Personal Update...

 This is a month I never wish to repeat.

C*vid finally made a house call, despite all our mask-wearing, social-distancing precautions...

Thankfully I am doing well now, but it knocked me down and out for the last few weeks.  And just for the curious, mine was not a normal case (is there such a thing?)  I truly thought I had a severe case of food poisoning!

I will spare you the details, but the gastric distress was immediate and abundant... within days I was in the ER dehydrated, unable to even keep water down.  Not Fun!  But there was no respiratory involvement, no shortness of breath, no high fever, no cough and no congestion... for this I am so thankful.

And even more thankful that my case was isolated.  No one else in the family was affected.  So, so thankful.

We were surrounded by the prayers of so many.  Meals were brought and left on our truck's tailgate, uplifting texts and cards encouraged us, and one intrepid and loving daughter braved the quarantine and dove into the midst of the sickness to help and love us.

So very, very Thankful.

Living with Pancreatic Cancer

Be kind to every one you meet.

It is more true every day that I live... For everyone is bearing burdens, some harder than we can even imagine...

Cally Adams is an oncology nurse and she knows about cancer.  In the twisted way of life, her sister, Sarah, was recently diagnosed with pancreatic cancer.  Cally has been by her side throughout treatment, and not long ago, she shared her heart in such a transparent way.  The resilience, the shock, the love and the heartache.  Oh and it just breaks me... if pancreatic cancer has touched you, then perhaps you have walked in her shoes and  know what it means to be living with purpose and intent even in the midst of the nightmare...



"I know what it’s like to feel like you’re in a nightmare every single day. And that somehow, between feeling like you’re living a nightmare and hoping for a miracle, you are supposed to continue to work, pay bills, eat well, exercise, sleep well, be kind and understanding of others and their needs, answer texts and phone calls, keep people updated, make appointments and keep them, be a good wife and mom to your toddler – and oh, put a smile on your face even when your heart is breaking."

                                                                               ~ Cally Adams


Living under the black mantle of pancreatic cancer brings a heaviness, a bleakness, that few talk about.  Sometimes there are no words... just shoulders to lean on and arms to hold... And the pain is not exclusive to the cancer warrior.  So many are walking out the grief of other battles... perhaps the shadow of divorce, or an child's addiction, or the wrenching loss of a loved one...

Lifting up all the Sarah's and the Cally's and the loved ones fighting these Battles. Every. Single. Day.  May there be Light and Grace and Hope to carry you through the Heartache.

You do not battle alone.

Always,
Jane

I Would Do it All Over Again in a Heartbeat!

Well, yes, I would do the 31 Day Challenge all over again...

But what I really meant was the Grace Gift of being mom's daughter.  Growing up under her tender care, thriving under her love, knowing I was adored always... I would wind back the clock and be called daughter again in a heartbeat!

And that includes even the heart-wrenching pancreatic cancer journey that carved deep sorrow into our families story, and brought me into the unexpected role of caregiver.  Of course I would change it if I could, but knowing that our days are cherished and numbered in God's Sovereign Plan, I would do it over still...

For this was a journey of love and joy on so many levels... My heart agrees with D.G. Fulford and her sentiment about being at the right place at the right time doing the right thing.  There is boundless gratitude for the gift of being with mom through it all, and not one moment of regret.

Still, the heartache cannot be denied.  It is all part and parcel of the terrible privilege of caring for a loved one with a terminal illness.

It is a truly humbling privilege, fraught with shadow valley lows and mountaintop highs.

I miss mom. Every. Single. Day. There are moments when I can close my eyes and almost...almost feel her back in our world.  Her head tilted to the side, smile in her eyes, laugh on her lips.  I would run in for a hug and just breath in her sweet fragrance and sit for hours and hours catching up...

 

 

 

 

 

 

 

 

 

 

 

It was the most sacred honor to walk this journey with you mom...

 

God's Riches Poured out in Abundance to Cover our Greatest Need

for

Grace is bringing this weeping Caregiver through the Shadow Valley

into Blessing Overflowing...

 

 

We will always, always miss you...you already know that...

But you loved us more than well enough to get us through.

And as our hearts turn towards Home

we can barely wait for the Sweetest Reunion of All Time...

  

  

All Together Again!

 

He is Faithful to Keep His Promises

and it will be Grace Amazing...

 

You have changed our sorrow into dancing.

You have taken away our sackcloth

and clothed us with joy.

You wanted us to praise you and not be silent.

LORD my God, We will praise you forever!

                                            ~ Psalm 30:11-12

 

 

 

Until that time, we carry on as you taught us...

 

 

Love you Always and Forever,

                Jane 

 

It is a Privilege...

Somewhere along in every journey, we are destined to meet kindred souls who make a difference in our story...

Glenn and Cheryl are two such friends who have touched me deeply.  Although we've never met in person, I have found an abiding inspiration in their journey.

