Monday, December 19, 2011

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.

Sunday, October 09, 2011

"Still Alice" book review

I read Still Alice last night.  For those of you not familiar with it, it's a novel written from the perspective of a 50-year old woman with early onset Alzheimer's.
I was expecting something more like Flowers for Algernon, especially as the title character starts off with a PhD and as a tenured teacher at Harvard.  If I was writing such a novel (and I still might), I'd do it that way.  If you haven't read Flowers for Algernon, it's a story about a mouse named Algernon who is made incredibly smart, and then a human named Charlie who goes from basically mentally retarded to genius by the same process, and it's all told in journal form by Charlie.  The unreliable narrator is a great tool when properly done.
I am proud to say that I did not cry, even when she got diagnosed, until page 111, when she started talking about butterflies.  My dad loved butterflies long before (and after) his diagnosis, and we covered his memorial picture board in butterfly cut-outs.
I don't think, however, that Alice took me into any uncharted waters.  They were all familiar.  She can't find the bathroom and pees on herself and feels shame.  She forgets one of her daughters.  She makes mistakes at work and doesn't realize her poor performance.  She was never violent like my dad, but that's rare.  I expected more frustration and more control issues.
Two things did bother me, that were left hanging.   She forgets to go to her support group meeting, and she can no longer deal with her e-mail to respond to her EOAD friends. It doesn't seem like anyone ever takes her to the meetings or that she ever talks to those people again.  Then she leaves the suicide instruction document open on her computer and no one ever remarks on it or looks for her vial of sleeping pills.
The suicide pact was probably the best part of the novel--her way of checking if she's still cognizant of her surroundings.  She puts a series of questions on her Blackberry that she has to answer every morning at 8 a.m. and if she can't, she has to go to the Butterfly (suicide) document on her computer and follow the instructions immediately.  At first the answers to the questions are detailed and crisp--the exact address of her home and office, the exact birthday of her daughter.  Then they get less so, until finally she is simply saying what state her home and office are and getting the birthday completely wrong.  But she doesn't even realize it, of course.
I didn't like the character of her husband very much.
His refusal after a while to exercise with her, the whole Sloan-Kettering thing--he was a jerk.  Their marriage felt fake.  I never thought they loved each other, there was no passion.  They never had sex--implied or implicit, offscreen or on.  And I would think that's an important part of EOAD--do you still have sex?
As far as a character study of her, and of the disease, it was fairly brilliant, but all the other characters were flat, cutouts moving through her world, even when she is barely diagnosed and showing symptoms.
I would give this book 4 out of 5.  It's really good, but it could have been amazing.
I was thinking about the book after I finished it, and how Alice is treated by her co-workers and friends after she admits to her diagnosis, and I realized that it would be better to lie to the world and say "I have a brain tumor."  My great-uncle had a brain tumor that caused dementia and everyone rallied around him.  My dad had plain old dementia and he was a pariah.
(book cover from Amazon, butterfly montage from used it on my dad's board)

Sunday, October 02, 2011

Walk to End Alzheimer's pics

The Walk to End Alzheimer's was this morning, at Lighthouse Park in New Haven, which is on the beach and has an indoor carousel.

The four flowers from my team.  The colors got confused somehow, my friend's shouldn't have been yellow which is caretaker but they told us yellow was supporter. 

My hubby with his Alzheimer's shirt on.

My mom with her Alzheimer's shirt on.

I found this cool rock on the beach with a cross on it.  I'm not Catholic but my dad was so I kept it.

Me with some of our flowers.

Part of the Memory Garden.  Blue was for people who had Alzheimer's.

Starting line.

3 memory flowers for my dad, planted in my yard.  They are fun, they spin like pinwheels.

I raised, between my tag sale and Facebook, almost $400 for the walk (and they gave me 4 t-shirts, even though it's $100 per shirt).  It was very crowded.  The day started out rainy and horrible but by the time we got there, it was gorgeous and they said it was the biggest turnout ever.  When I tagged my pictures on Facebook with Lighthouse Park, it said 1077 people were checked in there--and I didn't use FB check-in there (I used FourSquare) and neither did anyone with me. I'd say over 2,000 people.

Friday, September 30, 2011

In the paper again, for this weekend's Walk to End Alzheimer's

I was interviewed yesterday about the Alzheimer's walk this weekend. Last weekend, I had another tag sale (mostly books and jewelry supplies) and raised another $120 (miserable rainy weather) for my team, adding to the $200 or so donated through Facebook friends.

