Open Thread - Friday, January 27, 2017
If the people we love are stolen from us, the way to have them live on is to never stop loving them.
~ James O’Barr ~
Almost forty years ago, I was a rambunctious young man, living life to its fullest, when I met my Sweetie.
Now, I sit here, despondent and exhausted, while Sweetie is comatose and dying.
We had been working on getting a care giver respite placement. The home hospice people wanted Sweetie placed in the hospice facility, rather than a nursing home, because of her care paradigm. Tuesday, January 17, the hospice social worker called to tell us there was a bed available and to bring Sweetie Wednesday. Leading up to the respite, Sweetie had not had a bowel movement for too long. I had been giving her medications to stimulate BM for several days. I let the hospice people know what was going on and they decided to use a suppository. Of all the things I have had to just grin and bear, a suppository and the aftermath are not one of them. I was fine with not being part of that.
More interesting, the hospice would draw out the stomach contents prior to tube feeding. The objective was to check on the volume in the stomach. Previously, no one had mentioned this practice. It made sense, but neither the surgeon, who did the feeding tube, nor the ALS clinic dietitian had mentioned verifying the stomach contents. The hospice got Sweeties digestive system cleared and resumed tube feeding, including medications.
I had noticed Sweetie had heightened psuedobulbar and hospice determined that Sweetie's digestive system had shut down. They would give her Ensure and when they drew out the stomach contents the previous feeding was just sitting there. Her body had stopped absorbing medications, explaining the heightened PBA. Last Friday, nutrition was stopped and hospice changed Sweetie to subdural medications. Saturday, the hospice doctor and I had "the talk". She suspected Sweetie has pneumonia. I agreed to change Sweetie from respite to in patient.
Monday was exceedingly difficult. As soon as I arrived and saw her, I knew she was in distress. She was weak and barely able to text but I knew what she wanted. She wanted to come home. I had to tell her she could not come home and that she is near death.
Tuesday, Sweetie had a step change in respiration. It was a horrifying experience. She was conscious, but fully consumed with struggling to breath. The sound of the struggle was awful. She was breathing over forty times a minute and fighting for every breath. There were around ten doctors and nurses frantically working on sedation and breathing. Over the course of 3-4 hours she settled into peaceful breathing and went to sleep, never to wake.
Wednesday, I took recharged music machines, and laid beside her holding her. I left the music playing and came home to sleep.
I have been having aberrations. I hear her voice. I see her face. I am haunted by the vision of her when I had to tell her she could not come home.
It is Thursday morning and I dread the coming days.
Thanks for listening/reading.
May peace be with you.
Comments
Ooops ...
I did a proof read and still didn't catch the obvious stuff.
Sweetie is comatose. The coma is largely induced, but I think without sedation she would have wore out a couple of days ago. Last night, I was lying with my head on her chest and could hear the pneumonia.
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 -
hugs. I will be thinking of you both.
You will get through, I went through that voice phase. Now, I have a haunt. Letters that I could not find on my dining table, recently piled high with Christmas sale items and mail, mostly junk, that I have had trouble dealing with between gall bladder attacks and subsequent recuperations are suddenly appearing on the floor, unshredded by dog, ones that need dealing with. One per day. Two days in a row. I may be getting another attack. Sleepless night. If another letter appears, I am downstairs, as is dog (she is sleeping hard on the family room sofa. Different floor. And my one wonky eye: had to cancel appointment with ophtho because I was throwing up every hour. Also too sick to see PCP. A bad week. Your is worse.
