Tuesday, May 10, 2016

Your Dying Spouse 162 - Incontinence

Did the title scare you off?

It did me, in trying to write this thing. But while talking about it's painful and embarrassing, the problem of bladder and bowel incontinence exists for many of the terminally ill.

And hence for their caregivers.

True incontinence, where there's absolutely no control, is pretty rare. Thank God.

What I'm talking about is a system that's compromised so that the timeline between the "I've gotta go!" warning and the point at which the sphincters release is maddeningly short, and by that I mean seconds, or maybe a minute.

And it does let go.

Puts one on a pretty short leash, and makes any kind of nonessential outing pretty unpleasant to contemplate.

Yes, I know about adult diapers...some people are OK with wearing them, but to some - like me - even the term is anathema. It adds humiliation to pain, and so no, I won't be coming to the party or the church service.

If your husband or wife is in this position, here are some suggestions, gleaned from experience -

Don't suggest adult diapers. Just don't. Your mate knows about them, and will bring up the issue him-or-herself if it's an option. (And don't offer the thought that using the things would allow 'freedom'; again, it's a very personal decision, and it's not your decision.)
Don't make light of it, or compare it to a time in your life when you may have had the problem. You survived; the soon-to-be-dead-dude will likely not. Comparison, even as well-intended sympathy, comes across as condescending.
Offer to help with a cleanup, but don't push. Your spouse may not want you to see him or her 'that way'. Respect their privacy, and what's left of dignity. It's not about you; it's about horrible, total embarrassment.
Some people will make light of the problem (like saying, with feeling, "Oh, crap!"). Set your response by their tone. Don't make light if your husband is weeping from the frustration, and don't make it out to be a tragedy if your wife's laughing it off.
Your spouse may suddenly want to do his or her own laundry. Allow that, and don't interfere, or comment. (Likewise, if you';re doing the laundry, don't comment unless you see something really bad, like large bloodstains that are otherwise unremarked.)

One more thing, and this deserves more than a bullet point...your spouse may physically withdraw, and be reluctant to touch, or be touched, far less engage in physical intimacy.

That's something you've got to respect...up to a point. Being incontinent makes one feel kind of...well, 'soiled', and a hard or unexpected hug can cause something...well, unpleasant if not entirely unexpected. And as for sex, you can well imagine.

You've got to respect boundaries, but don't fall into something of a retaliatory withdrawal. That sounds awful, but as a caregiver, you're human...and you can feel rejected.

Instead, try to imagine how you'd feel as the worst physical version of yourself, with a self-smell that never goes away, even when you've just washed.

Try to imagine what it's like to be seen as you never wanted anyone to see you, let alone the man or woman whom you wanted most in the world to impress.

And put all of that feeling, that compassion, into a gentle caress of the shoulder, a soft brushing of the hair.

Just don,t...please...make it a surprise!

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 153 - Self-Medicating

We're linked to Messy Marriage's Wedded Wednesday; please visit for some great marriage resources.

What do you do, as a caregiver, when you realize that your terminally ill husband or wife is self-medicating?

Self-medicating can take many forms; what they have in common is that they address the combination of physical pain and discomfort along with the emotion burden that dying places on the soul - the fear, disconnection, and loneliness.

Understanding where it's coming from is the first step in dealing with the issue...and as a caregiver, you have to find a way to deal with it. You can't turn away.

The process usually begins when a patient feels that he or she is being 'let down' by medicine, that the prescribed treatments either aren't effective enough, or cause side effects that are hard to tolerate.

"I now how I feel...I can do a better job."

Well, no. Unless one's well-trained and well-educated, and can work with an almost superhuman detachment from oneself, one can't. I mean, would you take out your own appendix? That's an extreme example, but not completely hyperbolic, because self-medication can and sometimes is fatal (consider Prince and heath Ledger).

There's also a sense of entitlement, as in, "I don't have long, and I deserve to feel better in my last days."

Sure, you deserve to feel better. But as Mick Jagger said, You Can't Always Get What You Want, and sometimes, to continue to function as part of a family and part of a community, you simply have to bear the pain, and face the sadness.

