Showing posts with label family. Show all posts
Showing posts with label family. Show all posts

Friday, April 13, 2012

Sadness in one's life.

This has been a hard week for me. My bird died Easter night. I was the only one that could handle her, very picky with people. Her leaving has really messed me up, i come down in the morning and go to uncover her and feed, water, bird talk all that knid of stuff and no cage. At night I want to cover her and say goodnight again no cage or bird. She had been ill and sitting with me at nights for long periods cuddeling and sleeping, i knew time was near, but never expetced feeling this lost over it. I look forher cage and it is not there. Change is not good for me anymore I have problems with it now. I find I am angrier inside now than ever, but I fight not to let it out at others, i just leave the room come st here at this beast and do nothing or go in my bedroom and just lay there for awhile. I find the tremors and my balance worsening daily my head seems to be screwe on sideways this crap has to endlife really is beginning to suck big time. well that is the hand i have drawen and have to play.

Take care of yourselves.

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

Thursday, August 4, 2011

I wonder why I bother to share my Journey!


As many of you know i get rather testy at times and just fell like saying to hell with it, you do not need to know this or how I feel.  Then i get an email like the one tha follows, this is why I keep trying to give us a voice.  Parts are edited since it came to my private email so no name of way to tell who it is from. But i did write back to the person, took me a short time then longer. I asked for a pic and name and dates for my memory page, but like soooooo many of you i receive nothin back. I post the pics so people will know that these folks lived, they gave, they touch others lives and that should be celebrated. well to the email i am getting on my soap opera box. by the way this has been on my todo list for sometime, i am quick.I was asked if i filled out the facebook form, YOU BET YOUR SWEET A__, I did.
____________________________________________________________________

Hello, My name is xxxxxx, and I'm a nursing student studying in xxxxxxxxxx, xxxxxx (Canada).  I watched The Alzheimer's Project documentary, and was very touched by your story.  I know you have probably heard this from so many other people who have read your story online, or watched this same documentary, but I would like to thank you so much for contributing your own experiences and stories to helping understand and find a cure for Alzheimer's.  I was asked to write an essay for one of my courses at school on anything I wanted related to disease and disease concepts.  I chose Alzheimer's because my grandfather passed away from A.D. 10 years ago.  I never had the chance to really get to know him, since his diagnosis occurred when I was only 2 years old.  By the time I was old enough to have memories of my own, he had already progressed to the very late stages of the disease.  He only spoke Italian, which I did not, thus I had very limited communication with him.  My memories with this man consist of visiting him at the nursing home, where he stared at me with blank eyes. I fed him and walked him around, and told him stories.  When he passed away, I felt like a part of me had been ripped out of my chest, and it was difficult to accept that I had not known him better, and could do nothing about that. I appreciate hearing from someone who can recount his own experiences with this disease. I do not have personal experience with this disease, and was only an observer to something that took away someone I loved.  However, I believe that it takes great strength to explain what it feels like to go through something that takes away from the person you have grown to become.  I do not know what has happened to you or your family, or if you crosses "the line" since the documentary was filmed. I would only like to thank you, quite simply, for giving me a story that my grandfather never was able to. So thank you, truly, from the bottom of my heart.

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

Monday, July 11, 2011

Let's welcome Dana and Her Family

Dana Kruckenberg  has a blog called Today's Project where she posts when she can about her husbands battle with Alzheimer's and how she copes with it. Visit Her and I know you will all welcome her and her family into our extended family for strength, guidance and hard reality.


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

Saturday, July 9, 2011

Alzheimer's The Relentless Predator!!!!

I have not talked much about me lately, been trying to give you other info.  But this blog is about my journey into neverland. Yes it is a voygae to places I do not know and people that look familar but yet are strangers.

I have been pretty lucky so far, but that is runnning out, the physical affects, my emotions and mental status are starting to change rapidly for me. Lynn has to wakee me up because I fall asleep while eating. I just stop in the middle of things, I sleep at the drop of a leaf and i forget what the hell i am talking about. My hearing is gettting worse, it never has been perfect, but the words I hear from people are becooming completly diferrent from what they are saying. Mornings use to be fine for me, not anymore, I get up still around 8am and out of bed, feed the she devil bird, my attack fish, take my meds hopefully, that all takes maybe an hour. And there I am sound asleep on the couch by 9:30 or so and completely unaware really of things until after noon.  Not that i become a mental genius suddenly but the fog clears for awhil not long anymore. I guess the 8 year path is right i am now in about year 6 or so and things are going away from me or I am going away. Not sure anymore. But you folks have been a blessing in my Life.  The Alzheimer's and Frontal Temporal Dementia are doing there job and getting much better at it. To all that bought my book Thank You, your money that I received has mostly been donated to The Alzheimer's Research Foundation.

so much for today, you all take care of yourselves.