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.
never believed in visitations until after my mother died
But that strong woman has come back now on so many occasions, I am no longer a skeptic. My mother had an obsession with pennies. She would stump around with her cane, eyes on the ground, and could spot a penny a mile away. She would then immediately demand that I pick it up and give it to her, and would sing this dumb song about "see a penny pick it up, all day long you'll have good luck" in a vey loud voice coz she was deaf. It was so bad, she didn't care if that penny was sitting under a wad of chewing gum or on top of a pile of dog poop, that all of us kids became experts at seeing pennies first and diverting her attention: Oh look! A bald eagle The week after she died, I started finding pennies where pennies should never be. Way off the trail in an area I hiked in, eg. So I said ok Mom, if you're here, show me a sign. I went into my laundry room, pulled open the dryer door and two shiny bright pennies flew out of the dryer and hit me on the leg. Uh oh. What do you want, Mom? No answer. But weeks later while cleaning out her house, and she was a real hoarder like you see on TV so it was extremely unpleasant, my niece and I found my mother's wedding ring in a plastic bag with dollar off coupons from the 1970s. Tiny chip of a diamond, but hers. My niece asked if she could have the ring. My mother adored my niece, but I thought, hum, I'm the daughter, I want it, but didn't want any arguments so said: let's decide later. That night I went back to the motel where I was staying. I was covered with dust and dirt and mildew. I jumped into the shower and something hit me right on the forehead. Pisssed! I was so tired and here I was in a damn motel with the shower head breaking. I looked for the piece that had hit me and found in the tub, not a piece of the shower head but, of course, a penny. I called my niece and told her she could have the ring, that I knew Grammy wanted her to have it. Since then I found out Mom did this to my niece too, putting pennies here and there. Now no one in my family would ever think of leaving a penny on the ground coz we're sure she'll be back with something to say about that. We're those weird people who say "could you move your foot please. I want to get that penny."
I know
Sweetie may be in a coma, but I know she is aware of my presence. Mind power is a little understood phenomenon. During early December, I had warned my children that the January time period was perilous. Sweetie had a grandmother who lingered comatose until we, the progenitors of the only great grandchildren, traveled to Pittsburgh and visited for Christmas. She died the next day.
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 -
RL
You could use a distraction.
I am an innately predisposed fighter, so I don't worry too much about getting on with it.
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 -
Illness is a distraction
My mother died Jan6, nearly 97. I had been hoping... And then it hit me hard. It may be her haunt here, 620 miles away. Coins on the floor, too. She was blind but did not know...
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.
And peace be with you.
That brought me to tears.
Hugs to you.
Me too
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 -
Thinking of you
but know you did the right thing, you have always done the right thing.
Funkin' A
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 -
So sorry for your loss
and the difficult lead up to it.
The sense of relief is tangible
There is profound sadness, but also an inner warmness that the suffering and burden are lifting.
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 -
I also get the anticipation of suffering relief
Suspect it happens in all extended deaths. Different from shock of sudden death, which I have also been around. Don't let remorse enter. It has always been there.
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.
Your courage is inspiring
and your description of the fear of loss at the same time as relief that the burden of suffering is lifting is so helpful. It's something many of us are going to encounter one day. i will always think of your courage when that moment comes for me.
To thine own self be true.
Well
It is not something I conjured up. It came to me. It is like a huge weight is being lifted. I am thankful for the feeling, it makes it so much easier to endure the sense of loss.
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 -
I got
nothing.
Life is hard. Forty years is a good run.
Hold onto the love.
peace
Ya got to be a Spirit, cain't be no Ghost. . .
Explain Bldg #7. . . still waiting. . .
If you’ve ever wondered whether you would have complied in 1930’s Germany,
Now you know. . .
sign at protest march
I feel for all the people who will struggle to approach me
There really is nothing to say.
One of Sweetie's coworkers came by every Thursday afternoon. After the doctor and I had "the talk", I let her know that Sweetie was dying, to give her a chance to see Sweetie. She spread the news among the other coworkers and Tuesday there was a parade of people. I ended up restricting visitors to immediate family. First, to give Sweetie some peace and second, to give my children and I some space. The moral of the story is listening is plenty. Listening is one of the greatest demonstrations of empathy and respect.