Self-medicating can take many forms, such as -

Finding a tame doctor who'll over-prescribe pain meds (harder now, but still possible)
Alcohol
Marijuana use
Street drugs
Shopping (especially online)

I separated out marijuana from 'street drugs' because there is some social tolerance for it, and therefore often more reluctance in confronting someone who's using it to self-medicate.

What should you, as a caregiver do, when you realize that self-medication is happening on your watch, so to speak?

First, talk to a counselor to get your own bearings.You should be doing this anyway, if possible; caregiving takes an enormous toll.

Next, try to determine the extent of the problem...and stay involved. There are some levels of self-medication that aren't worth a confrontation. If your husband goes to the house of the old hippie dude down the street to share a marijuana cigarette or two once or twice a week, you may find that it's simply better to keep your own counsel, and keep an eye on the situation, especially if death is close.

Creating an emotional rift at the end of days can make for damage that's hard to repair.

Likewise, shopping. If you can afford the 'feel-better' purchases, you may choose to let it go.

But sometimes, it's past tolerating, and you have to take action. Prepare for it.

Talk to your spouse's medical care team. Don't make it about 'you'; but do make them aware of what's happening.

Talk to your pastor. You'll need prayer, and all the spiritual support you can get, because I promise you this...

When you confront, it's going to be ugly.

Your spouse is going to get defensive, guaranteed, and when he or she realizes that you've called in outside parties, feelings of being ambushed will arise.

Be firm in your commitment to the health of your relationship. Don't make it a power-play; someone who's dying is losing influence steadily, and raming this as a matter of exerting control will make things really horrible, and can kill the good times you may have left.

Be supportive in every way you can. If your husband or wife is having problems with medication dosage or effects, listen attentively, and if possible, go with them on doctor visits to lend your support. Make the system work.

Don't take the abuse that may be hurled your way personally. While part of it is personal, and intended to hurt, a larger part comes from feelings of guilt and shame. Your spouse may, on being confronted, say that he or she hates you; but the amount of self-hatred is even greater.

Don't expect a quick 'healing' if you have to confront. Bad habits can be hard to break, and quitting cold-turkey can cause some pretty nasty physical and psychological problems. It's going to take time to mend.

And it will take time to mend your relationship. From both sides; you'll have to be watchful, and untrusting for awhile, and that builds distance. Your spouse will feel, at best, 'on probation', and something less than an equal partner in your marriage.

Finally, pray...a lot.

Sunday, May 8, 2016

Your Dying Spouse 152 - Death Letter

"To be opened on my death."

As a caregiver, do you want a voice from the grave, form your husband or wife, wrapping things up, so to speak, with final thoughts of What It All Meant?

Or would that be just too painful to read?

Regardless, some people, facing the end, do find it necessary, sometimes urgently so, to get something down on paper. It's a call to legacy, to show, first, that I Was Here, and second, that My Life Mattered.

It's a message to a future that this individual will never see. (Randy Pausch's The Last Lecture is a book-length death letter to the kids he'd never see grow up.)

So, dear caregiver...what's your role in this? What kind of encouragement can you bring? How can you help. even if it tears you up inside?

First, don't throw cold water on the idea, if your dying spouse brings it up. That's the flat-out worst thing you can do, because even though you don't mean it, the interpretation is that you don't want to look back at the shared life you had.

Second, be open to exploring those shared memories...and, sometimes, doing some research to spark them. For someone who doesn't have a tomorrow, and for whom today is both painful and frightening, yesterday assumes huge importance.

Yesterday becomes the definition of a person's life, and a definition of value.

Third, try to keep hope, or at least anticipation alive. The doctors may have given up, but you can give your mate something to look forward to. You've got to take on the role of Cruise Director for this last voyage, by planning meals that can still be enjoyed, and watching - together - DVDs that you may have seen many times, but that still bring a sense of involvement and purpose to the dying.

Barbara did just that this evening; she has an early day tomorrow, but she stayed up with me to watch Star Trek - Into Darkness. It was her suggestion. She knew I'd had a miserably uncomfortable weekend, and she sacrificed her sleep to bring me this gift.

Because, you see, writing a death letter focuses on the direst of prospects, and it's easy to get caught in them.

Finally, show interest. If your mate wants to talk about what he or she is writing - to you - be present, and listen.

Because it's really a cry for help -

Tell me that I mattered..

