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Thursday, February 15, 2018

Your Dying Spouse 444 - Caregiver's Shame (Barbara) {FMF}

Caregiver's Shame, the Chronically Ill can reduce the shame

Folks, it is Real.   Long term caregivers experience more shame then they allow the outside world to see.   The outside world is divided into categories: public and private.   Public is any Tom,  Jane,  or child that could judge the Caregiver's home condition without enough information.  Public isn't just church,  work, or neighbor, it can include family and friends. Private is under the Caregiver's own roof.   Private includes the long-term person, kids, anyone living in the household. Private also may include the caregiver(s).

Each situation of caregiving is different,  but one fear is true regardless,  when life gets out of control, the fear of judgement creeps into the caregivers mind.

Chances are the caregiver saw months before or years before what future living accommodations would need changing,  what finance decision would need to be take care to protect assets,  what legal documentation would need to be put into place and safely kept, what lifestyle adjustments would need to occur so daily life would be easier for both the long-term person and all living in the household,  etc.

However,  the long-term person doesn't look at life through the same lens.   The focus is what they want now, the future is too far away.   And the focus of both parties is conflicting.  Neither is wrong but as with all conflict there is neutral ground.

I recognize both parties are losing much due to the illness.   I need to be straight forward here,  the long-term ill person needs the audacity to get through each day.   However, cooperation with the caregiver must be a focus as well.  If the ill person stands in the way of the Caregiver's preparation either the caregiver will stop preparing and future life will be difficult to handle,  or eventually the caregiver will move on with life and the ill  person will be left behind.

The caregiver that sticks it out, that is making due and daily life is spinning out of control, will harbor many statements of could have,  would have,  should have.   The one statement of fear is: under my current situation I can't get help,  I'll be judged for the living conditions or legally required to get them changed.   This then spirals more shame and fear thoughts.

I have to say, I have no profound fix for a caregiver faced with the shame dilemma.  I do ask that each of us consider that as we mature there may come a day when circumstances places us as the ill person, acute or chronic.   Someone will be deemed your caregiver,  how will you handle the relationship?

Jesus told us that we can do greater things than what He had done, what does that mean? If we look with His heart with His eyes with His understanding, do we see more than the angels see?

Music from Amy Grant, If I Could See (What The Angels See):

If you're interested, you can find Andrew's books on Amazon.

Thursday, February 8, 2018

Your Dying Spouse 443 - Barbara on Caregiver Guilt {FMF}

More from Barbara...and here's a picture of her, with her BFF, Bray...

Sick caregiver, guilt is part of the duty.

It's been a difficult week.   We live on 1 1/3 acres and a corner lot. One of our neighbors is a prominent employee of the police department with a military background.   I say this because he's typically doesn't get alarmed about much. But Sunday Andrew collapsed at the drive-in gate.   Our neighbor was on the roof and heard moaning and immediately ran to Andrew's aid.  He was not prepared for Andrew bring up blood & his legs were paralyzed, a daily occurrence we've become accustomed.  (With the high levels of pain,  the nervous system shuts down stops function to non-vital body parts and places the energy to vital body function,  this includes certain brain function.) The neighbor called 911 and got immediate response because of his position.

I was grocery shopping and received a call from the wife,  luckily I was on my way and about 6 miles to the house. Once I arrived,  education of all present commenced.   The neighbor left everything in my capable hands. Thankfully,  I have POA and DNR (power of attorney and do not resuscitate) for situations like this, of course I had to prove it. EMTs helped get Andrew into my truck using a sheet as a sling.  Through the processes Andrew kept passing out for 1-2 minutes,  something I'm accustomed.   Each time I had to win his confidence to know he was safe (PTSD).   I finalized all the necessary paperwork for the EMTs liability,  while they tried to thoughtfully console me.   At this point,  actually it is my job to console them,  they feel helpless since there is nothing they can do.   Transporting Andrew will kill him or leave his body in a state of shock that once at the hospital the health professionals would try to counteract.   Those efforts would only increase Andrew's issues and potentially he would not leave the hospital alive or in a state that I,  his only caregiver, could not handle.

So after 3 hours Andrew could slowly walk on his own with a cane, minimally helping with dog duties.  

The remainder of the week, I had to work long hours arrive home an hour before bedtime duties for Andrew.  Needlessly say,  I did not eat as healthy as my body is accustomed.  So now I have the upper respiratory virus again.  Needless to say caregiving had not been my forte,  and thankfully must things Andrew can still do on his own.

No, the guilt of not caring for his needs never goes away, ever. And Andrew's preferred living conditions makes it impossible for extended family and friends to assist. So how do I now keep guilt at a minimum?   Honestly years & years of practice and I've grieved so much all the way through these almost 16 years that part of me is numb.

I've learned how King David felt for seven days (2 Samuel 12:16-23), except mine has been extended and a harsher reality has been endured. And of course,  why Andrew's condition exists is not an action of our own but another (a botched surgery).   Nonetheless,  the grief have occurred mostly, and deliberate action of survival moves each day to the next. That's not to say,  I still get stressed,  mentally overwhelmed,  and physically exhausted. I do!

