Goodbye Mr. Peter Falk!

Dear Peter,
Thank you for the years of Columbo and many other movies that you so entertained us in. You will always be remember for that wonderfully prestine kept car, your Gentlemen's Q dress and your mild manner of investigating.  Yes I was a fan.  You are now free from this bastardly disease, yes I am jealous I am still awaiting my freedom.

Only wish that you and your family would have choosen to go public loud and clear and beat the drum loudly for all of us that suffer.  You could have done so much for us. I know it is hard to let people know, but our closet needs to be smashed so that folks know there are real faces and voices behind this disease.

But rest in peace now and enjoy your freedom, walk with the Lord my friend Peter.

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

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When is it time?

This is a question I pose to all of you caregivers. When is it time to take away all of the freedom that a person with AD or any kind of dementia? Like the bank accounts... You take them over and they still have to put their fingers in it so things are not quite right, or you know they need to go to the DR. but refuse. The dentist, but they refuse. Takeing a bath and unless you are hog tying them down they are not going to take it. No I am not talking about you Joe. I also know that if things are not taken care of it is a form of abuse but what do you do?How do you deal with those issues. I know that they are coming for me and I can't hogtie Joe down. He is just too strong for me. This is something that I would think all caregivers deal with at some point. When do you put into effect the POWER of attorney and tell them that they can no longer make any decision? It is sad that they are losing what they are and knowing it but when do they not know anymore? Input from all of you would be good because I will be needing this information too and I am not looking forward to it. This will be a battle of epic porportions when I do.
Take care

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For Those Who Can Still Walk!!!!!

Yes this disease even takes that away from you. I know I have griped abouut the brain going away, but it seems my feet and legs are developing a mind of their own now. Several times I have falleen and trip and got hurt, but never thought of how AD is affecting me in that way.  Well the other day I had some sense knoccked into me. I was putting away the garbage cans, tuff duty right? We let me tell you it can be, putting the last can away I was practicing walking backwards, front ways not that good, try something new: Well I check where I was going turneed back around, steppped out of my sliper, apparently steped on my foot, you got it I went on a trip. My rather robust bottom slammed on the walk way, my back hit the pavers and this empty head of mine proceeded to put a rather nice looking dent in the one metal storage shed we have.  I have to admit the shed looks good it now has character. Me I have character to, back hurts like hell, my head hurts, the crack in my bottom has widened and I have been advised by my keepers, that maybe I should not do that anymore. You loose one freedom after another with this crap.

Until we meet again, take care of yourselves. I hold walking classes every Tuesday at 1pm PST.

God Bless & Keep You & This Country of Ours!!!
joe (the marathon walker)

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Once There Were Seven - Now??????

Many of you may remember the HBO special, specifically "Memory The Loss Tapes".  Both my wife and I have tried to find out how each of the perssons in the film were doing. However calling and emailing HBO brought not even a response of any kind jus SILENCE. I know my wife will hit me upside the head for this, but I guess they got their awards and that is that. I met these folks and they were oh so nice and greatfull for each of us letting them into our lives. It is not the actual people that filmed the part I was in that I am miffed at (being politically correct here), but those at the top who do not seem to really care beyond their fuckin awards, sorry wife but I had to let it out.


The film had the following folks in it:  Bessie Knapmiller, Fannie Davis, Yolanda Santomartino, Josephine Mickow, Cliff Hoffman, Woody Giest and of course me.


Theough research my wife was able to find out most of the information we wanted to know. Remember we all had been diagnosed for about the same number of years:
Bessie Knapmiller  set free 2/2010 she won!
Fannie Davis: unable to find out
Yolanda Santomartino: unable to find out, but her age and condition tell me she may not be with us anymore.
Josephine Mickow: set free 10/2009 she won!
Cliff Hoffman: set free April or May of 2008 before filming complete, he won!
Woody Giest: set free 3/2010 (believe this is correct) he won!
Joseph Potocny (ME): well your still stuck with me.


I have mxied emotions about my comrades, as I do not like to see anyone die, I am also happy for thsoe who won and beat this bastardly disease. I am also jealous that I am not with them. As for Fannie and Yolanda, I pray the Lord has you in his arms and comforting you.


I ask the families of those past on their permission to post a picture on my memory page of their loved ones and that they send me one:  jolynn1@cox.net


This is for me a sad day of posting. Take care of yourselves.


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

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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

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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.

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From A Friend

Those of u that follow me know I love jokes about my condition, most are so true and funny. The one tha follows as many I got from a good friend who brightens my day often. Some may get offended but to damn bad, sit and think in through it is funny, our gov. would make this suggestion.

