Day 11

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My Reflections:

Today I visit Papa.  He’s tired and his optimism has waned.  Brain surgery takes it’s toll and there’s healing and recovery yet to take place.

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He feels bad that I’m here with him, telling me in his own garbled speech that I should be home with J and the boys.  I insist that they’re fine and that this is where I want to be.  I then text J, asking him to take and send photos of the boys that I can share with Papa.  And J quickly obliges:

J Jr.:

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C Bear:

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And Little M:

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Papa seems glad to see the photos.  Yes, they’re all doing quite well in J’s care and I’m glad I can rest in that and hopefully Papa can too.

Soon visitors come, friends from Nana & Papa’s church, bearing beautiful flowers, well-wishes, stories, laughter, and prayer.  And as weary as Papa is, this does him good and he rallies and engages with his visitors.

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Another highlight of the day is when Papa’s turban (i.e. head bandage), which has been cumbersome and so bothersome to him these last few days, is finally removed; much to his delight.  He bears his war-wound valiantly:

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Later in the day, I say my good-byes and then head through the maze of halls and out to the parking lot.  And as the hospital door closes behind me, hands fumbling in my bag for car keys, I find myself feeling in such a strange state of limbo between two very different worlds:  Papa’s world of hospital walls, doctors, nurses, beeping monitors; sitting, watching, waiting…. and my world of home and boys and husband and yard; doing, being, moving.  And it’s all so surreal.

It’s still so surreal as I drive home through the busy city traffic, with its lines of cars, endless stoplights, and row upon row of businesses and apartments on either side, to my familiar quiet suburb with its stop signs and tree-lined streets, and wide open green spaces.  And just before I reach our neighborhood, right before I turn onto our street, I see my world in a way as I can only describe as seeing it in a bubble of clear jell-o.  I’m on the outside looking in, not able to fully comprehend the reality I’m looking in on, it seeming to slip from my mind’s futile grasp.  It’s like I’m poking at this clear jell-o mold of reality, the reality of Papa in the hospital and my family at home – I can see it, I know what’s going on, it just doesn’t… seem… quite… real.

My little world encapsulated in clear jell-o.

When I do get home, I find mail from my life-long friend and her kids.  Her card has a photo of a little dog, drenched wet from the rain, teeth clenching an umbrella blown inside out from the wind.  The inside of the card reads:

“If one more person tells me to hang in there….”

And reading it makes me smile.  Definitely feel like I’m hanging on by a thread these days, feel like all I can do is “hang in there.”  And hang on.

There are cards from her kids too; sticker-clad with their adorable kid-writing, telling Papa to “Get well soon,” and that they’re praying that “Papa gets better.”

Yes.

We’re all praying that Papa gets better.  And soon.

 

Nana’s Notes:

[Papa] had a pretty good night, but must have been restless part of the time as his extra turban, that was put on for extra compression when the drain tube was removed from his brain, was all undone.

Ate breakfast, not much else all day – laid with eyes closed when no one else was here.

Physical therapist worked [with Papa] in AM – [had Papa] stand by bed – unstable – barely marched in place – able to follow commands when shown what to do.  [She told him] to sit in chair at least 2 hours per day.

Speech therapist [gave Papa] a swallowing evaluation, then spoke words and had Papa use pictures to identify.  Neighbors [from home] came just before therapist got here so they watched the procedure then visited a little while.  They brought our mail; several cards.

[Papa] asked for help to get back in bed; one hour later got into bed after being up for 3 hours.  Such a relief for him!

[Friends from church] visited.  [Papa] alert, good visit.

Another friend visited, [Papa] fairly alert.

Somewhat restless in the night.

Day 10

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My Reflections:

Today, Papa rests and recuperates in the hospital with Nana by his side.

At home,

Little M discovers the wonderful world of Baby Einstein via You Tube…

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And I finally enter the 21st century with my first-ever smart phone….

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Ain’t technology grand?

Somehow life marches forward in the routine and not-so-routine.

 

Nana’s Notes:

[Papa] had a good night.

Up in chair from about 6 AM until 10:30 [AM].  Played Solitaire on iPad.  We read some emails too.  Ate a good breakfast.

Various doctors visited.

Very tired!  Called for nurse about an hour before that to move him to bed – it takes 2 people as right side is weak & he leans to the left.

Friend from church visited around 9:30 or 10 AM.  [Papa] very tired.  Friend didn’t stay long.

Neighbors [from home] came to visit about 11:30, asking if they could do or bring anything.  [Papa] tired.

