Month: April 2017

In honor of Illinois Marathon week here in central Illinois, I thought I’d do a throwback to my Facebook post from the day my Dad died…

A little after 1:00am on December 10, 2016, my Mom called to tell me my Dad was gone.  She sounded tired, yet fine.  I asked her if she was okay and she told me yes, that she just had this feeling of relief.  Relief that my Dad was no longer suffering, relief that he was no longer under the spell of Alzheimer’s, and relief that my Dad had finally been given his reward of what he had wanted all along… to go home.

I didn’t cry.  At first.

But I couldn’t go back to sleep.

So, what do you do at 1:00am when you can’t sleep?

You obviously take to Facebook.

Here was my post from that morning:

Yesterday afternoon, after months of being the strong, ever optimistic daughter, I laid across the chest of my dying father sobbing. It’s the first time throughout this journey with him that I’d ever done that… just inconsolable, full fledged bawling. Sure, I’d shed a few tears before, but nothing like this. The hospice nurse had just left and said we were down to days or hours, and it finally sunk in, seeing him laying there, that soon I’d be living a life without him in it. Soon he’d be finishing the race he had started and crossing God’s finish line. And so I cried. And I told him over and over that I loved him. That he was a great dad. That I was so sorry, sorry for what has happened to him, sorry for not being stronger, and not happy during his final moments. I told him how much I was going to miss him, but that we’d be okay. I told him I’d watch out for Mom. I stroked his silver hair and squeezed his hand, hoping he’d give me a squeeze back. But, he didn’t. Instead, I saw a single tear by his eye. Maybe it was nothing. Or maybe it was his final way of showing me just how much he loved me, too. As I left I smothered him in kisses, reminded him one final time of my love for him, told him I’d be back, but that if he had to go before I returned, to go knowing I’d be okay.
I’m not okay.
He couldn’t wait for me to come back.
And now, I’m sad.
My heart is shattered into a million little pieces.
I’m angry.
I’m mad.
Mad at this awful disease.
Mad at myself.
But, not with God.
He blessed me with an amazing father.
But I am furious with Satan.
His hands are all over this disease.
He’s not going to win.
My Dad did.
He lived a great life. He loved the Lord and always had his sights on heaven. And now, late last night he was given his eternal reward.
I have no doubts my Dad loved me or that he wanted every happiness in the world for me, that he’d run to the ends of the Earth for me, but my goodness I’m going to miss that fuzzy head. It only encourages me to keep running the race before me. To finish strong, so that one day, hopefully soon, we can all rejoice together. That’s what he’d want me to do.
Maybe God kept him here a little longer because He knew I needed that cry. That I needed to come to peace with the hand we’d been dealt.
Maybe. Who knows.
But for now, I’m going to hold on to our last moments together, find comfort in His love, be sad, and thankful there are no tears in heaven.

 

I’ve taken a little hiatus from blogging as I was feeling a mix of emotions, sadness being the main one.  I wish I could say I’m feeling better, but each day has it’s new struggles.  I’m trying to help you all navigate Alzheimer’s, while I am actually trying to navigate my grief.  But God is still good, is always good, and will continue to be my ultimate comforter.  Thank you so much for the support.

When I first started this blog sharing Dad’s life story and journey with Alzheimer’s, I contacted some of his friends to share with me their fondest memories of Dad.  I previously shared with you memories from members of the Chumbley family, but there’s one more Chumbley man who shared this story with me of my Dad, one of which I had never heard before now…

We tried to act like we were paying attention.  Geren sat on the left and I sat on the right.  We always sat like that—him on the left and me to his right—ever since we were about five years old when we discovered that, since he was left-handed and I was right, our dominant arms wouldn’t interfere if we sat that way.  On this morning, our parents had let us sit together during church so we occupied the end of a pew and tried to appear attentive to the sermon, when actually we were just trying to endure the seemingly-endless time we had to sit there.  We were probably nine years old at the time, or at least Geren was.   He was actually ten months older than me but our birthdays fell just right to place us in the same class, so we grew up together.

Sitting through the sermon at that age was usually an exercise in boredom but on this particular day we had something to engage our imaginations—we had two safety pins.  It doesn’t sound like much but a safety pin was a wondrous device.  It had a needle point on one end that could pierce clothing or paper or fingers but it could also be clasped to retain whatever it pierced or to carry safety in one’s pocket (hence “safety” pin) without fear of self-impalement.  But even more importantly, it was spring loaded and could snap open in an instant.