As we near the end of our 31 Day Challenge on Grace for the Caregiver here are a few of his thoughts on Caregiving...

"I have found since we began this journey in Nov 2012, that the little things that inspire the soul are really important to the person fighting the battle. To Cheryl, sunsets and sunrises are gifts of beauty that raise the spirit for the next battle, the next day. A snow fall here makes everything pure and white, and she loves to look out over the fields to see the fresh little animal tracks that were made during the night. We have a little red fox that teases our dogs every day, and Cheryl actually gets a kick out of that. So the first day of her chemo in January, I found a little plush red fox at the gift centre and took it to her. It is her constant companion now both day and night. I firmly believe now that one of my jobs, no, one of my privileges as her care giver is to help her find these spirit and soul-lifting things... Glenn"

So beautifully said...and I believe it is the heart-song of Caregivers everywhere.

It is truly a privilege of immense proportions

to walk out our love every day along this journey.

 

 

Run...Don't Walk...to the nearest Spa!

Do you have a Caregiver in your life?  A truly giving, compassionate, funny, selfless, amazing, wonderful person who loves you to pieces and does all they can to walk you thru this journey? 

You, the Cared-For, are in a precious position...I know the illness, the trauma, the path you walk is not easy, nor is it of your own choosing.  You feel blessed to have this loved one in your life, granting peace, companionship and hope to you no matter the cost to themselves.  And so, yes, despite the circumstances of your illness, you are in a precious place...

You can extend the most beautiful Grace to your Caregiver.

For it is within your power to leave sweet memories for them, moments they will treasure for ever.

Here's how...

Find something to do together that brings joy to you both, AND, has nothing to do with your illness.

Hard you say?  Not so!

It can be a baseball game, a concert, a trip to the zoo, movies and popcorn, a massage... a gift with no agenda but to spend time together enjoying, not caregiving.  Depending on your strength and particular situation it may take some pondering, but make it a priority to start Legacy Living.

My favorite example is Mom taking me (often) for the most soothing leg massage and pedicure at Cold Water Creek Spa... I absolutely loved the pampering and it was the perfect, non-stressful outing for mom as her strength ebbed.

We went together right up until the last month of her cancer journey.  And it was always her treat.  I think she was gratified to find a way to thank me... I was blessed beyond words to have the time with her to relax, laugh, and live life "normal" away from the harsh reality of the cancer treatment.

And massage is such a great antidote for the Caregiver Stress and Burnout that is inevitable when journeying with a terminal illness.

Run...Don't Walk... to the nearest Spa.  Make memories of peace and relaxation and laughter today with the one you love.  Let the pampering begin!

It is Extending Grace in the most Beautiful Way. 

P.S.  Friend Alert!  Do you know someone who is selflessly tending the needs of a loved one?  Are they becoming over-stressed, burdened-down, and neglecting themselves?  Give the Grace Gift yourself...take them out, treat them to "normal," pamper them special.  Be the Blessing. 
  

The Right Place at the Right Time doing the Right Thing

Earlier this month in our 31 Day Challenge, we were privileged to "meet" Phyllis Greene and listen as she shared her perspective on being the "Cared-For."  She admitted her struggles and frustrations with aging and coping with a terminal illness, yet her story was one of uplifting encouragement as she graciously blessed her daughter for the gift of being her Caregiver.

Today I would love to share her Daughter's Perspective:

I am the Caregiver

by D.G. Fulford

 

The other day, I was thinking about William Butler Yeats, which was a shock because I'm usually thinking about The Real Housewives of Orange County.  A line from his poem "Easter 1916" kept running through my head:

 

 "All changed, changed utterly:

A terrible beauty is born."

 

All has changed utterly in the past 12 years for my mother, my daughter and me.  What a terrible, beautiful limbo we're in, this intimate and temporary time, glimmering between Before and After.

 

For years, I lived in California, then in a ghost town in Nevada.  Twelve years ago, I picked up my life and moved it back to Ohio, leaving my daughter, Maggie, who was well on her own, way out west.  I became my mother's compatriot, then caregiver after my father died.

 

At first, I didn't understand what my mother meant when she called and said she needed me during Dad's illness.  If you needed help around the house, the last person you'd call would be me.  I am more bohemian than bountiful; not a cooker, not a cleaner.  "Why would she possibly need me?"  I asked a friend.  "Fresh air," my friend said.

 

Being a writer allowed me to stay with my parents during the long winter of Dad's death.  When it came time to leave, I didn't want to.  By then, I needed Mom as much as she needed me.  Having been through a divorce, a failed business and the usual frenetic life of a single working mother, being home felt safe and right.

 

Mom's health was fine for the first few years, but time took its toll.  By her side, I steadied an arm as we went to lunch and brunch and errands.  Slowly our outings turned into a mash-up of waiting rooms, doctors' appointments and hospitals.  Soon we were picking out canes, then a walker, and finally a folding wheelchair.  Now Mom is bedridden.  She suffers from congestive heart failure and her legs don't work like they did.  She is a hospice patient.

