I think this month will end, I hope!

Crap ass month so far, as some of you may have read my niece died a week or so ago and last week sometimme i lost my two prize KOI and then i am told I have orthostatic tremors, never say what the hellll else will happen.

Many of you know I was honrod to share the silver screen with six other lovely people in the HBO special, The Alzheimer's Project, Memory the Loss Tapes.  I considered us, although i never said anything as The Magnificant Seven.  Well Ms. Fannie Davis has passed on,I was advised today, i still need to get her pic and dates and anothers up on my Memorial Page.  I am glad to tell you that as of this afternoon Ms. Yolanda Sanmartino (the womaninthe mirror) is still kicking and doing well at Cherrywood Nursing Home. Just the two of us left, seems though we are all staying in the 8 or so year time line.

My book has made it to Europe, hopefully it will help someone over there.It humbles a pain in the ass like me that my blog, my story and my book have gotten so much attention world wide.

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

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Alzheimer's Folk Do Not Want To Talk About It!!!!

This is actuaaly about denial this post. I read on caregiver sites, other blogs and comments on mine, "how do I get mom or dad to admit they have Alzheimer's, they are in denial".

Well my point of view, you just don't. What is the big deal if they say Yes dam it I have Alzheimer's. Does that validate YOU in some way. Frick they know something is wrong, wake up. Your job as their caregiver is TO BE THEIR FOR THEM, not to make them agree to having Alzheimer's. We know we have a problem and it will get worse.

Yes I am yelling at you. Imagine yourself being handed a DEATH SENTENCE, that is what Alzheimer's is. Would You go around skipping down the street saying oh goody I have Alzheimer's; or do you think you just might keep your mouth shut and go about your business the best you could? That is what I choose to do and many folks that I know that have the disease have choosen to do. But I tell you on this blog what is happening to me so you get some insight into our world of frustration, terror and brain fog. I do not know how everyone feels, but i do not consider myself any more important than anyone else with this disease, we walk together.

Forget whether your patient, loved one, etc. accepts or talks about having Alzheimer's. They have it, is not that enough said? Help them do not hoover and smother them, be there and not in their face. As you can tell this denial shit getss to me, because I wonder who really is in denial, the person with the disease or the person saying that one is in denial.

Enough of my ranting.

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

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What price Alzheimer's

Many of you have lost loved ones to this disease, mothers, fathers, grandparents, friends, siblings and this list goes on. Mother's Day is tomorrow and to all Mother's long gone, still with us and to be, I wish you the happiest of times.

This is only one cost of the Disease, the losss of a loved one. Just think how we feel as we loose the loved one that we care about so greatly, ourself. Sounds selfish, but it is a reality. The other day to me it was just yesterday, because there is only today and yesterday for me, I walked into the "OFFICE", doe not everyone have to have one in their howse. A bedroom with a comuter in it, WOW. Anyway i walked in and the next i knew my wife was in helping me get up off the floor. See this 700 pound pigeon, does not remember how to fly to well. I bet i wennt down with grace, style and diginity and a thud. problem is not remembering what took place, one minute i am standing the next on the floor like a beached whale. I know this is only part of the disease and what is to come, but it is taking longer to get up and the aches take longe to leave and some now stay, they found a home. Good thing I drank heavily in my twenties, I learned how to fall and get back up. So I guess we are born we grow and start to return to our original days.
The more i look at this disease the more I feel it is auto immune in nature. I notice our Alzheimer's Organization here in the states touts the stars who have parents or sweethearts who have parents with the disease as being such brave soles and all the work they do for Alzheimer's. I say stick it up your ass you do nothing for us. At least Canada has speakers at meetings with the disease so that the true story comes out. I know I have a couple of friends up their speading the word at AD meetings by the Alzheimers Assoc. of Canada. Kudos to you folks.  Here forget it. See personal experience has shown me the nature of their commitmennt.  The San Diego Chapter, visited me the wife would remember when, it was shortly after the Walk here in Oceanside, I think. They met to discuss my book, the lady was very nice as i remember and felt that my story needed to be told and by me and that i would be of greqat service, i was even asked if i would be willing to speak and help, well I said yes. gave them books for their lending library. They would be in touch I was told, the bullshit put off statement. Well they went to the state capital for getting things done, i was asked originally if I would go, yes, however time came and pass and so did their silence. I get emails to help support them. I think not, you can have as much support from me as you have given me.  The Alzheimer's Disease Reasearch Foundation gets my help they at least are doing things.
Had to get this off my chest. It has been burning my ass for a long time now. Many good people work and volunteer for the Alz.org,, but the whole does not even come close to equalling the parts.
I have noticed lately that ai seem to be going away, that is the best way i can say it, seems like me and that around me are starting to part ways more and more each day.
I am rambling on so I will say so long for the time being.

