Your Dying Spouse 203 - Caregiver Fail

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

This is the story of an unintentional caregiving disaster. It;s been disguised beyond recognition, while keeping the principle to be illustrated intact.

There was a couple, Bob and Mary. They were in their late forties, no kids, and enjoyed the advantages of dual (but linked) careers. And then Mary developed cancer.

She was in good physical shape, and had a good care team. Bob was incredibly supportive, arranging his life around her needs with nary a complaint and consistent good cheer.

But the cancer was vicious, and soon Mary had to leave the job she loved. Her strength was failing, she was in constant pain, and the experts were pessimistic.

In the early spring of what was expected to be her last year, mary surprised Bob by saying that she wanted to make a traditional Zen garden, with rock arrangements and a flowing stream (powered by a recirculating pump).

Bob said, "Great! I'll talk to some of the guys from work and we'll get it built for you!"

No, said mary. I want to do this myself. I know it'll be hard, I know it'll take longer. But I want to do this. If you can get the materials I need, and occasionally lend some muscle, that would be great.

Bob was puzzled, but agreed, and watched over the weeks as an old stretch of lawn was gradually replaced with the outlines of a Japanese garden.

And then one day he came out while Mary was working and said, "This is a great idea you had, dear. You really needed something to keep you busy."

See the fail?

Bob didn't get it. The garden was Mary's hook to the future, not work for anxious and often idle hands. It wasn't a time-filler. It was a mission.

The garden was finished by fall, but for a few weeks Mary lost the joy. She felt herself categorized as a patient, as someone to be managed.

She wanted to have something of worth to give, and the garden was her gift, her legacy. It wasn't completely ruined for her, but the joy was stolen for a time period that could never be made up.

Thus, the lesson - your terminally ill spouse is still a human beings, with hopes and plans that may seem irrational to you, but mean a lot to him or her.

It's easy to fall into the trap that your spouse's whole life revolves around illness; it may seem that way to you, given the intensity of care that may be needed, but remember this -

Illness is only a part of life, and the rest becomes far more precious when it might be lost.

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 202 - Strategy For Bad Days

Today was horrible for me, and in many ways worse for Barbara...it being Labour Day, she was home and could watch. There was very little she could do to help.

It was a kind of help-I-am-being-sawn-in-half pain experience, with the added frisson of almost continuous dry heaves.

Well, dry unless they brought up blood.

An ER visit would have been a good idea, frankly, because pain can kill, but not having insurance that was not an option. Against barbara's secure future (without a huge set of my medical bills hanging over her) my comfort and my life are expendable.

So...how might a caregiver cope with a Day Of Pain?

First, Let the professional care team (one or more doctors) know what's happening, and that it's a singularly bad event. Don't worry about 'crying wolf'; most doctors can read the anguish behind your words when someone you love's hurting bad. (And unless the patient's me, if the doc says to head for the ER and he'll meet you there, DO IT.)

Second, make sure the prescribed pain meds are taken at the right time, and in the right dosage. Taking too much at one time can actually make the pain worse.

Third, keep the patient hydrated, preferably with a weak mixture of Gatorade. Avoid soda, as the carbonation can make gas a problem, especially if the patient's doing 'gasping' swallows (taking in a lot of air) as a result of pain spasms.
\
Fourth, only light food, if any. And don't try to force something the patient really hates. Now is not the time to make a point.

Fifth, distraction. We watched "Return Of The Jedi", which we've both seen a million times or so, but it's a nice, friendly place to be, and the fact that I kept passing out didn't make me miss much. (Interestingly, for the bits I was able to appreciate, I noticed things I had not seen before, both in the scene dressing and the action.)

Sixth, kind words. "I'm sorry you're in so much pain...is there anything I can do for you?" is just fine. (And "I know how you feel, because I once had a pain like that when I overdid it at the gym..." is not OK. Don't dream of going there.)

And that's it for now; can't really stay upright any more.

Today sucked. Tomorrow may be worse.

Still worth trying to catch the moment the sun comes up, though, even if I have to crawl to the door to do it.

Your Dying Spouse 201 - Send Me {FMF}

Once again it is time for Five Minute Friday, the keyword-driven weekly timed writing challenge hosted by Kate Motaung.

The work this week is...well, again, I've got to write ahead, because I don't know if I'll be up to writing to The Word From Kate. But if I can, I will try to work it in.

(The word is PATH, and it fits nicely at the end.)

One of the big threats to the soul that arises in a terminal illness is self-pity, and easing into the mentality of a victim.

It's insidious, because heck, dying is uncomfortable, humiliating (incontinence and puking blood, anyone?) and it just plain hurts.

Why me?