 

In her pink bed, in her pink bedroom, you'd swear that if she had a suit on instead of a nightgown, she could be presiding over a meeting with the Franklin University Board of Trustees.  When you see her hunched over her walker, though, attempting to wheel to the bathroom, the truth cannot be denied.  "I hate being an old woman," she says.  And who can blame her?

 

We keep up our routine, Mom and I.  I call her every morning at 9:30, then run out to her house to start the day.  She has 24-hour care now, which eases my hyper-vigilance.  Most of the time, we are free to just sit and talk.  Even at this hardest time, we have had a blast.  We laugh more than we cry as we face the unfaceable together.

 

She is ready.

 

I am not.

 

Over the past 12 years, I have not had a thought that did not contain my mother.  Her life so fills my own that I cannot even think about other relationships.  I doubt that this is healthy, and sometimes weigh the wisdom of my decision.  But as the years go by, I am more and more convinced that I have been at the right place at the right time doing the right thing.  How often in a life do we get to acknowledge that?

 

My friends keep me sane - and I am surrounded by great ones.  They hear when my voice sounds crazy and come to my rescue.  We meet and we laugh, and I feel my dark clouds dissipate.  I spend a lot of time alone, too, which soothes and sustains me.  At night, I put myself away for the day, nesting with my cuddly dog, a bunch of books, my laptop and good old Mr. Television.  The next morning when I speak to Mom, I am ready to go again.

 

In the years that I have been here, my daughter has gotten married and had two glorious sons - Zachary,6, and Nate, 3.  I cannot visit them as often as I like, which is hard - the push and pull of going and staying.  I am always conscious of what could happen, while never believing in a million years that it will.

 

For 12 years, like an anticipatory survivalist, I have been steeping in my mother's sun, absorbing all the light I can.  When our last day together comes, I will be lonely; I will be rocked and knocked to me knees.  When I am ready, I will get up.  My mother's light will guide me.  The terrible part will come to an end.  The beautiful will live on within.

 

 

 

D.G. Fulford and her mom, Phyllis Greene, have written a book about their experiences.

It is called Designated Daughter: The Bonus Years 

 

The Cyclone of Fear

Do you have someone in your life that you are losing?  Are you watching cancer, or dementia or drug addiction or old age robbing you of your loved one... struggling to hold on to them with all you  have, while their sweet love, their strength, and even their very presence are slipping away?

If so, then you know the face of fear... and you are not alone.

Anyone who is caring for a loved one knows that peculiar taste of dread, the clench of worry, the cold sweat of fear.

We live in a realm restricted by time...we celebrate the day of our birth, measure our life by years, live our moments in sync with the rising of the sun, gauge our vacations in paid-time-off and even discipline our little ones with time-outs...

And so it was for me that the fear took a fever hold when I realized that time with mom was dwindling.  As we journeyed with mom and the pancreatic cancer, the fear hit hardest when the statistics and prognoses got real... this disease was terminal.  The reality was that mom was dying...and there was coming a time she would be gone from my life.  Forever.  Never coming back.   Not even for one more kiss on the cheek, or to whisper one more I love you... Her body, her voice, her laugh, her touch...would be gone from this space...

Gone From My Life.

And I panicked.  The thought of losing her completely was impossible to face.

Fear was a living breathing thing.  I remember feeling physically sick with dread over that coming day.   It took over my life...

Fear.  It is a part of the Caregiver's Life. 

There is the Fear of losing that loved one.

There is the Fear of failing...your loved one, yourself...

There is the Fear of the unknown.

There is so much Fear that accompanies a terminal diagnosis.  And it can consume your life.

Corrie ten Boom describes it perfectly:

“Worry is a cycle of inefficient thoughts whirling around a center of fear.” 

 

Fear.  It was like a Cyclone in my life.  Ravaging and Destructive.  Shattering whatever Peace there might have been... 

 

And as we have done so often since mom's diagnosis, we sought to understand.  We researched.  We talked.  But the fear hung on, overwhelming my feeble attempts to find relief...holding Peace hostage.

 

Finally I talked with a grief counselor.  That first step was hard.   I cried the entire hour as I hiccuped through mom's story and our family's journey.

 

But in the ensuing weeks, Grief became a known thing.  Fear revealed its ugly self.  And we began to really face the truth of life with a terminal illness. The counselor shared with me...

 

*  the stages of grief

*  the reality of anticipatory grief

*  ways to cope with the fear and grief

*  God's heart for the grieving

 

The time spent with the counselor was a Mercy Gift for me.  It lessened the grip of fear in my life over losing mom.  And it put into place a strong desire to Live Life Well... for mom and with mom... for whatever precious time we were given.

