Your Dying Spouse 175 - Protecting Who You Are {FMF}

Time again for Five Minute Friday, the timed keyword-inspired writing challenge hosted each week by Kate Motaung.

First...Strawberry's doing great. She's getting playful and seems even MORE clumsy!

This week's word is  PROTECT.

When you're facing the reaper, one thing I've learned is that you've got to find a robust way to protect your sense of self. In the end, that is what's going to carry you through as ability and potential are stripped away.

I didn't do so well this week, and I'm trying to find my balance.

A few days ago, I got the chance to see myself as a couple of people who are close to me see me. It wasn't a pretty sight.

I'm ruthless with myself, no bones about that. But it carries over, and has carried over for years...to the point where these individuals have taken it on faith that in the case of operational necessity, they would not be the first priority. I won't explain that further, and you can spin it any way you like.

The thing is, they're very probably right. Training creates mindset, and the better the training...and the better one 'takes' to it...the more ingrained the attitude is. You're not dealing with thought and action...you become thought and action.

Great under certain circumstances, but it's of little use in the civilized world.

I'd thought of myself as a relatively pleasant person who was capable of performing duties that might make others quail, but that I was loyal and dependable.

Seems there's a catch. I'm seen as loyal and dependable to a cause that I would place higher than love and friendship.

That's not a pleasant look in the mirror.

How could I have protected my heart? I don't know. But I feel awfully alone at the moment, a dragon in suburbia.

Maybe I should have just let myself see the dragon, and embraced the fire.

The musical inspiration for this post, and for rebuilding my heart, is Daniel Powter's "Bad Day", a truly charming song to which I once did a solo dance in a Texas parking garage during a night-time thunder storm, and I hadn't even been drinking!

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!

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 174 - You'll Miss Me When I'm Gone

Boy, does that sound like a self-serving title, or what?

But it's not fully reflective of what I'm trying to say, which is this - caregiving provides a sense of identity and purpose, no matter how onerous or tiring it may become, and when it ends in the death of the patient, it leaves a huge hole

You may miss the patient, but that isn't the point. You'll miss the part of you that died, too.

The biggest symptom of this is that life will seem to have lost most of its flavour after that death. Colours will be dimmer, and neither joys nor sorrows will be very sharp.

It's an emotional numbness that comes with an amputation of part of your life.

How to deal with it? It's tempting to say, :You can't", an to some extent this is true, but there are ways in which effect of loss can be mitigated.

• First, keep a part of yourself to yourself during the caregiving journey. This means doing your best to preserve the interests and enthusiasms that moved you before, and not to feel that you should sacrifice them on the altar of 'priorities'. You may not have time to fully pursue there interests, or to pursue them at all, but you need to take proactive steps to stay connected.
• Second, stay in touch with friends. Don't become a recluse who only goes to work and comes home to bear the weight of a narrowing world. The connections are important both for you and your terminally ill husband or wife. You can't be the sole focus of a dying person; it'll suck the future right out of your heart.
• Third, continue going to church, and make sure that there is a bereavement support group. Talk to your pastor about it; when the time comes, he'll press you to go, if he's any good. Realizing that someone else feels like that can make you feel so much less alone.

Yes, you'll miss me. But, dear caregiver, your life will go on. Please do everything you can to ensure that you'll be there to meet it.

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 174 - You'll Miss Me When I'm Gone

Boy, does that sound like a self-serving title, or what?

But it's not fully reflective of what I'm trying to say, which is this - caregiving provides a sense of identity and purpose, no matter how onerous or tiring it may become, and when it ends in the death of the patient, it leaves a huge hole

You may miss the patient, but that isn't the point. You'll miss the part of you that died, too.

The biggest symptom of this is that life will seem to have lost most of its flavour after that death. Colours will be dimmer, and neither joys nor sorrows will be very sharp.

It's an emotional numbness that comes with an amputation of part of your life.

How to deal with it? It's tempting to say, :You can't", an to some extent this is true, but there are ways in which effect of loss can be mitigated.

• First, keep a part of yourself to yourself during the caregiving journey. This means doing your best to preserve the interests and enthusiasms that moved you before, and not to feel that you should sacrifice them on the altar of 'priorities'. You may not have time to fully pursue there interests, or to pursue them at all, but you need to take proactive steps to stay connected.
• Second, stay in touch with friends. Don't become a recluse who only goes to work and comes home to bear the weight of a narrowing world. The connections are important both for you and your terminally ill husband or wife. You can't be the sole focus of a dying person; it'll suck the future right out of your heart.
• Third, continue going to church, and make sure that there is a bereavement support group. Talk to your pastor about it; when the time comes, he'll press you to go, if he's any good. Realizing that someone else feels like that can make you feel so much less alone.