On this day, we were weaving our safety pins together in an effort to invent a better mousetrap.  After all, what better way to catch a mouse than to have it pin itself to the floor with our ingenious device?  At least, that was our thinking at the time.  The trouble was, we had to engineer the device without talking and while keeping our heads up looking upon the preacher in case one of our parents happened to turn to see if we were behaving and paying proper attention.  So Geren and I would take turns manipulating the pins in our lap while trying to interleave the prongs to cause them to spring at the right moment to stick the mouse all while looking at the podium at the front of the auditorium with only occasional furtive glances at the mechanism in our hands.

I worked on the problem for a while and then, with head up, I casually passed the pins to Geren—also sitting with head up—with my right hand across my body to meet his left hand extended across his.  Geren had a little more freedom to work than I did.  We were on the left side of the auditorium so he sat outboard of me with me blocking the line of sight between him and our nearest parental enforcer.  So when he got the pins, Geren looked down briefly and realized that, by passing the needle end of one pin through the eye of the second one, he could bend the needle points back to engage each other and remain in that position with tension on each prong.  That was a major milestone in our design.  He apparently also recognized the significance of the innovation because he gently nudged me to indicate he was handing it back.  Without taking my eyes off the preacher, I dutifully and slowly moved my right arm across my body while Geren, also with his eyes on the preacher, passed the pins with his left hand.  But it was then that the ploy of keeping our heads up failed us.

Thinking I had grasped the pins, Geren let go of our “mousetrap” before I had moved my hand into position.  The contraption fell, hit the bench between us, and sprang!  Both our heads jerked instinctively as the recoil launched the mechanism up and over our shoulders to the pew behind us.  For a split second our eyes met in sheer terror as we expected the wrath of our parents, if not the wrath of God, to descend upon us.  But nothing happened.  Geren twisted back a bit to see the preacher’s teenage daughter, who had been sitting behind us, gingerly pick up the tangled safety pins which a moment before had come hurdling over the bench in front of her to land in her lap.  As if on cue, both Geren and I turned to see if our parents had noticed.  Fortunately, his mom sitting down the pew from me had not taken her eyes off the preacher, and my parents, sitting on the other side of the auditorium was also likewise engaged.  We didn’t risk another look behind us.

We found the rest of the sermon to be extremely interesting.

Reading Philip’s tale of the homemade mousetrap got me thinking…

We had the vintage version of this game upstairs in a closet in our attic that we would get out and play sometimes.  I remember the closet actually being big enough for us all to crawl into and sit, play games, and we were even able to fit a mini RC race track in there and would race cars.  My Dad loved playing games with us.

But do you know the premise of this game?  Over the course of the game, players at first cooperate to build a working mousetrap.  Once the mousetrap has been constructed, players then turn against each other, attempting to trap their opponents’ mice.  The trap begins with a crank which turns a set of gears. This begins a series of stages which ends in a cage being lowered over the “cheese wheel” space on the board.

The Mouse Trap Game can actually be compared to living a life with Alzheimer’s.  In the beginning your brain is cooperating with you, each cell is getting along nicely, working together as a team.  Then eventually they’re finished.  The teamwork is gone and now the brain cells are beginning to turn on one another.  Year by year, month by month, day by day, the crank turns the brain’s gears and traps each memory one by one holding them hostage. The series of stages begins… first it’s little things you can’t recall.  “Where did I put my keys?” “Where did I lay down my glasses?”  Then it’s, “What did I come in here for again?”  “Where am I going and how did I get here?”  To walking the halls of an assisted living facility and walking right past your daughter and grandkids who came to visit you and not even recognizing them.  Eventually the cage drops and the final memory is caught, you’re left in a coma like state, and just as the motto on the box says, “…woe to the mouse who gets caught under!”

Woe to the man or woman who suffers from Alzheimer’s disease.

But more so, woe to the one who doesn’t know the love of the Lord.  Woe to the one of little faith.

Thank you Philip for sharing this memory from growing up with my Dad.  I can vividly picture the both of you fidgeting with a couple of safety pins to construct your masterpiece.  How lucky for you both that Shirley and Granny weren’t clued into your antics.  I delight in imagining the fun you two had together sitting in a wooden church pew, building the comical wonder of a mousetrap.

I’m thankful my Dad is no longer being held hostage to this disease.  As amazing as a wheel of cheese can be to lure us in, because let’s be honest, cheese is amazing, please know heaven trumps cheese a million times over.  May you feel lured into God’s love for you and always avoid the mouse trap the devil has constructed to trap you into a life of sin.

