Open Thread - Friday, December 2, 2016, Good Funkin' Day
But that kind of falls in line; when you think about it, James Brown was a funk minimalist. All of those parts create a sum that's larger than the individual parts.
~Charlie Hunter~
I think I have figured out the funkin' American political system.
All I know is that if congress breaks the social contract and screws us on Social Security and Medicare, it isn't going to be pretty. I have spent my prime earning years caring for Sweetie. I worked, saved and I am fully vested, so don't funk with me.
Just funkin' saying!
Sweetie is the spice that gave my life zest. It is heart breaking to see her wasting away. The week to week degeneration is quite noticeable and she seems to be teetering on the edge.
It is enough to get a guy down.
Both of us are struggling. Sweetie's loss of speech and motor control, makes things really tough. Even her facial expression is gone. We can look into one another's eyes, but even that is becoming nondescript.
I have accepted the inevitable and slog through each day doing the best I can. Feelings of inadequacy and self doubt are unavoidable. It is such a helpless feeling to watch and not be able to help. I know, I am doing the right thing and I am proud of myself, but it does not ameliorate the pain in my heart.
Have a great funkin' weekend! The thread is open.
Comments
Well, this is just further grist for the German right-wing mill
http://www.bbc.com/news/world-europe-38056243
http://www.zeit.de/gesellschaft/zeitgeschehen/2016-11/wuppertal-scharia-...
We can only project and guess how each of us would feel
with ALS. Poor Sweetie. I have even less outside control of my mother, now diagnosed with Lewy Body Dementia. SHe is in a nursing home, recently Dxed and all meds changed. I cannot even recognize her voice; she can still speak, but most is incomprehensible. No idea if the nursing home is further drugging her down. But listening to someone that 2 months ago could be understood, although she lived with her dead parents in her house, is shocking now. But she is nearly 97. More understandable that someone of that age is going to die.
Blessings to you both, and funk December!
Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.
Medicine
I have ratcheted back the meds and only give Sweetie things that comfort her. I just manage the psuedobulbar and pain. There comes a time when we know the stone has been cast.
My brother endured mom's dementia. I think I underestimated what he went through. Sweetie's sister and BIL are in the midst of the transition with her mom. They are handling the situation with appropriate grace and dignity.
The experience has changed my outlook. I am totally committed to frugal living and resisting capitalist indoctrination. I think my biggest challenge will be finding a local peer group.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
You still have us! But I resisted a local peer group after
figuring many would be shocked widowers looking for a cook/cleaner, things they never did or thought about. You are beyond that state. I did have talks with the grief counselors for a year after, a freebie from hospice. It did not really help me long-term. To each their own. No problems. LOL. Still scary.
I still have not "gotten over it". Those who think that have never been in the situation, or are in complete denial. I still have great anger with him, disappointment, sadness and relief. Up and down. I have not talked to anyone who feels quite like I do, so I can't reveal how I feel. Especially not with our adult offspring, getting closer with daughter who he battled with and she was there to watch his dying. And may have become a nurse because of that. Privacy, and boundaries.
There are acquaintances who were shocked that we had no public funeral or "celebration of life" for him. He had divorced himself from many long-term friends that were long-term but then they all cut him out of the joint business. I respected his anger. Eff them. I still talk to a few of his friends who then became mine by osmosis.
See? For me, over 6 years out, I am still on simmer. It's okay.
Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.
Peer group
I was thinking more along the lines of progressive, cannabis tolerant, green, not obsessed with status/money, music loving, tolerant, ... as opposed to other widow/widowers. I need somebody to break bread, laugh, raise hell and be available when there is a task requiring more than one person.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
In a word, hippies.
That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --
DFHs
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Good Day, Tim
I really appreciate your sharing your terrible journey with us all here at C99. Speaking for myself, I have learned a lot about both living and dying and how to handle both from your posts. You have set a standard that we all should aspire to if we are faced with a similar situation. No one knows his or her true inner strength until faced with a challenge like you and your sweetie are dealing with. You both have handled this journey with grace and dignity. And your love for one another has shown through all your posts here.
I watched my own mother struggle trying to care for my father when he was suffering from Alzheimer's and they were both in their 80's at the time. Mom told me that she never thought she could do the things she had to do to care for him, but she somehow found the strength. I see that same strength in your posts here.
I am not particularly religious, but I do pray that this horrible ordeal will end soon for both of you. Then I hope you will make some time for yourself to decompress. Sometimes it takes a very tragic event for us to find out what we really want and need in life. It sounds like you are moving in that direction too. May many blessings come your way in the future.
(((gentle hugs))) to both you and your sweetie.
Do I hear the sound of guillotines being constructed?
“Those who make peaceful revolution impossible will make violent revolution inevitable." ~ President John F. Kennedy
Hello GG
Finally some rain!