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

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The Physical Aspects of Alzheimer's

By now i wolud think that we all know about the mental trials that allll of us with this disease go thru.  Not remembering people, turning around and meeeting a new friend each time, wondering where we are, who you are, where is home, my glasses hell where are my pants.  Forgetting to use the bathroom timely oooh well. Spending and forgetting we did it, driving those close to us to exhaustion and we do not even realize it and in most cases do not care.  How rotten we can get and next minute the world is rosey to us and you have the problem. The list goes on and on and on.

But there is another side to this story, not being able to walk right anymore, cannot drive because forgetting what to do (our freedom is gone). Tiring easily from practically little effort. Standing one moment the next investigating the dirt on the floor or cracks in the cement. Trembling a good deal of the time, eyes get worse, food tastess funny, sleeping is a joke, not at night we go to the daytime, walking into things because we do not see them, winding up with cuts and the like because we do not realise that we have been injured, not eating just because. This is the other side of our world and much more but my brain cell is to empty right now to remember or clogd up, get the draino.

I find listing other things for you is easier these days then really talking to you anymore. I forget what I want to say, I sit down with this whole well organized thought out post in my brain somewhere, and it never shows up when I start, it goes walking down the street. I feel like i repeat the samethings over and over, but that is what happens here in Alzheimer's land.  It seems no matter how many times I am told yes we listen that no one really hears us. You suffer and all the books about you are considered to be by experts and people who know about this disease, but folks sorry you do not have a clue to this sise of the fence. I have pretty much lost sight of your side now also. My voice is becoming quiet and running out of its one time fire, i am worn out spent and just plain tired. I sit and wait for the bus to take me home most of the time, these moments of knowing and suddenly not are incredidablly painful and frustrating.I ramble on and on and on and cannot tell you what I really am talking about most of the time.

Well friends take care and be good to yourselves.

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

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What's in a day

Let's start with how Joes' day goes. He gets up and goes in and turns on the computer. We moved it upstairs after our son moved out. Then he goes down and feeds and waters the bird. , takes his meds. That may or may not tire him out so he will sit and most likely fall asleep sitting on the couch. On Fridays that is towel day. He gathers all the towels in the house and washes, dries and puts them away. This could take anywhere from an hour and a half to all day because he has forgotten that he started them, and most likely will sleep again. He has his tacquitos several times in a day or not depending on wheter or not he remembers if he is hungry. We all ask him if he wants anything. Then there are the times that he is staring off into space and you ask if anything is wrong and he shrugs and says Ehh. Yesterday I asked him and he said that he was tired and did not care anymore. He wants to go home. It is getting harder for him to get his thoughts across and out to us. We play alot more charades. It is a good thing I know how his brain works or we would never have a conversation.
I think that is enough for now and will do more later.
Take care
Lynn

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AD Still Hard At Work!

I have good and bad days and some are jus plain roten. Believe it or not days I post generaly are not good. Because I start with what I want to post and it just runs out of the brain. It feels like a TV getting good picture and suddleny fuzz, static funny voices, it is realy frustrating.

Well a copuple of days ago we got a new evaluation on where I am, like it really helps me because I never know anyway. We have moved right along to Early Stages of Severe Alzheimer's. Bastard moves fast, but that is the way it is.

New links will be coming and a site added to help you caregivers speak out to each other more to come, I just need to re read emails and get my butt in gear.

Thanks for being there for me and part of the family.

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

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Brains or Trains

I wonder sometimes if I have any brains left or if they are just trains runnnning in a circle. Things to me seem to be getting fuzzier each day. I forget mor of what I am going to do each day. Wife is up North visiting daughter and kids, I just could not take going after her 50th a week or so ago.  I found 32 good reasonss to commit homicide that day, way too much noise, movement, people, just a real grate on my brain, nerves and patience.

I am glad to see the going back and forth in comments and Lynn's posting.  We got one the other day that we discussed and both of us for diffferent reasons.  She could understand the people resenting the fact that the parents who are becoming a problem and like me, living another 5 or more years. Lynn feels that way about me at times and we both think it is normal and good to express it. You need time away from us guys to help yourselves. See I look at it that I may have to put up with those arround me hovering, checking, watching ever annoying me even for another year.  I wish they would just disappear at times. I think both sides feel this way, have to, we with Dementia are really a handfull, I think worse than trying to raise baby tripplets. See have the time I do not know what I want or what I am doing, just like a kid.

I want to say welcome to all of you that visit my blog. From Russia, US, Canada, Latvia, China, Brazil, Austrailia, etc., it boggles my brain cell.  Thank you all for visiting. I hope to be adding new resources to the list on the side soon for you all.