 

It was Grace.  It was Life.  It was Peace.

 

One of the counselor's favorite verse's was found in Isaiah 45:3:

 

"I will give you the treasures of darkness,

riches stored in secret places."

 

She said this verse spoke deeply to her after her own daughter had died suddenly ... during her dark days of grieving, God gently revealed Himself, sharing Riches of Peace and Goodness, that could only come from His Sovereign Hand...

 

Walking through the Fear of losing mom sent me indeed into some very dark places.  Perhaps you've been there too.  Fear will do that to a person.

 

And Fear just doesn't want to let go.  It is like the monster under our kids' beds.  Its stranglehold of power is fueled not by what's really there, but by the what-ifs and what-might-be. It takes a conscious effort to trade the worry and the dread for the assurance of Peace in God's Perfect Plan.

 

"Never be afraid to trust an unknown future to a known God."

                                                          ~ Corrie ten Boom

 

That Corrie ten Boom... I think she really gets it... her story of Faith, Forgiveness and God's Goodness is an incredible inspiration for hearts like mine.  In the Hiding Place, she shares a journey so harrowing few of us could imagine...and yet, God's Love shines straight through to light the way for all who are overcome by the Cyclone of Fear.

 

God's Grace, His Richest Treasure, is just waiting to calm the storm and lay Peace down over our Fearful Hearts.

 

Finding treasures even in the darkest storm,

                                   Only by God's Amazing Grace,  Jane



 

 

Another Perspective....Through the Eyes of the Cared-For

We have been looking at Guilt these last few days from the perspective of the Caregiver.  But Caregivers don't have a monopoly on the trip-taking.  What about the Cared-For?

Yes, the one who is chronically ill, or terminally ill...the one being Cared-For.    

I know mom felt it often...would repeat a common refrain to each of us... I'm so sorry you have to be here... I wish I wasn't taking you away from your families... I hate being a burden...

Guilt.

Right in the middle of our pancreatic cancer journey, an article caught my eye in the Womans Day magazine (we happened to be frequenting doctor offices and hospitals alot about then, plenty of time to catch up on our reading!).  It was titled "Tender Loving Care."  And it shared the story of one families journey, 3 generations and one illness...the elderly mother was the Cared-For.  Her daughter the Caregiver, and her granddaughter the Supporter.   It is so perfectly appropriate to share again, right here... the perspective of the Cared-For...

I am the cared-for

by Phyllis Greene

 

It is better to give than to receive.  We have heard that cliche for so long that we don't really hear it when it's said.  But once you accept that you are old and needy, those words hit you in the face - how you wish you could still be the one who is giving.  I am 91 years old, in bed full-time now, and my heart is giving out.  I am thrice blessed with grown children who give and give to me:  Bob, D.G., and Tim give me care and love and constant devotion.

 

My sons live out of town and visit whenever they can; we are forever on the phone, talking about what's going on with them and with me.  My daughter D.G. lives 15 minutes away and is on daily duty.  She is not only my "designated daughter" or caregiver, but also my rock and my salvation.  Every time she finds a new book at the library for me or buys me flannel nightgowns or chooses a gift for me to give someone who's celebrating an occasion, she does it with a smile.  We have fun together and our bond is strong, made of honesty, trust and mutual admiration.  But - and I know she will protest this - I infringe on her time, on her work, on her life.  And I feel terribly guilty about it.

 

I try in small ways to relieve the guilt - to be the pitcher instead of the catcher - like subscribing to a family cell phone plan for D.G. and me with 500 minutes to talk, of which I use 5.  Can talking on the phone make it easier for her when she can't visit her daughter, son-in-law and grandchildren in California?

 

She visits me every day - at the expense of the rest of her life.  Caught in the vise, in the middle of the family, in the middle of the country, D.G. tends to me needs in Columbus, Ohio, while missing those two adorable grandchildren on the West Coast.  I wish with all my heart that she would get on a plane and go to see them more often.  I promise that I won't fall or get sick(er), as I've done in the past when she's gone away.  Please go, I think.  But what if, despite every precaution, something bad happens?  (Again.)  She will feel worse than ever.  And guiltily, even selfishly, I am relieved when her plane touches down and she is back home, nearby.

 

Living into your 90s is not all it's cracked up to be.  There are down days, when I am lonely and bored.  But there are more good days than bad, days when I look out my bedroom windows and see blue skies smiling at me.  And I can smile back, thinking, Just give me another season, or a season after that, or a season after that...

 

"Every day is a fresh beginning; listen, my soul, to the glad refrain," goes the quote by 19th-century poet Sarah Chauncey Woolsey.  How miraculous, at 91, to still believe you can start anew.  Less a race now, more a hobble, my life retains its luster through the love of friends and family.  Love I can still give heartily.

 

And heartily receive.

