I realized something was wrong the day my younger sister's and I went to Delaware for a "family reunion" at older sis's house. I could see it in her eyes. She wasn't really paying attention to what I was saying. Instead she was waiting for a pause from me so she could speak. And what she said had nothing to do with what I was talking about. I can't remember exactly what it was that she said but I do remember thinking, "Geezzzzzz...that was rude. She isn't even paying attention to my conversation". I even mentioned the "ignorance" to my sisters on the ride home. They concurred. Something was odd about big sis.

That was almost three years ago. Since then I have come to learn that "it" had started happening well before the reunion day. BIL told me of a few times when sis was in auto accidents. One time she totalled her car and when BIL got to the accident scene sis was just sitting in her car. The accident was her fault and she hadn't even gotten out of her car to see if the people in the car she hit was OK. That was so out of character for her and if you knew her you'd know just how odd that behavior was. Instead, she got out of her car when BIL got there and got in his squad car (he's a cop) and asked to be taken home...that she was hungry. Not once since then did she ever mention the incident.

A friend of hers tells of a time when she and sis were driving to the shore. Sis was in the left lane (fast/passing lane) and started to slow down to a crawl. When the friend mentioned to sis that she should speed up or get in the right lane, sis looked down to check her speed as if she had no clue that she had slowed down. Cars were passing her on the right and beeping and flipping her off and she didn't see anything wrong with her driving. Her friend made her pull over and she drove the rest of the way there and then home again. Her friend tried to question her about it but sis didn't know what she was talking about.

Then there was the two times when she was hospitalized (I only knew about one time) for a "nervous breakdown". She and her daughter had been arguing all the time and sis kicked her daughter out of the house. Again, this was not in character with her "normal" self. Sis had become angry at everyone. She was spiteful and mean to her children and grandchildren. She would scream at the top of her lungs at her husband. He had no choice but to suggest that she seek medical attention. A hospital stay and some medication and sis was "normal" again. But not for long this second time.

Soon she began forgetting things. First it was simple things like where she put her ring or letting the dog in. Then it became more important things like something cooking on the stovetop or did she even feed the dog for the past 2-3 days. Then her speech began to get jumbled and she couldn't follow a conversation. As soon as you'd say something to her she'd forget what you said. But ask her about the Yes concert in 1974 and she could tell you what they were wearing! She started acting like she was in pain and she'd grimace and cry out like something was hurting her. If you asked her where it hurt she couldn't tell you. That's because there was no pain.

When BIL finally told me that he had to hospitalize sis, a year had passed since that reunion I spoke of. He kept thinking things would get better. He kept thinking this was a passing thing. He kept wishing it would pass faster. He wanted the doc's to give her some meds so he could take her home. It didn't get better...it got worse. She became obsessive/compulsive. She became incontinent. She couldn't read or write anymore. She didn't know what day/week/year it was. Conversation with her was impossible. Her eyes were void of emotion. Her children and even her grandchildren meant nothing to her. She had to be lead around like a child and told when to do everything. She knew she wore a diaper but didn't care. She'd ask anyone who was around to change her. It could have been the cable guy...she didn't care who it was.

I cried...A LOT! But I never let her see me cry.

We watched cartoons. Sis NEVER watched a cartoon in her life. Even when we were little kids...NEVER! Suddenly she liked Huckleberry Hound...to which she referred to as Huckleberry Finn. I laughed and quizzed her about that one. She finally got it right. We laughed together. I tried to help her remember that she loved to have a manicure at least once every two weeks. She has the most beautiful hands and fingernails (takes after our mom in that respect). She didn't want anyone touching her nails anymore.

We had to take her computer away early on because she was spending money they didn't have on nonsensical stuff. This was when she could still read. That faded after a while, but while she could still read it was dangerous to let her on the internet. However, we are now the proud owner of some collector series of tiny metal cars and a "free" showcase...among some other ridiculous things we would never buy for ourselves. We also had to take away her cell phone back then. She'd call me or someone and then forget she had made a call and set her phone down and leave an open line. The bill got out of hand.

The F.O.P. had a benefit for BIL and sis. It was amazing...the turn out. The love from everyone in the community, and across the state actually, was something to behold. The funds raised helped to pay for the hospitalization that the insurance wouldn't cover at the time. It also allowed BIL to hire in home care that he would never have been able to afford otherwise. Funny how BIL can put his life on the line on a daily basis as a cop and his insurance won't pay for the mental health of his wife. This country's health care system sucks!!! But I digress.......................