Catheter in left arm very sore – put medicine in, very painful.  [Nurse] removed catheter, replaced with one in right hand.  Nurse said [it’s] probably some phlebitis [inflammation of the vein].  They couldn’t detect because of all the discoloration already there.

Didn’t eat dinner except few bites of applesauce.  He’d eaten most all his lunch at about 2:00.

Slept, or at least eyes closed most of the day.

 

Day 9

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Email: (from me to friends & family)

I realized that some of you might be wondering how things went today, since I’d mentioned that the first 24 hours after surgery were so important.  Don’t want to keep you hanging, so will share the good news that my dad is doing well with his recovery thus far – Whoo-Hoo!

A few updates:

– A CT scan was taken this morning which indicated that all of the tumor was removed – very encouraging!

– He is experiencing weakness on his right side, but this is to be expected, and hopefully through therapy he’ll regain his strength on this side.

– Speech/occupational/and physical therapists have already begun work with my dad (and although he’s a bit discouraged/frustrated with his present condition, he’s cooperative and working hard).

– He was moved out of the ICU and into anther room in the hospital where he will be monitored less frequently (no more poking and prodding every hour).

– Most likely he’ll be discharged in a few days and then transferred to a rehab facility for 2-3 weeks.

– He began using his new iPad and enjoyed reading the email messages I forwarded from many of you (he’s still able to read & understand the written word much better than the spoken word).

I think that about covers it for now.  Hoping the next few days will be uneventful as he continues to recover and regain a bit of strength.

-Kari

 

My Reflections:

Today I paint rocks with C Bear….

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Little M takes his first taste of “solid” food….

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And Papa tries out his new iPad…

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I head to the hospital to see Papa in the afternoon.  I’m surprised that already there are therapists working with Papa – speech, occupational, etc.  Nana & I speak to the speech therapist about possible apps that would be helpful to use with Papa in his communication.  She tells us that there’s a term for this, this mixing up of words and letters and speech that Papa is experiencing.  It’s called “aphasia.”  She gives us a few handouts that explain aphasia more fully, and apparently with no app recommendation on the tip of her tongue, she tells us she’ll check into app resources as well.

When she leaves, I do some researching of my own, searching online for the best aphasia apps out there.  I soon find that it’s much less straight forward than I imagined.  For some reason I thought it would be easier; just find an aphasia app, and Papa would be good to go, or at least be given a big boost up in his ability to communicate.  But the apps I find, and even the ones the speech therapist will refer us to, are anything but easy to decipher.  But I’m willing to try to figure it out, and I convince Nana that it is essential to drop $30+ on a couple of apps that look promising.  After downloading them onto Papa’s iPad, I spend a good part of the rest of the afternoon trying to figure out how to actually use them.  And I end up feeling like a degree in speech therapy should have been a requirement before purchasing said apps.

(Sigh).

I finally give the iPad a rest.  In his current state, Papa doesn’t have much energy to deal with aphasia app training anyway, and at this point, I don’t either…. there will be time to figure it all out another day.

Nana’s notes:

Papa tried to tell us something – pointing to IV lines in his hand – tried to ask the nurse, tried writing it – finally wrote the town where my cousin [who has cancer] lives and I said her name and he said “yes.”  I figured out he was asking when he would start treatments & what it would be.  All of this took a fair amount of time and he was worn out!  He closed his eyes to rest or sleep.

He did really well through last night and is progressing well in strength and ability.  At first his right arm was weak when he was asked to lift it, but through the night it got better.  This morning the doctor said his right hand didn’t respond to commands as well as his left (i.e. touch your nose, touch my finger).  His eyes were able to follow the doctor’s hand.

Right arm kept getting weaker through the day.

Our pastor and his son visited.  Papa perked up and was very animated during their stay.

He was moved to telemetry care in the evening.

Day 8

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Email: (from me to a friend, the wife of one of our pastors)

Thanks so much.  And please thank [your husband] for his thoughtful messages as well.  Surgery is this morning and your prayers mean so much.  We know God is in control & we’re trusting Him in this – please pray for peace for us through this.

Thank you!

-Kari

 

My Reflections:

J & I arrive at the hospital early and meet up with Nana & Papa who are already there, Papa dressed in his gown and getting prepped for surgery.  Papa is still jovial, still a bit out-of-character, overly-jovial.  And I’m a bundle of nerves, the adrenaline coursing through my veins enough to make me a jittery mess, no caffeine necessary.  In spite of the risks and unknowns, there is an air of excitement, a potential to “fix” this thing or, at the very least, figure out what we’re dealing with.

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Nana & I with Papa, all prepped and ready for surgery.

 

They wheel Papa back into the operating room and we say our prayers and good-byes.

And then we wait.

And wait.

And wait.

