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Welcome to the Third Annual Wear the Lilac Day thread here on Gaia.
Join us on the steps of the watch house; sit down, have a cup of hot cocoa and a hard-boiled egg- just watch for the shower of arrows raining down from the roof.


If you're wondering what this is all about, look to the next two posts.

We're still questing for prizes- to donate to the thread, please send the gift or trade to the mule- Wear the Lilac Day.
Address all questions to the mule or to CaptainAcacia.

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Friends and Family Picture

Have you had a family member, or close friend diagnosed with Alzheimer's?
Have you lost a loved one, or close friend to the disease?
If so, and you would like to be included in a picture with others like yourself, please dress your avi in as much purple as you can– or as a character from the Terry Pratchett book Night Watch– and PM yourself to Shanra the Dragon Bard. Please adhere to the following instructions:

Please do not use any sort of background with your avi. Items around your avi are fine though.

In your PM to Shanra, please include who it is you know with Alzheimer's.

Once you PM Shanra, do not change your outfit until she PM's you back saying, "Saved".

Please do not ask to be included in the picture if you do not have some sort of association with an Alzheimer's patient.


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Membership is closed now- thank you very much to everyone who joined.
In order to participate in any of the contests, you must be a member.


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Alzheimer’s disease (AD) is an irreversible, progressive brain disease that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks of daily living.* As the disease progresses, people with Alzheimer's will need more support from those who care for them. Eventually, they will need help with all their daily activities.** Alzheimer's disease is a brain disorder with no known cure. The cause of Alzheimer's disease is not yet known. Alzheimer's disease is always fatal.*** Alzheimer's is the most common form of dementia, a general term for memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer's disease accounts for 60 to 80 percent of dementia cases.°




Source(s)
*National Institute on Aging
**Alzheimers.co.uk
***The Alzheimer's Reading Room
°Alzheimer's Association (alz.org)
Personal Stories


Please Note: We are unfortunately no longer accepting personal stories. The post has grown to the point where it stretches the page too far.

We know it's difficult to feel sympathetic for a disease when it hasn't affected you personally- but Alzheimer's is so frequently mocked that it's sometimes hard to see it as serious. Here are the stories of people who have had experiences with Alzheimers- if you have a story you're willing to share, please PM with mule with 'WTLD Personal Stories' in the header so we can add it to the post. Those who wish to remain anonymous will of course be respected.


Captain Acacia
I lost my grandmother to Alzheimer’s a few years ago. She lived halfway across the country, so we were constantly flying back and forth to take care of her. It was horrible to see how one day she would recognize us all, the next day she would need reminding, until the time she didn’t know what to do with a knife and fork, and needed help going to the bathroom. One day, she walked out of the house and downtown, trying to find the house she had raised my mother in, not understanding that it had been bulldozed years ago. Eventually someone found her in their garage, disoriented, and was able to call us to get her back. Grandpa put alarms on the doors after that.
She stayed cheerful, though, even until the end; some of the last things she remembered were songs. She died shortly after Christmas, and almost until her last day we would gather around her and sing carols, and songs in Armenian. She didn’t know who we were, but we always made sure she was comfortable, and that she felt safe.
She died after we had gone back home for Christmas, so we were once again halfway across the country when we got the phone call. Everyone took it very hard, particularly my mother, who had really wanted to be there for her in her last days. After two years, we’re still recovering– Grandma had been the center of the family for so long, nobody knew what to do. I still have nightmares about forgetting everyone.


anonymous
"My friend works in an Alzheimer's and dementia unit at a care center. By working there, she has realized how everyday is a challenge for the people who suffer from this disease, yet she still holds a certain kind of respect for them."


A.M.
About my grandfather. He was diagnosed three years ago. The illness is in the early stages, so he still remembers us. I try to visit him, but troubles with my parents have made that very difficult (I came out of the closet, told them my boyfriend is a transman. They didn't like it, so now I'm not welcome in their home anymore. Nor in the homes of any relatives who live near my grandfather. They don't want me to see him, they think I would 'confuse him', as they say. What they mean is that he would approve of everything I do, just like he always has, and they don't want to hear that.)