OCR article text
Daughter raises funds for Alzheimer’s work
By Russell Blair, Record-Journal staff
Roberta Piedmont managed to raise more than $1,000 on her own this year for Alzheimer’s research.
What if more people pitched in to help eradicate the disease, she wonders.
“I had a friend tell me ‘with enough shovels, you can move a mountain,” she said.
A year of fundraising for the Alzheimer’s Association will culminate for Piedmont this weekend when she takes part in the Walk to End Alzheimer's in New Haven on Sunday.
“I’m looking forward to it. It's a chance to meet other people and talk and share stories,” she said. Piedmont’s team includes her mother, her husband and some friends. Piedmont said that while many people know of Alzheimer’s, only those who have seen its effects understand the severity of the disease.
“When I tell somebody, they either look at me with a blank look on [their] face, or their own story comes out,” she said.
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.
Piedmont has also advertised the walk on her popular Alzheimer’s blog, “Had a Dad.” Piedmont’s blog is the No. 1 result on Google for the search of “Alzheimer's blog,” above the Mayo Clinic's blog and a blog maintained by the Alzheimer’s Association. Piedmont's team name for the walk is the web address to her blog: Piedmont said her own fundraising is an example that every individual can do something to help.
Christy Kovel, senior director of communications for the Connecticut chapter of the Alzheimer’s Association, said the walk is the biggest annual fundraiser for the chapter.
“It’s our signature event,” she said. “We’re expecting a very large turnout.”
Last year, the organization had more than 3,500 walkers in events across the state.
“All kinds of people come,” Kovel said. “We get people who lost family members to the disease, people who are suffering from the disease, those who bring their loved ones who have the disease and people who work at facilities that provide care for Alzheimer’s. There are children’s activities; it’s really a family-friendly atmosphere.”
According to data from the Alzheimer’s Association, 5.4 million people suffer from Alzheimer’s disease and someone develops the disease every 69 seconds. The organization estimates that by 2050, as many as 16 million people will have Alzheimer’s. In Connecticut, 764 people died from the disease in 2007.
Piedmont said that it’s important to raise awareness about the disease, and the effects it can have. The recent diagnosis of Tennessee women's basketball coach Pat Summit with early onset dementia, Alzheimer's type, has helped bring new attention to the disease, she said.
“Lately more people have been telling me their own stories. This is a disease that touches almost everybody,” Piedmont said.
The Sunday walk will take place at Lighthouse Point Park, 2 Lighthouse Point Road, New Haven. Walkers can register online at or in-person Sunday at 9 a.m.
(203) 317-2225

if you would like to donate to my team please click below or in the sidebar.

Tuesday, September 13, 2011

Alzheimer's and Dementia Clinicial Studies--Pay it Forward

A friend of mine sent me a link about Alzheimer's recently, and I was surprised--shocked--horrified--to read that new drugs and other treatments can't find enough volunteers.   I can't believe that.  We would have signed a deal with the devil himself if he had agreed to give my dad a drug that would have given him a chance at a longer, healthier life.
I don't know how most of these trials work, but I know that the one my dad was part of did NOT make him STOP taking his medicine, it only added new medicine.  And when we found out at the end that he was on the placebo, he received the real drug then.
The Alzheimer's Association now has a web page that helps match volunteers with clinical trials.  I'm lucky enough to live near New Haven and to have had access to Yale University for my dad's studies, but if you don't live around here that doesn't mean you shouldn't try.   There are even trials to sign up for healthy people who don't have AD--I added myself to their data bank.
Being in a clinical trial is about paying it forward.  I knew that the drug would probably not help my dad.  But down the line, it might have saved someone else from my family's pain.
image source
I am still accepting donations for my Walk to End Alzheimer's team--the walk is October 2, 2011.  If you are not already doing the walk and haven't donated to anyone, I'd appreciate anything.  This is my first year having a team and I'd love to show up with a lot of money to prove you don't have to be a corporation to raise funds. Click the to the left (or in my sidebar) to donate.

Monday, August 29, 2011

non pharma treatments for Alzheimer's/Dementia

There is a lovely letter here, to President Obama, about non-pharmaceutical treatments for Alzheimer's and dementia.
It reads, in part, "Drugs can't give people with dementia a life worth living. Non-pharmacological interventions can!" and includes a link to a petition to sign.
Hey, I think everything and everything possible should be thrown at Alzheimer's, including voodoo and the kitchen sink.  Sacrifice a chicken, then fry it up and eat it--it was gonna die anyway, right?  

Monday, August 22, 2011

Think first?! (reaction to a negative comment)

(begin rant)
I've been writing this blog for a LONG time, and I know I often talk about things that might make people feel uncomfortable--that's the road I've chosen to travel.   I have other blogs, on other subjects, and I often get negative comments on those.  But on this blog, NEVER have I had anyone say anything bad...until now.
(I'm not talking about spam--I'm talking about rude.)
I recently did a post about what Alzheimer's cost my family in terms of Social Security income.
This is what someone commented:   
"Some people don't think about their retirement thoroughly. And they take important steps before thinking about it twice or asking an expert."
WHAT?!  My dad retired because he had ALZHEIMER'S.  Did you miss that, jerk?  And my mom retired to be a CARETAKER for my dad, who had ALZHEIMER'S.   
There is nothing to "think about thoroughly" when you are sick with a fatal illness, or your spouse is. 
And if you are implying they should have had investments, I didn't even get into that in the other post.  But I will now.  My mom had a nice 401(k) and some other savings.  But there is a thing called a SPEND DOWN where the government makes you spend ALL your money before you or your spouse can go on Medicare.  So the retirement she did plan for instead went to $10k a MONTH on a nursing home until she ran out of money.  How do you plan for that, huh?  You got an extra $120K a year just lying around waiting to be spent on nursing care?  Good for you, I hope you live a LONG TIME and suck up all that money and someone comes along and tells you that you should have planned better and died quicker.
(end rant)

Thursday, August 11, 2011

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.

