Dear Carol

Thank you for the post and kind words.  Well you assked me and you know me and my mouth so it goes babe:
10: Do not hover over me.
11: No sudden changes.
12: Do not ask how I am doing constantly.
13: Watch your being needy.
14: Do not patronize me.
15: GIVE ME MY SPACE AND QUIET TIME.

Now that you hrut my brain cell, I hope you are happy. Herb needs to dump ice water on you.

By the way folks there is a new email box, put you email in there and you will be notified each time a post is made, little easier. However comby anytime you are welcome.

God Bless & Keep You & This Country of Ours!
joe

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How to Show Love and Appreciation for Someone With Alzheimer's--Carol's Thoughts

Joe, you get so much traffic on your blog and I thought I would give my impressions on how we caregivers/family members can emotionally support people with Alzheimer's and dementia.

1. Don't do everything for me.
2. Listen carefully and figure out the feelings behind what I am saying.
3. Don't nag me. Create a checklist for me that helps me remember. The rest of the world has to use check lists also.
4. Enjoy my personality—I am not the disease of Alzheimer's.
5. Plan outings with me and don’t be embarrassed by whatever I do or say in public.
6. Give me visual clues for memory including a calendar.
7. Sing and joke with me.
8. Bring me into your world.
9. Say one thought at a time.

So Joe, since you are my Alzheimer's sounding board, what would you add to this list to make you feel loved and appreciated?

Carol

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You Know My Love for Studies

Here is a link about possible preventive things against Alzheimer's:

http://www.newsmaxhealth.com/headline_health/breakthroughs_Alzheimers/2010/09/17/350866.html?s=al&promo_code=AC7C-1

You be the judge of this. I think you will know my demented thoughts on this. The gene one only covers to my understanding maybe 5% of people who get AD. I would really like to know how they determine that the one's that did not get AD, would not have gotten it anyway. Stats can mean what you want them to.

God Bless & Keep You & This Country of Ours!
joe

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My Husband

Well now that I have been on the guilt trip for not blogging on his site I will explain why. Even tho I am a Leo I don't do a lot of roaring. Only when it counts like protecting my family or friends. For the most part I am a real pussycat. So you wonder how in the world I managed to survive 30 years with this man. So am I. He is a tyrant when it comes to having things his way. Always has been and probably will be till the end. But he is also a very loyal and loving friend. He is my best friend. He would fight for me. Since we have started this trip with his medical problems it has not been easy. Lately he is stubborn, mean, forgetful and just not with the rest of us. I have asked him questions and then he walks away without answering them. Or he will say something about me nagging him and getting rid of wives that nag him. Nagging consists of asking him what he wants to do on any given day.
So those of you out there taking care of a spouse or loved one just remember that we do it for love because who else is going to do it. Me, I tell him I am in it for the money now. So he should probably go back to work and earn some.
It is not easy and it will only get harder. But we are in it for the long haul. For those who can't stand up to the pressure do not feel bad. This world is not for everybody and the quality of care is more important than who gives it.
Take care
Lynn

I

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Alhzeimer's & Marriage

I received a comment from a gentleman whose wife has early stage AD. It seems this has affected his marriage quite a bit. Trust me that is an understatement, it has litterally screwed mine up. I have asked my wife to post her side on the blog, but she is reluctant for whatever reasons.

I know that she has one heck of a time with me, I am extremely moody at times, I get lost in conversations and I go off elsewhere in my mind on a dime. The other day we were talking and as usually Mr. Brilliant here got lost and could not even get a word out, the wife answered for me and was right. Her words to me were "Aren't you glad I know you?" my reply was yes someone has to because I do not know me anymore. This is starting to get scarey now. I have been going to post for the last couple of days, just does not happen. It certainly has messed up our sex life, I cannot even keep things going, because my mind suddenly goes off to War, or the Circus or some such fuckin thing and I am no longer involved in the situation or I just plain fall asleep.

I cannot even imagine how my commentor or my wife feel. I am not even sure how I feel at any given moment. At times I am on my game and then there is no game I have lost my processes and cannot get back. Yes I can write because I can stop and come back and start over, but in my real world it just does not work that way.

