Alzheimer's - Who Am I Now?

The last week or so has been less than wonderful, in fact I have lost most of it, every time i turnned around i was waking up. Yesterday was the worse of them all. I got a real look into the future so to say. I was not doing well mentally and as I went downstatirs I think in the morning some time i just stopped on the landing. I recall someone telling me to come down offf the statirs. i think I remained their for I am not sure how long. I know i was not sure where I was or who was talking to me and trembling, I think that is why i would not move. because i was to unstable. I got downstairs and wet to the refrigerator to get some soda to drink. This lady was talking to me and asking me how I was and all that type of shit. Finally I asked her who the fuck she was. I think she said your wife Lynn, I just looked at her and nothing. I wondered why she was in my house. I left the kitchen and went and sat down. I rememger being told what day it was by more than one person and that I seemed out of it. Finally I recognized Lynn. But the rest of the day was really messed up until late evening.

So now for the time being I have some knowing of what things are going to really be like first hand. Physically i am having more and more trouble moving.  My conversation with others is getting more difficult and less, oh what the hell, speakable cannot think of the right wording. That is becoming harder, finding the words that fit we play guessing games with me as to what I am trying to say, i guess i am refining my language, joenese, to a more pure form, which I do not undersstand.

Until next time be good to yourselves.

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

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Getting SStuck In time.

I am becomming more confused eac day. I sit here to write and just draw a complete blank. I feel that thi journey is getting rather rocky and bumpy now. When i started this blog, which seems like centuries to me, i was filled with a fire and a passion that was overwhelming me. You all know how i feel that we who suffer from Alzheimer's, Lewy Bodies, Parkinsons, Frontal Temproal Dementia, Vascular, etc. do no have a voice for us, i still feel that way, i do not want some so called expert, caregiver, reasearcher, etc. speaking for me and telling how terrrible this is and the problems and heartbreat they feel caring for us. Hell that does not put a voice or a face to us, to u yes, us no. Like it or not, WE hold the key to this disease. We have the answer, not you, we live it, why are we not asked, why are we not the experts, why is it not us that talks to the media and the big stars to tell the story? You do not know this side at all.  When it started for me it was small slices of my life taken each day, those slices have grown steadily until they are now steak size. The passion is still there to tell the story, but the fire is just a glow now. I feel like i am talking to me on my left side, i am deaf in my left ear, i feel like my blog has lost it's thunder and no longer reaches out and is heard. Yes i hear from folks once and awhile but not much anymore, I cannot begin to tell you how lonely it is inside my mind what is left now. I cannot realy even talk about things much anymore. Hell the fire and fuck the world attitude  has tempered down, I am understanding how the others that were in the hbo documentaroy felt and relate lmore to the world they became to know.
My niece died thursday, she was in her forties, i feel for her husband and three sons, but more for her mother and father, see we are to die before our children not out live them.
This is becomming way to much, there are things i want to do, but i forget them or just plain have no motivation to do them. I rarely sit by my ponds any more, my interests seem to becoming less daily about anything.
Well until i remember you are out there again take care of yourselves.

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

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Click on This Title

This post is from the Alz.org, forum.

click the title for the post.

Joe

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What Do You Want To Hear?

As readers of this thing, I would lkei to know what it is you want to hear about from me. I feel like I have reached a point on constatnntly reapeting myself. True or not I do not know.  My wife informs me we are in 2011, well I still am back in 2009 I think, because time does not seem to have moved forward for me or I have not gone with it. Maybe that is good, you all are getting older and I am staying the same. What a horrible thought that means I have to stay where I am at. I do not like where I am at, i dont even know when someone comes or goes in my hourse or even who is here at times. Ideas, thoughts whatever from you would help.

I did write to Dr. Phil to try and get a show on those of us who suffer, not the medical or caregiver or research side, but us the Walking Dead to hear our voice, but like the answer my wife got from Oprah, silence nothing back. I guess we are not worth talking to or about. No wonder so many actually just give up and call inside not to be heard from again, I can relate to that now, not before but now I can. We are throw aways no doubt in my mind any longer. Even my friend Dr. Sivack whose blog I invade at times no longer writes me, eveb those who are with Alz Org that are supposedly friends or want my involment , nothing just the quietness of silence. But people have their own lives to live and deal with. I have grown tired and wiery, take care my friends.

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

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Locked In Time.