God Bless & Keep You and This Country of Ours (and the World)!!!!!
joe

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Reading Blogs

I spent sometine today reading some friends blogs and leaving my ever uplifting comments. But you folks that change your links, dam tell me so I can keep my list correct. I list you so others can read as well. Hopefully the remaining 6 people I have invited will have the balls to post and the others will continue.

• I would post daily if I could remember, but I start processing an entry and it starts one way, goes another, then turns left and winds up in the back forty, lost and me with it. Hope the changes are to you liking if not to bad, deal with it.
• Like a legal pleading now.
• Find days are slipping by quicker.
• The brain is getting bluer. Always wanted to be a blue blood, but I have obtained higher standards I am a blue brain, Ok a dumbshit.
• I was at my mens support group the other night, one of the guys there mothers has AD and wwe talk about it and he told me once that you could hardly tell, but his family insisted. He sees her every couple of months or so. Just got back and said he spent 4 hours with her and he was her brother and did not know what town they were in. He was a bit taken back. I asked is she about 4 years or so out from being labeled, he said yes and that she was on Aricipet (wonder drug, not). He asked me why and I told him the truth, she is on schedule. Also the A drug was for well toilet bowl cleaning in my opinion and many others. We hugged I cried for him and prayed for her to be set free soon. These are the real stories of AD not the commercials on TV or the movies, this is what it really does to us. Like a thief in the nite it suddenly takes what it wants when it wants.
• God Bless & Keep You & This Country of Ours! (The Rest of The World Needs Help Also)
• Joe

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Hello All!

My ggrandson Lucas is now home from hospital and out of the NICU and mom is fine, so they do not have that stress anylonger.

We built a cover over the pond and have started to plant the area, should be done soon, then will post pictures. We have a new femaile Koi that is pregnant. She is black with a white belly and white nose so we call her Orca. Have to get a male for her, since I lost mine.

I have been trying to read a book from a friend who has been published and it comes out in June, so I cannot tell you the name yet. I am having problems with it, very slow reader I am. But what I see in it that for you care givers it probably will be good. I cannot relate to the person's feelings from this side of the fence, except to let them know that many of their feelings we have on this side. Of course we don't have the family BS of what to do with us to tend with, we just keep going on and forgetting. But I can see how it could get tacky, since we are still locked away and forgotten about. Not alot has changed over the decades.

I am starting to become disconnectd from life in general and my past and who I once was. Things seem to be of little importance anymore. Ask me this afternoon what I did this morning and I will have problems telling you and so goes the day and my life. Trying to keep a sense of humor is becoming hard, I do not like this world of mine but I cannot change it, it is what it is, shit.

Posting is getting harder. The note on my computer to do so does not help much, I just start and forget and walk away. telling of the misery of this does not even fill worhwihile anymore. There is a lonelyness that is setting in a feeling of being apart from everything, and trying to hang on I feel like I am drowning in a vast void in my mind.

So much babbling.

God Bless You & This Country of Ours!
joe

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Hello My Friends, Hello!

We are back from Petaluma. Daughter and new grandson doing well. She is home, Lucas still in hospital hopefully home this Saturday.

We finally got a room on base in guest quarters. Gramps here could not handle staying with the kids, even though we had our oun room. I needed a hide out period. Had to increase meds while there just to try and cope. Am Losing control of my emotions and ability to keep calm and mouth shut.

Came home sick again. But we have figured out the problem, their is mold and mildew all over tha t base and I am highly alergic to mold. So from now on will have to build up with antihistamines before we go.

Now to start back on the pond. God this disease just makes me not want to do things , forget what the hell I am doing and really now mly emotions and starting to not care about others, they are starting not to exist for me. I have a very hard time writing on this thing now. Mind wanders toooo much. But still can get out something. Body is starting to rule itself and not tell me. Eating I forget to eat or tha t I ate real pain.

Until we meet again.

God Bless You & This Country of Ours!
joe

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Hello From Petaluma!

We are here in Petaluma. That is between San Fran and Santa Rosa. Wheather has been ok.

Our Daughter Morgan is doing fine and grandson Lucas is progressing well. He is breathing totally on his own and is now eating. So tense times are lessening. We will be here another week or so. I really wish I was home, that is safe haven for me. Plus I have some idea wherre I am there.

Other three grandkids driving me a little batty, have hard time dealing with them and their energy, trying to keeep things straight is not easy, oh well.

Will keep you updated as I reemember.

God Bless You & This Country of Ours!
joe

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Couple of Things.

Well I am back here at the monster again.

I am still asking for those of you who would like their loved ones, friends, etc. who have passed from AD to send me their picture, first name, birth year and year of being set free. As you see so far only 3 people have felt that their loved one's should be honored, what about the rest of you? Yes I can get snotty.

The chatroom will disappear soon, I only paid for it for a year and I do not know if anyone has used it, so goes life.

Also NOTICE if you have skype on your computer, headphones, microphone and speakers you can call me free just click on CALL ME button. If i am on we will talk.