To my friend I am truly sorry for your situation, I will not say Hey it is ok it will be fine, because the truth is it will not get better only worse. I do hope the Lord continures to give you the strength you need for each day, we are a hand full.

God Bless You & This Country of Ours!
Joe

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An Email Identity Secret

Message = Hello
I work at a local Alzheimer Society .......... My co-workers and I have been watching the HBO series over our lunch hour. I wanted to stop by and visit your blog.

Thank you for having the courage to share your story so publically. You have made such a huge difference for other people with ADRD because you have put a face behind this disease. Your story is particularly important because it shows that anyone can get Alzheimer's disease...even someone as accomplished as you.

Not everyone is interested in being the "poster child" for Alzheimer's disease (for lack of a better phrase). It is such a personal journey. Thank you for the courage and commitment to do this.

Our chapter is marking it's .... Anniversary this year. In fact we are having a ... on ....... with over 150 people attending it (i.e., to honour the occasion). There are so many people who have touched the chapter...be it person's with Dementia, their family, volunteers and staff.

There are so many people who are working towards improving the quality of life all of those affected by Alzheimer's disease. I know that each of them would send you and your family their well-wishes.

I have worked at the chapter for about half that time. During that time, there have been incredible strides in research and public awareness about Alzheimer's disease. It is encouraging to see this but we all know that there is so much more that needs to be done. Your story will bring much needed awareness to this disease and will help to move things one step further in search of a cure.

Anyway, I just wanted to say hello and THANK YOU!

Sending you and your family warm thoughts...

I have removeed info that would id this person to keep them anoynomous. I am using this email because I have received countless numebers that call me the face of alhzeimers and the voice. I am neither. Just a person with this fricken disease who wants to share our side of the story with you.

I have asked all of you for pics and dates of you loved ones that passted from this disease, as all of us with it do. I received one. So I will be posting it. You see those before me are the face and voice of this disease and should be remmembered and I want this blog to pay tribute to their fight for life. I get tired of hearing about all the big people who have survived this and that, big fuckin deal. We all die period. I am tired of all the crap about cures and how to stop this disease, well prove it to me with a survivor of it. No matter the advancements the real cause and any real treatment exscapes the med prof., maybe someday, I wonder.

I hope Bill's daughter does not take offense at the pic that I have because hers did not come through so I took one from his site. To me it shows the real heart of the man and how he felt about this disease and inate love of life.

God Bless You & This Country of Ours!!!!!!!
Joe

PS: I received a very sad email of the passing of one in my World, but it is sad for the daughter, for mom she is free now. The whole left of years of caregiving will be difficult I believe at best to deal with. To you my love and prayers.

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Pushy Friends!

I am glad I have some, they help remind me of what my postit notes seem to fail to do. I have not written in while. I have been elsewhere lately, not ecxalty sure where, but I have been there. Getting more tests, health is well not what is used to be. Age this disease, rotten lyfestyle when I was youndger who knows, I do not. What is starting to show more offten then not, is I have no idea what day it is and yesterday seems not to have happened. Hard to explain. But there is no longer any time frame in my brain to connnect things to, so they all seem recent and mixed up. True moments of knowing exactly what I am thinking or doing are growing fewer by the day. This is not a lot of fun and am starting to looose my humor about it. But I am getting to meet someone new each day in the mirror, so I guess that is ok.

God Bless You and This Country of Ours!
Joe

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GOOD MORNING WORLD!

hope you are all fine. Chat seems to be working out ok. Have gotten to talk with some nice people. One in particular a 21 yr old woman in Boston, who at her age has taken on the daunting task of working in an Assisted Living Facility and going to host an Alhziemer's Proget meeting. I know what it takes to work in such a facility, you see that is where my mind was made up at an early age, while I handle the computer systems for 3 facilities, never would I live the way I saw. My heart broke working there.

I have gotten a few that well shall we say have not been really forward, challenge them and they disappear, oh well.