Nor am I particularly religious. I am motivated by the concepts of doing right and being civilized. I imagine that pre-industrial revolution ALS patients were likely left to die early after onset. I suspect the incident rate was much lower since man had not deployed neurotoxins.
Strength is definitely summoned from within, not a measurement of force. Some days I am stronger than others. The house is starting to get ragged and I have been cooking less.
I have anxiety that one of these mornings either Sweetie will be comatose or dead. She is a shell of her former self, but she still gives warm hugs.
Joe has some Magic Sam going over at EB.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Good morning, Tim.
I love Hunter. Thanks for "all that jazz."
Sweetie and you are both treasures. I am so sorry that both of you have had to deal with so much.
Maybe even looking into each other's eyes can be problematic, but you can hold her hand. You can also tell her you love her, even if that is evident from your actions, and tell her you know she loves you. It's something.
I suppose everyone experiences self-doubt and feelings of inadequacy, some more often than others. If it helps with that any, you are a mega-hero in my eyes and I suspect in the eyes of most of us.
Do you journal at all?
I'd love to think of something funny to say, just to give you a laugh, but I can't manage even that. Talk about feeling inadequate to help! So, I'll leave it to a classic. (One liners won't require much of an attention span.) I haven't watched. Hope it's funny!
[video:https://www.youtube.com/watch?v=7TG-2f8nAYc]
Laughing
Oh we still laugh, I was and am basically a jagoff and button pusher. Several of Sweetie's social worker peer group have commented on how I can still get her to laugh.
I embrace Sweetie everyday. The toughest part is her inability to reciprocate. I know my head spins, so I can only imagine what it it like to be lucid, but trapped in a non-functional body.
I saw The Charlie Hunter Trio, a few years back, and the guy beside me asked, "Where is the bass player?". He didn't see what was going on until I guided him through watching the thumb and fingers on his right hand. You know, there are many people that can look right at something and not recognize what is going on.
Not laughing.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
that's me looking at what I read here every day
I realize that I always turn to be silly, when things are over my head to handle. At least sometimes it works and those people (you know those...) laugh with me. It's all kabuki on all sides. And painful inside.
https://www.euronews.com/live
Hey Mimi
Nice to see you. Keep on fighting.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
thx, NCTim, you too /nt
https://www.euronews.com/live
Journal
I do not. Neither did/does Sweetie. I don't even Facebook, although Sweetie did. The open platform would inevitably lead me to tell someone to funk off.
Off and on, I have thought of writing. I have had some really great ideas, thought I should write them down, but usually either raid the refrigerator or sleep it off.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Journal
Journaling is the opposite of facebooking. Journaling is just for you and for whoever you choose to read to, if anyone. Or you could record your journal entries. It might be an outlet, both in general and for things you don't want to say aloud to anyone else.
I am glad you can laugh and make sweetie laugh.
Facebook, I don't want to use it, yesterday I was
frustrated, because a discussion between Scheer and Hedges was only broadcasted on truthdig's facebook page, at least on one page on facebook and it asked me to log in. I resisted.
Just wished these news sites could broadcast outside of facebook. I just boycott it, because I have seen so much pain conversations on facebook have done to people I know. It's hard to resist using it. But I think much of the resistance will have to come against those, who code for corporations' desire to exploit its users.
https://www.euronews.com/live
peace to you both
Thanks for doing your part!
“Until justice rolls down like water and righteousness like a mighty stream.”
Thanks LO
I don't think many people realize the depth of Jimi's thoughts, or that he was basically a introvert. There is a David Frost interview, not on YouTube, that makes it abundantly clear.
Jimi is a regular contributor around my house. Thing1, 26M, and I were just talking about him last night.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Good morning, my cyberfriend. :-)
A dear friend fully explained ALS to me over lunch yesterday. She just lost a dear one to it. I was thinking of you and Sweetie when I queried her. What an awful disease. It reminded me of dementia, only quicker and more painful. You are a saint and an inspiration to me on here. Plus, I love/dig your tunes!!
Keep writing. Psychology has used it as a wonderful therapy for a very long time. Why? Cos it works!! The folks on here will help you find that group of friends/peer group you were asking about. I will now close with a few pearls of wisdom from the great Chaka Khan:
You got the Love
Give me the Strength
To keep on Livin'
Yeah!!
Rec'd!!
Inner and Outer Space: the Final Frontiers.
Hey OBF
I like being called friend even with the cyber prefix. You are welcome to stop by, listen to tunes and catch a buzz anytime. I have been contemplating selling my house and moving back to Da Burgh. I know there are people there that I could call and say, "Great music tonight, I'll pick you up".
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Pittsburgh is a physically beautiful city. Are you and Sweetie
from there? Looking down from one of the steep foothilled vantage points to where the 3 rivers converge is beyond awesome. If it feels good, do it, my friend. Enuff said!
Inner and Outer Space: the Final Frontiers.