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 -
I will just leave a little bit of Otis Clay here
[video:https://m.youtube.com/watch?v=qQHakjDL1Ms]
Otis sang about my Sweetie
She spent her life improving children's lives. I was along for the ride. Packing weekend meals for Backpack Buddies, moving donated furniture for hiding battered women and their children, Special Olympics, playing basketball at the orphanage. The YMCA We Build People campaign, the gang task force, ... Sweetie was always helping children.
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 -
She's my kind of people, wish I had known her.
A life well lived.
Another thing
Sweetie has a T-Shirt for that Beale Street bar. We celebrated #25 in Memphis.
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 -
I had two adult children, his sister, my sister, a cousin
All show up before or after. The AA cuz got irritating. I think there were talks with a few co-workers before he gained comatose status. By then, I was a wreck. SO much whirling around me, as the wife of him. Anger with no memorial service by other "friends". I knew he was distrusting and angry with many. Why put on a show?
His body was cremated, easy in NY for a widow to order. Daughter and I went to funeral home, operator wrote the obit, odd word construction within, but short and sweet, as was the obit I wrote for my mother 6 months previous. I know state laws differ. My mother had pre-paid cremation and a memorial service. I still had to get a notarized permission slip for it to occur, 5-6 days later. Done. Cremains may wait, discussions with mother as to where. I waited 4 years.
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.
Good morning, Dearest Tim~~~
As I sit here, in tears for you and what you are having to endure, I think of the strength you are having to draw on to just get up each day; the strength you are having to draw on just to move through each day. I send you positive and loving energy as you move through this most difficult time in your life. You WILL have the love for sweetie in your heart the remainder of your days, which will sustain you fir the rest of your life.
Remember to always tell your story about sweetie, it will keep her alive in you and contribute to your healing, every day. Although it has been 30 years since I lost my Tom, and 22 years I've been married to RAndy, I'm still healing daily from the loss of my Tom and am fortunate to have a partner in RA who supports me in this. It happened to me and will always be a part of me. This is happening to you and will always be a part of you. Embrace it.
In spite if it all, see the beauty of the day. Peace, my friend.
"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
At the moment
Thanks RA.
I have had some time to contemplate the future. The picture isn't clear, but I know what I want. First, I have to get through the death bureaucracy. I did scurry to secure a room and resume participating in the annual New Orleans Jazzfest pilgrimage. I have been sequestered for a long time and need to let loose.
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 -
Great to hear.
Celebrate life; celebrate sweetie; celebrate NCTim.
"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
Thank you, Tim
Thank you for sharing this difficult journey that you and Sweetie have been enduring for the last two or so years. You both have taught us about living and even more so, about loving. You done so with naked honesty about how terrible this disease is for both your wife, who suffers from it, and you as her devoted caregiver. You have done so with grace and dignity. May we all be so fortunate to have experienced such a deep love and devotion to and from a life partner.
Thank you for providing the hope of the human spirit of love and kindness as an example to us all. May you both find peace in these coming days. Much love to you and your Sweetie as this journey nears its end.
Do I hear the sound of guillotines being constructed?
“Those who make peaceful revolution impossible will make violent revolution inevitable." ~ President John F. Kennedy
Thank you
You have been a good friend. I know I did my best. The past week I have been bombarded with decisions and situation management. I still possess my analytical abilities and ability to operate under stress. I spent some time letting the kids know that I have no expectations for how they handle their mother passing and not to allow other people to set expectations for them. There is no expectation to vigil 24-7, nor emphasis on being there for her death. They are to do whatever they need to do to be at peace.
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're terrific father as well as a
wonderful husband. Amazing Sweetie chose well when she picked you. I wish all of you peace.
Are you kidding?
I wasn't going to let her get away.