I have been told to write a bok about this journey and I hae tried but you know I thought about it and said yes good ideaa. But then I started to think, something ya thnik. I am writing a book here, completely unedited. Certainly not proof read and things but neatly. But this is a living book ever changing, always wanted to write one andnow my brain realizes after how many years at this, that I am.

A little slower on the uptake these days. Well now, I lost my train and my thoughts, fuck I hate this shit. Catch Ya Latter.

God Bless You & This Country of Ours!
Joe

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Mark Your Calendars - 5/10/2009

On this date HBO will start the firsst in a 4 part series on Alzhiemers. As you know I prefer to call it dementia. As the council on aging testified in March to Congress, THEY DO NOT KNOW WHAT EVEN CAUSES IT. Yet they feel thaat with the right structure and funds there could be the possibility of delaying its onset. It is finnally being recognized and called a disease and not just of the aged. Maria Schiver gave a moving talk, but the gentleman from Florida much more touch me with the story of his wife diagnosed at 55, about 65 now I am guessing no longer remembers him and the pain of it. He also talked about those who are not wealthy like Maria, face challenges of care that she can afford. I am not taking things from her, the devestation of her father is real and painful for the family. But I still do not believe the caregivers truly understand the pain and frustration and anger of it in this World. You go along ok for awhile. Then you fall down a part of the stairs. You go to get back up the stairs, but no way, they are gone lost forever and so has part of yourlife and who you are disappeared. Epedemic they call it, try PANDEMIC, with more than 10 million in this country alone suffering. These people did state a real truth, when you have seen one case of AD, you have seen just one case. We all progress differently. And as they said 'YOU WILL NOT SEE ANY SURVIVORS OF AD WALKING AROUND". THERE ARE NONE!!!!!!! Welcom eo My World

I have got nasty lately on my blog and truly do not care, it is part of wo and what I amm becoming. BUT I AM PROUD TO SAY THAT I AM PART OF THE DOCUMENTARY THAT WILL BE SHOWN ON HBO IN MAY. I thank them for having the balls to truly attack this head on. KUDOS HBO.

If science has or ever gets the courage to take live brain cels so they can truly start to find out how this plague works, I AM READY AND WILLING TO LET THEM GO AT MY BRAIN, it is becoming of smaller and smaller value to me.

God Bless You & This Country of Ours!
joe

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Tomorrow is My Day.

Yes, yesterdaaay was the werin of the green to be sure. AAAAH but Friday is St. Joseph's Day, the werin of the red, so be carefull. Good thing I have a calendar on my desk by this beast or I would not know the day. Once I leave this point alll bets are off.

Since it is my day here is to the world:

Wish you al well.

God Bless You & This Country of Ours!
joe

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Yes I am Here, I Think!

Beeen somewhere for ahwile but not exactlly sure where. Have been attempting to build sume businesses on-line for the family for xtra income, once I cross that line. I feel it coming closer each day. I am really getting to be a pain. I have been arguing Politics whith a friend and have not been exactly kind in what I have said. He supports the Pres. and I do not trust him as far as I can throw an Elephant.OOh well so much for that. The Joe that started this blog cple of years ago is not here anymore. Infact the one that wrote her last year is gone. This is the part of the loss of me (dying) that bohters me, who will I become and what. Death of my body does not bother me, in fact it will be a blessing. I know my family is making memmories with me for when I am not here and that makes me happy. My youngest daughter, cut my hair. She called it a caldusec look, because we buzzzes the topand just trimed the sides. The name is because we live on a caldusac. When the sides stand up, because combing is not in my world, my wife calls me Albert, because I remind her of Albert Einstein, not bad company. Well you all have fun.

God Bless You & This Country of Ours! in case you forgot BHO this is the symbol of our Country.
Joe

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To My Wife!!!!!!!!

Happy 30 years of putting up with me. Thanks for marring me you have made it worthwhile.

Love,
Joe

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Hurray For Tuesday!!!!!!!

