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Old 08-19-2009, 01:21 PM   #1
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UP and down

i have tried to post 2 times now and keep hitting the wrong keys.
my story--i have been taking care of my parents for the last 10 years in one capacity or another.
at the time of my mom's passing in march of 08 she had been wheelchair bound for 5 years.
my dad was her main caretaker until the Alzheimer's kept him from processing things he should do. before that he cooked and cleaned and was always busy. when he couldn't do things, i had help come in during the days.
in the past year my dad has asked about his wife only 2 or 3 times. then he asked where she was out of the blue again last night. even said he was looking all over for her. i can't bring myself to tell him the truth because i did that before and he just grieves and says no one told him.


now he has become aggressive and i know it is because of frustration but he is still strong and hard to handle. the last time he stayed for respite care they called me because they could get him calmed down. cut my respite 2 days short too. Dr gave him xanax but i don't know if it is enough.

both of us are suffering from mood swings...label this week "down"

 
Old 08-19-2009, 03:48 PM   #2
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Re: UP and down

Your father's brain is failing in the area that covers his personality. My mother also got very aggressive towards her caregiver (my sister). She'd scream, slap, pinch, kick and spit if my sister didn't give her undivided attention 24/7.

We ended up getting Ativan for my mother but it truly wasn't enough. She did need something stronger, its just that my sister kept saying she didn't want my mother to be a zombie. But while my mother wasn't a zombie, she was a monster. My mother never, NEVER slept with the exception of a few minutes or an hour cat nap here or there. She suffered sundowning very badly.

The doctor told sister she can give her up to 4 Ativans but my sister never gave her more than two.

In order to get through this, give your father the medicines and pray he sleeps through this period. it makes it hard for everyone. If the medicine doesn't knock him out periodically for your respite, call the doctor and ask for something stronger.

CaringSister54

 
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Old 08-19-2009, 05:53 PM   #3
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Re: UP and down

I so empathize with you JodyLynn!!! Both my Mom and Dad have dementia and they are BOTH at that point in their illness when the disease has affected their personality. They have been aggressive to each other and to others. Dad is tall and strong and fearsome when angry. Mom may be only 4'11 and 125 pounds but she kept 8 medics and a nurse at pay when she thought they were out to harm her. In the fear, anger, and distress of a dementia induced manic episode they can be incredibly fierce and strong.

There is a litney of medications available that will help your Dad. Xanax or Ativan are probably the first ones they will try but I have found them to be the least effective. There are other medications that can be used to reduce the paranoia, calm the fears, alleviate the angst and depression. Mom and Dad are now on several medications (a cocktail of sorts) and they are both doing so very much better. You need to talk to your Dad's doctor if he is well versed in geriatric psychiatric medications. If not have him refer you to a senior behavioral medicine experts of some kind that can give your Dad some relief.

I was not a fan of psychotropic medication until.....As the geriatric psychiatrist explained to me. If Mom had a physical pain would I want to get her medication to treat her physical pain... well of course I would. If Mom had emotional plain would I deny her medication that would alleviate her emotional pain.... hummmm... Of course I would NOT! Mom in particular was in great distress and the medication has made a world of difference in her existence. I actually see a whisp of a smile from time to time now So my best advice, from experience, is not to tell Dad over and over that Mom is gone because he will not remember it. It will be new and raw every time he hears it. But do get him an appointment with someone that can help him through this period in his disease that is so very distressing and painful for him.

Love, deb

 
Old 08-20-2009, 07:17 AM   #4
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Re: UP and down

Just talked to the doctor's nurse. She is going to talk to dr.
He has been on Xanax (.25) every morning and she said I could give it to him 2 more times a day, but that doesn't always seem to be enough.

Yesterday he gave the care taker a run for her $ (and they don't get much).
By the time my cousin got there at 4 p.m. he was picking up and pulling down things. He keeps cracking the "child proof" door nob cover off the door to the basement. But if it still goes on he doesn't know how to work it w/o cracking it open.

They gave him another Xanax at 3 p.m. and it didn't kick in for a half hour.

