Showing posts with label guest blogger. Show all posts
Showing posts with label guest blogger. Show all posts

Monday, February 21, 2011

Old Mems and New Ones

I have found that old memories aer stil there but they have no time stamp you might say, I can tell you about them, but part of the probelm is that two or three may get mixed together, facts are pretty good, but knowing exactly  which memory they belong to, well you have to guess. New memories, I have only about 2 days worth, they do not stay for long at all. In fact have trouble with telling you about this morning even.

The wife colored her hair today, did it this morning so I am told, I did not notice.  Later we were up in our office, that sounds so officey doesn"t it, just a extra bedroom with the computer.  But that makes us Yuppies we have an office. I was looking at this woman in front of me and knew I thought I knew her but something was not right. I had her turn around and finally my mind put back some old color in her hair and I knew it was Lynn. Said you colored your hair, YES, when this morning, oooh i said.

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

Sunday, February 13, 2011

Because of You!

Yes because of you my every growing famliy out there we have made progress>
As you may or may not know their are something close to approaching 100 million sites on the Internet world wide. When I started the story of mine and asked you to join in this blog was number 57,xxx,xxx million something in standing. Well we are making an impact somehow, because it is as of today 927,085 in standing, Good JOb you guys. Out of the 10's of million in the US, we are now listed as 190,851, I am so humbled by what you have done.

Also thanks to those who have purchased my book.  I truly hope you enjoy and pass on the info to others. Now on the other hand me being a very tiny little bit mercenary - tell your friends to buy it and have them help spread the word as well.

I am going to invite more to post here soon. My haze is starting to get heavy and is keeping me from my job to let all know, how really crappy I feel. but yesterday I was a ball of fire, was so busy donig things, were it came from is beyond me.  Today different story.

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

Monday, November 1, 2010

An Email From a Friend.......

As many of you know from time to time I share emails with permission. This is one I got just recently. You all seem to be amazed that even advancing in this fricken disease I can still communicate. I want you to know that all of us with AD or other forms of dementia are not always stumbling, bumbling and drooling people. Some to the end, not many still reamin mentally strong, maybe not physically but one cannot have everything. Also this email may give you a hint of why I take no meds for AD, just mood stabilizers, the shit does not work if that helps.**************
Dear Joe and Lynn,

Thank you again for your response...these letters and blogs must keep you both very busy...I don't know how Joe still does it, but thank you from the bottom of my heart. My father suffered from AD silently...we did not know what he was thinking or feeling...he tried to live life as if he didn't have the disease, including not talking about it. The only glimpses we had were his physical struggles, his hallucinations, and listening to his frustrations...we had to try to fill in ourselves what was going on in his head. Joe, you have no idea how much your shared words help us understand what you are feeling or experiencing or thinking...more than you know. I wish my father could have expressed what he was experiencing, but he didn't, so I am learning from you.

I just checked into your blog...I am sorry to say that I haven't been able to keep up with it regularly (due to restricted internet access), but every time I visit your page, it brings tears to my eyes...I am just filled up with sentimental emotion on how much you share, and your struggles doing it, and your struggles with the disease...thank you for all the work you put in. I am amazed at how articulate you still are at this stage.

I am so happy you published a book!!!! That's great.

I unfortunately could not find the memorial link on your page...I must be overlooking it. But I would love to send you the information on my father, and a photo. I will let my mother know.

I was also thrilled to hear that you are doing the Memory walk in Oceanside. Before I knew that, I was going to e-mail and ask if you and/or your family if you and they might be interested because I want to do it too. But I have to get my butt in gear to sign up and send out the e-mails. My mother did the walk in Florida about a week or two ago. I'll honor my father with a team bearing his name; however, I do not have family here, so unless friends join me (and they might), I might be a team of one. I would be honored to walk with you and Lynn if you like. It sounds like you might not have many walking with you, so if you and Lynn need any help at all, I would be happy and honored to help. I helped give care to my father until he passed.

This is getting long for you to read, so I will sign off. If you want to put any of this last response on your blog, you have my permission.

God bless you all (and my father would have agreed with Joe on "...and this great country of ours")

Cheryl

________________________________
God Bless & Keep You & This Country of Ours!!!
joe
PS Cheryl has no real idea what emails and comments from you folks really mean to me. They keep me wanting to post, even though I feel no one really gives a shit.

Sunday, September 5, 2010

Waking Up What Is It?