Yes, you'll miss me. But, dear caregiver, your life will go on. Please do everything you can to ensure that you'll be there to meet it.

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 173 - When The Caregiver Stops Caring

It's human. You can get so overwhelmed with being the main attendant and sometimes the main focus of life for a terminally ill mate that a part of you is going to scream I am so tired of this and I just don't care anymore!

And then you'll probably beat yourself up for thinking disloyal thoughts.

But you've got to remember a few things -

• Emotion is largely out of our direct control. You can't stop a thought from entering your head. You can stop it from taking root. There's an old proverb, "You can't keep birds from flying over your head but you can keep them from nesting in your hair."
• Emotion and feeling and even love are variable. They are going to rise and fall over time; life is not a romantic comedy in which love simply grows and grows. Sometimes it lies dormant, sometimes it withers a bit. Trying to 'force' feeling is like making a tired horse work harder. You might be able to do it for a little while, but you can really ruin something.
• As long as you don't talk abut this kind of feeling, your mate likely won't know about it. What you do and how you act are the important things here, the points of contact.
• Finally, and most important, this feeling of indifference and futility will pass.

Be gentle with yourself. Doubt, anger, and even indifference are part of being human in a very tough and exhausting situation. Don't make it worse for yourself by trying to keep to an unachievable standard.

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 172 - Hold Fast Till Morning {FMF}

Time for Five Minute Friday, the weekly keyword-driven timed writing challenge hosted by Kate Motaung.

I don't know what the keyword is yet, but I'm writing this while I have the energy. Last night was kind of rough, and I'm tired. (It's REST.)

Yeah, it happened again.

I was in a bit of trouble during the night. Quite a bit of pain, and I was screaming. Literally. The clock seemed to have frozen on 1:18,and all moments coalesced into one.

And in that one moment, I felt my soul leaving my body. Through the side of the right thigh, of all things. I thought you were supposed to leave, like, through the head or something?

There was intense heat there, not a burning, more of a warmth that was designed to make leaving easier.

And I was slipping through that warmth, bound for Heaven.

I refused to go. I said it inside, and I said it in words, maybe not understandable. "No. I'm not going."

I should say I was tempted. I should say that I was drawn by the thought that soon I'd see Jesus, face-to-face. That the pain would be over, that the humiliation of a failing body would end. Here and now.

But I wasn't tempted, and I said no.

Why? Why not let go, and fall into God' embrace? I've been told, let it go, you've suffered enough. Give yourself over to the Lord. Be at peace.

Why not rest?

Peace really sucks. It's boring. Harps and angels' wings. Give me a rifle and a full bandolier, mate. I am still in this fight.

Maybe Valhalla is indeed the true Heaven, and Hell is reserved for those who die in bed.

Sure, I have to go sometime. But it'll be on my terms, and God has to accept that. When I walk through the Pearly Gates it'll be rifle in hand, pistol on my hip, knife in my boot, and enough ammunition to make Pancho Villa green with envy.

The saints and angels will fall silent, step aside, and look away. They have to earn the right to watch me pass.

I'll walk up to God, look him in the eye, and say, "You got another war needs winning? I'm ready. Here am I; send me."

Tempting to try to bring nobility to this. To say, well, I still have a job to do here. That there is witnessing left to accomplish, and comfort to give. Or even to say it's the principle of the thing, not to give up because I never learned to spell kwiit, much less do it.

But that would be only part of the truth, and on this occasion a small part. The biggest reason was Strawberry the Baby Bullmastiff. (For those who don't know Strawberry's story, you can read it by clicking here, and see some pictures of her here.)

You see, Strawberry is getting happy. She's putting on weight, and growing. She's learning how to play, and she's learning how to trust.

And she's learning how to love.

She give Mastiff Hugs, which are pretty breathtaking, as she puts her forelegs around my neck, and holds on tight. She's pretty strong. So it's breathtaking. Get it?

If I went, whom would she hug like that? Would I leave this friendly soul waiting for something that would not come again?

So I told God NO, and pulled, literally pulled my spirit back into my body, and I anchored it there with pain. I embraced that pain, my friend and guardian, to keep me safe from the temptation of Heaven.