Now, one funny thing...I told the care giver we could eat leftovers for dinner so she got the pork chop and stuffing out to fix it up and when she turned around dad had picked up the pork chop and was eating it! She let him go at it. He likes food (especially chocolate).

Thanks for listening. My cousin is a big help but don't want to burden her with everything. She lost both her parents last fall.

Last edited by jody01; 08-20-2009 at 07:18 AM. Reason: stopped too soon

 
Old 08-20-2009, 05:41 PM   #5
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Re: UP and down

Twenty minutes to a half hour is about how long it takes the Xanax or Ativan to work. Sometimes a little longer if they are really worked up. That is one of the drawbacks of that particular medication. The other is that it has a short half life... length of time it is effective.... and it can cause drowsiness.

If this is a consistent problem then you don't want to be putting a bandaid on it two or three times a day and waiting anxiously for it to take effect. You are always chasing and reacting to the behavior rather than being proactive. Hopefully the doctor will come up with something that will be stabilizing for your Dad without all the ups and down of the Xanax Actually that is what Mom and Dad were both started on and now neither one of them are on it because of that roller coaster effect. They are on something that is constantly calming and it is so much better I do hope things get better for you.... I so know the anxiety an out of control loved one can create!

Love, deb

 
Old 08-21-2009, 07:41 AM   #6
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Re: UP and down

Hi, Jodylynn!

First of all, welcome! Second of all, you share a name with my daughter. Your name is her name too - first AND middle! Obviously, I love your name.

Now. Down to brass tacks. Meds. Since you are new here, I will bore the rest of the family here with a repeat of my daddy's meds and reasons for 'em.

On the 4th of July this year, my dad had a whale of a temper tantrum. He cane whipped our daughter (the one that shares your name), tried to run over our 13 yr old son with his wheelchair, and had himself a rippin' good time cussin' them out. His worst tantrum yet.

Next morning, I was on the phone to the doc, and he ended up on psychotropic meds. Haliperidol, 5mg twice a day. Did it zombi-fy him? Maybe a little, but he never, ever uttered another harsh word to my children, he never swung that dratted cane again.

Call the doctor, and request more than the .25 Xanax. Daddy was on that too, and it didn't seem to do much. I think it was I who needed the .25 Xanax. But it was the psychotropic meds that really helped, Jodylynn.

Once dad gets some relief from his emotional turmoil, you will have time to enjoy him again. I sure did with daddy. I enjoyed every moment.

...lil' deb

Last edited by skimps46; 08-21-2009 at 07:42 AM.

 
Old 08-24-2009, 08:07 AM   #7
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Re: UP and down

lil' deb mentioned another med but deb, what did they switch your dad to?

saturday night he didn't want to go to bed. takes serquel (spelling?) for bedtime--he ended up talking like crazy. some where in there he mentioned his brothers, sister, kids and people he worked with. the poeple he worked with didn't know what they were doing according to him now. he loved his work at Cat, INC. drove a truck crane for 35 years.
BUT, i wish he would have started the story earlier...i was pooped the next day and we both slept in.

My Wonderful cousin, Ann, is going to cover for me on monday nights after she gets off work. she already does wednesday nights after work. I can get my work hours in maybe. last pay period i had to take vac. days to make up for the short hours. This year i have used up all my reserve sick time already. I am saleried so i have to account for the hours...
add that, a house note, and a skin condition that has effected my hands (seen 3 dr. and bunch of test in the past year and 1/2) everyone should know my current life...

i felt bad about no caps. (English Major in College) but now i can only type fast w/o them.

i better get back to work...

jodylynn

 
Old 08-24-2009, 02:05 PM   #8
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Re: UP and down

jodylynn... your dad sounds like my dad and the endless chatter. I spent a week listening to how they kill hogs and how the meat should be handled to be safe. There is always his military chatter and farm chatter. He has stopped talking about his job. When he gets started at night (part of his sun downing I am sure) he will just keep talking!!! Having him in a room by himself has helped that as well because there is nobody to talk to!!

