Your Dying Spouse 229 - A Future I Won't Share

So, we're voting on Tuesday...two days from now, as I write this.

Unexpectedly, I was able to vote; Barbara very gingerly drove me to the nearby Early Voting Site, and I cast what I fear might be my last ballot. (Though the Almighty has kept me along way past my puzzed doctor's prognostications, so who's to say?)

At the moment I'm hurting bad, and in a philosophical mood, so I'll ask you to consider this question, if you haven't voted yet. I love this country, and I care about its future, whether I'm here or not.

What kind of country to you want?

This isn't about emails or foundations or crude remarks or Twitter-baiting. This is about values.

In the last few years, I think some things have gone terribly wrong. In no particular order, here's what really bothers me.

• It's OK to call for the killing of police, but not OK to support them.
• It's OK to disrespect veterans by 'taking a knee' during the national Anthem, and it's OK to set an example for ignorant high-school and college kids to follow because it's 'cool'.
• You can't freely practice your religion; in public service you can be fired for having a Bible or Qu'ran on your desk. If you're in business you have to serve everyone; a Jewish baker can't refuse baking  cake for a Nazi who wants to celebrate the Holocaust.
• Veterans die while waiting for VA medical appointments, while the head of that agency compares the lines to Disneyland...and is not reprimanded. Meanwhile, the VA spends hundreds of thousands of dollars on public art.
• Bullying is rampant, and the rights of the bullies to free speech are the priority of protection.
• Family pets offered 'free to a good home' on Craigslist are often acquired by those who would torture them to death, and there is no accountability.
• Adoptions are approved based on race rather than the child's best interests
• Our staunchest ally in the Middle East, israel, has been repeatedly criticized and humiliated by our current regime. I hesitate to call it a 'government'.
• Drug trafficking and use is rampant, yet the current regime is more interested in providing sex-change operations for those who wish to be another gender than in actively combating this life-destroying scourge.
• Pornography riles the Internet, and is invading our homes (witness 'HBO's new production 'Westworld'). It's protected, but Christian, Jewish, Muslim, and Hindu speech are not. 
• A current Supreme Court Justice, Justice Breyer, does not believe that the Second Amendment confers upon one the right to use a firearm for self defense in one's own home.

I could write more, but this stuff's depressing.

Do you want this? Do you approve of the direction we're going?

If not, please consider the above, and more, when you vote.

I won't be here. Your kids will be.

This isn't about personality or temperament or trustworthiness or experience.

This is an election for our country's soul.

Much to my surprise, I decided to participate in a '31 Days' blogging exercise; rather than interrupt the flow of this post, I have another blog established, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Ariel Sharon) and a short commentary.

And now that October's over...I'm going to keep it going.  I hope you'll join me.

Marley update...he's probably going to be moved to a sanctuary, and Bay County will revise their 'dangerous dog' codes.

WE ARE MAKING A DIFFERENCE!

He's up over 200,000 signatures, but PLEASE keep the pressure on. If you haven't signed, please do! Please click o his name in the paragraph below.

If you have a moment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.

Your Dying Spouse 228 - Strength For The Journey {FMF}

We're here for Five Minute Friday, the timed, keyword-driven writing challenge hosted by the infinitely patient Kate Motaung.

But first, would you like to meet Barbara? She's the featured employee in her company newsletter, and you can read about her, in her own words, here.

The word this week is JOURNEY. Kate was gracious enough to let me know a bit ahead of time (I am writing on Thursday afternoon, Nov. 3); I doubt I will be well enough to do more than post tonight, but I will try.

So here goes...

Talk about a bad trip.

My career is gone, and my body's gone spastic from pain. Most of the time I move, and talk, like I have cerebral palsy. And Barb lately let me know that the doctor told her that my pain level, on a consistent basis, is equivalent to childbirth. I have assisted at births - but I did not know this.

And the past few months have been an avalanche of bad stuff, culminating in the news that it's going to take another year - at least - to get Social Security Disability. If I do. (I'm 3-1/2 years into the process.)

The other day I heard a TV preacher (who shall remain nameless, because I think he's an idiot) ranting about how with enough faith we can handle serpents and cast out demons and heal ourselves.

Sure, it's all in the Bible. But it's taken out of context, and applied to an audience that, frankly, he's trying to prime to give him money.

It's not real to me. No way.

The real strength for my journey does not come from Scripture cherry-picked for a feel-good and Hallelujah! response. It comes from the Passion of the Christ.

My pain is a duty; the words I can leave with you, to whatever benefit they leave, are its fulfillment.

In the Garden, Jesus accepted His duty, and in that acceptance, that pivotal moment, we all found Grace.

Duty carries grace in its hands.

That's why I'll keep going. That's why I won't quit.

Though I will need frequent bathroom breaks. As I said before, incontinence sucks.