 

 

 

 

 

Phyllis Greene and her daughter, D.G. Fulford have written a book about their experiences.  It is called Designated Daughter: The Bonus Years with Mom.

Swarms of Locusts Everywhere....Ugh!

So... Grandma Inga taught me much about Guilt... and we'll get to that in a minute.  But she also taught me much about Living Life Well.  (She was a conflicted woman...as are we all).   She and Grandpa dairy farmed in the rich Wisconsin countryside.  Love for the farm flowed straight from her veins to mine...

 

 

 

 

 

Grandma Inga set us to work with the calves, the chickens and the pony at an early age.  Though, I am really rethinking my red highwater pants and blue jacket selection right now.  Did no one supervise us when we got up in the morning?!

 

Anyway, back to the matter at hand... Guilt.  Which, by the way, I feel none when I think back to those glorious visits to the dairy farm.  Just freedom, fun and chocolate (yes, the chocolate addiction I learned at Grandma Inga's knee as well...she was conflicted but happy).

 

There are a-gazillion books from some really smart people about how to handle Guilt.  Where it comes from... What it looks like... And What to do about it... I am not one of these people.  I am one of the people who is figuring it out one agonizing step at a time.

 

I do very much encourage you to seek out the professionals for a Guilt that is interferring with your joy, your love or your life.  It can be debilitating and I know that some things simply cannot be handled without help...please know that when we become weary in the walk, Grace provides the Aarons and Hurs to hold our hands and walk us through the trials.  It may be a counselor, a friend or a minister...you don't have to handle it alone...

 

In my personal life, I have found that there are basically two kinds of guilt (don't try to look this up in any of the fore-mentioned books, I don't think it's in there...)

 

There's Real Guilt.  That's the kind where you really did something to feel guilty for.  Like rob a bank or cheat on a test or lie to your parents...

 

Then there's the Imaginary Guilt, which of course is the Guilt you make up in your mind.  And is, by definition, not Real.  That would be not spending enough time with your loved one, or not calling your friend back, or eating that second piece of pie. 

 

For me, the Imaginary Guilt is way, way harder to deal with.  It takes over your thoughts and messes with your happiness.  All those what ifs and not enoughs...

 

With Real Guilt, you know exactly what you did wrong.  Usually the police or teacher or your mom will be only to happy to help you figure it out.

 

With Real Guilt, there is an action that can be accounted for.  Actions that can be amended, albeit, not without consequences.  This is the Guilt that brings a humbled child (no matter the age) back to his parent to beg forgiveness... or the husband back to his wife... or the friend back to his comrade...

 

Imaginary Guilt is just so hard to quantify... Really how much time is enough?  How much pie is too much? (Well, ok, that one's easy... like, don't eat the whole pie...)  But the thing is, we lay a self-imposed (imaginary) line in the sand and when we cross it, we're off on a mega (self-indulgent) guilt trip, even though we have literally harmed no one...

 

So, what to do?  Well, if you're me, you do the following...

 

Stop.  Examine the offense.

 

Decide if it's Real Guilt or Imaginary Guilt.

 

If it's Real, do the hard thing and go make amends.  And accept the consequences.

 

If it's Imaginary Guilt, Raise your Head High and Apply Grace to your Heart.  Liberally.  Refuse to live in the land of what if and not enough.

 

And if you, like me, have traveled a thousand guilt trips and mourn the time that was lost while wrestling the anguish... Be of good cheer... 

 

"I, the Lord your God,

will make up for the losses

caused by those swarms

and swarms of locusts

I sent to attack you.

My people, you will eat

until you are satisfied.

Then you will praise me

for the wonderful things

I have done.

Never again will you

be put to shame."

     Joel 2:25-26

    

Living in the Grace Promise to restore the years the locusts have eaten. 

Faithful God.  He knows my Heart. 

There is joy, There is Hope.

There is no more Shame.

 

Graced to be Guilt-free for today.

Tomorrow may find me wrangling yet another one-way ticket off the

Guilt Trip Train,

Thankful still for the Grace to move on and

 

Live Life Well! 

 

The Nitty-Gritty Life of the Caregiver

So, now we're getting to where the rubber meets the road...

The raw, hard to share, real, honest to goodness truth about Caregiving.  It's not pretty.  But it's honest.  And Real.  Feelings shared by hundreds and hundreds of other giving souls.

It's where God's Riches (Grace) are needed more than ever.  And yet, are so often the last thing we ask for.

Caring for a terminally ill patient is truly a gift...for the patient...for others in the family...and for you, yes, for you.  There is true joy in the servant posture of coming alongside a loved one in need.

But... it can strip our humanity into shreds.  Even the most grounded among us will reach breaking points we never expected.

For the kicker here is that we are most always doing the giving out of sheer love.  It is a choice we made from a passion deep to serve and to help the one we love.

So, when the Ugly shows up...and it's coming from us, we are shocked, overwhelmed and appalled that we could possibly think, act or do the things we're doing...especially when our loved one is facing a potentially terminal disease.