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

PS> Last I Knew Alan Rogers was about to ascend Mt. Denali in Alaska, i think it is, and upon doing so that will be the 4th summit in his 7 Summit Climb for Alzheimer's. God be withyou Allen.

Tuesday, May 3, 2011

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

Saturday, February 19, 2011

Top Ten Country Views of This Blog!

Pageviews by Countries
United States
16,930
Russia
7,673
Ukraine
6,484
Germany
5,341
Netherlands
2,337
United Kingdom
1,121
China
858
Israel
803
Latvia
540
Canada
511

Friday, February 11, 2011

As you may know I have ben trynig to kep track of those who were in the HBO Documentary. Last time I had to notify of 4 of the 7 of us had passed. I still have no information on Fannie Davis, but I spoke to the care facility today that Yolanda Sanmartino was at and she is still with us physically and doing ok.

http://www.hbo.com/alzheimers/memory-loss-tapes.html

The above link will take you to all parts of the documentary. You can watch them on line if you have not seen them. Link will also become a permanent link on my blog.

I am will continue while I can to keeep you updated. Take care and be good to yourselves.

Wednesday, October 13, 2010

Posting Elsewhere

Yes I have been answering some posts on a site called Caring.Com, yes for so called experts and in my opinion some real whiny caregivers, but a good place for most of you to go for your help and discussion needs. Links will be on the side of my blog after this posting.
You all know how direct I am, so expect to be, being asked not to post anymore. I have not held back anything in my postings, to so called experts and the poor little itsy bitsy caregivers. Wine, need crackers & cheese. Come on this side of the fence, we have nowhere to go to escape except when we DIE, You can tell the discussion I got in really pissed me off. But that is the way it is.  I doubt how long I will still be able to post, we are entering that wild downward ride side. I loose people in conversations and sit idle at the dinner table so I am told and frankly I no longer remember yesterday, let alone this morning.
Till next tirade be good to yourselves and check the new links.

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

Friday, August 6, 2010

Asking for Help & New Link Added.

I have added a new link, Nursing Home Abuse, for those of you that may have problems with a nursing home or need help in finding and how to look for one.  Do hope that this will be of help.

I am glad to see the comments of help going back and forth, this will help you I think and hope. This is what this blog has been waiting for.  Out of the avg of 179 people that visit each day, I think some of you have great wisdom to offer each other. For me, getting better is not taking place, getting worse is and will till it kills me.

You all know I just love the medical profession and researchers with great and profound moranity. I got a mailer the other day, Alhzeimers cured and the cause, medical book supposedly. AD caused by lack of insulin in other words diabetes of the brain. The gist is that extra insulin can halt or even reverse the damage. A lot of quacks out there, amazing that this one dr. has found this out and has not shared it with the medical community but is with the world.  I think I will go have to cokes so the caffine stops my AD.

I need some help or at least to know if any one with AD out there or caregivers have noticed this happening:
For a cpl of months now I have been experienncing pain in the brain, this is not a headache or migrane as one knows them to be.  It is like someone with really big hands is reachin inside my skull and just squeezing the hell out of my one brain cell, trying to make it smaller. This can last for hours to days, even longer once it is gone I notice that more of me is gone.  I guess the details I follow because of my employment was in the field of computers and data gathering and details, still with me to a degree. Have talke to my shrink and pyhsycologist about this and get a dumb look. So you folks my family if you have any info on this I sure would like to know about it, I feel alone enough now without being the only one with this bull shit.

Monday, July 5, 2010

What Do You Like Best About Independence Day?

Ask most people their favorite part of Independence Day, and their automatic response would be “The fireworks.” What’s not to love about exploding patterns of brilliant color and the thunderous booms of deluxe pyrotechnical wonders?

The fireworks displays are not my favorite part of the holiday, perhaps because as a Vietnam Veteran, Jim had serious problems dealing with the warlike sounds. Have you ever thought about how hard it is to make it through the 4th of July without being exposed to fireworks? It’s really unavoidable.