Much to my surprise, I decided to participate in a '31 Days' blogging exercise; rather than interrupt the flow of this post, I have another blog established, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Ariel Sharon) and a short commentary.

And now that October's over...I'm going to keep it going.  I hope you'll join me.

Marley update...he's probably going to be moved to a sanctuary, and Bay County will revise their 'dangerous dog' codes.

WE ARE MAKING A DIFFERENCE!

He's up over 200,000 signatures, but PLEASE keep the pressure on. If you haven't signed, please do! Please click o his name in the paragraph below.

If you have a moment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.

Your Dying Spouse 227 - Addicted

We're linked with Messy Marriage's From Messes To Messages, a compendium of really good marriage resources. Please visit!

First - my wife is the featured employee in her company's newsletter. If you'd like to learn about this remarkable lady, please click here. (The company for which she works, Southwest Re, offers reinsurance for cars, RVs, and a whole lot of other things. To learn more about them, please visit their website. It's a great company, and Barbara has found a home there.)

Now, on to addiction.

No one wants to be an addict, dear Caregiver, but if your terminally ill husband or wife has been on narcotic pain meds for any period of time, chances are that you are dealing with exactly that.

Please note that I am neither a doctor nor a pharmacologist nor a psychologist. I'm just a dude who's gone through the cycle of physical addiction, several times.

The cause is well-understood - one takes pain meds to control pain (no, duh?) and as the body gets used to the chemical changes they impart (blocking the pain receptors) the effect lessens. Thus, the need for a higher dosage.

And, obviously, as the illness takes its toll, pain gets worse, and dosage has to be increased.

What happens is that the body gets used to the old dosage, and makes allowances for what is, really, something of a poison. Effectiveness diminishes, but as the dosage is ramped up the side-effects become worse.

And the side-effects are pretty terrible. One develops a need for the next 'hit'. I remember counting the hours, then the minutes until my next does. Pain would be going past any mental boundary I could set up, and yet...the clock ticked on. Slowly.

I lived from dose to dose. In between, I was a different person. I knew who I was, and who I was supposed to be, but there was a gauze curtain too thick to penetrate that kept me away from that. I made decisions that, in undrugged reflection, left me aghast. My tongue was loosed, and I said things that should never have been said.

That is the reality of opioid addiction. You're not yourself. And at some level, you know it.

People react differently; some try to wean themselves off pain meds completely, when they hate what they're becoming; the pain is better than the loss of self-respect, at least for awhile. Or they quit cold-turkey, and go through a withdrawal process that's nothing short of hell on earth (which is what I've done, several times).

Some simply accept the need for medication and accept the changes that go with it.

And some, unfortunately, develop a need for ever-increasing dosages, and if left to themselves may mix medications, or use pain meds with alcohol, all for a stronger effect. I can't blame them; I've been so far down that I would have done anything to lift the weight of pain, even for a short time. When I had insurance these episodes led me to the ER, and I so looked forward to that first quiet soothing rush of IV morphine or demerol hitting my nervous system.

It's a tough road for the caregiver; you have to gauge where your mate is, psychologically and physically, and sometimes you have to steo in, whether it's talking the patient out of quitting cold-turkey, or keeping the medicine under lock and key so that extra pills can't be quietly slipped away.

But wherever you are in this, dear caregiver, don't do it alone. Talk (privately, if necessary) to your spouse's doctor, and by all means either work with a counselor, support group, or trusted friend who's walked this road.

Much to my surprise, I decided to participate in a '31 Days' blogging exercise; rather than interrupt the flow of this post, I have another blog established, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Ariel Sharon) and a short commentary.

And now that October's over...I'm going to keep it going.  I hope you'll join me.

Marley update...he's in danger from the county authorities and NEEDS HELP TO BE SAVED.

WE ARE MAKING A DIFFERENCE!

He's up over 200,000 signatures, but the local authorities are now actively planning to kill him. They've removed him from the official ownership of his family. They think that we'll give up and go away. We won't.

If you have a moment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.

Your Dying Spouse 226 - The Land Of Look-Behind

On old maps of the island of Hispaniola (now the home to Haiti and the Dominican Republic) you'll find areas of backcountry marked The Land Of Look-Behind.

These were the places to which escaped slaves ran...but they were never truly free, because they always had to look over their shoulders.

It's something that both patients and caregivers do, as well. It may be the hardest part of dealing with a terminal illness, at least the toughest on the soul.

For patients, the end of life almost inevitably brings a stock-taking, a retrospective...and the tendency is to concentrate of failings. I know I have done this.

It can be devastating, and puts the lie to the moto posters that say Finish Strong. You can end up finishing in the pit of feeling like a failure.