This is where we're going... down to the part of Ugly Unlovliness that sometimes (many times) takes over a Caregiver's Heart...no matter how hard we try to be the giving, attentive caregiver our loved one needs.

The grim reality is that we Caregivers get...

Tired

Feel Guilty

Explode in Anger

Fight Real Fear

Struggle with our Patience

Deal with the Ungrateful

Contend with Conflict

Battle with Burnout

Wear the Burden of Grief

 

I'm sure you could add your own tales of woe to the list. But...Can I tell you right now that it's ok if you're not perfect?!  No one is... we can explore these disfiguring soul-deep blemishes together with no judgement, no condemnation...just an open hand and heart to hear the Father's call...

"Come to me.  Get away with me and you'll recover your life.

I'll show you how to take a real rest.

Walk with me and work with me - watch how I do it.

Learn the unforced rhythms of grace."

                   ~Matthew 11:28-30  The Message

There is grace ahead... Be encouraged to stay the course...  

 Please join us as we continue to explore Grace for the Caregiver in our 31 Day Challenge!   Click on the link to follow all our posts.

You are Loved, Always, Jane

Top Ten Grace Tips for the Caregiver

When mom and I started working on our website, The Pancreatic Cancer Journey, our main focus was to share mom's story...her journey with pancreatic cancer.  It was our prayer and our hope to encourage others with cancer, and maybe to take some of the fear out of the horribly complex world of cancer care and the equally horrendous treatments.

I know that the writing was solace for me...the many emails and notes you sent thru the weeks and months of her journey were balm to a heart sore.

After mom's passing, we all found ourselves in uncharted waters.  The grieving journey was/is a completely different animal than the cancer journey.  Our time of caring for mom was over, but my wayward emotions didn't get the memo... we were all a mess.  Holding it together barely, for each other and for her sake, but we were just a mess. 

We needed Grace...(we still do.)  And as the days roll into weeks and the months stretch long, there is truth that time gentles the ache.  It also allows the traveler to see where they've been and what Grace has done...

God hallows the heartache into joy somehow.  Humbled.  Grateful.  It is a gift from His Gracious Hand. 

And so it is that I can see now where He has worked the most in my life as a Caregiver for mom.  It is a rough list, but still a rendering of the things we have learned thru the Journey...

Our Top Ten Grace Tips for the Caregiver

 

1.  Be Willing... the Caregiver is truly a servant role.

 

2.  Be Flexible...expect Changes.

 

3.  Be a Planner... it helps relieve the Chaos.

 

4.  Be Teachable... it's all new.

 

5.  Be Patient... Be Gentle... with yourself and your loved one.

 

6.  Be Steadfast... when they feel like giving in, do not give up.

 

7.  Be Realistic... about the journey, about your abilities, about the future.

 

8.  Be Vulnerable... it's okay to feel the anguish, the grief of losing your footing

 

9.  Be Quiet... take a Grace Break, time away for just you.

 

10.  Be Proud... Give Yourself Credit, Not Guilt. 

 

 

For the many, many selfless servant hearts, laying down a ministry of love and care this night, my prayer is for Grace to flow abundantly over your life.  You are the hands and feet of the Almighty Himself.  What an honor, what a privilege to serve those you love.

 

I would hug each and every one of you if I could.  May you feel my Grace nod to you across the miles!

 

Love Always, Jane

31 Days of Grace for the Caregiver

31 Days....

A post for each day of October...

On a topic that just speaks joy to my heart...

Grace for the Caregiver

 

And how did I ever come up with such an idea?!  Crazy, Glorious 31 Day Idea?!  Smile...I didn't, but I'm joining in this year with other crazy, fun, amazing bloggers at The Nester for the challenge.   Every year, she puts forth the call to write on a topic (of your choice) for 31 days.  And so many have come alongside her to share their lives, their stories and their inspirations...for 31 days.

 

31 days!

 

Is it possible?  To write on 1 topic every day for a whole month?

 

Oh my, yes...especially when it comes from the heart.  And being a Caregiver for mom has been such a terrible privilege throughout her long pancreatic cancer journey.  The things that have humbled me, torn me, filled me and blessed me... this 31 day project comes from the deep.  For I know there are so many unsung hereos out there laying down the same sacrifice for those they love...

 

You are the Caregivers.  The ones Giving, Loving, Hurting and Hungry.

 

Hungry for the Encouragement and Hope that your sacrifice is not in vain.  For the Words that speak Peace to your troubled heart and broken soul.  And  Yes, for the Grace to believe that it is enough...