I repeat.

I was NOT in denial.

I am so tired of hearing from different people that they think I was in denial for the longest time about my Dad’s condition.

No, I was NOT.

I knew he had Alzheimer’s.  I knew there was no cure.  I knew there had yet to be a single survivor of this disease.  I knew things were going to continue to get worse, instead of better.  I knew he would eventually lose his life to it.

I KNEW.

But what I also knew, and still know today, is that our God is a mighty God.  A faithful God.  A loving Father.  The Ultimate Physician.  Anything is possible.

So, I chose to be optimistic, to be hopeful, to always find that cup half full, and to always find a shred of joy in each day, in each visit I had with my Dad before he died.

There is ALWAYS something to be thankful for… ALWAYS.

Who likes being around Debbie Downer all the time?  Who likes being around a Negative Nelly?  How does that help the situation or the person in the situation?

That’s why my Dad never saw me sad or crying when I was around him.

Of course my heart was breaking on the inside seeing him digress more and more each visit.

But would that help him?  Would that make the situation better?  The outcome any different?

No.

First Thessalonians 5:16-18 says, “Always be joyful.  Never stop praying.  Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.”

I clung to that verse.

Do you know how hard it is to be thankful in ALL circumstances?

At first I was thankful he still recognized me.  He may not have known my name, and wouldn’t even say my name when I asked him repeatedly to just say “Heather,” but I know he knew that he should know me.

I was thankful he was still mobile.

I was thankful my kids willingly came with me to visit him and for the joy they would bring to all the residents’ faces.

I was thankful for his tight hugs and a sweet kiss every time I would leave him.

I was thankful to hear him say, “I love you, too.”

Some days I had to dig deep for things to be thankful for after each visit.

That doesn’t mean I was in denial.

But striving to find joy in all circumstances sure doesn’t make facing Alzheimer’s any easier or more bearable.

The last day I saw my Dad alive, it did finally hit me like a ton of bricks that this was it.  This was the end.

I had been hopeful for what felt like such a long time, that seeing him laying there, moments away from being in the arms of Jesus, I just lost it.

I finally cried.

And not just cried…. like sobbed.  Uncontrollable, full on ugly cry.

And it was then that I had something else to be thankful for…

I was thankful my Mom was with him when he went.

I was thankful he was comfortable.

I was thankful my brother had gotten a last visit in to see him, as I had thought for sure he’d still be around at Christmas time.

I was thankful I had a final opportunity to tell him I loved him, and a final opportunity to tell him goodbye.

And then I was thankful he was finally at peace.  He was finally where he always wanted to be.  I knew the final outcome would always end exactly the way it did.

So, NO.  I was never in denial.

But… I am now.

Denial is the first of the five stages of grief, followed by anger, bargaining, depression, and finally acceptance.

According to grief.com Denial is the first of the five stages of grief. It helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial.  As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.

I very well could have been denying  myself the opportunity to be sad while Dad was still here, but that’s not how I want to live my life.  Now that he’s gone and as I sit and write this blog, it just doesn’t feel real that he’s really gone.  Looking at his pictures staring back at me on this computer screen, his eyes lock on mine and it’s like he’s looking right at me, through me even, to the inner most part of my soul.  But there’s no denying it, he is gone.

There is a grace in denial.  What ever would we do without grace?

I’m pretty sure you all can figure out I’m angry.

Bargaining… no.  Never did that and still won’t do that one.  We asked God to take him home and now that he’s where he always wanted to be,  I wouldn’t bargain to bring him back or ask he give up his reward.  He was ready to go.

Depression… maybe a little.  Doing this blog was supposed to be therapeutic for me, but in all honesty it has just made me sad.  It’s made me think of him a lot, miss him a lot, and still wish he were here.  So, that only leaves acceptance.  Someday.  Someday we’ll all be in a better place, and although I may never be okay with how things played out, I will accept reality and learn to live with it.  Someday I’ll be okay and at peace living a life without him in it and accept that as my new norm.

But, that’s not today.

“Blessed are those who mourn, for they shall be comforted.” Matthew 5:4

Thank you God for being the ultimate comforter.  The one to whom we can share all of our cares and worries, the one who gently wipes away our tears of joy as well as our tears of sadness.  May we feel your loving arms around us, be given and accepting of the gift of your grace, and begin to heal.  May the only thing left to deny be ourselves, so we can pick up our cross and follow You.

