Your Dying Spouse 246 - Defiance, Despair, and Discipleship {FMF}

We're back with the Five Minute Friday group, a keyword-driven writing challenge hosted by the gracious and supremely talented Kate Motaung. Please visit to sample some really great writing.

This week's word is NOW.

If you've followed this blog for a while, you may have noticed that generally I'm defiant in the face of death. Sometimes you would have noticed despair; less often, I hope!

These are natural processes. Faced with the inevitability of passing from this life, one can naturally be expected to rail against 'the falling of night' and other times to despair. (And yes, they're part of Elizabeth Kubler-Ross's 'five stages of dying' paradigm.)

But now I'm a bit different.

It has, however, lately occurred to me that despair and defiance are really obverse sides of the same coin, yin and yang, action and reaction. Defiance is rooted in despair and can't exist without it.

In that way, it's a closed circle, one that affords no growth.

The one thing that can break the cycle is discipleship. That word is taken as a 'Christian thing', and to a large degree it is, but whatever your faith – and perhaps even in the lack of it - it can

afford you something of value.

For the Christian, discipleship is the following of the example and divinity of Jesus Christ. It's taking what He said to heart, living with His earthly life as an example and His promise of salvation as a grounding for action.

For the Zen Buddhist, discipleship is following the precepts of Gautama Buddha and Dogen Zenji, incorporating them into daily life and action.

For the Muslim, discipleship is found in living life in the way of the Prophet, with a hand to action and a mind focused on Allah.

For the Sikh disciple, the path is found in the lives of the ten Gurus, codified in the Guru Granth Sahib.

In short...discipleship is found in living; not living for oneself, but living a contextual life, rooted in and guided by belief in the validity of the teachings and faith one holds dear and true. Discipleship is a purposeful life with a purpose which takes one beyond one's own soul.

Defiance and despair are the path of the donkey at the mill-wheel, blinkered and hooded to walk his unending circular path.

Discipleship is the open road, the road with a destination. There may be delights found along the way, and there will assuredly be terrors. But the light of a purpose in living is the guide to one's steps and the illumination of action taken in the fidelity of belief.

Defiance and despair are the safety of the known. Discipleship is scary, because it can and will force your hand to play the cards you've been dealt for a cause.

And it's not your cause. It's one that will, when your steps falter, pick you up and carry you home.

Tonight's musical theme is provided by Soundgarden, with Live To Rise.

I have another blog, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Mick Jagger) and a short commentary. 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 245 - Was My Life Worthwhile?

We're linked with Messy Marriage's From Messes To Messages; please visit Beth's site for some great marriage resources.

If you're caregiving for your spouse, you may be stunned to hear this question - "Was my life worthwhile?"

Indeed, it may hurt; in the face of a shared life, shared joys and sorrows, it may well feel like a slap in the face.

"Does he regret our life together?"

The short answer is no. It's not about you, and not about the life you shared. It's fundamentally about a lie. Two lies, actually.

The first is the Lie Of Hindsight, in which the dreams one cherished were possible, looking back, with an assumption of time and resources and position and abilities one simply didn't have. The last part of that equation gets lost, and the resources are assumed to have existed if one only had the gumption and faith.

So very untrue. Life happens in between our hearts' desires, and it spreads to fill our days with the mundane...and the necessary.

The honour of sitting up nights with an ailing parent are overlooked; the only thing that counts are the dreams, unrealized, of hiking the Grand Canyon rim-to-rim.

The second lie is the Lie Of Relative Value, in which the very dreams themselves are questioned. What worth, in hiking the grand Canyon while millions are starving in the Sudan?

The answer, of course, is that life is about choices. The life that your mate lived was an integral part in the functioning of society...a small part, perhaps, but someone had to be there; someone had to show up at that job.

But it's hard to see, when even the Christian media trumpets the heroes of compassion...the rest of us are kind of left out. But those heroes need an infrastructure; we also serve who stand and wait.

Of course, pointing these out as lies isn't too effective. Your husband or wife has blinders on; in a real sense he or she wants to measure up as a failure, because at least the initial ideals were high!

So, what to do?

The best thing you can do is to accentuate the present positive. Be thankful - verbally - for the things your mate can still do for you. Be thankful for kind words and support, and for the prayers your spouse may offer in your behalf.

Say, "I'm glad I married you." You don't know how important that is to hear, when everything elses is slipping away.

And give your husband or wife a hug and kiss, whenever you can. That, YOU will never regret.

I have another blog, "Starting The Day With Grace". The focus is a grace quote from someone  you might not expect (like, say Mick Jagger) and a short commentary. 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 244: Patient Fatigue

No, I'm not talking about a caregiver getting tired of the patient...thought that does happen too.

The issue here is when the patient gets tired of the whole 'illness thing'.