 

 

Day 1  Who...Me? A Caregiver?!
Day 2  Grace...Simplified
Day 3  When Grace and Need Collide
Day 4  Top Ten Grace Tips for Caregivers
Day 5  Grace Break...Farm Style
Day 6  The Nitty-Gritty Life of a Caregiver
Day 7  Yoga and Moses
Day 8  Hands Held High
Day 9  The Mother of All Guilt Trips
Day 10  Swarms of Locusts Everywhere...Ugh!
Day 11  Another Perspective...Through the Eyes of the Cared-For
Day 12  Grace Break...Fall-Style!
Day 13  Too Dog-Gone Cute to be Guilty
Day 14  Meltdown Madness
Day 15  When Things Can't Be Changed...
Day 16  The Best of All Meltdowns!
Day 17  The Cyclone of Fear
Day 18  Craft Fair Craziness!
Day 19  Courage and Fear...
Day 20  Grace Break...Friend-Style
Day 21  The Mighty Acorn
Day 22  How do I Choose to be Remembered?
Day 23  The Right Place at the Right Time doing the Right Things
Day 24  The Grace Gift of Friendship
Day 25  The Ungrateful, The Unthankful, The Unlovable
Day 26  Words to Live By...
Day 27  Grace Break...Funny Style!
Day 28  Run...Don't Walk...to the nearest Spa!
Day 29  The Shadow Valley
Day 30  It is a Privilege...
Day 31  I Would Do it All Over Again in a Heartbeat!
 

 

 

Join me please...we'll journey it together, in Grace, Always,

 

Jane

Silver Linings

Perhaps one of the most amazing things to come out of mom's pancreatic cancer journey is the realization that we are not alone...

And I know what you may be thinking.  Well, of course you're not alone, there are many other pancreatic cancer fighters out there all over the world.  And you would be right...There just weren't any other pancreatic cancer fighters in our corner of the world.

No one in our community had pancreatic cancer.  No one in the chemo lab had pancreatic cancer.  No one in our church had pancreatic cancer.  No one at work had pancreatic cancer...

No one...

We felt all alone, against a giant foe, that no one knew how to stop...

When the doctors suggested treatment, they said they had researched the options and felt we should try this chemo regimen.  They didn't say they had successfully treated other pancreatic cancer patients with this chemo regimen.  When mom suffered her diabolical gall bladder attack, none of her doctors could agree. Over the course of a week, as her symptoms escalated, her doctors waffled back and forth... One said the cancer was progressing, one said the stent wasn't working and one said it could be a virus....It took an ER doctor (who was not an oncologist) to send her for an MRI and diagnose a rotten gall bladder...As we suffered thru that nightmare of a week while the doctors disagreed, we felt completely, utterly, all...alone...

And so, the silver lining comes as a quiet surprise over the many weeks and months since mom's diagnosis.  We have met so many valiant, courageous warriors on the same journey.  Most are online, cyber friends who have reached out to us in simply heartwarming ways...with a story, an inspirational quote, a prayer...and with that outreach came Hope and Strength.  There is truly Power in Community.

You have become our Community.  There is an instant understanding, a nod of comprehension, a bond of empathy.  Each has been down in the trenches.  Your faces, your hands, your hearts are tuned to the same war cry...Hope and Healing...Hands reaching out to help those that come behind, Smiles that lighten the day, Encouragement to face the Journey...all because we are, really, not alone...

In this past month, the silver lining has brightened even more, as I have had the pleasure to "meet" a family who has suffered much at the hand of cancer.  I have learned that it really doesn't matter whether the cancer is attacking the pancreas, the lungs or any other part of our anatomy...Cancer is malevolent and is no respecter of person, race or religion...When it knocks on our door, we find ourselves facing the fight of our lives.

And so it was with Cameron and Heather.  Almost 7 years ago, Heather was diagnosed with Mesothelioma Cancer, at a time when she should have been on top of the world, welcoming a blessed baby girl into their blissfully content lives.  Instantly their world changed and Cancer became their focus.  Not so different from the way Pancreatic Cancer changed our world...

Both Heather and Cameron have been blogging through their experience here and here..  Cameron has graciously written an article that honestly explores his role as a CareGiver and it just seems perfect to include it here as we celebrate Unsung Heroes..  Their story has that happy ending, but what makes this my silver lining, is the way they both are giving back to the Community, empowering others struggling with their own journeys, sharing Hope and Inspiration along the way...

My Experience as the Spouse of a Cancer Patient

by Cameron Von St. James

 

Three months after the birth of our only daughter Lily, my wife, Heather, was diagnosed with malignant mesothelioma.. Suddenly our small family was catapulted from a time of joy and celebration to a time of fear and uncertainty. I remember looking into my wife’s eyes as she cried and thinking, “How are we going to get through this?”

Immediately there were decisions to be made and things that needed to be done, but emotion overwhelmed me.  However, these difficult decisions brought me back to reality and forced me to focus on how we were going to beat this cancer. However, I still remained emotional. For days following the diagnosis, I was filled with rage and could scarcely communicate without using profanity. As days passed, I became better able to control my anger. I realized my wife and daughter needed me now more than ever.