The phone rings and the lady of the house answers, "Hello."
''Mrs. Sanders, please"..
''Speaking."
''Mrs. Sanders, this is Doctor Jones at Saint AgnesLaboratory. When your husband's doctor sent his biopsy to the lab last week, a biopsy from another Mr. Sanders arrived as well."
"We are now uncertain which one belongs to your husband.. Frankly, either way the results are not too good."
''What do you mean?" Mrs. Sanders asks nervously.
"Well, one of the specimens tested positive for Alzheimer's and the other one tested positive for HIV. We can't tell which is which."
''That's dreadful! Can you do the test again?" questioned Mrs. Sanders.
"Normally we can, but Medicare will only pay for these expensive tests one time."
''Well, what am I supposed to do now?''
The folks at Medicare recommend that you drop your husband off somewhere in the middle of town. If he finds his way home, don't sleep with him."


see I would get lost.


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

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Before The Lynchers Come After Me!

Sorry I forgot they have discovered a GENE in some families that makes them more prone to AD. What a mystery, we knew it ran in some families, great rocket scientist work that there was a gene. So I ask, what does that do for these folks? Did you discover how the gene causes AD? (Yes or probably NO) Just how will this help those to follow me and others? I know I sound skeptic, but 100+ years and nothing. Imagine HIV in 1980's, we are now working and testing a vaccine for it. I am sorry for thoses who got the disease through no fault of there own, but sharing needles, unprotected sex, etc. your choice. I and those before me and with me have not had any choice in this. I could take on cancers and heart disease, but I think most of you know how I feel and why.

#7 Reported Killer - AD.  No cure, No Survivors. Only you can really help come out of the shadows and join others and beat down the doors of stigma, we are not lepoards which now can be stopped.

God Bless You & Keep 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 Special Request.

I would like to add a slide show to the side of my blog. I want to make this a memorial to those who have passed from this disease. So I am asking you to email me a picture of a friend or loved one with their name and birth and deceased years so I can make the slide show. I would like to honor those that have gone before me and paid the final price of this disease. Maybe their faces will prompt those who visit this blog to take some type of action or get involved some way to get those needed to help out (government????). I hope this is not offensive to anyone, if it is well then.

Thank you in advance. jolynn1@cox.net is the email to send to.

God Bless You & This Country of Ours!
Joe

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Welcome to 2009!

Well the New Year of 2009 is well upon us. New challenges, changes and I am afraid much of the same old bullshit. I hope your year is good to you, I know that mine will only get tougher, but that is alright. Just think if I didn't have this wonderful sickness, YOU MIGHT. So I am doing you a favor. May you find comfort in you life and giving to others.
My world and how I feel in it much of the time.

God Bless You & This Country of Ours!
Joe

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December Already!!!!

Yes it is that time of year again. For me Thanksgiving seems years ago. Time no longer has a start and finish for me. Well it will be here soon, probably sooner than I think and be gone before I know it was here. This year has been fillled with manny things for me. Or I think it was, I am no longger sure of it. But I still awake each day and breathe, I might looose most of the day but I am still there somewhere for it. Funny somedays I feel in total control and then for days I have no idea what is going on. I try to get to this each day, but at last it does not work that way. Early or not at all for the most part. Catch Ya All Later.

God Bless You & 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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Only Us With AD & The Likes Would Think of This!

an email that was forwarded to me. my life in a nutshell.

AAADD
KNOW THE SYMPTOMS.....


PLEASE READ

Thank goodness there's a name for this disorder.
Somehow I feel better even though I have it.

Recently, I was diagnosed with A.A.A.D.D. -
Age Activated Attention Deficit Disorder.

This is how it manifests:

I decide to water my garden.
As I turn on the hose in the driveway,
I l ook over at my car and decide it needs washing.

As I start toward the garage,
I notice mail on the porch table that
I brought up from the mail box earlier.

I decide to go through the mail before I wash the car.

I lay my car keys on the table,
put the junk mail in the garbage can under the table,
and notice that the can is full.

So, I decide to put the bills back
on the table and take out the garbage first.

But then I think,
since I'm going to be near the mailbox
when I take out the garbage anyway,
I may as well pay the bills first.

I take my check book off the table,
and see that there is only one check left.
My extra checks are in my desk in the study,
so I go inside the house to my desk where
I find the can of Pepsi I'd been drinking.

I'm going to look for my checks,
but first I need to push the Pepsi aside
so that I don't accidentally knock it over.

The Pepsi is getting warm,
and I decide to put it in the refrigerator to keep it cold.

As I head toward the kitchen with the Pepsi,
a vase of flowers on the counter
catches my eye--they nee d water.

I put the Pepsi on the counter and
discover my reading glasses that
I've been searching for all morning.
I decide I better put them back on my desk,
but first I'm going to water the flowers.

I set the glasses back down on the counter,
fill a container with water and suddenly spot the TV remote.
Someone left it on the kitchen table.

I realize that tonight when we go to watch TV,
I'll be looking for the remote,
but I won't remember that it's on the kitchen table,
so I decide to put it back in the den where it belongs,
but first I'll water the flowers.

I pour some water in the flowers,
but quite a bit of it spills on the floor.

So, I set the remote back on the table,
get some towels and wipe up the spill.

Then, I head down the hall trying to
remember what I was planning to do.