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 -
@NCTim IMHO,you have handled
IMHO,you have handled this challenge that life has thrown at you in an exemplary way. My mother cared for my father for ten of the twelve years that he suffered from Alzheimer's. She was forced to put him into a locally owned nursing home when she was no longer physically able to care for him. She felt guilty about doing that, but my sister and I assured her that it was the best thing she could do. For all of us, there comes a time when we must let go. Like you and your Sweetie, they had a life long love affair.
You have done all you can and when the time comes, I hope you will be able to move forward knowing you gave Sweetie your full love and devotion, even in sickness.
Do I hear the sound of guillotines being constructed?
“Those who make peaceful revolution impossible will make violent revolution inevitable." ~ President John F. Kennedy
May peace be with you and Sweety soon -
I try to ask God for giving it to you both. May be he will listen.
https://www.euronews.com/live
Thank you
I think the concept, existence of God or non-existence of God, or shall we say fear of the unknown, harbors the fear of death. I can tell you without any doubt that death is better than what Sweetie has been enduring.
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 -
She will always be with you in your memories and your heart.
Having helped more than my fair share of people to die, you did a great and loving job. Sweetie is lucky to have you.
"Religion is what keeps the poor from murdering the rich."--Napoleon
Thanks DK
I know, you know the sense of relief.
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 -
<3 <3 <3
"Religion is what keeps the poor from murdering the rich."--Napoleon
You have been the embodiment of the word
'Steadfast'. Now your labors have ended, but your love will not.
The only problem was
the stiff headwind. It was really tiring. It will be awhile before I can sleep normal.
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 -
My father's younger brother passed away yesterday. He was close
to 90 y.o. Dad was the oldest of 3 brothers. All 3 were very close. My father died in 1969 after a fierce 5-year battle with stomach cancer. He was 41. His 2 brothers were devastated, but they were there for my mother, sister and me. I feel blue today. I guess getting old teaches that losing loved ones hurts worse than anything else. One knows it's coming, but that doesn't lessen the pain. My Dad's youngest brother died early last November from complications of old age. Please know you are NOT alone, my educated soul (fine) music friend!
We are right here with you. Glad your Sweetie is in Hospice. They are the very best!! Rec'd!!
Inner and Outer Space: the Final Frontiers.
Climb on board
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 -
Peace to you and Sweetie, Tim.
Thanks Big Guy
Years ago, she broke her patella, playing hoops at the orphanage. Her nickname was Big Red. She was more like playing against Barkley than Kareem.
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 -
So incredibly sad for you, Tim-
I can't imagine the pain.
Godspeed, Sweetie...
Go do the jazzfest up right, and lose yourself in the tunes for a little while. That can be some of the best medicine: just as in your avatar, New Orleans jazz should always be played with a tear in the eye. All the best...
Once upon a time
I was tempted to try to pull off a jazz funeral. I have settled on quick service, here. A short memorial service for our friends and associates of the last 17 years. Then up to Pittsburgh and a small service for siblings and Sweetie's mom. Then invite the Burgh network to The Church for a wake. look at link
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 -
Oh, now that is
full-on *awesome*. Wish I could be there to hoist one with ya...
When hospice said a while back that if you didn't
accept help then that you wouldn't get it later, I was worried. But they came through for you and Sweetie when you needed them most. I'm so glad that they can ease her passing, a relief for both of you.
"The object of persecution is persecution. The object of torture is torture. The object of power is power. Now do you begin to understand me?" ~Orwell, "1984"
@Lily O Lady Comment above about
Comment above about analytical skills, situational management and operating under stress. I have a knock for controlling situations. I am sure other people find me quirky and have trouble following along. They rarely realize that I am just keeping them off balance and leading them to my objective. Plus treating people with dignity and courtesy. I could not imagine the strength required to be a hospice worker.
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 on good buddy...
keep your hand upon the throttle.
Thing2 called
To tell me Jazzfest lineup was announced. I think she and boyfriend may join me. Widespread Panic, who could be decisive for boyfriend. More importantly, Dale Watson and The Lonestars!
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 -
Heeah!