And as we wait, I find pacing more tolerable than sitting.  Anxiousness, nerves, adrenaline, still going full-throtle.  Nana strikes up a conversation with another woman in the waiting room about her same age.  This woman is waiting for her daughter to go into surgery, brain surgery, with the same surgeon who is operating on Papa now.  “Isn’t he gorgeous?,” the woman asks us referring to our shared brain surgeon.  Admittedly the brain surgeon doesn’t fit the much-older, socially-awkward, “brainy” image I’d had in my head (isn’t that what one should expect from a brain surgeon?).  No, Papa’s surgeon is more of the tall, sturdy, former-college-basketball-player type.  Dark haired and very personable, and yes, handsome in a distinguished doctor sort of way.  But right now his looks are the least of our concerns.  We just want an update.  We just want to know that Papa is ok.

And then finally, hours and hours after Papa’s surgery began, the surgeon comes into the waiting room with that update we’ve been waiting for.  And we’re relieved to hear that things went as well as can be expected.  Now there’ll just be more waiting to see how Papa’s recovery goes and what the pathology report will tell us.  For now though, we’re just glad (insert huge sigh of relief) to have the surgery behind us.  And to see Papa’s smiling face once again.

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Just hours after surgery, Papa is smiling and taking it all in stride.

 

Email: (from me to friends & family)

Friends & Family,

Want to give you an update on how the surgery went.

First things first, surgery went well.  They were able to get most, if not all, of the tumor – good news!  The tumor is malignant and the pathology report will come in 3-5 business days which will determine which type of cancer and what prognosis we’re dealing with.

After surgery, they transferred my dad to the ICU (as expected) and we’re there w/ him now.  He’s better than I expected; he’s very tired, but talking a bit (although we can’t understand a lot of what he’s saying).  He does seem to be able to understand most of what we’re saying.  With the surgery, there was a risk that one side of his face would droop, but this doesn’t seem to be an issue.

The next 24 hours are crucial in regards to stroke, hemorrhage, and seizures – risks involved with this type of surgery.  Please pray none of these will be an issue.

More of the nitty-gritty details that were relayed to us by the neurosurgeon:

The tumor was the size of a small sausage, growing into the brain.  It appeared to be an intrinsic tumor (meaning it’s localized in the brain).  In removing it, most likely a small amount of brain tissue was removed as well, in the next couple of weeks we should be able to tell if this has any lasting effects.  In regards to speech, it will be worse for a few days and then hopefully will improve some.  Because of my dad’s age, full recovery of his speech doesn’t sound very likely.  Chemo and/or radiation are likely once they get the pathology report.

Best case scenario, recovery in the hospital should last 3-5 days.

Thanks for all the love, support & prayers!  We’ll continue to keep you posted as we know more.

Much Love,

Kari

Day 7

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My Reflections:

On our way home from our mini-vacation at the amusement park, we stop by Nana’s & Papa’s for a visit.  It’s good to see Papa back in the familiar surroundings of their home.  Papa remains jovial and optimistic:  looking forward to his surgery tomorrow and the chance to regain his speech.  We’re aware of the risks though, and so is he.  He has J and I sit with him at his computer as he goes over spreadsheets of financials, accounts, passwords…. He’d created these years before and has kept them up-to-date.  Good thing too.  As Papa goes through each category with us, explaining all the details in his own language which we still can’t fully decipher, we’re grateful for his typed-out notes already on these spreadsheets which allow us to follow along.  Papa was always one for keeping detailed records, overly-so many would argue, but at present, his detailed records are a gift.

Not that I want to be doing this.  I sit there and listen to Papa and try to take in the numbers:  monthly bills, investment accounts, social security, insurance.  No, I really don’t want to be doing this.  Because in the doing of this we’re admitting the possibility of the “what ifs.”

What if Papa doesn’t come out of surgery better?

What if he comes out worse?

What if he doesn’t make it through?

These “what ifs” aren’t spoken in this moment, but they don’t need to be.  We are all very well aware of them.  We’re hoping for the best, a favorable outcome, a Papa we can fully understand and who can fully understand us; but we know brain surgery is no “routine procedure.”  So I sit and listen and take notes and try to swallow that darn lump in my throat; the lump that’s right on top of the numb ache in my heart.

We’ve been here before.  Years before today.  A visit at Nana & Papa’s a day before another surgery for Papa, that one far more minor.  Our “biggest” boy, J Jr., was just a baby back then and I remember taking a photo of him with Nana & Papa that day.

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Nana, J Jr., & Papa the night before Papa’s “standard procedure” surgery.