It's understandable; constant pain and debility, with perhaps no prospect for better days ahead, will wear out anyone. It may not be something the caregiver can 'deal with', but it's important to know what's going on...and to do what one can in support.

It's also important to document, because it's not only the course of the illness that can cause a loss of morale; many medications (or combinations thereof) can do this as well. The patient's medical team needs to know.

The symptoms of a patient who's getting tired of it all include:

A changed attitude - the husband or wife who was cheerful and upbeat in the face of pain and the devastation of life turns dark and brooding, or simply shows an attitude of I-don't-care.

Loss of interest - a person who followed the news won't bother, and what hobbies have been pursued remain untouched for a prolonged period

Preoccupation with death rituals - meticulously planning one's own funeral is hardly a good sign.

Changed emotions - sudden irritability - or calm in a previously temperamental individual - can be a harbinger of fatigue, that the effort just isn't worth it any more.

Resistance to, or outright refusal of, medications or treatment - this is one of which I'm guilty; not having insurance, I'm not going to beggar my wife with tests and treatments that might not even help. I've written myself out of the future, and no longer think I'm worth trying to save.

Lack of self-care - refusing (or resisting) washing or changing clothes is pretty common. I've lately gown a Duck Dynasty-style beard, but it's not because I don't care; shaving (or being shaved) just plain hurts now.

Isolation - refusing to leave the house (if it's possible) or see visitors is a sign of disengagement with the world

Expressed lack of self-worth - the patient who says, "My life is a waste" is clearly in trouble.

What can you do? Again, the first priority is letting the medical team know. This is where keeping a journal can be vital.

Don't nag, plead, or cajole. You'll run into an almost reflex resistance, and may strengthen the behaviour.

Set boundaries. Don't accept careless personal hygiene when the patient is capable of taking care of him or herself. You have to live in their company; be firm, and don't accept slovenliness out of either pity or a desire to avoid confrontation.

Be positive. For whatever the patient can still do to contribute to the household, be generous with praise. Don't let it sound condescending, but recognize the effort and what energy it may have cost.

Finally, and very importantly, remember that this is not about you. Your patient may try to personalize the fatigue and attendant depression, but it's only because you are the nearest target.

But you didn't make him or her sick, and you're doing your best to help. Don't let anyone, even (and especially) the patient, take that away from you.

I have another blog, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Mick Jagger) and a short commentary. 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 243 - Counting It All Joy {FMF}

I'm guest-posting today at Kate Motaung's Heading Home, the home site for Five Minute Friday.. Please drop by!

The word this week, as the picture below may tell you, is JOY.

Here's a hint...joy is nothing else if not intentional, and pain is the lens through which the light of compassion is focused.

And here is the musical inspiration...

I have another blog, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Mick Jagger) and a short commentary. 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 242 - When People Say The Wrong Thing

We're linked with Messy Marriage's From Messes To Messages. Please visit Beth's wonderful blog for some great marriage resources!

When you're a caregiver for your spouse, people want to help. Usually, they try to help with encouraging words.

And sometimes they choose the wrong ones. Please understand that the sample comments listed below are presented with no intention of disrespect. They were just the wrong thing said at the wrong time.

"God is testing you." - Gee, I hope He grades on a curve!

"This must be bringing you closer together." - Yes, wiping someone's back end will do that.

"One day you'll see that this has been a blessing." - More blessing like this I don't need.

"God is  on your side." - If this is God being with me, I'd hate to piss Him off.

"Just fall into Jesus' arms." - How do I do that when I've got to stand up for my mate 24/7?

"I'll bet you're glad you have insurance." - Want to see my credit card bills?

"If you prayed harder you'd have a healing." - And if I prayed harder I'd need knee replacement.

"Why don't you get rid of your pets so you can concentrate on the person who means the most?" - Sometimes the dogs are the only thing that keeps us sane.

"I know a faith healer..." - You think we haven't TRIED that?

"I know someone who can cast out demons..." - Thanks, but, uh...no. Bring that to my spouse and the demons won't be the first thing cast out.

In replying, you've got to remember that the speaker means well. It's just that they've got no filter in this situation, and they're telling you what they imagine they'd like to hear. You can't be mad at someone who's living in an echo chamber and doesn't realize it. (Well, you CAN, but it's not productive.)

Another thing you've got to keep in mind is that there's no use arguing. The comment that you can't abide comes from a place of sincerity, and if you speak in opposition, you'll just force a defence. And you may hurt the feelings of someone who really does care.

What's the best thing to say? In my experience...

"Thanks so much for caring, and I'll think about what you said."

What sort of unsuitable remarks have you heard? What kind of reply do you think is best?

 I have another blog, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Mick Jagger) and a short commentary. 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 241 - When The Caregiver Gets Sick

Sick happens, and it even happens to caregivers.