It's the patient's responsibility to use mental self-discipline, of course. We tend to judge ourselves harshly, but that's a choice. One has to look at the sum total of what one's done, and never overlook the small graces one has left in one's path through life.

It also requires constructive engagement - with the caregiving spouse, and with friends. There is a tendency to isolation, and it has to be fought.

The caregiver can be a great help here, by encouraging engagement, encouraging activities that look hopefully to whatever future is left, and perhaps most of all by appreciating the good things that the patient is still contributing to the shared life.

This last can be tough, when life seems to consist so largely of recording symptoms, doling out meds, and helping one's spouse on and off the commode. But there are, hopefully, small kindnesses that you can highlight, the cup of tea made for you when you're busy, or the surrender of the remote when the Giants are playing the Packers and you would rather see a PBS special on Yosemite.

For the caregiver, look-behind comes most strongly after the fight's over, and you wonder if you could have done more, and when you remember the things you remember most are your failings.

This is tough to deal with, because you can't go back and gt a re-validation that you did OK. (Though hopefully your spouse-patient does thank you for your consideration and kindnesses - I try to do this, though I am not as consistent as I would like.)

Coping with these regrets is best done through counseling and a support group.

You haven't walked this road alone; there are others who felt the same anguish, and knowing that the burden's shared can at least take some of it off your own shoulders.

You can only do your best...and as a caregiving spouse, you're already doing it.

God bless you, dear heart.

Marley update...he's in danger from the county authorities and NEEDS HELP TO BE SAVED.

WE ARE MAKING A DIFFERENCE!

He's up over 200,000 signatures, but the local authorities are now actively planning to kill him. They've removed him from the official ownership of his family. They think that we'll give up and go away. We won't.

If you have a moment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.

Your Dying Spouse 225 - Not Worth Keeping Me Alive {FMF}

Back again with Five Minute Friday, a timed and keyword-driven writing challenge hosted by Kate (The Great!) Motaung.

But first, an update - yesterday Barbara won the Halloween Costume Contest at work, dressed as WW2's Rosie The Riveter. Here's a picture - she really nailed it! (Look at the contemporary poster at top right for comparison.)

The keyword this week is EAT. I don't do much of that, but the word's in there, boldface and italic. It'll have to do. I'm too tired and depressed to weave more around it.

Once again, circumstance force me to write ahead, but I am hewing to the five-minute time limit, and will try to work in the word when it's revealed. This one's gonna be a challenge...

I don't have health insurance. I can afford to be sick, but I can't afford even pallative care.

There are things that could make life easier, Under a gastroenterologist's care we could try combinations of pain meds and pancreatic enzymes. They might help, even though they haven't in the past. And there is the Whipple Procedure, a really nasty operation that could be a life-extender. Only a couple of places in the country even perform it.

But those are fairy tales for me.

My wife works; I can't. Her income (which I won't reveal) gives me the rock-bottom Affordable Health Care Act ('Obamacare') plan which would cost $179.38 per month (with a subsidy). We can't afford that and keep our house, pay the utility and insurance bills, and eat. We have no savings; those were burned up when I lost my career and my wife started building hers. And then there was Chapter 7 bankruptcy.

One might say, 'well, you can always tighten your belts...but to what end? The details of the plan include a deductible of $6650, with an 'estimated yearly cost' of  $4708'. That is, a cost of $392 per month. If we can't do the deductible, how can we bring together $392 per month?

You see, test and imaging (x-rays, CAT scans, and endoscopies) are not covered until the deductible is me. I can't even afford to find out if I am a candidate for Whipple.

But wait, there's more...after the deductible is met, an ER visit would cost $350. (An ER visit could be a lifesaver, as pain-induced shock kills most people with pancreatic issues.)

After the deductible is met, a specialist office visit would have an $80 copay. Before the deductible? For a specialist? Last time I went to a pain specialist the charge was over $200. That was in 2012.

Generic drugs are $33. The meds that could help me are non-generic. A coupe of years ago a bottle of pancreatic enzyme pills cost $600...one month's worth. Now?

The one bright spot is that a primary care MD visit is $35. That's against his regular cost of $70 for self-pay, so if I saw him, say, twice a week, I'd break even on the premiums. We could chat, anyway. Wouldn't be able to afford anything else.

I suppose the Powers That Be assume that one should have a credit card or two with a high limit, to take care of these things...or take out a home equity loan. Having gone through bankruptcy, that's not an option. No rich friends, either.

In the end, the message I get is that I'm not worth keeping pain-free, or even alive. And yeah, I rather resent this, given the fact that the plans pay for suchlike as Viagra, and that the administration is pressing insurers to fund sex-change operations. The money's got to come from somewhere.

I'm not asking for sympathy, and I'm certainly not going to start a GoFundMe page. But I will ask you to consider, when you vote, what's on offer. My story's not the only similar one out there.