Recently I was approached by a co-worker after starting this blog, that she wanted to share our story on the nightly news.

I thought it sounded like an amazing opportunity to share what I was doing, to honor my Dad, and to help raise awareness for the work that I’m trying to do in helping others out there navigate this disease.

Reporter, Anna Carrera, and Dave, her photographer, came over on a Thursday morning and we talked about my Dad, why I was doing this, we looked through pictures, and then they wanted to go upstairs to get video of where I do my blogging.  Dave says, “Just type something. Act like you’re blogging.”

That’s a lot easier said than done.

I can’t just sit and start typing about my Dad.  I think about these posts for days, sometimes weeks, about what I want to say.

The pressure!

But I did start typing and this is what I came up with, just on a whim…

There’s no doubt in my mind that my Dad loved me more than life itself.

From being there for me from the very first day of my life, to me being with him on the very last day of his… our bond was strong.

Alzheimer’s is a nasty, nasty disease and I refuse to let it win and steal the joy of the life that we shared as father and daughter.

If I learned anything from my Dad, it is that hard work always pays off, to show kindness at every available opportunity, it’s okay to complain a little when the Illini are losing (okay, maybe a lot!), and to always love others.

My Dad may no longer be here to watch my kids grow up, cheer on the Illini as he loved to do, or to give me sometimes unwanted advice, but the lessons he taught me are forever instilled in my heart and mind.

 
*That picture of my Dad just happened to be the first one in my media files, so I grabbed it, but it’s definitely not the BEST one of this handsome man.  Again the PRESSURE!

So, here’s just one of my favorites instead…

Anna and Dave were here for a little over an hour, and a lot obviously had to get cut to fit the package time, but the one thing she references at the beginning of the segment, about comparing navigating life with Alzheimer’s to being on the open water, is one of the things I talked about…

When you think about your life, you can compare it to a boat ride.  Most days of your life, you’re smooth sailing.  Life is calm.  Peaceful.  So many opportunities all around you.  You look out, and the ocean is so open and vast, it seems like the possibilities are quite endless to what you can do with your life and where you can go.

Some days, life is like a vacation on a Carnival cruise.  Everything is right with the world.  Don’t worry, be happy is your mantra.

Other days life is coming at you fast and furious.  It’s an adventure!  Just like a ride on a ski boat, you have your highs, you’re catching every wave, the adrenaline is pumping.  And then you have your lows, when you wipe out, crash and burn, but yet you get back up again and keep going!

And then one day, you look out into that vast open space, and you see dark clouds looming.  And all of a sudden you’re no longer smooth sailing in that sailboat, the Carnival cruise ship has moved on to a different port, and the ski boat has been put away for winter.  You’re running out of time before the dark clouds approach and you become fully engulfed in the storm.  But then you look down and see you are about to tackle this monster of a storm stranded in a life boat.  This vessel is definitely not equipped for those dark clouds and rough waters on the horizon.  Welcome to life with Alzheimer’s.  The waves of forgetfulness are crashing all around you.  And let’s not forget the caregiver sitting right behind you, paddling just as hard as you are, being stung by the same sprays of ocean water hitting your face.  The battle with the ocean seems never ending.  There is no rainbow in sight.  You want so badly for Jesus to calm the storm.  You know He can do it, and yet He whispers, “Hold on!”

But you don’t want to hold on.

You’re ready to call it quits.

You’re done.

And that’s when I come in, where this blog comes in.

I throw you that life preserver.

After Dad died two different friends sent me this poem by Rev. Luther F. Beecher…

“Gone From My Sight”

I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, “There, she is gone.”

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me — not in her.
And, just at the moment when someone says, “There, she is gone,”
there are other eyes watching her coming, and other voices
ready to take up the glad shout, “Here she comes!”

And that is dying…

I want this blog to be that life preserver, to help you feel like you are not alone.  We are in this together, as I have already weathered this storm, and came out standing.  I may be battered and a bit broken, but I’m still clinging to hope for my family and yours that one day we will no longer have to even utter the word Alzheimer’s on our lips.  But until that day comes…. I’m here.  Until I hear my own glad shouts of “Here she comes!” I’ll keep praying and working.

“Lord God All-Powerful, there is no one like you. You are strong, Lord, and always faithful. You rule the stormy sea. You can calm its angry waves.” Psalm 89:8-9