While this is still in my brain cell, the wife and I were talking last night, we are strange we do that. We were discusing yesterday and tomorrow.  To me there is no longer a tomorrow, it does not exsit and she asked me if I wanted it to come and I said not really or something like that. It just seems that tomorrow does not matter anylogner to me. Yesterday, well that is not 24 hours ago to me, but it seems like centuries and having no meaning. Lynn says I am in a time warp, who knows. All I know or thik I know is that time for me is right now, not 10 minutes from now or past just right now. It is a strange feeling, I guess my ½ brain cell is on overload.

I got a comment from a young lady in Romania and she was worried about her English. Well is was perfect and really young one, this is not the place to worry about it. As you read you will see what I mean. I welcome you and the other new folks I have heard from to this World of Mine. You never know waht will come out of my brain, and neither do I.

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

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I Can Take Directions???????

I was told do not shoot the refrigerator.  Last hunting trip it was still alive and well. I just look straight in and not at the botoom creatures. They call but I do not listen I just hear them, kind of like your kids do.

Went and saw my shrink today and we changed meds again, or actually I did.  Told him the last stuff he gave me I think it was lats month was at the hazardous waste dump. It ripped my system apart. Back on the old stuff, feeling fine, except have to get the old poop train back on track and the fund dissolver as well.

having fun refinishing a cedar chest, of course my friened Bobby had to sand the thing, otherwise it would have had mountain ranges and gorges in it. He did a beautiful job on the sanding. Yess my staining and varnishing shills are excellent except the stuff makes me loopy, just what I need.

To all of you who visit here and leave your comments, I deeply appreciate them. You who claim to have nothing to say, I say bull, HELLO works well. Nothing important to add, the fact that you stop by, say hello or whatever is important to me and the rest of this world family we have created.So do not be shy.

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

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And You Say I am NOT NAGGED!!!

attacked from all angles


First let me wish you all a belated 4th of July!!
You know it is difficult when everyone is watching what you are doing constantly. OH of course the wife does not watch over me or nag, not the kids either, THEY have trained the fricken bird and cat to do their dirty work. I am surprised they have not given the fish feet and artificial living tanks so that they can come and spy as well. It has gotten so that I have no privacy under constant surveliance like a member of the KGB, well they won't catch me, my brain cell is working out a plan. As soon as it lets me know what the hell it is then I can do something about this invasion.

Seriously they need to watch me, I do some of the dumbest things, besides not letting the wall get out of my way before I walk into it. There are times I really do not know what the hell I am doiing or what I am talking about.  This is geetting more difficult as time goes on and it is suppose to, but it sure plays hell with what i want to do, which I do not know what that is to start with. Yes there has been joy this year two new grandchildren, my new koi pond, which I rarely sit by anymore, actually two ponds. all have mosiquto fish in them, cute little devils they are and do they populate.

Well I guess I have bitched enough, well maybe not, but at least I remembered most of what I wanted to say in this post, which in and of itself is something.  My physcologist would say that I am still in there somewhere, but the question is where.  He has been seeing me and been my friend for a number of years now, his father died from this damned disease, so he knows from where my anger and confusion and thoughts come from.

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

PS: I can go anywhere I want, that is what I am told, but here is the kicker I have to be taken there, real freedom, right!

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Last Night

Last night I found myself in very difficult and not likeable sitution.  It was a rough day for me as it was. We sat down for dinner and I put my food on my plate and completely froze. I had no idea what I was doing or what to do, my wife tired to help put I just told her leave me, she put my fork in my hand and it just fel from it, I was in a state of, in betweenness, between here and there. I finally started eating but with my fingers and slowly got back to where I should be. I am about 4 or so years into this and it is taking hold now as it seems to do about this time.

Now I am a beginning to become really concerned and not so humorous, but life will go on and so will I. I guess that line of no return is getting closer and sneakier about things.

Well that is it for now from: us here in Oceanside, CA.

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

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HE/SHE - HIS/HERS

Confusing title, well maybe.  See my wife told me the other day that one of the earliest problems I had after the diagnose was made, was keeping genders straight. Apparrently then and now when I talk about her I am talking about him and so on. Maybe this is why I never had much luck dating in my early years.

The last few days I have felt kind of lost in space and not sure of what I am exactly up to or doing. But I have not met any green people lately.