Dad is on... Depakote and Remeron,
Mom is on... Geodon, Depakote, and Zoloft for depression

It doesn't take away everything but absolutely makes it more manageable. Both Mom and Dad have been on a number of medications. It's a hit and miss, trial and error, until you find what works. At one time Dad was on Seroquel but it wasn't very helpful for him. One thing you do need to know is that you will not know the effect of the drug until they have been on it for about 4 to 6 weeks. Some will make them sleepy at first but they will get over that as the body gets used to the medication. Some will seem to work at first and at the end of the month they are back to their normal annoying selves. Some will not seem to work at first but after 4 weeks you notice that grumble has stopped. So give whatever you use at least a month to work

Good luck... I can empathize and know what you are going through

Love, deb

 
Old 09-02-2009, 12:52 PM   #9
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Re: UP and down

My dad is now off Xanax. He was taking 25mg of Seroquel and this Monday doctor raised it to 50mg. He takes them at bedtime.
It has been only 2 days and I have been keeping track of his moods. In the morning he is very agreeable but after noon he gets stubborn.
I had to call the doctor Monday after our Sunday "walk". We needed to turn around and go home, but he refused. He is still very strong and would have gone off on his own if I let go. He was in one of his most aggressive moods to date. Finally 15 minutes later he came with me, but I was afraid someone would call the police. (My cousin said to take my cell so I could call for help.)
I talked to his doctor Monday morning and I got a call in the afternoon that he had taken a fall. This time (3rd for him) the paramedics wanted to take him to the hospital. Boy, did that make him mad. He was swinging at the guys. At the hospital they didn't even try to put a gown on him. The girl from x-rays thought she would be fine without help, but asked me to help after 10 minutes. He did calm down some when I talked to him, but he was still a handful. No broken bones but lots of bruises and a sprained finger.
Fun Monday!
jodylynn

 
Old 09-02-2009, 02:47 PM   #10
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Re: UP and down

Dear Jody Lynn,

I am sorry you are having such a hassle with your Dad. Clearly he is out of touch with reality, as all AD patients are. I wonder if the time has come for him to be in a nursing home where he would be under 24/7 care and you would not have to try so hard to keep him under control, give him his meds etc. I see that he has a caregiver. Is that for the time you are at work, or does he live alone some of the time?

We finally had to move Mom to a nursing home. I lived with her for 5 years, some of that time we had a caregiver in the home for 8 hours a day while I worked, but finally it was impossible to manage. The NH proved a good solution; she was happy there and got the best of care. She ran out of money very quickly, but since she owned no property, she was eligible for Mediciad when her savings ran out.

Mom has been gone now for 21 months, but I still say the nursing home saved the sanity of the rest of the family, mainly my brother, sister in law, (Mom lived with them for 3 months) and myself.

Love,

Martha

 
Old 09-02-2009, 03:48 PM   #11
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Re: UP and down

Ya' know, when y'all would bring up that it might be time to move daddy to a facility, well...I clearly wasn't having it. In fact, I was off the boards for six months while I decided what to do, how to do it....and frankly, I don't think it was ever meant to be that daddy move to a nursing home. He ended up on some waiting lists (6 of them), and did go to day care 2 days a week for a little while, but nursing home?

Now, our journey is over, his and mine, as he has been gone now 2 weeks. And of course, hindsight is 20/20, so I will add my 2 cents here, jodylynn...

I believed that daddy and my situation was truly unique. Unlike anyone else's, and no one really understood. (By the way - that is nonsense. Our demented parents are more alike than we know, and I am hardly "special" - our situation was NOT unique, I just thought so.) He lived next door waaaay longer than he should have, and his dementia was severe for a lot longer than I would admit. I did not want to think of him actually dying, so I stuck my head in the sand and refused to actually do the work necessary to see to his safety. I figured I had done it for this long, I could just jolly-well continue.