Yes normally I post how cruddy things are but Today is different. It is time to say Happy Birthday to the newest member of our family, Ms. Kiaya Lynn Patterson, born Tuesday 1/27/2009 at 2:56 PM. Towering over the Empire State Building standing 21" tall. Yes and you guys best becareful she weighted in at a solid 8lbs 14oz, more than capable of slapping you one upside the head if you get fresh. Please join these grandparents in wishing Morgan & Ross, along with Kaiya, Chase & Lilly all of God's blessing and happiness.

God Bless You & This Country of Ours!
Joe

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Lack of Feed Back!

I use to get many more emails and comments on my postings, with over 12,000 visitors I brain thinks I would hear more. I guess maybe of late I have tried to show too much humor and people want the gore. Well the humor is howw I keepp my self together. Without it thiss life would be darn near unbearabel. I is no fun trust me sitting here tryiing to write to you and tell you that the wolrd really sucks.I does not get out of my head to the keyboard when I want it to. Tihngs do not get better here, they just slowly go down hill. I read all the new studiies and new stuff to try and I really laugh at this so calllled professionals. They all contradict each other, I wonder if they are not suffers as well. March to stamp out Alhzeimers, RIGHT! Asses don't even know what really causes it to start wity, great progress in over 100 years. I am not thrilled with having AD & FTD, but that is the way it is period. You should try it some day, look at people you have been with for 30+ years and not even know who they are, let alone what the hell they are talking about. Damn most of the time I am not sure what I am saying or trying to say. Well old ½ of brain cell here will say good bye for now. Be good to yourselves.

God Bless You and This Country of Ours!
Joe

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This Belongs On My Answering Machine!

Thanks my friend Dick.

Hello and thank you for calling The State Mental Hospital.
>
> Please select from the following options menu:
>
> If you are obsessive-compulsive, press 1 repeatedly.
>
> If you are co-dependent, please ask someone to press 2 for
> you.
>
> If you have multiple personalities, press 3, 4, 5 and 6.
>
> If you are paranoid, we know who you are and what you want,
> stay on the line so we can trace your call.
>
> If you are delusional, press 7 and
> your call will be forwarded to the Mother Ship.
>
> If you are schizophrenic, listen carefully
> and a little voice will tell you which number to press.
>
> If you are manic-depressive, hang up.
> It doesn't matter which number you press,
> nothing will make you happy anyway.
>
> If you are dyslexic, press 9-6-9-6.
>
> If you are bipolar, please leave a message after the beep
> or before the beep or after the beep.
> But Please wait for the beep.
>
> If you have short-term memory loss, press 9.
> If you have short-term memory loss, press 9.
> If you have short-term memory loss, press 9.
>
> If you have low self-esteem, please hang up.
> Our operators are too busy to talk with you.

>
> If you are menopausal, put the gun down,
> hang up, turn on the fan, lie down and cry.
> You won't be crazy forever.
>
> If you are blonde, don't press any buttons.
> You'll just mess it up.
>
> This coming week is
> National Mental Health Careweek.
> You can do your part by remembering
> to contact at least
> one unstable per son to show you care.
>
> (Well, my job is done . Your turn!!)

God Bless You and This Country of Ours!
Joe

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Dropped Call * Dead Zone

This is how I feel in the World of mine, like a droppped call or just the buzzing on the line. The thoughts are there but the connection to the jaw finds a dead zone. No messeages come or go out. It gets frustrating as you talk and sudddenly the line goes dead and your jaw stops and you look at the person and you choke up trying to get the words out and suddenly even the thought is gone. Emptiness in the brain cell. It happens when trying to write on this blog, I sit and have things to say and then the brain, fingers and keys on the keyboard become strangers. I go nowhere without someone with me, not good idea. Now the family worries because of the heart problems, I just look at it as one moore thing to add to the list, someday I will get through the list and have to start over, why, because i won't remember the beginning of it, so I will not know if I got to the end. This all makes perfect sense to me. But then so does waxy ear build up, whatever the hell that means. I know I do like hearing from folks who stop by and take the time to read my babble, strange humor and other things.