Will be attempting on working on changing my blog, the look and such, hopefully I can test it somewhere to fix the mess ups. Hope to make it so that those who read it can also blog on it. Maybe open some discussions or give some of you a place to say what you need to. Will see what happens.

Time to put my brain to rest again before it attacks me.

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

P.S. Do not feel like I do not appreciate your emails, I have been very bad lately at answering. Starting not to even turn this beast on anymore.

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CESTMOI

Yes,it is Tis I. Camelot humor. It seems to me that I just posted, by my wife reminneded me that it had been over a week. Time is becoming of little meaning to me and I no longer seem to have a grasp on it. Today is raining and windy, here in Sunny So. CA, love the rain. At one time it use to charge me up when it would get stormy, now nothing. I feel things moving faster now. I sit here and have to close my eyes to concentrate on what I want to say, and damned if I can figure it out.

Yes it is the Christmas time again. I hope you have a Jolly and Peaceful one. Maybe this time you and I can find away to keep this feeling always not just now.


This year let us not forget for they give us the freedom to live free and enjoy our lives. They sacrifice their lives for us and should be honored.

I know I am not staying very well on ssubject, byt my thoughts are getting in a bind you could say. I wish the old me was here, he could at least most of the time stay on topic.

I doubt that by next year this time, I will be writing here. Hopefully my wife will take over and let you know, where mindless has gone to.

A VERY MERRY CHRISTMAS TO YOU ALL!!!!!!!

God Bless You & This Country of Ours!
Joe

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Another Day in Dream Land!

where i get my titles is unknown to me. But it seems that my dreams and my reality are starting to be one in the same. I wake up hear voices, it is my dream entering my what ever you call it, I guess my here and now. It takes awhile for things to clear up. I am normally fine until this time of the day, after this 11:30 or so, the day just plain disappears on me. I no longer can do math by hand and mind, need a calculaor, pisses me off to no end. I had to leave twitter, sokule & facebook, could not keeep up with them. Hells bells I have enough problems with this thing. Had numerous on line business and affiliate accounts have closed them as well. Although things were witen down and all in a book organized, I got to confused and angry and just could not handle things. As of today the Joe that I once kew no longer exists. I am becoming someone else and I am not happy over that. Yesterday I turned 65 an age I never ever expected to reach or frankly wanted to, especially in my drunkin druggie days of my 20's. In my 20's did not know what the hell I was doing, somethings never change back in the saddle, no drugs or alcohol, don't need it now, brain is fucked as it is. Strange family was over last night but yet I was alone and am most of the time. Feelings towards others seem to keeep getting farther and farther from me. They are not leaving, I AM. I do not hear words right anymore, no car, problems with the bills and the check book, my wife Lynn can go to give me a kiss an it will scare the crap out of me. I forget who she is. So much for my babeling soon it will be Turkey Day, yes I will over eat and be in gastric distress big time. I even got some of the big words right this time, no red lines under them, look out. Bye for now.

God Bless You & This Country of Ours!
Joe

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New Chat Room

Hopefully you will note the new chatroom feature. You click wait for the chat request to appear, you put in your name or alias short discription and click chat. The room has room for more that one person. So I may or not may enter the chat. Please feel free to be open about why you are there. GIVE PEOPLE A CHANCE TO ANSWER. Try hard as it may or will be not to talk oevr one anotehr. I can it is my chat room. The LIVE CHAT will probably leave as this only alllowed one to talk to me at a time. I hope caregivers that are on at the same time as us looney tunes will enter and share. I am trying to make this site yours as well as mine, hopefullly we can all learn from each other.

God Bless You & This Country of Ours!
joe

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Friends You Got To Love Them.

This came from a friend of mine, who knows there is not much upstairs anymore and that I love old jokes and humor.




A distraught senior citizen phoned her doctor's office. 'Is it true,' she wanted to know, 'that the medication you prescribed has to be taken for the rest of my life? ''Yes, I'm afraid so,' the doctor told her
There was a moment of silence before the senior lady replied, 'I'm wondering, then, just how serious is my condition because this prescription is marked 'NO REFILLS'.'
********************************
An older gentleman was on the operating table awaiting surgery and he insisted that his son, a renowned surgeon, perform the operation.
As he was about to get the anesthesia, he asked to speak to his son. 'Yes, Dad, what is it? '
'Don't be nervous, son; do your best and just remember, if it doesn't go well, if something happens to me, your mother is going to come and live with you and your wife.'
~~~~~~~~~~~~~~~~~

Aging:
Eventually you will reach a point when you stop lying about your age and start bragging about it.
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The older we get, the fewer things seem worth waiting in line for.
---------------------------------

Some people try to turn back their odometers. Not me!

I want people to know 'why' I look this way. I've traveled a long way and some of the roads weren't paved.
********************

When you are dissatisfied and would like to go back to youth, think of Algebra.