 

The night we took that photo, we had no idea that the next day post-surgery Papa would have a massive heart attack.  That Nana & I would find ourselves rushing back to the hospital to be informed by a heart-surgeon that Papa’s condition was critical and there was a good chance he wouldn’t make it….  But thankfully Papa would make it.  Through three very rough and touch-and-go days in the I.C.U., he would be pronounced a “miracle” by his doctor and he would survive, albeit with a weakened heart and pace maker and a host of blood thinners and other meds.

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When Papa was at his worst, the doctors recommended we have my brother & sister-in-law fly out to say their good-byes. Fortunately, after their arrival, Papa turned a corner with no good-byes necessary. We were truly amazed at the miracle of his survival.

 

So here we are again, years later and day prior to another surgery, this one much more sobering than the last.

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I don’t recall intentionally posing this shot to be similar to the one I took with J Jr. years prior, but here it be all the same.

 

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Papa & Little M having fun conversing to each other in their own unique languages.

 

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Papa with C Bear, Little M, and J Jr. (representing our half of his six grand boys).

 

Before we go, I give Papa a letter I’ve written.  It’s nothing fancy, scrawled out on a piece of computer paper, folded in half, words brief and far from flowery; but it comes from the heart, and that’s all that really matters at this point.  If Papa’s last surgery taught me anything, it taught me to take nothing for granted.  It taught me to say what needs to be said now, instead of regretting words left unsaid later.  It taught me to not take goodbyes for granted, but to make the most of them.  Because there are no guarantees what tomorrow will bring,…. no guarantees what any day may bring.

 

Letter:  (from me to Papa)

Praying & hoping all goes well in surgery tomorrow.  But just in case you don’t have your wits about you – in one form or another, I want you to know how very much I love you & appreciate you.  Most recently, THANK YOU for all [underlined multiple times] your help with my house projects.  Your fingerprints & handiwork are all over our house – a wonderful reminder of your love & support for me & my family.  Still have a few projects to go so don’t let brain surgery be an excuse to get out of them : )

We love you & are praying all goes well tomorrow with a swift recovery!

Love,

Kari & Family

 

So we say our goodbyes and give our hugs and kisses all around.  Time for a good night’s sleep. We’ve all got a big day ahead of us tomorrow.

Day 6

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My Reflections:

Nana & Papa had previously planned to meet up with us at the amusement park today.  Papa’s willingness to come was a sacrifice of love for Nana & the boys’ sakes… the cost, the crowds, and the chaos would all have dissuaded him otherwise.  But now, understandably, they’re not coming.  Now brain cancer has won out as the dissuading force.

Instead of joining us for rides and fun, Papa & Nana trek to the hospital where Papa will be having his surgery in a couple days.  Always the planner, Papa wants to do a “test run” to make sure Nana knows how to get there.  The hospital is far from their home, in an unfamiliar area in the city with plenty of traffic and congestion.  A test run seems to make sense.

But Papa falling in the parking lot wasn’t part of the plan.  People running to help him, then him being taken to the hospital’s ER was not part of anyone’s test run plan (although that’s one heck of a way to get familiar with the hospital!).  Fortunately everything is ok (as “ok” as it can be present circumstances considered), and Papa & Nana are able to head back home the same day.

And all this while we’re still hopping from ride to ride at the amusement park, me losing my phone at one point (this is not the time to be losing one’s phone!!!), and, thankfully, recovering it once again.  Rides, and games, and animal shows, and over-priced treats.  And lots & lots of walking.  We return to the hotel exhausted, but glad we came.

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Three cheers for sugar, fun, and naps (Little M takes care of the napping part like a champ)!

Day 5

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My Reflections:

Today we planned to surprise the boys with a trip to an amusement park.  Tickets have already been purchased, two nights have been reserved in a hotel, J’s taken the time off work.

In light of the present circumstances though, it seems strange to carry through with our plans. Really, how can we just up and go in light of Papa’s diagnosis and impending surgery?

He has brain cancer, people!

Who goes to an amusement park to have fun when they find out their loved one has brain cancer?!

Yet the alternative of staying back and all sitting around and worrying and staring at each other doesn’t seem to make a whole lot of sense either.  We know that’s not what Papa wants for us… or himself.  After all, who wants people just sitting around staring at and worrying about them? So I half-heartedly agree we should go.  I don’t want to disappoint the boys.  Life needs to continue on even though I’d like to push the pause button.  J, the boys and I leave as planned.