I held onto the hope of another sunrise.

All to give a friend a chance to hug me again, which she did this morning.

She hugged me extra hard, because she knew.

So I'll shoot my way out of Paradise, to get back here. I don't need rest. I need a good hard fight.

Love wins, even over Heaven.

The musical inspiration for this post is Chris Cornell's "Till The Sun Comes back Around"

And here are the lyrics -

"'Til The Sun Comes Back Around"

Come to me in my darkest hour
When the sun goes down
And the fact that I never wandered
On unfamiliar ground
Maybe I'm walking on the wild
That can never leave me out

So I hold tight to the edge of the night
And I fight on and wait for the light
And I hold fast to the here and the now
Till the sun comes back around

How could I let so many miles
Come between our hearts
Does it beat for the loving side
When the fighting starts

Taught me well to unleash hell
But not how to shut it down

So I hold tight to the edge of the night
And I fight on and wait for the light
And I hold fast to the here and the now
Till the sun comes back around

Thoughts of you cut through the doom
As I stand alone on this wall
If I die, tell me will it matter
Whichever side I have on the fall?
No my dear, it won't matter at all
Oh my dear, it won't matter

Thoughts that flash in the calm
That casts long shadows of doubt
No matter how far down your heart
They just spill our lives

So I hold tight to the edge of the night
And I fight on and wait for the light
And I hold fast to the here and the now

Hope that tomorrow is found
And I'm standing here
When the sun comes back around

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 171 - Some Days Are Like This

There are days like this when you are dying...when you realize that the best speech has no words, and the best times can not be measured on a clock.

The past is already past.
Don't try to regain it.
The present does not stay.
Don't try to touch it.

From moment to moment.
The future has not come;
Don't think about it
Beforehand.

Whatever comes to the eye,
Leave it be.
There are no commandments
To be kept;
There's no filth to be cleansed.

With empty mind really
Penetrated, the dharmas
Have no life.

When you can be like this,
You've completed
The ultimate attainment.

- Layman P'ang

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 170 - Caregiving and Rain Checks

Need a rain check today. Had a bad fall, and there's no way to organize thoughts for writing.

Except to say that this does happen for caregivers, too. You can be so 'used up' that you can't meet your commitments and obligations.

Offer a rain check without shame. You wouldn't give someone with a broken leg a hard time; why would you hold yourself, with a broken heart, to a more brutal standard?

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 169 - Win At All Costs {FMF}

Time for Five Minute Friday, the weekly keyword-driven timed writing challenge hosted by Kate Motaung. Please visit to see some really good writers!

First and foremost...Strawberry is learning to play. It's heartwarming, and because she's still completely uncoordinated, hilarious. She is also learning to sing, with an absurdly high voice.

This week's word is LOSE.

I don't like to lose. As in I really hate to lose.

And so, I don't plan to. Things are getting worse - and today I had rather a bad fall - but there is a plan.

(Over to Barb..."You have a plan? Mr. I Wanna Be Spontaneous If It Kills Me?" Yes, dear, and if you roll your eyes like that they'll get stuck and you'll look like a zombie.)

Where was I?

Ah. The plan.

It involves giving myself Hooks To The Future.

See, if I have enough to look forward to, I'll be more likely to keep fighting when I do stupid things like...well, stop breathing. As I did on Monday.

Lay down on the floor because I was about to pass out, and suddenly I could not take a breath. It was like drowning. Couldn't call out, but I did beat on the floor with my hands...well, you would, too...and Syl and Ladron came running. I grabbed Syl's collar and she pulled me upright while Ladron pushed from behind. And I could breathe. Kind of. It hurt. Still does.

But I want to live, and I set small goals to tomorrows...like seeing the next Star Trek movie.

Seeing Strawberry grow up.

Reading books I have been saving.

And yes, getting well enough to work on the aeroplane again for at least a little while each day.

Not losing means finding an excuse to win. Any excuse.

It means overlooking things that are demeaning, like puking and incontinence. Those are passing things, really. (Did I just say passing? Forgive me!)

And it means flogging myself to the point where my dear wife simply can't bear to look.

But seriously, if you win ugly, it's still a win.

And there is only winning. "I'll do my best" is an excuse for losing.

Game on.

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 168 - Orlando, Death, and Caregiving

In the world in which I once moved, an incident like Orlando would not have been more than notable, raising some eyebrows. "Fifty? Bad show, that. Pity. Let's go sort the buggers, shall we?"