Initially, my daily to-do list was so long that I frequently found myself overwhelmed. As days went by, however, I learned to prioritize the most important tasks so as to take care of my family as best I could. I also learned to accept help from the many friends and family who were there for us.  Without their support, we might never have gotten through those difficult times.

 

Despite the loving support system surrounding my family and I, the time of Heather’s fight with mesothelioma was intensely difficult for me. Following her surgery in Boston, I went through a particularly difficult two-month period while Heather was recuperating at her parents’ home in South Dakota, and preparing for her next phase of mesothelioma treatment, which would include chemotherapy and radiation. Since I needed to stay home and work, I only saw her and Lily once during this time.

Needless to say, I missed my wife and daughter terribly. I got into my car after work one Friday and drove 11 hours that night to see them. It was snowing, and I had to stop and sleep in my car for a few hours during the night while the plows cleared the roads. I visited my wife and daughter Saturday and turned around Sunday to make the 11 hour drive home so that I could go back to work. It was a short visit, but the brief time I spent with my family was worth every second of hectic travel.

While it was difficult for me to be away from Heather and Lily during this time, today I do not view it as a time of loss. There was no way I could have properly cared for our baby daughter while working full time, and it was important for Heather and Lily to be together during Heather’s recuperation process. Rather than viewing this or any of the other difficult decisions we made with regret, I accept them as the things we needed to do to save our family. Although the cancer diagnosis forced us to make difficult decisions, I found comfort in the fact that we could still make decisions.

This difficult time taught me to be grateful for the ability to make decisions. In addition, this challenging time taught me the importance of accepting help from others. Without the love and care of our support system, we would not have been able to make it through this difficulty. Through all of our struggles, Heather is still here and still healthy over six years later.  I hope that our story can be a source of hope and help to those currently battling cancer.

 

Caregivers come in all shapes and sizes.  Some are amazing spouses like Cameron.  He speaks truth when he said that "without the love and care of our support system, we would not have been able to make it through this difficulty." 

 

Where would we be without each other?  The Power of Community...

 

From the beginning of time it has been true.  When God saw Adam alone in the Garden, surrounded though he was by immense beauty and every good thing, the Lord God said, "It is not good for the man to be alone..." Genesis 2:18

 

 

Our Father God created us for community, for fellowship...

not to be alone,

but to be loved and to love,

to be cared for and to care for...

we find our place when we lose ourselves in the giving to another, whether it be spouse, parent, child, aunt, nephew, friend...this is the Power of Community and when we do...

Grace smiles "Well Done"

 

 

Unsung Heroes

care-giv-er, n.  (kar'giv'er) : 

      

         a person who provides direct care (as for children, elderly people, or the chronically ill)

 

If you are caring for a loved one with pancreatic cancer, then, by definition, you are a caregiver... And I'm willing to hazard a guess that you could re-write the definition in a million different ways!  Perhaps Mr. Webster would like to interview a few pancreatic cancer so-journers and their heroic caregivers...

 

Dad and I shared in the caregiver journey for mom as she battled pancreatic cancer.  And yes, technically, we provided direct care for her.  But, oh, it was so much more.

 

A labor of love and pain, grief and loss, joy and honor.

 

The emotions swirled constantly as we struggled to maintain a level of normalcy for her around the house, keeping her comfortable, meeting her needs, both physically and emotionally, as well as dealing with a diagnosis that left our heads reeling.  As the cancer progressed, we gradually began to do more and more for her...the cancer winnowing her strength to but frail, as our hearts wailed over the cruelty of this disease.

 

Maybe there are no words to define the role of caregiver in such situations.  It is all-encompassing, and in too many cases all-overwhelming...

 

...no two cases of caregiving could ever be the same, for the experience is unpredictable, complicated and ever-changing.

 

...the ministry of a caregiver offers a "rubber-meets-the-road" chance to be Love in Action.  Will there be Grief?  Will there be Tears?  Will there be Guilt?  Will there be Exhaustion?  Yes, in spades...

 

But there will also be more than enough Love Shared, Gratitude Smiled, Joy Sunk Soul-Deep to cover the pain.  Being a caregiver is possibly one of the most life-affirming gifts you can offer your loved one.  And in so doing you may just find the road to Healing the Hurting Heart...there is no prescription better than to give of oneself.  Even if no one ever thanks you...

 

Choose this day to offer yourself whole-heartedly. Don't give up.  Don't ever doubt that your work, your ministry is making a difference to the one you love.  A Gentle Touch, a Servant Heart, and a Love that honors the struggle.   As a CareGiver you have the choice to

 

Become the Gift...

 

You are my Unsung Heroes and I love what you are doing to Bless your Loved Ones,

 

Graced today by the Many, Many Walking Should-to-Shoulder together on this

Pancreatic Cancer Journey