Arriving to this point is a gradual process, emotionally painful process, and a faith trying process. The key,  is to allow the depth of grief occur,  don't let others, even health care providers, tell you to buck it up or stop being a martyr.   The loss is real and the weight of duty immense.   In your grief,  you have to ask God all the doubt questions on your heart and mind,  the key is to ask and NOT  dwell.   If you must dwell,  then dwell in the shadow of His Wings and be ministered to by His angels of comfort and peace and quiet and stillness of mind. I'm very blessed that God gave me such refreshment in my sleep. 

Music from Amy Grand and James Taylor, Don't Try So Hard.

If you're interested, you can find Andrew's books on Amazon.

Thursday, February 1, 2018

Your Dying Spouse 442 - From Barbara {FMF}

The secret of being a long term caregiver...

I am a guest on Andrew's behalf today.  An author, I am not.  A wife,  friend,  confidante, caregiver, and provider I am. There is that phrase again,  "I am".  Why is it important that self definition is one of the first anyone gives to a group, or a new person, other than people who are proving general daily services at the grocery,  restaurant, gas station / convenience store,  etc.   In daily services we accept our behavior is enough to define us.  Yes, how we interact is our definition. Only after we are a known introduced element,  do we justify our existence.   Looky here, see me, I exist, I am real.   There's that statement again. 

In a world, a universe were the smallest element, particle, and electrical current make a daily contribution without needing recognition,  we who are made up of many of these find it necessary.  As though the definition is what justifies our existence. 

Does definition justify our existence?  Or is it how we exist that justifies our imprint on the invisible legacy we leave everyday?

I believe it is the latter. Most people,  only influence the small space around them.   Few people have immense visible global impact.  In either case,  the first step of impact starts with the small space around us. 

Funny, matter does that all day and all night long.  Depending on what matter touches a favorable or unfavorable reaction is created. Oh,  lesson 1, even positive energy can collide with positive energy causing friction and distance. This distance creates space for other interaction. Then on the other hand,  positive and negative energy can meld together and create a favorable or unfavorable new influence. Even the melding action at first has counteractive responses at first. 

We are called to be Light in this world.  Small i am reflects of the I AM. To be a positive influence in the small space around us.  To be present, and only defined by our actions. Not our stereotype.

So,  my true and first i am statement is: I Am Be Loved of God,  I accept and acknowledge His Providence in my life and No one can take that from me. 

This is the secret of being a long term caregiver. Without the Truth of our existence peace in care-giving doesn't exist. I'm not saying it is easy,  it's not.   Your peace comes from a loving response inside yourself first. Love begets love. 

Our musical selection is Ferde Grofe's Grand Canyon Suite; do know that it's about 32 minutes long, but well worth it!

Andrew is is poor shape, and would be grateful for your prayers.

If you're interested, you can find Andrew's books on Amazon.

Thursday, January 25, 2018

Your Dying Spouse 441 - The Last Lesson {FMF}

Kind of doing bad, and having to recycle a comment I made on a recent Books and Such Literary Agency blog post, I Didn't Sign Up For This. I'm not sure how long I can even keep this up.

"I don’t know what I have to offer here, and am tempted not to try. But still, in what may only be a bow to ego, here goes.
* Yeah, I didn’t sign up for this. I didn’t sign up for an illness that would destroy everything I worked for, leaving me a bloody passenger in life, unable to give my wife more than prayers. I didn’t sign up for depending on the kindness of strangers to carry me back to the house when I pass out in the yard. I didn’t sign up for incontinence, or for nights of terror that seem to last forever but pass too quickly, bringing a dawn of exhaustion. I didn’t sign up for the blood or the bile or things far worse than these.
* But I’m here, and I have to believe that my faith in God means something, that when I say “I’m OK” that I am REALLY OK. I have to believe that if the only thing I have left to offer is love, that it’s a love worth giving, and receiving.
* So I will keep going, in faith and hope and love, for I have learned a thing. My dreams of success in writing and other things meant nothing; they are as dust on the winds of emotion. The only thing that ever mattered was saving lives, and love, and gentleness in the Scylla and Charybdis of madness and wrath. Love was the only thing I ever had in me that was worthwhile, through violent action and hugs and encouragement and, yes, through writing.
* So, yeah. I DID sign up for this. And I’d do it again, no hesitation. Here am I; send me."

I loved Randy Pausch's The Last Lecture, but he got it wrong. Life isn't about fulfilling your dreams. It isn't about living well.

It's about loving with all your heart.

I want to go home, it hurts too much to go on; but there is love yet to give, and no room for surrender. (Surrender is the FMF prompt this week.)

I am trying to work through replies to your comments last week; my body is fighting me now. Please know that we treasure your comments, and read them all (or they are read to me).

For no reason that I can discern, the music this week is from Steve Winwood, with Valerie. Maybe it's just for fun, as some things should be. I hope you enjoy it!

If you're interested, you can find Andrew's books on Amazon.

Thursday, January 18, 2018

Your Dying Spouse 440 - Hope At Midnight {FMF}

I can only give you this, a comment I made on a Books And Such Literary Agency blog post...