The boys are so very excited when they discover where we’re going.  And I try my best to be engaged and present in the moment, to truly enjoy it.  But try as I might, there’s a lump in my throat; my head aches and my heart does too.  I am helpless to do anything to make anything better.  There is no fix.  It just is what it is, and we won’t know fully what “it” is until the surgery is behind us and the biopsy report is given.  And in this moment, I feel in some strange sort of limbo, on the outside looking in, as my boys smile and giggle and run from ride to ride.

Where has “life as usual” gone?

Will we ever find it again?

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Smiles prove that it was a good decision to come.

 

 

Day 4

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Email: (from Nana to out-of-state family and friends):

We got home from the hospital this afternoon.  Papa is doing very well.  You would never know he has a problem if you didn’t talk to him.  He feels fine and functions normally except for his speech and not understanding a lot of what people say to him.  He can read and understand the written word.  His mind is sharp, he just can’t express himself clearly.  Surgery is scheduled for later this week.  In the meantime, Papa is just enjoying being home from the hospital!  We have a lot of great support here and appreciate the prayers and support of all of you too.  Thank you so much.

Love, Papa & Nana

 

My Reflections:

J, the boys, and I visit Papa before lunch.  J brings the “big” boys into Papa’s room while I wait in the lobby with Little M.  Then we switch.  We don’t want Little M to catch any hospital germs; he’s too little.  We don’t stay long, the boys are hungry and rammy, but I’m glad they have the chance to see Papa and I know he’s glad to see them as well.  Papa is still very jovial and I can tell the boys don’t quite know what to make of him with his loud, excessive talking (much of which they can’t understand), his exaggerated hand gestures, the hospital setting, etc.  It’s a lot to take in.

How quickly things have changed for them.  For us.  For Papa.

Less than a week ago, the day before this all began, Papa & Nana had picked up J Jr. & C Bear for a “Kids’ Day” at the local bowling alley.  Unlimited bowling, pizza, drinks, and water ice…. the boys were in their glory, loving every minute of it.  And in his usual fashion, Papa took pictures we’d later find to help preserve the memories:

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(At the end of summer, I’d ask the boys what their favorite part of this summer was, and they’d say it was this day; the day of bowling with Papa & Nana.  This day & its fun memories would outrank countless hours of swimming in the pool with friends, day camps, several vacations to the beach, and even a trip to a big amusement park.  And I’ll be glad memories of better days with Papa remain strong, even in the midst of all the change.)

After our visit today, J has arranged for care for the boys so the two of us can get some time away, even if just for a few hours.  He takes me shopping at the mall – the last place he’d normally choose to go.  But he’s sweet, and wants to do something special for me, and have me pick out some new clothes (and who am I to argue with that?).

But as nice as the gesture is, I find it hard to be in a mood for clothes shopping….

Papa has brain cancer.

And obviously not as traumatic, but bothersome all the same at a time like this, I’m still carrying around extra weight that hasn’t “slipped right off” post-delivery.  As I browse through racks at the first store we enter, a well-meaning saleswoman finds it helpful to point out their new line of “slimming dresses.”

Seriously?!… Lady do you know how hard this is?  No, I do not want to be directed to the “look slimmer than you actually are” section of your store!

Of course I don’t say that.  I just nod and mumble a “thank you” and then go No Where Near those “slimming dresses,” instead choosing some items to try on from apparently their not-so-flattering line.  At least that’s how they appear on me in my reflection in the dressing room mirror.  Feeling quite miserable (poor J, he’s a trooper), we head out of the store empty-handed.  So much for clothes shopping boosting my spirits.

The next store we enter proves to be more promising, though.  I find some pieces I like and J points out a dress and cardigan he encourages me to try on.  It’s not something I would have picked out for myself, and it’s not on sale.  Paying full price seems crazy, but I oblige and try it on anyway.  And I actually really like it.  It’s stylish & flattering, knee-length, with a pattern of intersecting black hash lines over a white background; and the black cardigan compliments it well.  For a brief second, it crosses my mind that it would be appropriate at a funeral, and I wonder if I might soon be wearing it for Papa’s…. but I push the thought out of my head and refuse to dwell on it or acknowledge it.  We purchase the dress & cardigan and a few other pieces and head out for dinner and a hike.

I’m grateful for our time away – just the two of us.  It’s good to have some time to process and talk things through.

And just to be together.

Definitely feeling recharged when it’s time to pick up the boys and jump into “reality” once more.

Day 3

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Email: (from Nana to friends & family)

Hi all,

Sorry about this big group email, but a couple days ago [Papa] was doing fine then in the evening started having garbled speech.  Kari and I took him to the E.R. and after some tests discovered he has a brain tumor.  He is feeling good and in very good spirits; we just have a very hard time communicating!  He is to have surgery to remove the tumor next week.  There are a lot of unknowns right now, but we are hopeful for a good outcome.  He will likely come home from the hospital tomorrow, then we will go back for the surgery.  So far he is not getting too frustrated and has a good sense of humor.  I am doing well; trusting the Lord for His good will.  I have been staying at the hospital and will go back after getting cleaned up a bit.