~~~~~~~~~~~~~~~~~
You know you are getting old when everything either dries up or leaks.
-------------------------------

One of the many things no one tells you about aging is that it is such a nice change from being young.
<><><><><><><><><>

Ah, being young is beautiful, but being old is comfortable.

<><><><><><><><><>
First you forget names, then you forget faces. Then you forget to pull up your zipper. It's worse when you forget to pull it down.
---------------------------------
Long ago when men cursed and beat the ground with sticks, it was called witchcraft...
Today, it's called golf.
~~~~~~~~~~~~~~~~~~~
Two old guys are pushing their carts around Wal-Mart when they collide.
The first old guy says to the second guy, 'Sorry about that. I'm looking for my wife, and I guess I wasn't paying attention to where I was going.'
The second old guy says, 'That's OK, it's a coincidence. I'm looking for my wife, too. I can't find her and I'm getting a little desperate.'
The first old guy says, 'Well, maybe I can help you find her. What does she look like?'
' The second old guy says,' Well, she is 27 yrs old, tall, with red hair, blue eyes, long legs, and is wearing short shorts. What does your wife look like?'
To which the first old guy says, 'Doesn't matter, let's look for yours.'

********************

Lord, Keep Your arm around my shoulder, and Your hand over my mouth!

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I Am Back, Ready or Not.

You know, no you don't, but this damn disease is a real bitch at times. I find myself having to seperate and kind of hide to keep from lashing out. We have had our one daughter and grand kids and son in law with us almost 3 weeks I think, am not handlin this well. I love them, but.

My wife and I are starting to lock horns more, she thought my last post was rather mean and spiteful, I think that is how she put it. My reply was, well you guessed it eat shit and bark at the moon. I write what I feel and how I see it. It may be clouded it maybe one sided, but it is all I know. I make no excuses for what and how I put it. Those that live in this World with me, they know, they understand and hopefully I say what they cannot at least for now, while I am able to . Yes I am angry as I write this today, better to put it here than where else I might.

Ino We that live with AD, really find ourselves fucked up alot of the time, understanding the real confusion and loss we feel is difficult I know for those on the outside looking in. See we can not get back to the outside to look in, we are stuck here and sinking deeper. Try to imagine the darkness starting to encase you slowly and you cannot stop it and you want out and NO not for you. What is that old saying when Casey at The Bat struck out, there is no joy in mudville.

Well enough from me. You all have a great day and wonderful life.
God know the idiots in Washington won't fix it, but only screw us more.
joe

God Bless You & This Country of Ours!

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No Where To Go--------

The picture is of me and my elsdet granddaughter. She is 6 today, Ms. Emma Nichole.

I have ben trying to get stuf done on my computer today, but I am just lost as to what I am trying to do. Postit notes allover the place, printed emails to reed and get throug. Just is not working. I haven sitting here looking at my note that saays blog and trying to get to this. Sometimes I just feel completly lost and have no idea where to go to do things. I feel like the odl brain is really slowing down and it wants to go somewhere and not with me. I just dont want to. Whateles can I say.

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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GOD, WHY?

You know I have asked the above question all of my life. Not just since I have gotten AD & FTD, to be sure they have not helped the situation. The question is not what you think, GOD WHY ME? No not at all. Most of my life has been screwed up, probably mostly my own fault, except my early childhood, did I have one, no I live in a house of hell part of Satans spawn. At least with the dementia some of it is leaving me now. You should see my wife as she tries to stop me from falling off the courch or the bed. It is hard to stop a rolling whale. I ask mostly, GOD WHY AM I ALIVE & WHY WAS I BORN? Looking over me and my life there is nothing special about me nor do I seem to have contributed much to this life, taken oh yes.Now my thoughts get mixed between yesterday, today and whatever comes into this brain of mush that I have. It is starting to get a bit touchier, I look at those I should know and wonder who the f&*^ is that, and it is my wife or one of the kids. I have moments that I feel perfectly "normal" (do not think I ever was that), and all of a sudden everything goes to helll in a hand basket and I have no idea what I am doing, why I am doing it or where. I spend little time doing things I used to. I start, forget and then wind up somewhere else doing something different or just sitting wondering WHY? Well enough out of me.

God Bless You & This Country of Ours!
Joe

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A Day of Anger