If you want to know about me truly, read my post, A Warriors Lament, it tells about me from beginning to where I am at now.You may not understand it, but I do and that is what matters to me. Well for now have fun and be kind to yourself.

God Bless You & This Country of Ours!
Joe

PS: VOTE TOMORROW - I HAVE ALREADY.

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Where is Yesterday?

It is beocming harder each day to remember yesterday, let alone try today, even this monring. Here we are mid October per the calendar and I am somewere in September. I feel like I am altogether but I am totallly confused as to what to do next. This is not fun. But it is the hand I was dealt so I play the cards and see what they do and try to understand them. The new meds seem to help the pains in the chest and the sweating whrn walking or doing some work. So I gues complaining is just whimpy on my part. I wish I had the words to discribe what it is like to be in this World that I and others like me live in. It reallly sucks. First you know then you forget and then you do not remember forgetting what it was that you knew. If tha makes no sense to you ok, but it does to me. My frustration with others is growing and I go off more quickly then usual. I started this today with my thoughts all together and now they are some where in space and time. Did use postit notes but I found I did not read them or kept doing them over and over, now who knows what works. My brain sure does not know and many times I just don't give a damn, it is to hard to put the thoughts together. It is easier to just leave the old grey matter alone. Till next time.

God Bless You and This County Of Ours!
joe

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How things change.

Since I have been so blessedd with these wonderful diseasess it is strange to me how I have been changing and changing towards others. I am not to concerned with what they think or have to say. I am getting more self absorbed you could say. I am not sure if this is part of the way this thing goes, but it is how I am starting to feel, it is as if others do not exist in my World, hard to describe this feeling as my commmand of the language is going to hell in a hand basket. I more and more do not enjoy going out and having people around me. The noisse and all the hurry scurryy around me tendsl to set me off and I have to get away from it. I know because of the hlep that my famliy has given me, I have fallen in love with my wife and the rest of my family all over again. I find when I am extreemly focused on something that I can talk and wright quiet well. But that amount of concentraation is greatly tiring and causes me to become unsteady for awhile. My mind is starting to ramble to I will say good bye for now.

God Bless You and This Country of Ours!
joe

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My Life Passes

Lately I haave found the past getting tangled in my mind, such things as when who why and the like. My days are becoming shorter as time seems to pass and I am totally unawaree of it. I have been experiencing great difficulties in keeping old times and folks out of my relationship with my wife, needless to say this is becoming quiet a pain in the ass. I know it hurts her and it fricken is driving me nuts, to the point I am having a hard time relating to her, especially in a man and woman sense, you know husband and wife tings, the pills do not help, I think my drive and wants are getting screwed up with everything else. New or what should be new memories do not even stay with me anymore. I lock my way in sleeping at the drop of a hat, I am beginning not to care anymore, which is part of the FTD and the AD time marches on and I seeem to stand still. At times things are fine and then I have no idea of what is taking place. My tempor is growing shorter, patience is very little.

God Bless You & This Country of Ours!
Joe

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A Loss In My Life Today.

I am not sure if on my blog I ever mentiioned my son that I had long before I got married and he and his mother disappeared. I found them two or so years ago I think, well me and my family have tried to bring him into the other side of his world, today he made it clear that was not going to happen. So my heart is heavy and sad, but I lost him once not by my choice, now by his. I truly hope this fuckin disease takes a greater hold soon. Sounds selfish butt I want to mobve faster and get rid of the memmories and pain. Sometimes it is too much trying to live between these two worlds, I feel trapped and torn, not knowing exactly where I am or why I am. Good days and bad ones, where is the balance not with me that is for sure.I used to take Aricept and Namenda and both did nothing for me. They are hopefully supposedly to aid in slowing down the memory loss, right. Even the manufacturers do not know if they will work for sure, some good stuff. I have heard from folks who have taken these drugs and their stories range from miraculous results (i thik they were on something else) to folks that got violently ill from themm and everything in between. Me nothing just a waiste on money, so much for today,hope to meet you on the other side.


I still have demented humor, and love it.

God Bless You and This Country of Ours!
Joe

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