At the end of the day:
the car isn't washed
the bills aren't paid
there is a warm can of Pepsi sitting on the counter
the flowers don't have enough water,
there is still only 1 check in my check book,
I can't f ind the remote,
I can't find my glasses,
and I don't remember what I did with the car keys.
Then, when I try to figure out why nothing got done today,
I'm really baffled because I know I was busy all day,
and I'm really tired.

I realize this is a serious problem,
and I'll try to get some help for it,
but first I'll check my e-mail....

Do me a favor.
Forward this message to everyone you know,
because I don't remember who the hell I've sent it to.

Don't laugh -- if this isn't you yet, your day is coming

By the way don't forget to VOTE!

God Bless You & This Country of Ours!
joe

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Lost in Time!

Wow here it is amlost the midlddle of September, where have I been. It seems like as each day passes I become less and less aware of the day, date, week, month or the time. It is all seemilgy running together. It is like today is almost a repeat of yesterday. I now have problems with some of my conversations, my tongue seems to get in the way and I get all screwed up in what I am saying, so I gust wave my hands and say latter. Which of course latter does not come because I for get what I was saying in the first place. It seems to be this whole time affect first forward then backwards, drives me nuts (that is a short drive). I find that i get more irritable as time goes on, I try to handle it but well sometimes that is just the way things happen. I did not even realise that we were this far into this mont. Halloween will be here and I will not know it, except for the candy and the tricker treators. Well I guess I will go do something, probably something of no importance, but it will be something I think.

God Bless You and This Country of Ours!
Joe

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Why I Do This Blog!

Message = Joe,
First I would like to say that I am sorry for the crappy deck of carded dealt to you. It seems as if we are looking forward to working ourselves to death to enjoy our older years. And then this. It is not very fair at all.

I came across your blog while researching Dementia. My mother-in-law was diagnosed 3 years ago at the age of 51. She progressed quickly and has now lost the ability to talk and lost her ability to control her bowel movements. She is trapped in a world all alone.
Do you have any advice on ways to comfort her? I would like for her to know that no matter if she knows us or not that we still love and care about her.

Thank you for your time and I hope for the best for you.
(we will call her)
Pam

Subject: Your Mom

Dear Pamela,

Sorry it has taken me so long to get back to you. I keep trying and keep forgetting or start and go off and start something else. The nature of this Disease. Being that your mother and I live in the same World which is different from yours. I can just imagine your feelings as a caregiver, that is why I started my Blog, so the outside world could get at least to know how it is for one person and help some to understand those they are caring for.

The best you can do for your mom is what you are doing. Being there for her, talking to her, telling you love her, sitting with her and not speaking, hold her hand, smile at her, keep your tears to yourself, she has too many in her heart to bear yours. Trust me she know deep inside you are there and helping. This disease just stops us from responding well and takes our lives away from us. I know my family gets nuts over me, because I cannot always hold a conversation with them or follow theirs and I forget who the hell they are. I am pretty outspoken and direct if you really read my blog. I am offensive at times and I do not care, because I am discussing My World the hell of it. Be glad on this email I used spell checker, because generally do not I want folks to know how this crap really is. Any further emails I will not use it, so I hope you are good a picking something apart to understand it.

Being there for your Mom is the single best thing you can do for her. I have told my family and it is in my blog, when I get to close to crossing the line of this disease as your mom has, I will say good bye to all and be gone. I will not put myself or family or friends through the last stages. See I worked for a number of nursing homes that had those that could manage on their own and those that needed assisted living care and those who needed accute care, as I was developing this disease. I still remember going through the lunch room at one of the homes (I took care of three homes computer systems) and watched the attended lift this ladies face out of her food and clean her, never I said at that point would I allow my life to become such a burden and worthless being. My heart broke that day and I finally noticed the real death of these folks that were around me. They were gone and someone else was living in them and I cried and said never would I put anyone through that. But remember that is me and my feelings.

I may post this reply on my blog, if you do not mind. I sometimes use the email people send me and my answers back to them.

God Bless and Hold You Tight in His Arms!
Joe

Joe,

Thank you for your response. You are more than welcome to post this on your blog. Reading through your eyes has given me perspective. I hope a lot of other people, especially caregivers, can see this too. Maybe it will take some of the frustration away. Maybe it will help people be a little more compassionate and forgiving and a little less annoyed and frustrated.
Thank you for your insight.

Pamela

God Bless You and God Bless This Country of Ours!

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A Friend Shared With Me, So I Pass It On To You!

THE POEM
I knelt to pray but not for long,
I had too much to do.
I had to hurry and get to work
For bills would soon be due.
So I knelt and said a hurried prayer,
And jumped up off my knees.
My Christian duty was now done
My soul could rest at ease.....
All day long I had no time
To spread a word of cheer
No time to speak of Christ to friends,
They'd laugh at me I'd fear.
No time, no time, too much to do,
That was my constant cry,
No time to give to souls in need
But at last the time, the time to die.
I went before the Lord,
I came, I stood with downcast eyes.
For in his hands God! held a book;
It was the book of life.
God looked into his book and said
'Your name I cannot find
I once was going to write it down...
But never found the time'

God Bless Your and This Country of Ours!
Joe

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