Shanra the Dragon Bard
My husband and I went on a trip to Hawaii some years ago, and we met his parents there for their 50th wedding anniversary. On the ride to our hotel from the airport, it became clear something was not right with his father. He knew we were living in Japan at that time, but he kept asking us if we were going to our house. We told him over and over that we didn't live in Hawaii, and eventually he stopped asking. During our stay, we visited the Pearl Harbor exhibit, something his father was very interested in seeing, as he had served there during the war. He even bought himself a hat to commemorate the visit, yet the very next day, sitting with him at breakfast, he asked me when we were going to visit Pearl Harbor. I kindly explained to him that we had been there the day before, and showed him the hat he was wearing. I spoke with my husband about the incident, and together, we talked to his mother. She said that this wasn't the first time this sort of thing had happened, and we encouraged her to get him to the doctor when they got home. Sure enough, upon seeing a doctor back home, it was determined that he had Alzheimer's. It became my mother-in-laws sole responsibility to care for him when they got home, as most of her other 8 children were not open to giving her the help she needed. We were still living in Japan, so we could not be there to assist her. She had one other son who lived nearby, and he did give her what help he could. My father-in-law eventually lost most of his short term memory, and didn't know who his wife was from one day to the next. He didn't even know that he was in his own home towards the end. At the end, his body succumbed to the ravages that the disease inflicts on the internal organs, and he passed away in a nursing home.


Spooky Girl Lisanna


Hi there. My name is Amanda. Today anyway. Tomorrow I may be someone's cousin Susie, someone's daughter Kristy, someone's granddaughter, a neighbor, an aunt, a friend of the family, or someone you know you know but you just can't remember their name. Who am I really? I am an Activity Director for people with Alzheimer's and dementia. I work everyday with people who have moderate to sever Alzheimer's. I make an impact in the people's live. Sure, I may act, I may "therapeutic lie", but I matter to these people. Imagine waking up, day in and out, thinking that you will see your family. Imagine one day you wake up and everything is different. Its not what you remember. You don't recognize anyone around you. You don't see your family. What is going on? A familiar face pops into view. A friendly smile and a "Hello, Carol. How are you feeling today?" They know your name, and you know their face. They care. - That's what I am to my residents. i am someone who cares, who takes an interest in their lives, their families, in their interests. I help with the confusion, and if some days they think they are at a church luncheon and I am their best friend's daughter, that's fine with me. Who am i to tell them their reality is false? If someone has lost a loved one and they are calling for them, who am I to say "I am sorry, your mother died 30 years ago." that is wrong. That is like losing your mother all over again, right from scratch. This disease changes people's memories, changes people's whole lives, but it doesn't change one thing. Love. Love stays through all the memory loss, all the flashbacks, all the loss of motor function. Love shines right through their eyes. If I care about my residents and love them, they can relate to that and remember what love is, remember that they matter to someone. Remember that someone cares. Even if it is only the lady pouring your coffee just the way you like it, or playing Bingo and passing out prizes. Because today she may be Amanda the Activity Director, but tomorrow she could be your best friend.


iExterminate

I lost my Nanny to Alzheimer's about a month ago. She was in the last stage of it and it was amazing how rapid her mind deteriorated within the past year after Papaw died. It was really hard to watch and she always had this "just go" motive in her head, even when she was in the hospital after a massive stroke. It's a painful experience and I wished that nobody would ever have to suffer through it like I have and lots of other families in the world have. sad


Melantha007
My grandfather passed away in October of 2006 after he fell, hit his head, and slipped into a coma from which he never awoke. This wonderful Texan cowboy had been diagnosed with Alzheimer's about ten years previous to that, and it degenerated his mind. When I stayed with them in Christmas of 2004 after Grandma (who is blind) slipped on ice and broke her hip, he frequently called me by her name. He did not know that his daughters were grown with grandchildren of their own. While in his rowdy youth in the U.S. Cavalry, he had been quite the smoker and ladies' man, and in his demented fits he thought he was that young buckaroo once again. Other than the memory loss and his increased lack of hearing over the years he was in perfect health. He had recently lost a lot of the weight he gained over the forty years since retiring from the Army with honors as a Major. Until he fell, and went into the coma from which he never recovered, he was in the yard every day, and the fruit and vegetable plants there still grow wild as a testament to his loving care. I don't know about any of my cousins, but Grandpa was (and still is) my hero.


Matsuri Michiyoku
my dads gilrfriend's uncle has it. (im realy close to the family) after they found out he had crashed ( i guess he forgot how to drive) luckly no one was hurt. also he has 2 little girls so they'll grow up and he'll forget who they are.


The Ariadelle
Alzheimer's took my grandfather from me. It didn't just take his life, it took all of him. This disease stripped him of all knowledge of the family that loved him, that saw him everyday, that he worked so hard to keep sane. Grandpa Phil was one of 2 good hearted souls from my Bio Dad's side that kept their family together. His love and humor and well traveled stories kept everyone smiling no matter what.