Thursday, May 5, 2016

Your Dying Spouse 151 - Missing Ewe {FMF}

Time for Five Minute Friday, the weekly keyword-inspired timed writing challenge hosted by Kate Motaung ( who graciously gave me the word ahead of time...thanks, Kate!

The word is MISS.

Not feeling up to much today, so here goes...

There once was a lamb named Shiloh
who loved her corn and her milo.
She followed afar
that culinary star
and last seen, lived in a silo.

Posting that leaves me feeling a bit sheepish.

This week was also the launch of my new novel, Emerald Isle. I owe a huge debt of gratitude to the FMF community, for keeping my head in the game, and my eyes up. And I owe a lot to others, too, as you'll read below.

Emerald Isle is about finding the faith and hope to overcome a devastating loss, only to have to face the hard truth that sometimes God asks more than we think we can possibly give.

It's on Kindle now; a physical version will come. Please click on the cover below to go to Amazon, and learn a bit more about it.

Thanks to the hard work a dear friend I've never met, Carol Ashby, let me introduce...drum roll, please...

The paragraphs that follow come from Monday's post; not having the energy to rewrite them I just pasted them.

Yes, Emerald Isle made it out of the shadows. It's about love and hope and death and second chances.

I's about life.

But mainly, for me, it's about people who will pick you up when you can't walk another step, and carry you over the finish line.

I was out of strength, and, to tell the truth, out of hope.

And I did the most important thing I could have done, even though I didn't know I was doing it. I asked for help.

In participating in the blog run by the agents of the Books and Such literary agency (of which I am not a client...I don't have an agent), I mentioned that I had some work that probably, due to my physical situation, would not see the light of day.

It wasn't a cry for help or reassurance; I don't do that easily. And while there may have been some self-pity involved (some?), I don't think that was the motivator. I've seen things that are way more deserving of pity than me.

It was, as close as I can say now, with hindsight, a warning...don't wait too long. Some day tomorrow won't come.

At any rate, the Books and Such blog community leapt to my aid, with encouragement, and in Carol's case, with editing expertise.

I cannot tell y'all how humbled I am.

Emerald Isle meant a lot to me when I wrote it; it still does. But even more, the lesson I have learned here has changed my life, even this close to its ending.

I learned that when God opens the doors of Heaven's treasurehouses, what rains down is love. We have only to accept it.

Tuesday, May 3, 2016

That Little Voice - A Story of Viet Nam {#BlogBattle}

Time again for #BlogBattle, the keyword-inspired flash-fiction contest hosted by the vivacious Rachael Ritchey.

The word this time is VOICE.

This is the second installment in a multi-part anecdote...part one was Hope Floats.

That Little Voice

As it turned out, no one cared whether we were wearing our A's or not.

The Dude, Biff and I were waiting in the transit shed at Tan Son Nhut, slowly wilting. The C-130 we'd been booked on for what the departure clerk smirkingly called our 'hop' to Bangkok was being taken to bits on the ramp by a group of puzzled mechanics, and there was no beer.

Could life get worse?

Suddenly The Dude straightened up, then stood. "I don't believe it...Brother Cedric?"

The Marlboro Man, or his twin brother, had been walking past on the ramp, and he stopped at The Dude's call. Tall, and lean, he wore Levi's, cowboy boots, and a shirt that had once been plaid. There was a holstered .45 tucked under one arm, and a cigarette dangled from the fingers of his left hand. Mirrored sunglasses hid his eyes.

I wondered about smoking where there were airplanes filled with gas around, and decided not to ask.

The Marlboro Man removed his glasses, and squinted into the dim shed. "What...no, really?" His voice had a nasal new England inflection that didn't really go with the hat.

"It IS you!" The Dude ran out onto the ramp, and for a horrible moment I thought the two would embrace...but fortunately they stopped to shake hands and flail at each other's shoulders in an emotively manly greeting. "Guys, get out here!

The Dude was beaming. "This is Brother Cedric...he's a Jesuit, taught spiritual formation at the seminary." He introduced us as might a proud parent, with praise that neither Biff nor I deserved.

Brother Cedric shook our hands, and the Northeasterly twang softened. "I've heard about you guys. It's good to meet you."