Things in this world of mine are getting a bit out of touch with me. I feel like I am beginning to seperate into two different folks, the one who knows (as if I ever did) what they are doing and one who hasn't a clue.

We finally finished our second KOI pond, Sept to now, not bad. Waiting for the season to warm up to bring in new fish, lost ½ of my others. Home projects I still like but they are becoming very hazardous to me. I built a square box around the pond for cemment so that the pavers vor the patio could be laid straight and shot my self in the finger with the nail gun. Then while laying the bricks one by one and setting them I smashed the same finger with the mallet, of course I really warmed up for that brick setting. Finally has feeling coming back in it. Golden years, kiss my butt.

Wife is now home with me for not sure how long, I guess until she cannot take me anymore or I send her back to work. Wants to do toooooo many things. What a pest, but I love her, so sorry guys I am keeping her, in it for the money now.

I am still amazed at my friend Mary in Canada, how she posts almost daily, I just cannot get it together to do that.

If you have a blog or website, that is not in my lisk of links and want it there email me jolynn1@cox.net with the name and I will enter it. I do follow alll the links I have, in the back part of blogger you can list those you want to follow and you get continual updates as people post, really neat. I just need to comment more, get to involved then forget what I am doing and walk away in disgust,

Well before I babble a brook you all have a great day. I am going to hide from the rain.

God Bless You & This Country of Ours!
Joe

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To All The Best.

I hope you all had a great Christmas. We spent the time at the US Coast Guard Training Center in Petaluma with my daughter, son-in-law and 3 grand children. Now I am sick, kids were sick so gramps got it also now. Today we will be having Christmas with the rest of the family and grandkids.

I hope that next year is peaceful and blessed for you all.

I see my friend Mary in Canada has been going to town with her new site which will be updated on my links today, I hope. Need to remember to do it.

We have been putting in our third pond, moved my koi to the bigger one and lost my big guy. He was about 14 inches and around 3 pound, had him since little. Hopefully we can save the others, moved them back to old pond and started treating them, will see. So far we have lost about six. I do not know if I am sad, mad, pissed or who cares. This disease has really messed with my emotions and state of mind. As you can tell I am ok at this moment. Later who knows. So before I babble on like a brook, you all have a great day.

God Bless You & This Country of Ours!
Joe

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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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A Request

Many of you may not know, because the media does not care this is NATIONAL ALZHEIMER'S AWARENESS MONTH. Let your local papers know, let us see if they have the balls to say anything.

Again I ask for pictures, birth year and year of passing of loved ones that died from this damnable disease. Two of you have heard. They need to be remembered for they are the faces of Alzheimer's.

(Yes I used spell checker, so I cheated)!

If you like this blog I ask you to click on the Wellsphere voting Icon on the right and vote for it. I know that many on Wellsphere do not necessarily like it, I am not a caregiver or dr. I just suffer from the disease and try to tell how my life is deteriorating and getting worse as we move to my physical death. Yes the 7th leading cause of death. Probably if death certificates showed the real agent that caused death I am sure that it would be higher. Most to feared diagnosis so it is said, is you have Cancer and You Have Alzheimer's. Help me spread the word Please.

Till next time thanks for your thoughts and help.

God Bless You & This Country of Ours!
Joe

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Good Morning From Nutsville!

Yes it is your on the scene reporter coming to you from his favorite City. I have not the faintist idea what is going to come of this post. I had it thought out and as usual as I type it flutters away.

My wife, Lynn the crazy one that married me, and I were talking one day, when who knows. I told her that my feelings and emotions have real problems with themselves, half the time I do not even care or love my family, other times the opposite is just as strong. I guess this wonderful companion of mine the big Dementia, is doing its job on me as it should be. Time means nothing anymore, a good deal of the past is leaving along with the supposed friends. But I think maybe it is reallly me that is leaving and not them. As Sherlock Holmes once said, I think it was him, Come On Watson The Game is A Foot. That is how i feel.

The cursor is flashing at me, like I should know what the hell it wants. I am not even sure what I want. My head hurts, my thoughts wander and the damned things do not even take me with them, that's the shits.

Well till I remember to come back.

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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As The Weeks Go By

The last few weeks I have beeen working with others to bring more excitement to my blog
things I havve added, I once could have done in minutes by myself, they have taken days with help. Things are not well in my head nor do they seeem to be inside either. My shrink has suggested I go back to my physco. guy and my physician for some help. But I am a stubborn bastard and well you can guess the rest.

If I can remember why i have the note on my computer that says "BLOG" maybe I will post more often, even when I have nothing to say, which is gettting to be most of the time now.

God Bless You and This Country of Ours!
Joe

PS No brains, if David S. would send me the linke to his blog, use the email form near botton I would be glad to read & comment and tie to my blog.

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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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