It's really hard when you're the caregiver to your husband or wife, because you really can't take a day off.

So what do you do when the flu strikes? It's not an easy thing to deal with, but there are some things that might help. Some are proactive, things you can do now.

• Keep your spouse involved in self-care for as long as possible. The more the patient can reliably do for him-or-herself, the less of a burden it will be when your energy and ability is limited.
• Keep your spouse involved in household chores as possible. Some patients will push to play their role in the household, while others will relax into a dependent role before it's situationally necessary. The latter should be forestalled, for the practical reason that their best efforts may be needed, and for the caregiving reason that premature dependency is a true morale-killer.
• Write stuff down. You may be able to remember medication schedules, for instance, but at the time you need to call in outside help you may not be able to communicate them effectively.
• Have an emergency reserve. Make sure you keep a week's supply of food and meds on hand. And have some cash available, if you need a friend or neighbour to shop for you.
• Don't be ashamed to ask for help. If the patient no longer drives, and you're too sick to get the groceries or prescriptions, have a list ready of people whose assistance you can request. Ditto for help in the home; if you need it, you need it, so this is yet another reason for caregivers to maintain their own life, and their own friendships. There's nothing so precious as a friend who will come into your house and change a soiled adult diaper without complaint, when you just can't.
• Be careful of exposure. Your spouse may have a drastically compromised immune system, so if you have something that can be highly contagious, take precautions. It may hurt not to kiss your husband or wife goodnight, but it's better than leaving him or her with a life-threatening illness.
• Have an emergency plan. If you have to be hospitalized, is your spouse well enough to be left alone, with a friend to check in regularly? Or will you need a place that can provide the level of care needed, anything from a friend's house to a temporary stay in a care facility. It's too late to organize this when you've just called the paramedics because you're too sick to move.

What have I missed? What can you add?

 I have another blog, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Mick Jagger) and a short commentary. 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 240 - And God Is Still Good {FMF}

Back again with Five Minute Friday, the timed keyword-driven writing challenge hosted by the wonderful and graceful Kate Motaung. Thank God for Kate!

This community is a lifeline for me.

I'm forced to write ahead of time, and will try to edit around this week's word when it's revealed. Not doing too well, physically.

(The word is CRAVE. This is going to be tough. But it's worked in at the end, and I think it kinda fits.)

And so...

It's been another bad week, and I've lost more ground than I thought I had left to lose.

Aside from the normal run of vicious abdominal pain and nausea (anyone want to finish my dinner) and the Glories of Incontinence (can anyone spell D-E-P-E-N-D-S?), there are some new things...

Dry heaves that are so physically trying that Barbara thinks that this is how I will die, overstressed by the spasms. I don't disagree.

And pain in the long bones and spine, so bad that I can barely get up from a sitting position (getting up from lying down takes minutes), and need to be half-lifted from the bath. Please pray for Barbara's back.

She thinks it may be a metastasis to the bone marrow, and that's possible. There's no way to be sure, absent tests for which we can't pay, and on the whole...I'd just as soon not know.

But God is still good, and always has been

I have a wonderful wife, and a pack of rescued dogs who will help me sit upright when I try to pass out. If I collapse outside they will huddle around me to keep me warm. If I can't walk they will drag me back to the house.

I have lovely friends (yes, YOU, who are reading this!) whose grace-filled comments on this blog keep me going, keep me wanting to witness to the good that is still in life.

I have a sheltered place to sleep. We can't really afford to heat the house, save Barbara's bedroom, but even in the colder areas it's not that bad. So many people, even in our wealthy land, have so much less.

I have nutritious and safe food, and so many people in the world do not.

I have books and DVDs, which I can appreciate with new eyes. There's both strength and hope to be found in the reboots of Star Trek and Star Wars. Thank God for J. J. Abrams and his crew!

I have hope. Perhaps there will be a healing miracle, and I do what I can to keep my dreams alive. It may not be much; it may be laying out the pattern for an aeroplane part on a piece of steel, a part that I do not now have the strength to cut out...but maybe one day, I will.

And I have a purpose, which is made manifest in this blog. Life is still worth living.

I can appreciate the smile of a happy dog, Barbara's laugh when she sees something funny on television, the shimmer of brightness in the instant before the sun peeks over the Manzanos, the mountains to the east.

I can appreciate the ability to do something, no matter how small, that moves my dreams forward, without the need to compare myself to those who have far outdistanced me in shared aspirations. And I can applaud their successes, while savouring my own.

This isn't me. This is God, and His Grace, showing me that my cup is not half empty, and not even half full.

My cup of delight and joy is filled to overflowing.

I once craved a return to health; but there is fulfillment in being exactly where I am supposed to be.

Here's the music for this week...for no other reason than it's been running through my head!

 have another blog, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Mick Jagger) and a short commentary. 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.