Yes i took that from an old song, but that is what my life has become, just time trapped in a bottle. It has taken me several days to get to this, just keep forgetting and doing who knows what. My wife was home for 6 weeks had an operation, at our age it is called a procedure, shee had to manny kids never could say no. Had to fix stuff up. She finallly got to see ME as i really am now, not just late evenings or on weekends, but the whole day of confusssion that I go through. I accutually do get some things done, what you say? good question. I find even old memmmories are getting mixed up in their time span and order, forget the last couple of years. This life really fuckin sucks at times, but at least I still am breathing and can have solme assembalance of converstation with folks. I loose more and more of each day, I fall a lot easier, just fall get up and fall again, nothing to it.Climbing stairs is getting nearly like mountain climbing, as if I would know, never climbed mountains. MY daughter and her family came down on a surprise visit for mothhers day, I love my family to death, but tolerating them all here with the kids and the noise level is geting very difficult for me, I feel like I am on the freeway with all the cars honking, the pain in my brain, a little poetry, I still have it, becomes overwhelming and my so called social skills go out the window fast. I go hide in the bedroom or just go to sleep to escape. I can only imagine how they must feel with this behavior, I know it bothers the crap out of me.
I am true royalty, as you know that we are all blue bloods, are blood is blue until it hits the air, well I have a lot of blue in my brain (dead stuff) so remember when you read this blog you are in the presence of TRUE ROYALTY
GOD BLESS YOU AND GOD BLESS OUR COUNTY! (SEE OBAMA I DON'T CARE WHO I OFFEND)
JOE
Wednesday, May 28, 2008
Thursday, May 22, 2008
A Sad Morning
This morning has beeeen one of those moments as I call them when old things pop up that create heart ache. I was recalling when my frien Jimmie, friends since we wer 5 and lived accross the street from each other, at the age of 16 was found hung one afternoon, the loss is still with me and I cry for him and cannot wait until this fricken disease erases that memory, for he was one of two of my close friends that died that way at the same age. I talked to an old school mate this morning informing him I would not be at our class reunion from Austin High in Chicago from 1962, good thing the invitation is in front of me. We spoke briefly and asked him to say high and wish them all Gods' blessings for me. My social graces then were not very good and now I go off in a momemnt and and would be3 more of a disruption then a pleasantness to the festivities. This is my link to all of you that visit me, in My World that is occupied with outhers in the same sinking ship. I do my best to enjoy what I have, but I am noticing that I am increasingly forgetting yesterday and last year and some years before more often. I get lost in conversations, God only knows where I go because I sure the f&*k don't. Enough of the pitty potty, I am still here and able to speak to you. I truly enjoy hearing from YOU out there, so for now take care of yourselves.
God Bless You and This Country of Ours!
Joe
God Bless You and This Country of Ours!
Joe
Thursday, May 15, 2008
Denial, Regret, Sorrow, Shame or just Pissed Off
Some of you are aware that I am forard about my dealing with dementia. But many I hear from, caregivers, talk about the charges are in denial and non acceptance of what is. To this I say BS, I know you are true and giving people and really feal that way. But I have talked with over 1500 people that live in this World of MIne and they all knew from the start and still do. What follows is a typical e-mail I receive, filled with love, compassion and not knowing how to really help. I have left off the peoples names for their own privacy. After you read the email I hop to explain why i feel that DENIAL is not a real part of dementia.
"Hi Joe and Lynn.