Anyway...just recently the doc's at Johns Hopkins wanted BIL to allow them to drill into sis's head and take out a piece of her brain to study. BIL was scared to submit and scared not to. What if he doesn't and "it" is the one thing he should have done? What if he does and she dies...or worse? OMG, it probably sucked to be in his shoes at that decisive moment...huh? It sucked to be me and I didn't even have to be the one to make the decision. I was actually glad it wasn't up to me! All I could do was lend moral support and look into sis's eyes to see if she could somehow let us know what is right and what is wrong. It seemed to me that "no" was not an option and "yes" was the hardest thing to say!

The doc's were hoping to find "vasculitis". When the surgeon came out of the operating room he told us that he didn't think that was the case. He couldn't know for sure till the biopsy results were in and specialist's discussed the case, but initially it didn't look like anything he had ever seen or hoped to find. Talk about popping someone's balloon! I was devastated! And, it was hard to tell but I know BIL was too. He's always so upbeat and positive on the outside but I imagine he is in constant turmoil deep down. He'd never say so though. I love that about BIL.

Lo and behold (sparing all the in-between details) it turns out sis does have vasculitis of the blood vessels in her brain. Cause? Unknown! Could be a number of causes (high fevers and convulsions in childhood, medication during "nervous breakdowns", the luck of the draw at the right time in her life...etc.) but we'll never know for sure. We do know that the initial diagnosis of encephalitis by mosquito bite isn't the cause or the real diagnosis. It could have been the case if we hadn't of let them do the biopsy...but it isn't. We'll just never know. But the good news is that they have started her on a powerful dose of Prednisone (steroid...80mg) and it seems to be helping. But then she got a severe infection at the biopsy site and had to be hospitalized again. They hoped it wasn't staph (sp?) and sent out a culture to find out. They cleaned the site and inserted a titanium plate in sis's head. I call her "iron man" now. She laughs! I think she actually remembers Ozzy now. Cuture results came back and it was ecoli. Good and bad news. She is home again with a pick-line (sp?) in to give her antibiotics. The wound is healing nicely now and they'll remove said pick-line on her B-day (March 10).

So...on Wednesday, 20th February, I called BIL to say hi and to talk to sis. We had our first coherent conversation in over 2 years on that day! I almost fainted and shit myself! I said something...she responded. She said something and I replied and she responded right back at me! I started to cry like a baby! I hung up and called right back to test sis. I told BIL that my 50th B-day was coming up the next friday (22nd) and sis hasn't known anyone's B-day in a few years. I asked him to ask her if she knew what day friday was and if anything significant was happening that day. He showed her the calender and she said yes...it was my B-day...my 50th B-day at that! She fuckin' knew it was my B-day coming up! She hasn't known that for so long. He called me back and put her on the phone and I told her thank you for remembering and she said of course she remembered. She said she was 52 and I was 50. I said No...you aren't 52 yet...when is your B-day? She laughed and said March 10th. I cried some more. Then she offered that our baby sis's B-day was August 20th. I said No...who's B-day is the 20th? She said, "Oh, I always get those two mixed up. Next youngest sis's B-day is August 20th and youngest sis is August 17th". By this point in the conversation I was a bawling nut case! OMFG! We were discussing things and dates and actually holding a "normal" conversation!!!!!!!!!!!!!!!!!

There is no B-day present better than that one!!!!^^^

NONE!


So that's what I've been doing for the past few months. How bout you?

__________________
Minds are like parachutes. They only work when they are open.

~Thomas Dewar~

(((((((((((((((((((((((((((((((((((((((((((Lixy))) ))))))))))))))))))))))))))))))))))))))))))))))))

__________________

Si à travers nos veines coule encore le sang...
Si dans les jeux d'enfants on entend encore l'accent...
Si nous sentons encore l'espoir de nos grands-parents...
Si dans les voiles du large souffle encore le vent...
Y'a jamais eu de Grand Dérangement.

Thanks for the hugs (((((((((Neige)))))))))!!!


BTW...that av? Yum!

__________________
Minds are like parachutes. They only work when they are open.

~Thomas Dewar~

I'm glad they finally are able to treat her so that you can have her back!