"For what it may be worth, to be filed under ‘keeping hope alive’, I am finding that as my situation grows more hopeless, hope itself burns all the brighter to warm and illuminate my days.
* Yeah, that sounds really stupid. A mentally lethal overdose on The Power Of Positive Thinking.
* But there may be something deeper and true at work; it’s hard to breathe, and I’m grateful for every breath. It’s hard to move, and every step is a small miracle. It’s hard to write, and the rationed effort means every word has to have meaning.
* What if all these together, the gratitude and the wonder and the exacting need discovered accidentally and at painful cost, are the soil and the water and the sunlight of hope’s nurturing?
* What if it means that hope is not what we have, but what we become?"

- left as a comment on the Books and Such blog post, "There's Still Hope For New Writers!"

I guess it means that hope has to be intentional, which is the Five Minute Friday prompt this week.

Please know that I treasure your comments. I read (or have read to me) all of them, and this week I was able to answer most. I will keep trying, but please have patience.

And here is the best scene from Lord Of The Rings: The Return Of The King. I take great comfort in it; I hope you will, too.

The journey doesn't end here.

And music, from the same source...Into The West. Barbara will probably have this played at my funeral. Don't know if she'll be able to sing it (she has a lovely voice, and sang Amazing Grace at our wedding).

Still, I don't want to die. Please help me to be brave?

If you're interested, you can find Andrew's books on Amazon.

Thursday, January 11, 2018

Your Dying Spouse 439 - Final Thoughts, Maybe {FMF}

I sure don't want this to be the end. But now every word has to count. I'm choking on every breath, and it's ugly.

Coming to the end of my strength, barring a remission, and have to cannibalize another blog comment I made. Please pardon my inability to respond to comments at the moment; I treasure them all, please know this!

You guys have brought meaning to the end of my life.

This is my version of Emily Dickinson's "The Chariot", perhaps her most famous poem. I hope that she'll forgive me (and that you poetic types will, too).

Because I could not stop for Death,

he kindly stopped for me;
and then drove on with intaken breath
on facing my Glock 23.
He wanted to offer the boon of rest
my labours now complete;
but my blood I shed, merely a test
to show that I won’t retreat
The mission ahead, now blinding-clear
to attend to tasks undone,
to face hell’s fire with no fear
and outrace the setting sun.
The heavenly multitudes wish I’d quit,
they ache at cheering the dying.
But work remains and I’m still fit
to kill myself in the trying.

This originally appeared on a Books and Such blog post, as a comment.

In fairness, here's the original poem from the Belle of Amherst:

Because I could not stop for Death
He kindly stopped for me
The carriage held but just ourselves
And Immortality

We slowly drove, he knew no haste
And I had put away
My labor, and my leisure too
For his civility
We passed the school where children playedTheir lessons scarcely doneWe passed the fields of gazing grainWe passed the setting sun

We paused before a house that seemed
A swelling of the ground
The roof was scarcely visible
The cornice but a mound

Since then 'tis centuries; but each
Feels shorter than the day
I first surmised the horses' heads
Were toward eternity

Music from Mike And The Mechanics, with All I Need Is A Miracle.

If you're interested, you can find Andrew's books on Amazon.

Thursday, January 4, 2018

Your Dying Spouse 438 - No Hope But This {FMF}

There's no hope now, but there is this (and I'm too trashed to do more than lift a comment I left on another blog, sorry). It's the best I have, and all I have.

"I’m finding that for me, success equates to discipline, because that’s what keeps hope alive in one’s darker hours. Getting pneumonia over the Christmas holidays, on top of everything else, I’m in no little danger, and things are so unpleasant (putting it mildly) that it’s easy to feel abandoned by God, and to metaphorically fold my arms and just stop…stop writing, stop caring, stop nurturing the hope that there may yet be hope.
"That way leads down a path from which, eventually, there’s no return, because it leads to a magnetically false God, one whose promises are cherry-picked and whose fell warnings are cast aside, and in whose inevitable failure is the seed of faith’s destruction, hope’s abnegation, and the withering of love.
"So success is holding tight to where I am, writing when I don’t want to write (like right now), forcing myself to keep caring because I cared once, and choosing faith, not because it ‘works’ but because it’s only truly defined by the chiaroscuro of pain’s deep shadow." (This originally appeared as a comment on the Steve Laube Agency blog, For The New Year: Define Success)

I'm sorry that I have been unresponsive to comments, both on the blog and on Facebook. I'll try to do better, but just writing a few sentences is exhausting now.

The Impossible Dream and the final scene from Man Of La Mancha are the accompaniment. Hope you don't think it kind of self-serving; I just like the song.

If you're interested, you can find Andrew's books on Amazon.

Tuesday, January 2, 2018

Your Dying Spouse 437 - Almost Gone

Almost died today. Couldn't breathe, and as the world dimmed around me I could see The Light.

Didn't go. Still too much to do, and besides, service dogs Ladron and Sylvia were beating the crap out of me.

So I am still here. Pretty shook up, and in too much pain to write more, let alone select music.