Unfortunately I don't think that Mom is ready to BELEIVE that she has Alzheimer's. She is the daughter of a German farming family and is very stoic. She has never been known to share her emotions openly, and now the disease has exaberated the issue. Don't get me wrong, she is very sweet, we are so lucky that way. My sister and I both beleive that she sees herself quite differently than we do. She is 84 and was one of the "June Cleaver" type wives. We remember the frequency of the phrase "what will the neighbors think?" She retreats to what we call "the bubble" on a daily basis. The length of these visits to the unknown vary day depending on the good days/bad day thing. It is on these bad days that Mom will hardly speak at all. She goes far away and has a distant look in her eye. We occasionally have opportunity to gently remind Mom that she has "Alzheimer's". She says she knows. She has a very poor short term memory, and we see shades of the future now because there are times when my sister and I feel that Mom does not know who we are. We have a loose diagnosis of AD, but Mom has other stuff going on too. But, dementia is dementia. She has big-time vascular issues, and an aortic aneurysm growing in a spot that is inoperable due to its proximity to a previous stent. She has trouble breathing after just a short walk, and some vertebral fracturing too. The diagnosis of AD helps us clarify to agencies the urgency for financial aide and assistance. We just now after nearly a year have received the "Aid and Attendance" benefit from the Veteran's Administration. The money will help us to pay our hired caregivers and not have to worry as much about spending money that we don't have. We have been spending some money taken from a reverse mortgage and we're almost out after property taxes and a few other medical things, a tooth extraction, and a rebuilt crown, and then new eye glasses. She had macular degeneration and cataracts too. Mom will still do embroidery work, and she loves looking outside from her lift chair at her garden...and the bird feeders and bird bath...going full swing now.
She really enjoys going outside on the sneak, if you will to water the yard. I don't know why but it seems as soon as we leave for an errand or whatnot, Mom will have been outside watering. Bully for her I say.
Still has some spunk when it comes to her flowers...!
Well Joe, I think thats enough for now...gotta go and take core of some stuff...
Thank you again,"
First I say encourage here flower watering and watching. She is still in there and finds this is what she can do. Try to imagine if you can knowing that each day a little more of YOU slips away, a tiny amount of what you could due goes away. Then the process speeds up. HOW WOULD YOU FEEL? I think pretty damned pissed off and would try to hide things, not because of denial, but your own sorrow at the lost, regretting what you did to cause this (which is most likely nothing) and there is some shame with it. You are no longer the person you were, but try to be, I see that in many I talk with. I am mentally and cognitively less then I was a year aga, I even here different words in the conversations I have. I even lose who I am talking to and come back later in the conversation. I have maybe 7 years left, believe me like those that walk with me, I plan on fighting toooth and nail till it comes time to leave. Many mistake the sense of loss that we have for Denial, it isn't we weep for ourselves, because we know better than you what is happening, I may sound quite with it, trust me it is difficult to write this without crying and focusing on what I say. The email above fills my heart with gratitude that these folks are keeping the family together and working through it, They are Heros to me, because we are a handfull. Sixtuplets don't compare to us as time goes on. We will wear you down, but we still love in our hearts and souls. Remember we still have our own brand of pride in ourselves. When I started this blog I made a promise to me to tell it as it is in me and as I see it, no matter the pain caussed me or the people I piss off.If you see our side and there are others like myself who have websites and journals maybe not as cantancerus as me and myore polite and gentle, but I find not a fricken thing gentle, fun, loving, polite in this disease at all.
Thanks for your ear and being out their for me.
God Bless You and This Country of Ours!
Joe
"Hi Joe and Lynn.
Unfortunately I don't think that Mom is ready to BELEIVE that she has Alzheimer's. She is the daughter of a German farming family and is very stoic. She has never been known to share her emotions openly, and now the disease has exaberated the issue. Don't get me wrong, she is very sweet, we are so lucky that way. My sister and I both beleive that she sees herself quite differently than we do. She is 84 and was one of the "June Cleaver" type wives. We remember the frequency of the phrase "what will the neighbors think?" She retreats to what we call "the bubble" on a daily basis. The length of these visits to the unknown vary day depending on the good days/bad day thing. It is on these bad days that Mom will hardly speak at all. She goes far away and has a distant look in her eye. We occasionally have opportunity to gently remind Mom that she has "Alzheimer's". She says she knows. She has a very poor short term memory, and we see shades of the future now because there are times when my sister and I feel that Mom does not know who we are. We have a loose diagnosis of AD, but Mom has other stuff going on too. But, dementia is dementia. She has big-time vascular issues, and an aortic aneurysm growing in a spot that is inoperable due to its proximity to a previous stent. She has trouble breathing after just a short walk, and some vertebral fracturing too. The diagnosis of AD helps us clarify to agencies the urgency for financial aide and assistance. We just now after nearly a year have received the "Aid and Attendance" benefit from the Veteran's Administration. The money will help us to pay our hired caregivers and not have to worry as much about spending money that we don't have. We have been spending some money taken from a reverse mortgage and we're almost out after property taxes and a few other medical things, a tooth extraction, and a rebuilt crown, and then new eye glasses. She had macular degeneration and cataracts too. Mom will still do embroidery work, and she loves looking outside from her lift chair at her garden...and the bird feeders and bird bath...going full swing now.