Wishing strength and peace to you
and your children. I can identify with the loss of a parent at a young age; it is wonderful that you are so aware/supportive of your children's need to grieve in their own way. It can make all the difference in the world.
My favorite Aunt went into a coma following brain surgery, and died peacefully in her sleep. I wish your Sweetie comfort and relief in the hours and days to come.
Take care, Tim.
Mollie
"If there are no dogs in Heaven, then when I die I want to go where they went."--Will Rogers
Everyone thinks they have the best dog, and none of them are wrong.
Thanks Mollie
The whole time I was caring for Sweetie, music helped me. Sometimes, I would get agitated and realize there was no music playing. I would turn on music and no more Tasmanian Devil. I have been leaving music for Sweetie because I know it soothes her. One of the nurses is a music afficiando, noticed The New Mastersounds playing and said she had to go look who was playing some other things that wiggled out of the speaker.
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 -
Your courage in sharing your travels with Sweetie is
amazing and I think we are the better for your story.
Hopefully you know that those of us reading and responding are walking with you.
Relief is understandable and welcome for both of you. We don't do a particularly good job at the end of life. Your decisions and the Hospice group are the best there is.
Music is the balm, the joy, the sadness, the strength and what can help us find and feel all of those and more.
Sending love and light.....
You may choose to look the other way, but you can never say again you did not know. ~ William Wiberforce
If you can donate, please! POP Money is available for bank-to-bank transfers. Email JtC to make a monthly donation.
Like Forrest Gump
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 -
feel so unhelpful
sending out positive thoughts to you and Sweetie. Life itself is so confusing.
It's like I was saying above
There isn't anything anyone can say or do. As far as life being confusing, I am more and more convinced Camus had it right.
But then, isn't the question really, "What is normal?". I am convinced that life is not confusing. We are confused with life. We let other people, the media, the education system, pop culture, television, yadda yadda and blah blah blah define our reality and set expectations, then we are miserable because cars, money, fat, ED, PMS, ADD, ... I will be defining myself. Happiness will be at my pace and on my terms. Put another way, a gentle gait with goals like play more guitar or grow a better garden.
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 -
My deep sympathies, Tim.
I admire your dignity and fortitude, and have respect for the love between you and Sweetie.
"If I should ever die, God forbid, let this be my epitaph:
THE ONLY PROOF HE NEEDED
FOR THE EXISTENCE OF GOD
WAS MUSIC"
- Kurt Vonnegut
Thanks Mark
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 -
Hi Tim.
What a great loss for you and all whose lives Sweetie touched. I wish you great comfort in your love.
Because I could not stop for Death
Emily Dickenson
Because I could not stop for Death –
He kindly stopped for me –
The Carriage held but just Ourselves –
And Immortality.
We slowly drove – He knew no haste
And I had put away
My labor and my leisure too,
For His Civility –
We passed the School, where Children strove
At Recess – in the Ring –
We passed the Fields of Gazing Grain –
We passed the Setting Sun –
Or rather – He passed Us –
The Dews drew quivering and Chill –
For only Gossamer, my Gown –
My Tippet – only Tulle –
We paused before a House that seemed
A Swelling of the Ground –
The Roof was scarcely visible –
The Cornice – in the Ground –
Since then – 'tis Centuries – and yet
Feels shorter than the Day
I first surmised the Horses' Heads
Were toward Eternity –
Thanks JB
I think I should get some sleep the text is starting to dance.
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 with some Nina Simone
[video:https://m.youtube.com/watch?v=oHs98TEYecM]
There never are words
There never are words sufficient to offer comfort, but I send many hugs and hopes for a peaceful and unknowing release for your Sweetie...
Psychopathy is not a political position, whether labeled 'conservatism', 'centrism' or 'left'.
A tin labeled 'coffee' may be a can of worms or pathology identified by a lack of empathy/willingness to harm others to achieve personal desires.