As dementia began to affect his reasoning, Jim regressed to the time of war and the posttraumatic stress that went with it. He called me at work one day. “Those boys! Those mean boys!” I couldn’t get him to tell me what had happened. I was afraid he had hit one of them with the car. I came home to see what had upset him so much, and he finally stopped shaking long enough to tell me the neighbor boys had set off some firecrackers as he drove by.

So after years of avoiding fireworks, I’ve watched the fireworks display at Truman Lake for the past two years. J.B. and Wanda have their house festively decorated and the food is fantastic. The breeze and cooler temperatures this year were perfect for sitting on the back patio visiting with them and my son and daughter-in-law.

More important than the fireworks and food is spending time with friends and family. My sixteen-year-old grandson lit the fireworks in the yard. Between choosing and lighting the fireworks, he checked his cell phone for text messages. My twelve-year-old granddaughter and I made arrangements to go see the latest vampire movie. My grandchildren are growing up so fast that I chide myself for being so involved in work and writing projects that I don’t spend enough time with them.

While I was at the lake, my youngest son and his family drove to my house to watch fireworks at Julie’s backyard celebration. It doesn’t seem that long ago that when Rob and Julie’s brother wanted to go, Julie always asked, “Can I go with?”

After an evening spent with friends, Rob and his family planned to leave early for their Colorado vacation. They were asleep by the time I got home, but my seven-year-old granddaughter met me at the door with a hug. She always sleeps with me, and had told her mom and dad she was waiting up for “Grandma Linda.” I tucked her in and she was fast asleep by the time I was ready for bed.

The next morning, she cuddled up next to me while I drank my coffee and opened the “Why?” book. I read the questions, and she read the answers. While she read about molecules, my youngest grandson brought his play golf game into the living room to practice his swing. You would have thought he made a hole in one when he hit the ball over his dad’s head and into the space between the couch and wall. Then he found a handheld bowling game and wanted his dad to make it work.

“The batteries must be dead,” Rob said. Pretty soon, the game was up and running.

“You must have figured it out,” I said. Rob told me he hadn’t figured it out at all. I guess you can’t expect a grownup to compete with an almost three-year-old.

Spending time with family was always Jim’s favorite activity. If he had never had dementia, I bet he would have tolerated, perhaps enjoyed, watching the brilliant aerial kaleidoscopes while surrounded by loved ones. It is for certain he would have been a proud dad and grandpa if he could see his family now. Jim would have savored every moment and have recognized the thunderous sounds to be a national celebration of independence and known that he had done his part to keep America free.

copyright (c) July 2010 L.S. Fisher
http://earlyonset.blogspot.com

Wednesday, June 30, 2010

Alone

For those of you that read the comments and those that are taking care of anybody with this damn disease you understand what Deb is talking about. Our lives take on a new direction. Not only are those with the disease withdrawn but so are the family members and the caregivers. We are withdrawn from society because we can't get them to go out or hold a conversation anymore. So yes we sit and watch tv shows and do things that we do not really want to do because it is what they want to do and it is hard. Try to keep doing normal things for you. If only it is to get out to the grocery store, or have lunch with a friend. We have lost our best freinds. And we will lose them again. Conversations are hard because they either do not want to talk or they can't get the right words out. We play charades alot. Joe will want to say something and usually starts ok but he ends up pointing or grimacing and I can usually figure out what it is he wants. As with everything else it too will go down the drain. Joe started this to let everybody that wanted to, realize what was happening inside a victims head, understand what they were going through. I am glad that he has helped.

Sunday, June 20, 2010

Happy Father's Day

To all you dads, grandpa's and uncles a happy fathers day.  Oh by the way one to you rascals that may not be sure if you are. To our father's in harms way our troops a very special day to you my friends.

This hopefully will be the first of two posts today. My eldest has gone to the hospital already this am to have what should turn out to be our eight grandchild.  She did it once on mother's day so why not. BBQs were planned for both these occassions.

A special prayer for those in the gulf, May God Grant You Peace and Show you the Way. Amen.

More later.

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

Tuesday, February 23, 2010

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

Friday, January 29, 2010

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

Monday, December 14, 2009

New Studies - These People Are Idiots!

SmileyCentral.comYes that is my take on this. They do not have a clue to what they are doing.