She really enjoys going outside on the sneak, if you will to water the yard. I don't know why but it seems as soon as we leave for an errand or whatnot, Mom will have been outside watering. Bully for her I say.
Still has some spunk when it comes to her flowers...!
Well Joe, I think thats enough for now...gotta go and take core of some stuff...
Thank you again,"
First I say encourage here flower watering and watching. She is still in there and finds this is what she can do. Try to imagine if you can knowing that each day a little more of YOU slips away, a tiny amount of what you could due goes away. Then the process speeds up. HOW WOULD YOU FEEL? I think pretty damned pissed off and would try to hide things, not because of denial, but your own sorrow at the lost, regretting what you did to cause this (which is most likely nothing) and there is some shame with it. You are no longer the person you were, but try to be, I see that in many I talk with. I am mentally and cognitively less then I was a year aga, I even here different words in the conversations I have. I even lose who I am talking to and come back later in the conversation. I have maybe 7 years left, believe me like those that walk with me, I plan on fighting toooth and nail till it comes time to leave. Many mistake the sense of loss that we have for Denial, it isn't we weep for ourselves, because we know better than you what is happening, I may sound quite with it, trust me it is difficult to write this without crying and focusing on what I say. The email above fills my heart with gratitude that these folks are keeping the family together and working through it, They are Heros to me, because we are a handfull. Sixtuplets don't compare to us as time goes on. We will wear you down, but we still love in our hearts and souls. Remember we still have our own brand of pride in ourselves. When I started this blog I made a promise to me to tell it as it is in me and as I see it, no matter the pain caussed me or the people I piss off.If you see our side and there are others like myself who have websites and journals maybe not as cantancerus as me and myore polite and gentle, but I find not a fricken thing gentle, fun, loving, polite in this disease at all.
Thanks for your ear and being out their for me.
God Bless You and This Country of Ours!
Joe
Friday, May 09, 2008
Crossing The Line
Some of you may have read in other entries of mine of that line that those thaat live is this World of Mine cross. Itt is that point where you cease to be who and what you are and become another entity, if you do not physicallly pass on. Yes they say this is gradual and can take many years, true but sure, it can happen in a day. Here today gone tomorrow. I have over the years since joining this ever growing community of those with dementia have seen it take place just that way. One instance my wife told me of a fellow at one of the sites she works at who has been reading my blog and hopefully gainnned some insight and comfort that he was faultless. HIs mother was fine the one day and the very next (24 hours later), knew crap, nota and required suddenly 24 hour care. So many I have communicated with that suffer have had this take place with them, because I speak (this form) with their loved ones and caregiverss and they tell me of this suddeness. What say you perverers of great wisdom and knowledge, what is that "Duh". MY own life is growing shadowier, forgetting we said grace at dinner, turning on this beast, conversations in the middle of them, physically becoming a poster child for damage of the year or how to screw up your body in one simple lesson. My time is coming when ?????? but it is on its' way. I have told my family the day will come as long as I have any ability to think as who I am, that I will kiss them all and say goodbye and be gone. I believe I have the right to passon with some of me in tact and with some dignity. I refuse to have my family see me lying with my face in my food, as I have seen from working in Assisted living homes when doing computers. Looking into the trap souls of those folks through their eyes made my decision along time ago shoulod I ever be blessed with this disease. There is no cure and most likely will not be one, until they whoever they are talk to US and really learn. For their knowledge of the brain fits in the head of a pin. Bye for now until next time be good to yourselves.