Thank you for your concern and prayers!  I will keep you posted.  Needless to say, we will not be going to CA and places in between at the end of the month.

Love,  Papa and Nana

 

My Reflections:

We celebrate the birthday of our little cousin.  It feels strange doing something so “normal” when life seems anything but, considering the present circumstances.  It’s almost easier being at the hospital because then I can at least feel reassured that Papa is doing ok in the moment.  It’s not being there when the enormity of what’s happening sets in.  But it’s good to celebrate with J’s family and I know the boys are happy to be in on the fun.

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C Bear all decked out in the “Bob the Builder” theme, and ready to dig into that cake. The cartoon’s theme chant “Can we fix it? Yes we can!” seems a bit presumptuous in the larger scheme of life today.

While at the party, Papa’s brother, calls.  He wants to get the latest update, but even more than that, he has a generous offer for us.  He won an iPad in a recent raffle and already has one of his own.  Could he send us this extra iPad to possibly help Papa in his communication?  There are apps we can get that could be useful as well as the opportunity to FaceTime with family far away.

“Um wow.. Yes!, that would be great!,” or the like is my response, and Papa’s brother arranges for it to be shipped to me ASAP so Papa can start using it right away.  I’m so touched by his willingness to do this; just one of the many, many, kind & generous gestures to be shown to us in the days ahead.

When we return home from the party, there’s the usual chaos of life with three boys.  In the midst of changing Little M’s diaper, I discover he’s had a major blow-out, much more than any wet-wipe can handle.  As I take his squirmy, poopy mess to the tub and then begin to bathe him, the emotions start to swell in my chest.  I get Little M cleaned up, and by the time he’s back to the changing table for a change of clothes and fresh diaper, continuing to wiggle and squirm all the while, I feel completely in over my head.  The waves of my emotions are starting to take over.

“J, can you please HELP me up here!,” I yell in desperation from the 2nd floor nursery. J comes and with no further explanation, I just look at him and say, voice breaking, “I can’t do this anymore!”

And leaving J with the baby, I rush out and into our room, to my closet, shut the door, and fall to the floor in a heap, right there under my skirts and my dresses.  And that’s when it all comes crashing in on me; all that’s transpired these last few days.  And I let out big, choking sobs, curled in a ball, right there in the safety and sanctuary of my closet, right there on the floor across from my shoes.  And I sob, and I cry, and let the tears finally come in full force.

And a little while later J comes and sits next to me on the floor.  And he talks to me and tells me it’s ok; that it’s a lot to take in and that it’s all happened so fast and that it’s good to let myself finally cry.  And I’m thankful for his support.  And I’m scared and I’m sad and I don’t know what else yet.  And eventually I get up off that floor in my closet, I wipe away my tears, take a deep breath, and somehow get it together to just keep moving forward through the day.

When evening comes, I make my way back to the hospital to visit with Nana & Papa.  And, thankfully, Nana & I make some important discoveries about Papa’s ability to communicate.  He’s able to tell us (in his own gibberish) that not only is his speech mixed-up, but what he’s hearing other people say is mixed-up too.  For instance, when the nurse asks him a certain question, he hears an entirely different question.  Her words don’t sound mixed up to him, but just come across as different words than what she’s actually saying.  We’ve just been assuming Papa can clearly understand what we’re saying, but this new insight definitely helps us understand why he’s seemed so out-of-it at times in his responses.  Now we know he just needs further clarification when we or the nurses speak to him.

An even bigger break-through comes, though, when he wants to use his laptop.  I stand there looking over his shoulder, thinking there’s no way he’ll be able to correctly type in the password to get into his computer.  And then I watch, dumb-founded, as he speaks aloud each character in his nonsensical way, yet actually types the letters correctly (for example, saying fu, da, swa, shoo, fee, while actually typing k-i-t-e-3).  Nana & I begin to write out questions to Papa, and are amazed when he completely understands what we have written.  His speech and our speech are mixed-up, but his comprehension of the written word is still good!  What a relief to know there’s a way he can clearly understand us!

There’s still a long way to go, but we’re slowly adapting and learning how to better understand Papa and vice vs.  I’ll take that.  I’ll take whatever ray of hope we can get right now.

 

Email: (response from me to Papa’s brother)

Thank you so very much!  I know he’ll have fun with it [the iPad] and I’ll do my best to help him with it too.