First, he became more incontenant. Wet pants twice a week, then twice a day, then all the time. Refused to wear depends. So I did a mountain of wash every day, steam cleaned furniture twice a week...all because he would not do what I told him to. Then, he started falling a lot. First once a week, then every day. Because he wouldn't do what I told him to. Then, feeding the dog all his food - the food I cooked and took to him and stayed to watch him eat. First a few times a week, then every meal. He got so thin. Because he wouldn't do what I told him to. Wouldn't take his meds unless I ground them up and sneaked 'em into pudding.

I struggled with all this, giving 24/7 care, for more than a year while he lived next door. The breaker was thrown off for the stove and microwave, and it was only a matter of time before he set something on fire, quite accidently. He would sleep in his recliner all day long, with me popping in every 90 minutes and staying for a couple of hours. Finally, we moved him in with us. By that time, walking was nearly impossible. Couldn't eat unassisted. Couldn't remember how to get a glass of water. Started sleeping more and more, eating less and less. That was May14 of this year. His medications were Haloperidol 5 mg (that is a huge dose, by the way, but it kept him from whacking the whole family with that cane), Xanax .25 mg 3x a day.

That situation could have easily lasted three or more years. Yes, Jodylynn, stage 7 can last as long as three years. God was good to daddy, and took him August 17 of this year. Two weeks and one day ago. And here's something that is not spoken of often - the dying process is brutal. I had hospice for the last 2 weeks, and believe me, I couldn't have made it through without them. It took 4 long days and nights for daddy to die. Horrible. Just horrible. But that's what I signed up for by caring for him here at home. Nursing homes have facilities and personnel to take care of folks like that. I didn't. So now I can spend the rest of MY life feeling guilty for not doing or being all that I now think I should have been.

My point? Dad's stubbornness is standard operating procedure. My dad would swing that dratted cane at my head every time I would ask him to come in the house for lunch. He too would talk about folks no longer with us, chatter sometimes with no point...of course, I would love to go through it all again to have him here, but that would not be fair.

A nursing home, jodilynn, is not the only option. If you or someone else is willing to do the 24/7/365 care he is needing or will need, well, good for you. Realize that it's truly 24/7/365, and you will need to read back in time on the posts to see what that's like, because that was my life.

A nursing home will afford you the life YOU are supposed to live. Dad needs supervision, hon. Or he WILL wander away. Or whack you one. Really. My daddy was the kindest man here the last year, but ask the other posters about his 4th of July this year! Cane whipped the stuffin' out of our daughter...

If it's not time today, it will be time soon. You have hard decisions to make. If I had it to do over again, I would still care for daddy here, because I could. Of course, I almost ended up divorced, and my son nearly lived at his sister's house, and I was a walking zombie, but it was the best I could think of for him.

I do not recommend it. It's more work than you think. That's why there are lovely homes now that take excellent care of our loved ones.

Think hard, hon.

...lil' deb

Last edited by skimps46; 09-02-2009 at 03:54 PM.

 
Old 09-03-2009, 01:30 AM   #12
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Re: UP and down

Each does have to make their own decision of the care of their loved one but they need to go into it with realistic expectations and understand of what they are in for. Little Deb, you just keep putting one foot in front of the other until it was done. Your Dad was close by. In my case Mom and Dad were 3.5 hours away and there were two that loved to fight. They refused to move and refused help in the house. We probably left them there longer than it was safe but eventually had no choice.

If it was just my Dad, I would probalby bring him here. He has episodes of agressiveness, paranoia, and combativeness but they are control with medication. Most of the time he sleeps or sits and reads. He has seems to be relatively happy unless Mom's not happy. Having vascular dementia instead of ALZ, he has more reasoning ability left than Mom does so unless he is extremely aggitated I can reason with him. But he wants to be with Mom and Mom is another story. She is an angry lady that wants to go somewhere that this disease is not messing with her life. So she wanders, packs, cries, pouts, and is generally miserable. It is much better now but wow... what a ride she has given up. Just her wandering is enough to let me know that she would never be safe in anybody's house unless she was under lock and key.