__________________

The practice of putting women on pedestals began to die out when it was discovered that they could give orders better from there.~ Betty Grable

If I wanted your opinion, I'd remove the duct tape and ask you for it.~ Me
<~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~>
One man's dream is another man's nightmare~~~~> §¤ Lilith ¤§
~>My Scribbles<~
==>Gone Shopping<== ~Just a Quickie~ *~A Celebration Vacation~* ~Surprises~ Sleeping With the Window Open
What Did You Do Today? Self Defense Class ~Short Sweet Snippets~ § Summer Spin § Story Challenge Submission Pajamas

I know Lil...It's been an amazing journey! I'm scared to be overly optimistic. I don't want to have my balloon busted again. We just take it one day at a time.

Please keep her and BIL in your thoughts!

__________________
Minds are like parachutes. They only work when they are open.

~Thomas Dewar~

Oh ((((((((((((((((((Lixy))))))))))))))))) way to go for your sis! I was worried you were going to tell us she had dementia, but that's such good news.

I can understand your cautiousness, but at least you will appreciate the time you can spend with her now, whether it's a permanent change for the better or not!

I'm so happy for you - your family will certainly be in my thoughts.

__________________
"Time flies like an arrow -
Fruit flies like a banana"

M Y - N A U G H T Y - P I C T U R E S ! !

((((((((((((((((((Loulabelle))))))))))))))))))

TY sweetness! TY so much!

__________________
Minds are like parachutes. They only work when they are open.

~Thomas Dewar~

My heart goes out to you and your family and understand the impact on you over this period of time.

It will be 16 years ago this June that my wife Irene was travelling between clients when she was struck head on by a VERY careless driver. On the initial impact her face went through the steering whell and was creshed by the dashboard. Everything from her lower lip to the top of her head was crushed into small pieces likecrumpled potato chips. The impact sent her car careening backward ind hit a retaining wall. Her brain slid forarward inside her skull and the frontal lobes were deeply scored.

Up to that time she was a part time college prof and a full time computer tech. In an instant, she was left with trauma induced epilepsy, seizure disorder, organic personality disorder, cognitive skills deficiency, spatial temporal deficiencies, short term memory loss and images seen by the eyes do not necessarily register the same on the brain.

Over the years, I have taken care of her myself, taking her wherever to get the best treatments available. She has some assemblence of life and is able to fuction as an adult in some mental areas while limited to an 8 yr. old in others.

I know what it is to miss someone you once had and I can only imagine the joy when you get them back. believe me when I say, I cheer the victory of getting your sister back and know like no one else just how grateful and appreciative you are and the lessons you will take from this. Bless you for hanging in there and never let a minute pass where you don't cherish your times together.

Damn, what a wonderful present. You are blessed, Lixy.

Take what you've got for as long as you've got it.

__________________
Calm, quiet, smooth, devastating

((((((((((((IM)))))))))))))

We never know what we've got till it's gone. At least most of us think that way. I've tried to never take anything for granted. Life is too short to pretend that there's always tomorrow!

TY for your kind words and for sharing your story. My heart goes out to you and your wife and family!

((((((((((rabbit))))))))))


((((((((((oldfart))))))))))

__________________
Minds are like parachutes. They only work when they are open.

~Thomas Dewar~

((((((Lixy))))) and hugs to all others who are dealing with difficult things at this particular time.

I think this shows just how strong you are Lixy - I know you posted little bits here and there, but not really how bad it actually was for ALL of you, not just sis. To carry on posting here as though all was OK... well, don't know as I could have done.

So, yay you!

'course, it means you've got about 6 months of picture-taking to catch up on, so GET ON WITH IT!!

DM

P.S. ((((((Lixy))))))

P.P.S. (((Manly Hug))) for IM1469.

P.P.P.S. You know, I think Pixie Prayers should be copyrighted - I reckon they DO work!

DM

__________________
The selfish, they're all standing in line
Faithing and hoping to buy themselves time
Me, I figure as each breath goes by
I only own my mind

((((((((((fzzy))))))))))

((((((((((dm))))))))))

__________________
Minds are like parachutes. They only work when they are open.

~Thomas Dewar~

You know that the Mrs and I and all those kids at Before and After Care have been keeping you and your sister in our prayers ever since we first learned of the problem. Those prayers will continue. We love you guys!

(((((((((( LIXY ))))))))))