NEW STUDY: Gist of the study is that those who have 5 cups or more of coffee each day can slow the onset and progression of Alhzeimer's. Now is what few cells I have left are working, I believe studies in not to distant past showed that this type of coffee consumption put you at a higher risk of Bladder Cancer. Well I guess drink the coffee, get the cancer, stop drinking the coffee and forget the cancer. Maybe I am wrong but seems to me, that spirits were part of this one.SmileyCentral.com

Next & I Love This One: proves a point made in one of my listing.SmileyCentral.com

Salk Institute scientists in La Jolla, CA: major incredible fantanstic break through. Of course we used GENETICALLY MODIFIED MICE:so normal humans won't work in this one. The GM mice "not only lived longer, but the onset of mental decline was also delayed". Reports Andrew Dillion of the university as reported in the North County Times by Bradley J. Fikes. This gets more interesting, I love amoloyids, they do not know what they are to do. According to Dillin (A Professor at Salk), their research shows that th plaques of these toxin protiens in those of us with AD and the like: ready for this: ARE NOT THE CAUSE OF THE DISEASE. Guess allyou PHDs outhere need a brain transplant. Instead and this is a quote from the article: "Instead, the clumps of beta amyloid proteins are how cells stow away the toxic proteins where they can't do damage, Dillin said."
Well now, rest of study is to be published in the 12/11 issue of Cell. Have not gotten to it yet.

I hate to rain on a parade but these folks are all over the place. This is why I am so harsh on them. They can not get their heads unstuck from their a****.

Cannot repair brain cells from what I know. So I see no cure, and all meds may slow down the progression no solid proof they do in at least 85% of AD patients, that I have found, more like maybe 20% if at all.

This is just interesting to me. You may or may not know that many NFL players over time have donated their brains for study, after they are dead to see the affects of all the concusions and blows to the heads they take do. In the group thus far checked of those in their 30,s to 50,s that have passed, it was noticed that, all though no signs at least know showed, but these guys had brains that looked like they had some form of Dementia for YEARS. just something interesting. So you folks know that I do try to keep up as much as possible on my disease and the tinker toy ways they are working on it.

Blast me, but these folks still do not get it.

God Bless You & This Country of Ours!SmileyCentral.com
Joe

Wednesday, November 25, 2009

Happy Turkey Day!!!!!!!

I wish to you all a very Happy Thanksgiving. Eat well and stay safe.
Webfetti.com



I was thinking of this now and felt I better post it before I drift away again this day. My thanks are for all of your support and comments.

God Bless You & This Country of Ours!
Webfetti.com


Joe

Saturday, October 10, 2009

Anger Sits With Me This Day.

Since HBO has ran and is running the documentery on AD, I have had a slew of emails from this country, Chilie, Brazil, Canada, Australia, Israel, just all over. What has gotten to me is the YOUNG PEOPLE, who have suffered the loss or are suffering a parent and a grandparent and because of this special they want to do something to help. Wow I say, and the adults in this country and around the World have sat on their asses all this time, yes even the tauted medical profession. I hear we have come along way since 1906 or 1908 whenever AD was coined. How far have we come is it in real knowledge, help, knowing the CAUSE, curing or is it just plain ass TIME? I read the studies and that contradict each other, the so called quak cures and how to stop and cure it. But yet I have not read on single word mentioning a persons name that has been cured.....
Oh let us march for a cure, bull shit. Let us first march to find the cause, no cause no cure, that is how it works. Yes these folks will do good in raising funds and maybe some awareness to help in the research on the disease. But since it does not affect your boobs, balls, prostate, colon or lungs, I guess it just does not warrant the NFL or other major playes to do anything. You know I have seen the cancer marches, heart disease, etc. and people where T-Shirts, "I AM A SURVIOR OF CANCER". Watch the walks for AD and find me a picture of just one person that has a shirt that says, 'I AM A SURVIVOR OF ALHZIEMERS OR DEMENTIA"! find it, it will not exist, we all die period. I know Iwill get hate mail and the such, but bring it on, truth stands on my side. Ask the literally 10's of millions around this World that have been affected by it having or knowing one. I do not take the other killers, cancer, heart disease, diabetes, obesity, aids, etc. lightly but boy are there a lot of people (baby boomers) in for the ride of their life, with no real help.

Straight talk from one who suffers and is declining, I hope that I enrage you enough to do something and get rid of socialized medicine it is a failure and by God, do not just take your Drs. word for what is wrong, make hin/her explain why and in detail. It is your LIFE and your BODY that is at stake.

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

Sunday, August 2, 2009

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.

Friday, July 31, 2009

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!SmileyCentral.com
joe

Tuesday, July 28, 2009

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