Want to share a bit of details about my visit with my dad tonight; feel free to share some/all of this with the rest of the siblings if you think they’d be interested.  I know it’s hard to get an idea for how things are going with my dad when you’re so far away, so here’s a little “window” into his world at the moment…….

Was very encouraged in visiting with my dad tonight, especially considering my conversation earlier with you concerning the iPad.  Each time I’m with my dad, I learn more about communicating with him.  As I told you over the phone, the biggest roadblock in his communicating is his mixed-up speech.  For the most part, he speaks fluently, but as if in a different language.  Most words you can’t understand because the words are all mixed up or he gets some letter sounds right, but then adds on other letter sounds to words (saying “chumer” instead of “church,” etc.).  Then he’ll throw in a word or phrase here or there that’s perfectly clear and understandable (like tonight when he spoke in a whole string of nonsense words trying to explain to us what he was talking about, and then he just paused and sighed and said, clear as day, “I wish I could talk.”).  We’ve tried having him write words, and that is a struggle too as he can write letters clearly, but gets them all mixed up, or gets stuck in trying to figure out how to spell something.  Tonight he was verbally spelling out words for us and, again, he was just spelling nonsense words.  It was interesting though, because when he spelled them verbally, he would also trace the letters in the air, but the letters he would speak would be different than the ones he would trace in the air.  If we could pay attention to the traced letters, often they would make more sense than the letters he spoke (for example, he’d say “N-U-U-Z-T,” but as he spoke, he’d trace B-I-L-L-S… then we’d say, “oh, bills?”  and he’d say, “yes, that’s what I says.”).

Also, there are times my dad seems a bit “out of it” and unable to comprehend questions…. not “quite all there,” if you know what I’m saying.  Usually this is with the nurses or doctors.  For instance, a nurse would ask, “Can you tell me your birthday?”  and he’d just look at her funny, or shrug, or list numbers from an old home address, etc.  Well tonight, my dad was able to explain to my mom & I that he would hear people say different things than they were actually saying.  He commented how weird it was because it wasn’t like he was hearing the nurse speak in “jibberish” (as he put it), but that his brain was actually hearing her say different words than she was actually speaking.  At some point today somebody got the bright idea to write down their question and then my dad was able to read it and comprehend it no problem “Oh, you mean (such and such)……!”  He read it, and the lightbulb went on for him and the very question he hadn’t understood when someone spoke it, he understood and answered (in his language, but enough for us to know he knew what we were talking about) after he read it.  Thus we discovered that all we needed to do was write things down when he wasn’t getting what we were asking or saying.  It was encouraging to know he was more “with it” than he was letting on at times.  There definitely is a disconnect in his brain with forming words verbally and receiving them orally, but this doesn’t mean the capacity for him to understand and respond aren’t there…. we just have to be a little more creative in the way we go about it at times.  The more we communicate with him, the more we’re able to find ways to understand each other.  Sometimes it takes us a few minutes just to figure out a single word he’s saying, but usually we’re able to figure it out with a bit of patience and work on both sides.  Never before have I so intently listened to someone during conversations… definitely makes you focus as you try to understand, but it’s quite rewarding when you’re successfully able to communicate.  How does one fill the time during a hospital visit?  Well, we just sit around and try to figure out what everyone is talking about!  My dad is very appreciative for our patience in conversing with him and commented how most of the nurses and doctors who come in really don’t care what he’s trying to say and only pretend to try to understand him (and yes, I have to admit at times my mom & I just nod and smile and act like we know what he’s saying when we don’t.  We try our best though!)

Another thing we discovered tonight – he’s still computer-literate!  My mom had brought his computer to the hospital, but was hesitant to pull it out thinking it might really frustrate him in trying to use it.  When we finally did get it out to look up something on it, he was persistent in typing in his password.  Even though the letters he was saying weren’t correct as he typed each key, the actual letters he was hitting were the correct ones – again a sign that he knew what he was doing, his brain was just mixing up the letters as he spoke them.  It took a bit of time to type, but he got it and was able to pull up what he wanted and shut down the computer by himself.  We didn’t use it very long, but enough to impress me that he still has the skills and the savvy and the recollection in using it.

ALL that to say, I’m excited with the prospects the iPad has in being a help with communication!

My dad, mom, and I also discussed some of the “hard” stuff that I’d rather avoid at a time like this, but that’s important to confront, all the same.  I asked him if he was comfortable with the decision to go ahead with the surgery and he expressed that he thought this was the best option;  that maybe it wouldn’t help, and maybe it would make things worse, but that it could make things better and that would be good.  He also told me a lot of what the neurosurgeon had discussed with my mom and him yesterday so that helped confirm that he has a good understanding of what’s going on and what’s to be done.  We also talked about some of the hard “what ifs?”and, fortunately, my dad has done lots of advanced planning and has household/medical/financial “stuff”in order to help my mom out if this surgery should leave him in a worsened state (praying that doesn’t happen!).