Add to that the sympathy you receive...it's well-meant, yes, but it's easy to take sympathy too much to heart and allow pathos to turn into bathos.

But the fact is, while you're dying you should not only be living, you should be serving.

In an effort at a multimedia presentation, here's a clip from the best Christian movie ever made, "Fury", starring Brad Pitt; it's about an American tank crew fighting in Germany at the end of WW2. The scene you're about to see (I hope you do, it's only a minute long) takes place just before the climactic 'crossroads' scene'.

Send me.

We always have something to offer for the ALmighty. He was not created to kowtow to our wishes; we were made to become His companions in eternity...and part of that is the apprenticeship of doing the hard work, here and now.

Dying can limit our abilities, but it doesn't excuse us from the requirement to serve. Bring to the table, or to the fight, that which you can.

Maybe all you can do, stricken with cancer, is to be kind to the wife or husband who's caring for you. Maybe all you can really do is lift his or her spirits with a smile or a joke.

And that looks like nothing, compared to the mission trip your neighbour just took to Upper Volta.

But remember the story of the woman who gave a single coin, which was all she had, as a temple offering. Sometimes all you can give is everything you have.

And why? Why not just sit back and enjoy, as much as you can, what you you still have? Why not be a victim, when you've clearly been beset by a disease that's not your fault?

Again, I'll turn to "Fury" for the answer. This scene takes place a little later than the first one, when Sgt. Collier (Brad Pitt) has been wounded and is being bandaged by 'Bible' (Shia LeBouef).

I believe we're here for a reason; that our lives matter, and that no matter how far we sink, no matter how diminished we become...

We always have something to offer that is a treasure to the Almighty.

Here am I. Send me. On the path You have chosen.

Thy will be done, and I will do it.

I strongly urge you to see 'Fury'; it is not always comfortable to watch, but it depicts war and warriors with unflinching accuracy. The faith expressed is unambiguous (and intentionally so, according to the people who made the film).

And...for what it's worth, when I'm dead, Barbara has said that to bring me back alive for an hour or so all she has to do is watch this film, because I'm so similar to Sgt. Collier that it's spooky.

And that is probably the only time I will ever be compared to Brad Pitt!

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 201 - A Patient's Prayer

We're linked with Messy Marriage's From Messes To Messages; drop by or great marriage wisdom!

Oh Lord, I don't like being sick, but your will is done through the world. I don't understand it, but with Your help I can accept it.

Please help me be grateful for the blessings that are still in my life, and please help me to grieve what I have lost, if grieve I must, without bitterness.

Please help me to look ahead, even if for a day. Keep me from the endless reminisces that fix my mind on what seems a brighter past, for that past is a painted fiction, and today will always seem darker in comparison with such fantasy.

Please keep my gratitude for my caregiving spouse foremost in my mind, even when I am in discomfort and pain. Please help me keep my words moderate, and my temperament even. Please help me, Lord, to filter my words before I say them, for the most important words in life and marriage are the angry and bitter ones we choose not to say.

Please help me to give an accurate description of my condition, neither minimizing nor exaggerating. My caregiving spouse needs to know the truth, even if it's ugly, but should never by manipulated through pity compelled by exaggeration.

Please help me to do what I can for myself, and to try every day to keep my condition to as little of a burden as possible. Please keep me from being impatient or demanding; my spouse has a life, and I must respect that not everything revolves around me.

Please help me not to shy away from the difficult questions that lead to a loss of independence. Such things, perhaps, must be, and while optimism and hope are needed, denial only makes the road harder.

Above all, Lord, please help to to keep in mind that Your Son preceded me in Death, nd that in the Resurrection He has paved a way for me; a road that I need not fear.

Amen.

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 200 - The Nose Knows

Wow...two hundred posts in this series. That's kind of a milestone.

Caregivers, this is going to be hard for you to hear...but what you smell like can really make a difference in the life of the person for whom you're caring. For good, of for bad.

I'm not going to address common, basic hygiene. I assume you're all there, and not washing once a month or so.

Nope. This is about what you eat. You aren't what you eat, but you do smell like it. And you likely don't know it.

The biggest culprits are garlic, onions, and alcohol. The body looks at these as being, at least in part, as toxins, and tries to flush them out as quickly as possible...and that means through the pores as well as the usual paths.

Not that these three 'foods' are bad for you...not even alcohol, which is quite beneficial in moderation. (During WW2, citizens were asked to donate blood every week, and to drink red wine between donations. And if you live in France and don't have wine with each meal, your neighbours will think you quite mad.)

Where was I?

Oh, right. The foods may be beneficial, the body may be over-reacting, and it may all be innocuous, except that you might smell pretty bad, at least to someone who's fighting nausea and loss of appetite anyway.