He sounded like a monk, but sure didn't look like one. I looked at The Dude, and he asked the question for all of us.

"So...uh, what gives with the..." He waved his hands up and down in an almost helpless gesture.

The monk grinned. "No I haven't left the order, but you remember, before I went in, I flew for Uncle Sam. Did an early tour over here, training the VNAF. The experience gave me religion."

He paused, expecting a laugh, which came. We'd heard of some of the VNAF's antics.

"Anyway, vocations started to tail off...and since the abbott didn't think I was suitable for parish work, he gave me the option of coming back out here, as a missionary."

He looked more like a mercenary to me, but I held my tongue.

"When I got here, there was someone waiting, with an offer I couldn't refuse. So now I'm flying for Air America, spreading the gospel along the way."

Biff, the innocent, asked, "What's Air America?"

The Dude answered for Brother Cedric. "It's the CIA airline."

"They can be persuasive," said the monk. "So what's with you guys? R&R?"

"Bangkok," said The Dude. "Someday." He pointed to the increasingly disemboweled C-130.

"Gosh," said brother Cedric, "that doesn't look too good. You want a lift?" He pointed down the ramp to an unpainted and unmarked C123. "I was heading upcountry, to NKP, but I can drop you and Don Muang, no sweat."

The Dude, Biff and I exchanged glances that spoke of this bit of divine intervention, and headed for our ride.

Brother Cedric's copilot was a small dark man with a ready smile and no words. He was introduced as Sam, and we were introduced to him in a sibilant blend of vowels of which he understood not a word,not even our own names repeated.

"Sam's Laotian," said Brother Cedric.

"Is Sam his real name?" asked Biff, still testing the bounds of naivete.

Sam startled us all by saying, "My real name..."

Brother Cedric was right. It was unpronounceable.

The 123 was smaller than the 130, and had a cozy feeling. Brother Cedric and Sam stepped up a small ladder to the cockpit, and then the monk motioned for The Dude to follow them.

The cargo hold had the usual wildly uncomfortable tube-slung nylon seat, a kind of hammock for one's butt. Since we were the only passengers, we gave ourselves plenty of room.

"Do you think we can go the the Floating Market? Pattaya Beach?" Biff had been loaned a Fodor's Guide, and I figured we were doomed to every tourist trap in the area.

"Sure," I said. "You can send home all the monkeypod you can afford, and we'll keep you sober at Pattaya."

The Dude came back from the cockpit, smiling enigmatically. "What do you guys think about a change in plans?"

Biff, anguish touching his tones, said, "But I want to see Bangkok!"

"You'll have way more fun. Trust me."

The two most dangerous words in the English language, said my Little Voice.

But at least we wouldn't have to babysit a drunken Biff.

Your Dying Spouse 150 - Death Song {FMF}

We're linked with Messy Marriage's Wedded Wednesday - please visit for some really great marriage resources.

My newest novel, Emerald Isle, is now available on Kindle. Please click on the cover if you'd like to have a look.

Not really up to writing, but I thought y'all might enjoy this - from Chief Tecumseh

So live your life that the fear of death can never enter your heart. Trouble no one about their religion; respect others in their view, and demand that they respect yours. Love your life, perfect your life, beautify all things in your life. Seek to make your life long and its purpose in the service of your people. Prepare a noble death song for the day when you go over the great divide.

Always give a word or a sign of salute when meeting or passing a friend, even a stranger, when in a lonely place. Show respect to all people and grovel to none.

When you arise in the morning give thanks for the food and for the joy of living. If you see no reason for giving thanks, the fault lies only in yourself. Abuse no one and no thing, for abuse turns the wise ones to fools and robs the spirit of its vision.

When it comes your time to die, be not like those whose hearts are filled with the fear of death, so that when their time comes they weep and pray for a little more time to live their lives over again in a different way. Sing your death song and die like a hero going home.

Sunday, May 1, 2016

Your Dying Spouse 148 - A Book Arriveth; A Lesson Learned

I'm guest-posting over at Anita Ojeda's "Blessed But Stressed" today, on what the church can do for dudes with PTSD. Please step over and visit!

Thanks to the hard work a dear friend I've never met, Carol Ashby, let me introduce...drum roll, please...