Tuesday, August 09, 2011

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)

Tuesday, June 21, 2011

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)

Tuesday, June 14, 2011

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.

Thursday, June 09, 2011

Another award...

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! 

Wednesday, June 08, 2011

$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!

Friday, June 03, 2011

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:

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

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.

Wednesday, June 01, 2011

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.

Friday, May 27, 2011

Tag sale for Alzheimer's, and Walk to End Alzheimer's

I've been unemployed for several years (a few temp jobs here and there).  I have no money to donate to Alzheimer's.  So I thought, why not donate other people's money (OPM)?
Next weekend I'm having a tag sale.  So far, I've got stuff from my mom and three of my friends--a 5-family extravaganza--and the money's going to Alzheimer's.  My last tag sale I got $600.  They have that matching program going on now, so if I can raise another $600, they get $1200.  And it's all OPM!
Because this cause is very near to my heart (but not dear, I'll never love this disease) I also send a blurb to the local paper. Not that anyone wants to see my fat face in the news, but if I can get more money (OPM) for the cause, so be it. I'll wear black, it's slimming, right?
I"m not sure how the Walk for Alzheimer's works; this is my first year having a team and the links I put in my sidebar don't go anywhere.  My team is named for this blog url: if you want to join my team or if you just want to add some money to my (so far) empty coffer.
If this causes touches your heart, why don't you do the same?  Everyone's got white elephant and tag-sale type stuff hanging around.  You can't donate it directly, but you can sell it and donate the money.  And your house will be cleaner!

Wednesday, May 04, 2011

what is EARLY ONSET Alzheimer's?

It has really been bothering me lately that the media (fiction and news) have be misusing the term "early onset" in reference to Alzheimer's.
Early-onset Alzheimer's is not early STAGE Alzheimer's. Early-onset Alzheimer's (which my dad had) refers to cases where diagnosis was before age 65. (My dad was 63.)
Someone who is 80 and just got diagnosed doesn't have early onset Alzheimer's. They have early-stage Alzheimer's. There is a difference!

Tuesday, May 03, 2011

Unthinkable: the Alzheimer's Epidemic

I received a Facebook message Monday about an Alzheimer's special Larry King and Dr. Drew talked about on Friday.  The actual special Unthinkable: The Alzheimer's Epidemic aired Sunday night (oops--I missed it).  Hopefully it will be shown again, or put on YouTube, or available on DVD.  Right now it's not on Blockbuster as an available rental.
If you missed it last weekend, tune in to "Unthinkable: the Alzheimer's Epidemic," a Larry King Special, which will air on CNN Saturday, May 7, at 8pm, 11pm, 2am ET.

Monday, May 02, 2011

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.

Friday, April 01, 2011


Wednesday I had a small red scrape or rash on my chest.  Yesterday I looked down and there were 2 more similar marks a few inches away and the first mark had gone all crusty.  I called the doctor.  This morning when I got up another one had gone crusty.  One of them was very round, the original one, and I thought, "stupid, it's ringworm, I don't need to go to the doctor."   I tell the doctor I think I have ringworm and she tells me she thought, from the message I left, that I had MRSA!  Apparently my verbal description fit the profile.
(I don't have MRSA.  Or ringworm.  She didn't actually know what it was but she wasn't worried.)
But it is pretty scary.  Obviously I was exposed to MRSA bigtime when my dad was dying of it.  I don't think it has an incubation period of over 3 years, but I never considered back then that I could GET it.  I worried about being a carrier and GIVING it to people. (Who knows, I might be a carrier.)
For those who have been living in a cave, MRSA (pronounced Mer-sa) is an antibiotic resistant bacteria (Methicillin-resistant Staphylococcus aureus) that is usually treated with a drug called Vancomycin. That drug made my dad sicker, plus his MRSA was inside him, which is what conspired with his Alzheimer's and other brain damage to kill him. 
My mom's mother's uncle (my great-uncle) died of MRSA too.  He had a hip replacement that broke and when they took it out he got MRSA in the incision.  My friend's aunt just had to have her arm debrided practically to the bone to get rid of a "surface" MRSA infection--she is still in a nursing home months later.
That friend tells me that she learned of a dreadful new creature. Honestly I thought she was kidding, because it is the stuff of nightmares, but she is not kidding.  VRSA is Vancomycin-resistant MRSA.  As in, no treatment.  It comes in 3 flavors: VRSA, VISA and hVISA.
It is very depressing.  My dad's story, as bad as it was, can be made worse but changing a single letter--a V for an M.  And I'm sure that somewhere, it's happening to someone else's father, mother, grandparent, spouse...Just awful to contemplate.  News articles keep saying there are miracle drugs coming, they will cure Alzheimer's Disease.  They were saying that about cancer 30 years ago when I was a kid and that's not cured yet. I honestly don't hold out hope for AD.