Aside from making your caregiving an uncomfortable experience, it can also build a kind of distance, if you're not careful. Physical revulsion (and that is not too strong a term, believe me) brought on by illness can lead to an emotional wariness. Part of it is a natural outgrowth and is subconscious, but part may be "he/she knows I'm sick and nauseated, and should know that I can't take this Mediterranean diet stuff!"

And the patient for whom you're caring may well be too polite, or too proud to tell you.

So...for what it's worth, here''s my advice - if you're caregiving for your spouse, ask: "Does what I eat make me smell...uncomfortable...to you?"

Believe me, this kind of gracious approach can do wonders for your relationship...and for the quality of time together you may yet have.

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 199 - Phoenix Rising {FMF}

Once again it is time for Five Minute Friday, the keyword-driven weekly timed writing challenge hosted by Kate Motaung.

The work this week is...well, I don't know what it is. It has been the worst of weeks, and I am writing ahead of time because I can. Yesterday I lost a quart or more of blood, and I did not know who Barbara was when she came home. I was giving the dogs pizza and beer for dinner. (So those to whose comments I did not reply, please forgive. At least you didn't get a rugby dinner. Well, almost. Barb grabbed the beer.)

(OK, the prompt is LOYAL.)

So, it's bad. prospects are bad. Outlook is grimmer than before. Today I went down outside, and the girls, Syl and Ladron, pulled me in. Blood trails and drag marks. I could not even crawl.

But I still have a dream, and I am going to share it with you.

It's called Tokyo. 2020. The decathalon.

When you stop laughing, yeah, I'm way too old, and way too sick, and I can't hardly even walk. This is stupid, right? Like, delusional.

I mean, I'm incontinent. Want to know how many loads of laundry I've done today? No, you don't.

But I have faith.

And I am willing to hurt more and bleed more and sleep less than anyone else. God's got to count that for something.

Blame it on the dude who won in Rio. Before the 1500m, he said that he'd push hard enough to put himself in the hospital.

I'll see that, and raise it. I'll push hard enough to put myself in the grave.

Why? Well, why not?

Do I need a miracle? Sure. I need to be able to walk, and to stop the disease, and to make all those malignant cells act normal.

But in the meantime I still have strong arms. I can exercise those until I pass out.

And when I wake up I will keep going until I pass out again and I will wait for my miracle.

If you're going to dream, dream big. If you're going to die, die hard.

Better to die on the road to Tokyo than in some hospital.

Call it hopeless, yeah. But I have hope, and that's all I need to make it to tomorrow.

The phoenix is going to rise from my ashes. I'm going to roll the stone away.

And this...when I get there, I will be sporting my one and only tattoo, on my right bicep.

FMF

So, all you LOYAL FMF'ers, you're on my TEAM. I pick you

ALL OF YOU.

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 199 - Hold On to Your Dreams

Once again it is time for Five Minute Friday, the keyword-driven weekly timed writing challenge hosted by Kate Motaung.

The work this week is...well, I don't know what it is. It has been the worst of weeks, and I am writing ahead of time because I can. Yesterday I lost a quart or more of blood, and I did not know who Barbara was when she came home. I was giving the dogs pizza and beer for dinner. (So those to whose comments I did not reply, please forgive. At least you didn't get a rugby dinner.)

So, it's bad. prospects are bad. Outlook is grimmer than before. Today I went down outside, and the girls, Syl and Ladron, pulled me in. Blood trails and drag marks. I could not even crawl.

But I still have a dream, and I am going to share it with you.

It's called Tokyo. 2020. The decathalon.

When you stop laughing, yeah, I'm way too old, and way too sick, and I can't hardly even walk. This is stupid, right?

I mean, I'm incontinent. Want to know how many loads of laundry I've done today? No, you don't.

But I have faith.

And I am willing to hurt more and bleed more and sleep less than anyone else. God's got to count that for something.

Blame it on the dude who won in Rio. Before the 1500m, he said that he'd push hard enough to put himself in the hospital.

I'll see that, and raise it. I'll push hard enough to put myself in the grave.

Why? Well, why not?

Do I need a miracle? Sure. I need to be able to walk, and to stop the disease, and to make all those malignant cells act normal.

But in the meantime I still have strong arms. I can exercise those until I pass out.

And when I wake up I will keep going until I pass out again and I will wait for my miracle.

If you're going to dream, dream big.

Better to die on the road to Tokyo than in some hospital.

Call it hopeless, yeah. But I have hope, and that's all I need to make it to tomorrow.

And this...when I get there, I will be sporting my one and only tattoo, on my right bicep.

FMF

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.