I have come to belive that waking up is not all that it is cracked up to be. It seems that I never seem to wake up completely anymore. I more or less remain is a state of awakeness if that is a word, if not it is now. I just never seem to quite get with it anymore. I am becoming much more testier and argumentative, wow I think I spelled that right.  Time is more jumbled now then ever before and I have more difficult in getting things out and what the hell i do no t know what i whant to say here.

I no longer enjoy being downstairs in my home, only outside in the front or back or upstairs, i do not know what it is, i am very uncomfortable now. We just spent I do not remember how much when remodeling downstairs the way we wanted it and I do not want to be down there now. I do not understand me anymore. Lynn wants me to talk to her and I cannot even talk to myself. Hell I always talked to myself, I was the only one that had the answers I wanted to hear now I cann't think of them.

Well take care for now.

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

Tuesday, July 13, 2010

I greet you this day not really knowing why. It seems that the days are starting to have little meaning anymore. I try to keep a sense of humor about things, but there is nothing humorous about what is happening to me or those around me. I find myself staring off into space or just at nothign these days nore amd more. Things seem to mean little anymore to me and I just do not know how to handle these feeelings and moods. Things keep slipping farther and farther away from me.

I have tried to make this blog as time has gone by a place for meeting and exchangin thoughts and felings on dementia in general. I gave the site a chat room for a year that I paaid for open 24/7 for whoever wanted to talk not just to me but to others a failure. I opened a direct chat line to communicate whichcost me over$80 a month so we could talk, 5 people, a failure. I invited over 25 people to blog here because of their involvement with dementia, that has been a failure, I even set up Yahoo Messenger for instant chatting that too went down the tubes, I even have tried skype without any success. Comments I have gotten, emails I have gotten, but I guess my expectations (premeditated resentments) should not have been. I have removed all of the about except comments and email.

I am trying to give u articles as I find them that maybe of interest. I have a feeling that will be of no avail. Bitter yes I am, angry and pissed, yes, at those who come and cannot even take time to comment yes, but most of all at ME, for especting and planning and most of all trying to plan the outcome.This fricken disease plays a lot of games with your head and sometimes I am not even sure of what I am writting, minutes from now I will forget and I guess for me that is ok. Keeping my angry under anytype of control is getting difficult, increase in meds is not helping, well so much for my bitching, like most things it will get me nowhere fast.

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

Thursday, May 13, 2010

No Title

The las few days have beeen really rotten. I have been confused, frustrated and a pure asshole. I have hurt my wife, not physically. But through being just a complete moron and ass and I cannot explain why.

I need ot openly appologize to her, just doing it directly has not been enough for me, I have to share it with another human being and my God for me to be free from it.

I am afraid this is a sign of things to come, havig real problems with conversations, remembering things, I just zone out and get really confused over stuff.  It is no wonder what I did really got to Lynn, she has so much to put up with me now, not to mention the prior 30+ years. I feel myself slipping more each day, so far I can for the most part notice it, but there are days I have no idea what is what. So I leave you for now, tomorrow if wonder lust here remembers I have some emails to post, that give hope to My World that there will be otherss to watch over us as we wear the current ones out.

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

Sunday, April 25, 2010

Messing Up

I have been making some changes, and probably should have had someone else make them. A few things have disappeared and others moved to second page with everything else.  Eventuallly I hope this will all get fixed right.

The skype call button now works after months of well disconnect. See they require you put in your correct user name, can you believe that. So finally I RTFM'd (back in my computer days that meant Read The Fucking Manual), and found I forgot a (.) period in my user name. So if you have tryed without success, it seems to be working now.

Hope to have thr rest of the mes cleaned up soon. Brain cell is getting overloaded.

God Bless You & This Country of Ours!
joe

Thursday, April 22, 2010

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

Sunday, April 4, 2010

May The Lord Bless You This Day & Always!!!!

From my family to yours a very Blessed and Happy Easter. To those of you who have entered this World of mine and do not celebrate the day, celebrate it with us for you are welcomed here.  To all I extend to you my hand so that YOU KNOW, THAT YOU, NEVER HAVE TO DO THIS THING CALLED LIFE ALONE EVER AGAIN.

Well I have started inviting some folks to be guest bloggers and we will see how this works. I have tried with a 24 hour chatroom for you, that was not used, different ways of talking not taken advantage of. See This is My Blog, but You are a part of it and I would like you to share in it. Only requirement is that you deal with dementia, as a caregiver, reasearcher or one on this road of unknown journey. Thanks Dr. Joe for being first to join in.