I love those green hills
Sweetie grew up in the south hills and I grew up in the Allegheny River Valley. We met at The University of Pittsburgh. Well, technically we met at a college bar near The University of Pittsburgh. We moved south when the kids were 1st and 4th grade. The older child considers himself from Pittsburgh. My daughter considers herself a southern girl.
I am thinking of moving into one of the city neighborhoods. I think I can downsize, pocket about 40% of my home equity and still live in my own home. I have to live in my own home. Between the electric guitars and fumes some neighbors would not appreciate me.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
something pinky and people-ish - Iraq Tribunal
[video:https://youtu.be/LxNcalgTsYY]
https://www.euronews.com/live
And Twitter just started "FakeNewsing" links.
Not kidding, first time I've ever seen it, but they actually are starting to identify sites on the "Fake News" list with "WARNINGS!"
Yep, even when they're reposting stuff deleted from places like "The Washington Post" twitter wants me to take extra time to "Ignore this warning and continue"
What was the one that prompted this? Oh just a little article about Obama sponsoring the idea that women should be drafted. Quietly...
Not that I'm complaining mind you. Fastest way to end wars is to demand those who don't feel the burden of war FEEL it. Of course, judging from Obama's ACTIONS, he just wants more grist for the mill.
I do not pretend I know what I do not know.
Confirmation
... of my aversion to social media.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Twitter is the cool-aid, 140 characters at a time.
That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --
Good morning, Tim~~~
December is coming in like a lion, here in New Mexico. Cold as heck yesterday and snowing today. What will tomorrow bring?
As much as I hate to call it lucky, my husband died suddenly of a heart attack. All I kept thinking about was how much he would have hated to live half a life - or less - and how much I would have hated to see him that way. In that vein - I admire and respect your courage and tenacity and the love you have for sweetie. I've said it before to you - she is one lucky woman to have you by her side. I know you are lucky to have her, too - even during this challenging time.
Sending you strength to carry on. Have a beautiful week!
"The “jumpers” reminded us that one day we will all face only one choice and that is how we will die, not how we will live." Chris Hedges on 9/11
Thanks
The cold is rolling this way. Thanks for the strength transfer. I have been struggling with a dour outlook. Lack of sleep and nagging injuries make it tough to shake the funk. Things are much better when music is playing. I use full random so there is always some gem coming to the surface. Playing right now, sounds good turned up ->
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Hang in there, man.
Here's a favorite of mine from Human Sexual Response's last album. Lost count of how many shows we did with them back in Boston in the early 80s. Reading of your struggles and pain makes me think of Larry Bangor's voice in this recording... "In A Roman Mood" is their most introspective work, and worth a listen when you get a chance. The tear tracks rolling down the horse's face are definitely telling.
We are all pulling for you, as much as we possibly can. I can't imagine the anguish.
Hey compadre. Gracias. What to say? Keep on keepin' on, what
else is there. "Mister, you're a better man than I". Go outside and holler once in a while.
That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --
Heh
I got the Oak Tree cut up. It was at least 70 years old.
I do holler. The Jazzfest Krewe has a signature holler. We can find one another in any crowd.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Best to you and Sweetie. I'm closely watching
what's being comtemplated/negotiated with Medicare. I could be wrong, but it sounds as though nothing they are planning could impact Sweetie's medical care.
OTOH, I regularly hear the press availabilities of the Leadership of both parties (XM and C-Span carry them), and Ryan mentioned earlier this week that he hasn't spoken to DT about Medicare reform since the election. (Sure!) Of course, he claims that Medicare is 'going broke'--so, it will definitely have to be modernized for younger folks (like himself). He is truly a scary dude--more capable of manipulating the public, than Boehner. (IMO)
Bottom line, I'm watching Medicare and Social Security 'reform' so that we can decide what to do. If the Bowles-Simpson proposal is rammed through, Mr M would stand to lose up to 44-46% of his monthly benefit, according to Social Security Works. (I posted their table a couple of years ago.)
We don't intend to let that happen, since that would be considerably more than the penalty for filing prior to FRA--or, a penalty of a maximum of 25% or 30% under current law, depending upon one's birth year.
Mollie
“I believe in the redemptive powers of a dog’s love. It is in recognition of each dog’s potential to lift the human spirit and therefore– to change society for the better, that I fight to make sure every street dog has its day.”
--Stasha Wong, Secretary, Save Our Street Dogs (SOSD)
The SOSD Fantastic Four
Available For Adoption, Save Our Street Dogs, SOSD
Taro
Everyone thinks they have the best dog, and none of them are wrong.
Thanks M
I don't think Sweetie will see 2018. I am more concerned about how I will manage the post golden years. Why is it that I think they will also change the tax code to take my 401K savings? OBTW, watch out mortgage interest deduction deduction. The kleptocracy race is on!
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -