're alone, but they're not."
Piedmont's father, Bob Rizza, worked for more than 30 years in the car business in Meriden and Wallingford before he had to retire at age 62 due to the beginning stages of the disease. He was diagnosed a year later, on June 21, 2004, and died on Nov. 26, 2007.
Christina Bowers, a friend of Piedmont's whose mother suffered from dementia, said that Piedmont always talked about the blog. "She's a writer at heart, this is who she is," Bowers said.
Bowers said she felt that she and Piedmont were on a journey together, and they often swapped stories. It made her feel better, Bowers said, to be able to confide in someone who was dealing with a similar situation.
"There are some resources out there, but a lot of them require you to make a phone call or meet with strangers," Bowers said. "On the Internet, you're anonymous. Roberta found it soothing."
Joyce Kent, another friend of Piedmont's, said the blog was an important tool to chronicle what her father was going through so other people in the same situation could relate and compare. Kent said the blog helps from "the research end of things." With blogs such as Piedmont's people can compare symptoms, timelines and get a better understanding of how the disease affects different individuals, Kent said. Kent had a close friend who was diagnosed with Alzheimer's and could sympathize with what Piedmont was going through, she said.
Piedmont has kept up with the blog since her father's death, though she admits she doesn't post as often as she used to. On Wednesday, going back to posts from 2004, Piedmont said she likes the blog because it gives her the ability to relive a memory if she wants to, but that "these memories aren't stuck in my head, I've written them down on paper."
She also hopes the blog will shed light on some of the effects of Alzheimer's that people don't like to admit. Alzheimer's is often portrayed in movies and television as a disease that one can "snap in and out of," like in the movie "The Notebook," Piedmont said." But "once they're gone, they're gone," she said.
Piedmont has donated money to the Alzheimer's Association in the past, but has a big fundraiser in the works for this weekend. She is hosting a tag sale on Saturday from 9 a.m. to 2 p.m. at her home, with the help of Kent, Bowers and several other friends. She said she had been planning a tag sale for a while, but when she learned the Alzheimer's Association was temporarily matching donations, she got friends together for a sale. All the proceeds will go to the association.
Piedmont said she hopes the money will help the association in its efforts to find a cure for Alzheimer's. Of the terminal disease, Piedmont said, "I know cancer survivors, but there are no Alzheimer's survivors."
"I lost my dad," she said. "If I can help save somebody else's dad, it's worth it."
Visit Piedmont's blog at alzheimersdad.blogspot.com.

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I've already gotten one call, from a lady whose husband died of Alzheimer's, who is bringing by a bunch of stuff to donate. That brings it to 7 families and 1 business. I am humbled.

there are no Alzheimer's survivors

Last week I sent a brief email to the paper, telling them shamelessly how I am a top-ranked, syndicated, award-winning blogger about Alzheimer's and I'm having a huge tag sale this weekend and giving the money to charity.  And they called me yesterday.  Interviewed me today.  I tried to come up with some thoughts to share; in no particular order, here they are:
There are no Alzheimer's suvivors. There are no hollywood-style moments of perfect clarity. From the moment of diagnosis--from before then, even--it's all downhill.
When I was a teenager, several people around me died of cancer--my gandpa's sister, my friend's dad, my grandpa--and I thought cancer was the worst thing ever. And if I thought about death, I wished with all my heart 'please don't let it be cancer.' Now I've seen Alzheimer's Disease and it's so much worst. There is no proper goodbye with AD.  It's just a downward spiral, and every time you think it can't possibly get any worse, it does. Now I wish not to get Alzheimer's with a fevor unknown to my teenage self. 
I'm sure there is a worse disease out there than AD. I don't want to know. Honestly. I don't even want to imagine it.

snowy interlude

I wrote this during a blizzard, on my phone, in the middle of the night, this winter, and forgot all about it.  Discovered it last night.
________________________________________
In a snowstorm thinking about Alzheimer's Disease. It never goes away. Wondering: is it worse to have it or to watch someone have it? My Dad knew--he always said, "the thing in my head is killing me"--but I don't think he ever understood exactly what "that thing" was.
Watching him die like that--the longest 3.5 years of my life--has taught me there can't be any hell in the afterlife. Alzheimer's is hell. When you get to the point that, if you have a prayer, that your prayer is for your loved one to die and free you both, that's hell right there.
It's great that that initiative got passed and got AD some attention.  But what we really need is a realty show where you get to see a grown man peeing in the hall or in the closet because he's forgotten where the bathroom is after 35+ years in the house. Or peeing his pants because he's wandering around looking for bathroom, and then crying in shame. Beating his wife. Attacking his daughter. Locking his family out. Screaming that people have stolen his money or his special things. Not knowing who his daughter is--but being able to recognize her car or phone number, but not why those things are special. Being taking away by the police for trying to kill his wife. Attempting to strangle a doctor with a stethoscope, then being literally tied to the bed. And brief moments of humor--saying that the butterflies are swimming. Hogging the puzzle pieces with faces or animals. Being in love with chartreuse shoelaces and coloring his sneakers green with a sharpie--and those sneakers going into the cleansing fire with him at the end. Thanking his daughter for his Alzheimer's Safe Return bracelet as if it were a lovely gift.
I want all that, good and bad and ugly, on TV for all to see and know. Until then, it's all right here on this blog.
Happy New year. May your days be dementia-free and your nights peaceful.