Anyway, that’s the very long (and wordy!) update, but I wanted to help give you an idea of what’s going on at the moment.  I’m not sure if you & the other siblings have Skype and could communicate via video with my dad that way, but he expressed an interest in this and I think this would be a good way to communicate with him as it really helps to see my dad as he talks (his body language adds a lot in helping to understand him).  I know Skype has the ability to type text as well and that might help for him to read some questions if he doesn’t understand some of what’s being said (my mom or myself could be there to help interpret too!).  Let me know if this is a possibility and we can set up a time to make it happen.

That’s all for now.  Will keep you posted with further updates.  Appreciate your concern and help : )

Love,

Kari

Day 2

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Email: (from me to a friend)

Thanks, [friend].  I did feel encouraged after the neurosurgeon was in today.  Surgery is scheduled for next week &, if nothing else, it helps to know things are moving along and this will lead to getting more concrete answers.  He seemed a bit optimistic about removing the tumor, although I know there are a lot of risks involved.  Find myself expecting the worst, but who knows what God will do?  One step at a time, right?  Have to keep reminding myself to trust God… feel like my brain is on overload with everything it’s trying to process.  Ugh.  I’m so, so sorry for all you had to go through with your dad.  Know you dealt with this type of stuff and so much more.

Appreciate your offer to help.  Until surgery, it won’t look like there will be anymore juggling of hospital visits, so that will help out a lot.  At this point, they’re saying my dad will be discharged probably tomorrow and be able to stay home till surgery.  Not sure how that will work out, but I’m sure that would be better for him than waiting it out in the hospital for surgery(?).  Then after surgery, he’ll most likely be in the hospital for 5 days of recovery, so we’ll see how that goes and I will keep you posted.

-Kari

My Reflections:

I visit Papa at the hospital today.  He has visitors from his & Nana’s church.  In talking with all of us, Papa is surprisingly very jovial and animated (even more so than Papa would normally be). He seems overly talkative and doesn’t seem to mind that we still can’t fully understand what he’s saying.  We do our best to communicate though, watching his exaggerated hand gestures and attempting to figure out the context of the conversation.  While there, a pastor from their church asks if he can read some scripture and wants to know if Papa has a favorite passage from the Bible he’d like to hear.  Papa’s able to communicate the verse and the pastor reads it… something about going out into the wilderness or such, a bit despondent in its tone and not at all what any of us present would consider the usual “favorite verse” fare.  But the pastor obliges and then we joke with Papa about why he picked it.

After Papa’s visitors leave, I stay and chat a while longer.  I use the term “chat” loosely as conversing with Papa at present is anything but what you’d expect a light, casual “chat” to be like.

At one point in our conversation, Papa tries to write out questions and responses to Nana and me.  We soon realize though, that Papa’s handwriting is just as mixed up as his speech.  He knows what he wants to write, it just won’t come out right.  He writes some words, and then crosses them out as he tries so hard to get his brain to formulate the words he’s trying to communicate.  Nana saves the paper with some of what he writes today.

He writes:

LARRY IS INAI  INAN  INTO AN A TN  TUSA TUMON TUSA T TUMONS BAM BAIND I.

Nana & I look at him and look at his writing and then look at each other as if to say “What the heck is that supposed to mean?”  And then we attempt to do what that nurse has told us to do: work at understanding this gibberish.

He writes some more:

ASK EUSAMIN THUSAMUM

And we try to figure out whoever “EAUSAMIN THUSAMUM” is by asking question upon question and suggesting anyone we can possibly think of.

And then we take a good 10-15 minutes of back-and-forth over QUALISE and SEISENP; and then AUUA, COSTS, COSTO, KIBL, CUSMTL, and SAMS; just to figure out that Papa’s asking about what brand of hearing aide I have.  When I tell him it’s Widex, Papa responds,

“Yeahhh, that’s what I say…., SEISENP!”

He’s trying to let me know about hearing aides being available at Sams Club and wondering if they’d be just as good as what I have.  It’s his attempt at small talk, but, unfortunately, just “small talk” takes an excruciating amount of concentration, focus, and patience on Nana’s and my part.  It’s like trying to solve a big coded mystery, except the “big” mystery involves such things as hearing aide brands and wholesale shopping marts.

My brain hurts when I return home from the hospital.  This communication business is exhausting!