God Bless You and This Country!
Joe
God Bless You and This Country!
Joe
Friday, May 02, 2008
New Technology for The Eye
Do you suffer from myopia (near-sightedness), hyperopia (long-sightedness), presbyopia, astigmatism, computer vision syndrome or cataracts? Well now that is quite a question isn't it? I am using spell checker (as you know it is something I do not do). I was approached by a site http://www.pinhole-glasess-direct.com/ to view their site and give my opinion of the site and I would presume the product. They think I have a unique writting style, poor souls. Well what follows is my view only and not an endorsement of the product, remember that.
Pinhole-glasses are glasses that have laser (precised) cut holes in them on what appears to be a non clear plastic. Could be wrong there. You need to know that these glasses are for stationary use only. Bull riding, cow punching, climbing Mt. Everest or driving the Indy 500 are out. They are made for those folks who suffer from the question I started with, which is directly from their web site. The site makes a valiant attempt at describing the conditions and how their product works. It is pretty simple and straight forward. Even I understood most of it, of course it took me a number of hours reading it to get through it. But that was so I could write this and be fair to them. On awhole I think the product sounds good and probably, if the claims are accurate, benefit people like me who have 2000 pairs of classes because their eyes are worth not a heck of alot. See I am far, near, close and every which way sighted. Blind in one eye and cannot see out of the other. So how can I type this if I cannot see, blessed with powers beyond your belief, I look at the keys while I type.
The site is easy to manuever through and not trying to sell SNAKE OIL for 19.95 + if you order right now you get twice the amount, but wait I am not through, you order in the next 10 minutes we will add these special 10 scrubbing pads, breathing mask and Dr. Watchmacall its' famous toe remedy. I would preferr the site to be more colorfull, but you see I live in a world of color, no white walls in my house buddy (they would blend in and I would walk into them).
Check the site out let them know what you think. In fact let me know. You can leave comments right on this post (the best way) or use the email form on the side, which I never publish what is said in it. I have not bought a pair, not sure I will, and if I should, I would tell you exactly what I think of them. Good, bad or otherwise.
Well my brain hurts and I have had a few bad days so I will say goodbye for the day and when I remember I will return.
God Bless You and Our Country!
Joe
Pinhole-glasses are glasses that have laser (precised) cut holes in them on what appears to be a non clear plastic. Could be wrong there. You need to know that these glasses are for stationary use only. Bull riding, cow punching, climbing Mt. Everest or driving the Indy 500 are out. They are made for those folks who suffer from the question I started with, which is directly from their web site. The site makes a valiant attempt at describing the conditions and how their product works. It is pretty simple and straight forward. Even I understood most of it, of course it took me a number of hours reading it to get through it. But that was so I could write this and be fair to them. On awhole I think the product sounds good and probably, if the claims are accurate, benefit people like me who have 2000 pairs of classes because their eyes are worth not a heck of alot. See I am far, near, close and every which way sighted. Blind in one eye and cannot see out of the other. So how can I type this if I cannot see, blessed with powers beyond your belief, I look at the keys while I type.
The site is easy to manuever through and not trying to sell SNAKE OIL for 19.95 + if you order right now you get twice the amount, but wait I am not through, you order in the next 10 minutes we will add these special 10 scrubbing pads, breathing mask and Dr. Watchmacall its' famous toe remedy. I would preferr the site to be more colorfull, but you see I live in a world of color, no white walls in my house buddy (they would blend in and I would walk into them).
Check the site out let them know what you think. In fact let me know. You can leave comments right on this post (the best way) or use the email form on the side, which I never publish what is said in it. I have not bought a pair, not sure I will, and if I should, I would tell you exactly what I think of them. Good, bad or otherwise.
Well my brain hurts and I have had a few bad days so I will say goodbye for the day and when I remember I will return.
God Bless You and Our Country!
Joe
Subscribe to:
Posts (Atom)
Posts