So I would have loved to do for Mom and Dad what little Deb did for her Dad but it's just not possible. Beyond that I know the work it would take. There are no days off. There is no down time. As rewarding as it can be it is totally and completely exhausting. They become your entire life like nothing else. Not even a tiny baby ties you down like advanced dementia will. Yes, you do need back up and a way to contact help. You never know when they will become combative to the point that you can't handle them. You never know when they are going to just lose it as Mom did in May. You also have to be every vigilent about safety issues. They can get into more while you go to the bathroom then you can ever imagine.

So if you desire to keep Dad at home can withstand the stress and pressures of the job... then do it. If not, go ahead and check out what is available.

I continue to keep you both in my thoughts and prayers....

Love, deb

 
Old 09-03-2009, 08:23 AM   #13
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Re: UP and down

Boy, Deb, you hit the nail on the head.

"There are no days off. There is no down time. As rewarding as it can be it is totally and completely exhausting. They become your entire life like nothing else. Not even a tiny baby ties you down like advanced dementia will."

Therefore (and I'm sure you've noticed), I am not recommending home care to anyone. As I have said, I would do it again, I think. But there is no way to describe the exhaustion, and the inability to even go outside to the garden for long.

And I have exactly no idea how you would handle your mom at your home. You KNOW you have done the right thing. No, it's not possible.

In fact, truth be told, home care is just this close to being not possible. For real. I couldn't have done it without you guys, day care and hospice.

Keep on offering that sage advice deb. We all need it.

...lil' deb

 
Old 09-03-2009, 11:41 AM   #14
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Re: UP and down

I remember days when I'd find my sister in her pajamas at 5 o'clock at night. Asking why she didn't get dressed, she'd say "are you kidding me? After fighting to get Mommy dressed, she wouldn't leave me alone long enough for me to get washed and dressed myself".

My sister had to use the bathroom with the door open. As soon as she'd get up to go, Mom would get up and follow her and stand there watching her go!
No privacy, no life, nothing. When Mom didn't want TV on, it wasn't put on, sis wanted music while cooking, Mom didn't!, wham the radio went crashing onto the floor.

Windows covered by blankets because the sun bothered Mom. Mirrors covered. Forget about simple running to the store. thankfully my mother had two darling sisters that didn't mind her and the illness. If sister was lucky enough to get Mom in a car, then they'd go and have dinner occasionally at someone's house. Thankfully, car rides was a good thing Mom loved to do all her life. She was always complaining that sister didn't take her anywhere or bring her anywhere, sister would say "What? are you kidding, I turned the corner and you'd start screaming!". I said "screaming about what!" and my sister said she interpreted it that my mother thought my sister was taking her to the Day Care Center that she hated.

So yes, home care -- no life for the caregiver especially if they had someone like me who never had a good relationship with the person who is ill and that person even when ill didn't want me around them that much. The only time my mother ever signaled me to her or wanted me in the same room is when my sister ****** her off about something. Yet, my sister could not be out of mom's eyesight for the slightest minute.

So yes, folks its worse than having a baby. At least babies take naps that are deep sleeps. Alz and Dementia patients don't sleep that deeply so you can't take a chance that they'd sleep long enough for you to take a shower.

CaringSister54

 
Old 09-03-2009, 12:51 PM   #15
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Re: UP and down

Caring, as usual, you just described my life of the past years.

I too was watched in the bathroom. Showers were always after 10pm, when daddy was medicated enough to sleep. For you morning shower-ers out there...can you imagine not showering to start your day? TV was always on CNN or FOX news. If I wanted to watch my reality tv (guilty admission there), expecially Survivor - nope. Even tho he had his own tv in his room - he wanted to watch in the front room (and I don't blame him - his room felt isolating, I'm sure), so the tv was blasting CNN. He liked country music. I liked contemporary Christian. Guess what music we listened to?

And it did not occur to me to ***** about it, either. But now that I can shower when I want, use the bathroom with the door closed, banish CNN from the tv list, and listen to Casting Crowns or Rush of Fools....well, it's quite the change. I feel so blessed to be able to do all these things.

There needs to be a book. "The Caregivers Manual". Really. Because no one can be prepared for the honor/joy/horror/exhaustion of caring for a loved one with this disease. If only there was such a book...

...lil' deb

 
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