Oh, and did I mention this? That if I choose to partake of physician-assisted suicide, all my expenses will be covered! (I'm not alone; click here to read a more poignant story.)

If that isn't a message I don't know what is.

Marley update...he's in danger from the county authorities and NEEDS HELP TO BE SAVED.

WE ARE MAKING A DIFFERENCE!

He's up over 200,000 signatures, but the local authorities are now actively planning to kill him. They've removed him from the official ownership of his family. They think that we'll give up and go away. We won't.

If you have a moment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.

Your Dying Spouse 224 - It's Hard To Go On

An update - yesterday Barbara won the Halloween Costume Contest at work, dressed as WW2's Rosie The Riveter. Here's a picture - she really nailed it! (Look at the contemporary poster at top right for comparison.)

We're linked with Messy Marriage's From Messes To Messages. I hope you'll take the link there; you'll find a lot of really great marriage resources.

It is getting hard to continue...writing, and hoping. A lot of ground has been lost recently, physically, spiritually, and just in terms of overall outlook.

Barbara's concerned; she sees the light fading, and asks what she can do to help. The hardest words for a caregiver to hear, I think, are, "There's really not much you can do."

Or anyone can do, for that matter.

Except me. My morale, my hope, my future, whatever it is, is up to me. (I'm not excluding God, but my nature just doesn't allow me to lean into Him arms, or cry out to Him. He's there, with an offer of strength and a God-sized boot in the backside when I slip into self-pity. Sometimes that makes sitting down kinda hard for a few days.)

So what to do -

• Dress professionally according to my circumstance, which means clean and neat shorts and shirt, and boots. No slippers, no dressing gowns. (I have to wear shorts as my legs have burn scars; long pants hurt.
• No comfy chairs or sofas. When I sit down I sit on the floor; when I lie down (which is often, yeah, it's the floor. Softness is self-indulgence, and self-indulgence is a killer.
• Maintain engagement via the internet; the only human I see regularly is my wife, and carrying on a conversation is hard. Mostly I listen. But I do try to keep up with the blogs I have come to love, and to maintain engagement on mine. Not easy, some days. Pain can make concentrating on a comment or reply hard. But it's vital for mental health.
• Try to do at least one -aeroplane-building-task every day. This was my lifetime avocation, and while I can't do much I can still do something, even if it's laying out a pattern for a part on a piece of steel I may never be able to cut. It's not much but it's something.
• Avoid media that calls me to cynicism. I love Joel Osteen, but hearing him talk about my miracle being just around the corner evokes an answer of "Oh, yeah?" and that isn't helpful. Cynicism is the brother of despair, and the father of self-contempt.
• No bad language. This is hard for me! But the use of profanity is not only unimaginative, it's also sloppy and gives vent to frustration that should be sublimated to a better purpose. Complaining is useless.
• No comfort food. The foods we crave are generally high in carbs and fat...that' why we like them so much! But for mental clarity one needs more protein. So it's lean chicken 'till I'm growing feathers. And rather than soda pop, concentrated electrolytes in tapwater. Bon apetit.

That's a pretty good list for starters. What would you suggest to add?

Much to my surprise, I decided to participate in a '31 Days' blogging exercise; rather than interrupt the flow of this post, I have another blog established, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Malcolm X) and a short commentary. I hope you'll join me.

Marley update...he's received a lot of support, but STILL NEEDS HELP TO BE SAVED.

WE ARE MAKING A DIFFERENCE!

He's up to nearly 200,000 signatures, but the local authorities are dragging their feet. They think that we'll give up and go away. We won't.

If you have a mment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.

Your Dying Spouse 223 - How Much Do You Share?

I don't talk to my wife much because, well, I can't talk much. It hurts too much.

When I do talk, it's usually about life-functional things...like needed groceries or which dog has an upset stomach.

Barbara talks about how she's physically feeling; I almost never do except to say something like, "Hard day."

And that's it. I don't have the words that can describe what life is like now. They'd either be melodrama or an idiotic minimization. It's bad, and I don't want to talk about it.

Living it is enough.

But it's not fair to my caregiver, my wife. While it would be wonderful if she could get by on reading body language and grimaces, it's not a reasonable expectation.

I have to learn the language of the patient.

And I really, really hate itt, because it's one more step into the reality that awaits, that I really want to avoid.

Much to my surprise, I decided to participate in a '31 Days' blogging exercise; rather than interrupt the flow of this post, I have another blog established, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Malcolm X) and a short commentary. I hope you'll join me.

Marley update...he's received a lot of support, but STILL NEEDS HELP TO BE SAVED.

WE ARE MAKING A DIFFERENCE!

He's up to nearly 200,000 signatures, but the local authorities are dragging their feet. They think that we'll give up and go away. We won't.

If you have a mment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.