If you wish to join me and others here, just fill out the email form at the bottom of the right hand side and send me your email address and I will send you the info. Actually Blogger will send it for me.

Well the family has descended and I have found it necessary to retreat. I can only be a jungle jim for so long and I hurt. Body is definitely not what it once was, not that it was ever much to start with. My temper is much shorter and I have a hard time controlling me, so retreating works.

I feel lost today and not quite sure what the old brain wants besides to escape and be alone somewhere.

We may He Bless You All This Day and Forever.]

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

Saturday, April 3, 2010

Guest Blogger Joe Sivak MD

I would like to thank my friend Joe for the privilege of being asked to be a guest writer on his blog. In the big scheme of things I have known Joe for only a short time through the wonderful technology of the Internet. I started blogging about eight months ago and soon found Joe's blog. I immediately resonated with so much of the feeling and emotion and spirit with which Joe writes. I felt sort of a strange kind of kindred spirit.
It is sort of that weird feeling, where you never met someone but when you connect with them, you feel that connection was always there and it is sort of timeless.
You see Alzheimer's was the thing that connected us. Joe has the disease, my mother was diagnosed with the disease in 1979, when most people had not heard of it. I started a book about my journey many years ago and finally finished it this year. It is titled When Can I Go Home? I asked Joe to read the book and tell me what he thought. I knew it would be hard, and I debated a long time. I didn't want to make Joe feel sad or mad, but his review in a way was the most important one I wanted. It was more important than if I could get Publisher's Weekly or New York Times or any high profile review. Why was that?
I wanted to show that people with AD are people who count, with thoughts feelings, and a spirit. No matter how far the disease gets, there is a person. The point of Joe's blog and the point of my book is that we should never, ever cast aside any human being just because they have AD. The truth of that matter is: is that now matter how far we think we have come as a progressive, altruistic, advanced and humane society, we have a very long way to go when it comes to people living with Alzheimer's.
Alzheimer's initially brought us together, but immediately after that the connection was fundamentally not about the disease, but just about two guys, Joe and me who actually share a lot of the same fundamental views and insights. And Yes, Joe has tremendous insights that we can all learn a lot from.
I am a psychiatrist, but Joe didn't not hold that against me. Neither of us particularly like psychiatrists. Joe instinctively knew and knows that is just what I do professionally, sometimes in that realm I can help people and sometimes I can't, sometimes all I can do is be there as a human being yet in that pretense of a professional realm.
Joe said he only read a couple books in his life, mine and Bill Cosby's Fatherhood. So I was indeed in good company!
Joe knew and talked about the disease, he knows first hand better than anyone, how Alzheimer's is two deaths. The disease taking the person's mind and the physical death. Joe and I know the disease tries to take the person's spirit. some days it feels like it does, but it never really can or will. You see Joe's spirit is there and always will be. You see it in those faces in those pictures he posts, it is in those grand kids. Those faces, those smiles, when you see it in his family and grandchildren you see Joe's spirit and his goodness, and the disease never ever can or will take that away. That lives on forever, that spirit is eternal. Take a look at his pictures, it is there. You see Joe's essence.
Joe asked for a picture of my mother. He posted it on his blog. Her name was Madeline. She is physically gone from the earth, but Joe knows that we never forget, and her essence lives on through her kids and grand kids, and the disease does not get to take that. People like Joe are a gift to the human race, he reminds us to never forget.
In a way Joe knew the pain I still feel from my mother's disease, he sort of offered me a kind of spiritual absolution, a setting free if you will. I never really considered or expected that, but Joe knew. I hope in some way although I know it was hard fir him to get through, that in reading the book, somehow our connection set him free just a little. He knows I will never cast him or anyone with the disease aside. Joe is not an Alzheimer's victim, Joe is just a guy, a human being who happens to be living with the disease. We can all learn a lot from his writing, it should be required reading in schools. He is tough and smart, he is human. We all have a little bit of Joe in us. He will keep blogging and writing, it is not about the words it is about his essence and his spirit. He will keep loving life and hating the disease, just like me. He will love his family and his love will go on generation after generation.
Thank you Joe for this honor to post on your blog. Your courage and dignity and humanness is there for everyone.
Joseph J. Sivak MD