I do not know who did this sketch but it stirs my insides greatly.

This day or at least my brain and emotions ar on the rampage. Everything in pissing me off even this blog. Nobody has don anthing to me, I just am not in any type of control of myself this day.I kind of remember reding that these things would become paart of my life, and they suck. I was vacuuming the rugs downstatirs this morning and attacking them as if they were my enemies, my mind is filled with mud I think, no control . Good thing I am alone right now I think I would hit someone if the said the wrong thing, maybe this post will help who knows. All I know is I want to go home and be in green pastures with my Lords' creatures to romp and play. My mind, heart and soul are heavy this day and they should not be. I nolonger take Aricept or Namenda at doctors orders, because they did nothing for me and people I talk to with this disease seem to vary from them miraculously being sharp as ever to having such reaactions they almost died, great shit isn't it. Maybe it will or won't help and it just might kill you, great choice. I am even angry at my family, wife and all, and they have done nothing. I don't feel that they really understand the hell in my head and insides, I try to control it but of late the amountt of time I can seeems to be growing shorter maybe some so9da will help.

God Bless You and This Country of Ours!
Joe

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Crossing The Line

Some of you may have read in other entries of mine of that line that those thaat live is this World of Mine cross. Itt is that point where you cease to be who and what you are and become another entity, if you do not physicallly pass on. Yes they say this is gradual and can take many years, true but sure, it can happen in a day. Here today gone tomorrow. I have over the years since joining this ever growing community of those with dementia have seen it take place just that way. One instance my wife told me of a fellow at one of the sites she works at who has been reading my blog and hopefully gainnned some insight and comfort that he was faultless. HIs mother was fine the one day and the very next (24 hours later), knew crap, nota and required suddenly 24 hour care. So many I have communicated with that suffer have had this take place with them, because I speak (this form) with their loved ones and caregiverss and they tell me of this suddeness. What say you perverers of great wisdom and knowledge, what is that "Duh". MY own life is growing shadowier, forgetting we said grace at dinner, turning on this beast, conversations in the middle of them, physically becoming a poster child for damage of the year or how to screw up your body in one simple lesson. My time is coming when ?????? but it is on its' way. I have told my family the day will come as long as I have any ability to think as who I am, that I will kiss them all and say goodbye and be gone. I believe I have the right to passon with some of me in tact and with some dignity. I refuse to have my family see me lying with my face in my food, as I have seen from working in Assisted living homes when doing computers. Looking into the trap souls of those folks through their eyes made my decision along time ago shoulod I ever be blessed with this disease. There is no cure and most likely will not be one, until they whoever they are talk to US and really learn. For their knowledge of the brain fits in the head of a pin. Bye for now until next time be good to yourselves.

God Bless You and This Country!
Joe

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Creating Memories in The Mist

As many of you that read my blog know how I feeel about leaving my grandchildren with found memories and not those to come. Welll my eldest and her two kids have ben with us during moving, unfotunately my other two in WA have not been My grandson likes to hide behiind the couch and table and rub my hair while I try to grab his hand he is 2 and it is a game. Both him and my granddaughter help me get off the couch and want to play. This old guy doesn't last long at though, but it is form them and the joy I do get. My granddaughter is starting I feel to understand that somethiing is wrong with grandpa, but she isn't sure what it is. Even with the bad days and not remembering, I am doing my best to be happy and enjoy what time I have left. What the hell that was the Drs. prescription. I am happy most of the time and I think it is because I have accepted what awaits me and I know longer fear it or care when the line is crossed, my granddaughter is sitting with me while I write this old motor mouth. WE that suffer from various forms of dementia can live and enjoy the time we have, crap why not, we are going to forget the pain and sorrow of before so go out dancing. I weap more for those around me, because they have to watch from the otherside, see I soon forget and get lost in the conversssations and what is happening quiet often. So my sorrow is momentary. My wife shakes her head at me as we walk through the grocery store and I sing songs I make up so everone can hear, some are very colorful and I talk to everyone. Till nex time:
God Bless,
Joe

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