San Bernardino? Part of the daily grind. Fourteen was the low side of the usual wastage.

And that, frankly, is a pretty horrible way to look at tragedy. It's a hardening that cracks the soul, allowing humanity to leak away.

Including humanity toward oneself. I make jokes about things, where I really shouldn't; jokes about not being able to breathe, jokes about puking blood, jokes about world-class incontinence.

"Could be worse, I could have acne."

And Barbara hates that. She wants to be sympathetic, but who wants to extend feelings toward a jerk who can't even sympathize with himself?

And yet...it makes my life easier. If I took the time to really think about how crappy this all is, and how bad the outlook is getting, I'd probably be a quivering mass of tears, and sure as heck I would not be writing this.

And I think it's helped me survive. Yesterday I did stop breathing again, and it was terrifying in the moment. I was lying on my back, it was like drowning, and all I could do was to beat my hands on the floor.

The service dogs came running. I was able to grab Sylvia's collar, and she pulled me upright while Ladron pushed from the back. I could breathe again, painfully.

And I joked about it when Barbara came home./About how the girls must have rolled their eyes and said, "What, again?"

Makes me smile to think about it. But makes Barbara sick to her stomach.

I am taking something away from her. I am robbing her of the role of comforter, the role she should by rights have as a loving wife and a diligent caregiver.

"Pity. Let's go sort the buggers, shall we?" Would you want to live with that?

And so, a question...how does one reconcile one's own hardness of spirit, as a patient, with the need to allow the caregiving spouse to express sympathy?

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 167 - Spiritual Darkness

This weekend Barb rented The Letters, a recent film about Mother Teresa.

She wrote letters to her spiritual advisor during her career of working with India's poor, describing the torment of the spiritual darkness in which she found herself...abandoned by God.

And yet, she didn't abandon those who depended on her for care...and for her just plain showing up.

We may feel abandoned by God. Sometimes I do. Mother teresa did. Maybe you do, too.

But we can't break faith with those who expect us to show up.

Feeling abandoned does not give us the right to turn away.

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 166 - All I Want {FMF}

Time for Five Minute Friday, the weekly keyword-driven timed writing challenge hosted by Kate Motaung.

The word this week is...WANT.

Today, I realized...I want that.

Barbara rented a DVD of 13 Hours for me, the true story of the debacle in Benghazi on September 11, 2012.

And seeing it made me homesick for the person I used to be.

Sheer lunacy, of course, and even addressed in the film when one of the guys says, "Why can't I go home?"

He's told that warriors aren't trained to retire, but the truth is...sitting on a rooftop in a crappy foreign neighbourhood, holding a machine gun and surrounded by people who wanted to kill him, he was already home.

And I want to go home, too. I don't want to die by degrees, screaming in the night because my belly hurts (that was the past few nights' experience, and it sucked).

I want to go home to a place where life seems normal, and where death makes sense.

Welcome to my world.

And, as promised, a couple of pictures of Strawberry...

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 165 - What You Say Matters

Caregiving is hard, and it can drive you to the limits of your patience. And sometimes the triggers seem so trivial

My wife, for instance, has admitted that she has a hard time not resenting that I can't stand and chat. Standing hurts; I either have to move, or crouch on the floor. (Chairs ain't comfortable, not hardly.)

For her, one of the things that most people take for granted - a conversation, say, in the kitchen - simply isn't possible.

But saint that she is, she's held her tongue. (I did 'interview' her for this post, and she agreed to address this topic.)

But remaining silent was hard for her, because...well, she wants things to be different, and they can't be, and since God sometimes doesn't seem to be listening, the only place to vent, effectively...is on me.

She won't do it because she knows that will colour what I take with me across the Divide. And she wants that to be something good.

There is the saying...language alert here...that it takes seven "Attaboy!"s to make up for one "Dumbshit!"

And it's true. We tend to recall the negative much more readily.

When time's limitless, it's an inconvenience, yeah, an annoyance (especially if you've been the dumbshit), but things eventually stabilize. You just sometimes have to live with feeling bad.

But when time's limited, negativity in a relationship really hurts. It takes away, measurably, from what joy remains.

And it does go both ways. As I write this Barb is watching a variety/comedy show that I find distinctly unfunny. I could say something, and ask to put on something else...but why? She likes it.

And why does my loathing it matter? I'm old enough to take care of myself, and to tune out what I don't like.

Sometimes, you've just got to let it go.

So you can let the ret of life be.

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.