My Mother was probably one of the first one's to notice something wrong with grandpa. He loved going on walks, and because he lived by a gorgeous park he could spend hours along trails or on the loop enjoying the day rather than sitting at home(if no one was there), sometimes he'd even take us on a walk with him. One trip he and my closest cousin went around the loop, no more than a twenty minute walk normally, and didn't come back before dark. After an hour our parents began driving the neighborhood looking for them, worried that they'd gotten into trouble only to find them outside someone else's house many blocks away arguing it was his own.
My grandmother was unable to care for him once it became worse and he spent the last 2 years of his life in a nursing facility nearby. It only got worse once he'd got there. When we'd visit he'd call my sister and I by his own sister's names, and not even remember my mom(though remembered my father was his son, up until the last few months). It would tear us up, hearing him ask every ten minutes or so if he was home, or who we were, and some trips it would take everything in me not to cry in front of him.
He is deeply missed, and without him his children have lashed at each other until they no longer speak. He was the joy, the love, the glue that kept my father's side together until the end.


Divinity Statue
I'd like to add my story to the list. No need to be anonymous.

My father had his second heart attack and first stroke when he was 57. He had a hereditary heart condition and had to be palpitated to get his irregular heartbeat back to normal. When they did the palpitation, a rare thing happened where the shock damages the brain. This resulted in him acquiring Alzheimer's Disease. We didn't really notice until about half a year after the heart attack. It got progressively worse with him not being able to do his crossword puzzles that he'd do every day and not cooking things correctly (he once made a grilled cheese inside-out). In the past 6 years he's come to the point where he can't drive anymore, can't use the phone because he's losing his ability to form sentences, and his cognitive abilities are diminishing at a rapid rate. He's beginning to get violent as well, and gets angry whenever you question anything that he does. It's hard to get used to, and since it's happened I've become very intolerant with people who make fun of it. My brother always calls him an idiot and a retard, and I feel like punching him in the face with a brick. It's not their fault, and I wish people would understand that more.


Anonymous
When I was 13, I moved away from my mom and brothers to take care for my grandmother. She lived in a senior citizens home. She wasn't supposed to be alone, so I agree to go (plus she bribed me with McDonalds). At any rate, a lot of the seniors there had Alzheimers. There was neighbor I was really close to. She was able to remember me... but not her own children. Which I felt very guilty about it. It got to the point where I didn't talk to her or her husband cause I wanted her to remember her kids more then me. Next thing I new, she died. A month after her death, I received a letter in the mail from her husband that she had written. In it, it had said:

"You were a very cheerful and wonderful daughter. I wish I could have seen your smile and hear you sing again one more time. Keep singing for me."

And I cried. 2 years later, my grandmother forgot several things she did one day. The doctor said she is may be begining the stages of Alzheimers. I pray it doesn't happen. I can't go through that pain again, and I don't want to see her suffer.


Zombilious
My grandmother died last year at 92 years old. She had been fighting the disease for five years. I remember when we all started to notice it was happening. But no one in the family would admit. My grandmother wanted to take charge of this, she knew what was happening. One Christmas she asked my father if he would get her some sleeping pills. That night I found him crying, first time I have ever seen that. We all visited at much as we could, but with my brother and I getting ready to graduate and us living in Alaska and my grandparents in Washington. It got hard. Then my father died a year later, from a heart attack. My grandmother had progressed so bad every time we told her my dad died she would grieve over and over again. Eventually we stopped and whenever she asked where Clarkie was (was the nickname she had given him) we'd tell he was at the store or away. By the time I was 19 she was gone and thought I was her sister and my brother was my father now. She would always yell at me cause the memory she had of her sister was pregnant. Grandma would scream at me asking me where the baby was what I had done with the baby. By the time she died all she spoke was in German. She was originally from Germany and German was her native language. None of could understand her anymore and we all had to guess. She died four days after my wedding in her sleep with my grandpa by her side. The hard thing was I couldn't really cry. It was like she left me so long ago and I had grieved then. But I miss her to this day, and always will. I wanted to share my story so everyone understood what it could be like. And how hard this disease is on the family.


Lady Alani
Last summer, I met a lady at the local veteran's home. She was a beautiful woman, but her eyes were sad... I started talking to her, and I walked with her sometimes, and every day, I knew she didn't know me. I knew that having someone to talk to made her a little bit happier...but I was just an unfamiliar face to her. I started thinking, and I felt so sad for her, because I knew she had to be lonely, not remembering anyone to whom she spoke. I felt bad because I had no way of telling her what a difference she made in my life. Then, on her birthday, her husband came in to see her. He brought her a beautiful bouquet of flowers, and grinned from ear to ear as he kissed his wife. Her eyes lit up brighter than I'd ever seen them before. It made me feel happy to know that there was at least one person in her life who could make her feel happy, and bring light to her beautiful blue eyes again ♥

I know that I mean nothing to her, but I wish I could go to her and just say how much she means to me.


Anonymous
A few years ago I lost my great grandmother to Alzheimer's. She was living in a nursing home for the last few years of her life because no-one in my family had the money or the room to care for her.

The last time I saw her was a year before she died. She couldn't remember who I was when I went to bring her back to her room, asking why I was here despite talking to her on the phone just before we got there. It took so much not to cry in front of her.

This woman had taught me so much when I was little, she babysitted me every day before and after school because my dad had to work early and late. She taught me that manners are everything and how to be a proper lady.

To this day, I miss her. Every time I see a picture of her, I try not to cry.


Anonymous

My grandfather was already diagnosed with Alzheimer's by the time I frst met him eight years ago, when I was 8 years old. Because he lives half a world around and as a result of financial complications, I have only met him once in my life and the memory's are still fuzzy. Last year, he was hospitalized for Alzheimer's permanently. He had already began to lose his memories and was barely able to recognize his wife or my mother who went back to visit him. Last month, on April 9th 2011, he passed away. While I understand I should be grateful that he's no longer suffering, it hurts a lot to think about it. Regret eats at both me and my mother that we couldn't afford to see him. I remember that day I spent hours crying. What made it worse was that because of the time zone difference, it was April 8th here, and my father's birthday. Its already been a month, yet I still shake and fight back the tears constantly.



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The author Terry Pratchett (now Sir Terry Pratchett) was diagnosed with Alzheimer's in December 2007. He has continued to write, but with difficulty.

Pratchett's book Night Watch (2002) tells the story of the Glorious People's Revolution of Treacle Mine Road, and the way it was remembered every year. In the book, all the characters who "were there" at the Revolution wore a lilac plume on their helmets on the anniversary of the Revolution- the 25th of May.

A group of Pratchett fans have started a tradition of wearing a lilac*- or purple, at the very least- on May 25th to raise Alzheimer's awareness. How does wearing a flower or a color raise awareness? When someone comments on your attire (which they're likely to if you have a large sprig of lilac tucked behind your ear) you can explain what Alzheimer's is. It's a much more memorable way of spreading awareness when you have an interesting context to relate it to.

As an aid, we have a PDF that explains things briefly and has a link to this thread: [X] (updated link)


*if it's possible, support the original fans that came up with the idea (we're not affiliated them, but it's good to give credit where credit is due): [X]
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Contests!


Tektek Contest!

There are two elements to the tektek contest: one, the Discworld avvie. The prize for this will be the Glorious People's Republic of Treacle Mine Road package, which includes everything on that tektek.

To enter, send a tektek based on the book Night Watch (or another Pratchett book) to Shanra (see below).

The second part is the lilac tektek contest. To enter, send a purple-themed tektek to Shanra.

Contact info:
Shanra the Dragon Bard.
To view the entries, go here.

Art Contest
Still U/C

Shanra's Strip Blackjack
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Be the first to get 21, or the closest without going over 21, and you will win this lovely purple towel.

According to, The Hitchhiker's Guide to the Galaxy: "A towel, it says, is about the most massively useful thing an interstellar hitchhiker can have."

Game Instructions

I will generate a number between 1 and 11.
You will generate a number between 1 and 10.
You will continue to generate numbers between 1 and 10 until you either reach 21, get close to 21 and decide to Stay, or you go over 21. In which case you lose.
The first person to get 21 wins the towel.
If someone stays on a number higher than 16, everyone else has to try and beat that number. Whoever gets the highest number first, at the end of the hand, wins the towel!

Winners

Psychic Commander



IRL Awareness!

This is self-explanatory enough; show us what you're doing to raise Alzheimer's Awareness. Put a sign up in a public place; show a pic of yourself decked out in purple from head to toe; wearing a lilac-plumed helmet– you get the idea. Don't do anything dangerous or silly, but be vocal.

Prize: User Image Lilac Finch

Send all entries to CaptainAcacia.
Contest Entries!

This post will contain entries and/or links to separate threads once the contests are fully set up.
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