this hurts

It's been two and a half weeks.  My chest is still so heavy, and it still hurts so darn much.  It's crazy how life just goes on.  Work is still work, Madysen's softball has started, Mom sewed my curtains, and the kids are having finals this week at college. I get that life is good, I do.  We are blessed in so many ways. But Dad's not here.  I think about it all the time.  We are all staying busy, and I think
we are doing as expected. It's just hard.  I can be at work, busy, and a patient has a shirt like Dad, and I start to cry.  Or I see an old couple, and I get sad because that should have been my parents, 20 years from now.  Seeing pictures of him can be either comforting or make me cry.  Oh man, the smell of him in his coat and his pillow...


I think back to just a year ago.  Dad had been saying last winter that his voice just wouldn't project, but I really hadn't noticed anything.  In retrospect, after listening to his voice on old videos, I think that his voice had maybe gradually weakened and I just got used to it.  I remember him saying awhile before that his hand s were cramping, but I didn't really think much of it.  He had a fall off a high ladder in Sept 2011 while painting the house.  Mom and Dad were so busy and worked so hard getting the acreage ready to sell it, so that they could move to the Black Hills.  Our attempts to get him to see a dr weren't successful, which wasn't surprising to any of us.  I didn't know that he had been having muscle twitching for awhile.  I remember him saying last spring that he just didn't have the strength that he used to have.  I assumed that he was just feeling his 60's a little bit.  He was bothered when he tried to help with cement work at a friend's house.  Again, I thought that maybe he needed to cut himself a little slack.  Cement work is hard, and he wasn't 20 anymore.  He helped Bill move in January and Bill didn't notice anything amiss.  Mom and Dad went to Washington DC last April and he did absolutely fine with tons of walking, and had a blast. 

So when he started to say that he was having trouble raising his arms and with arm strength in the late spring/early summer, I figured that he had hurt his neck with his fall and needed something done with his neck.  My first moment of dread occured last Easter Sunday, when I watched him try unsuccessfully to lift Nathan up onto a chest high tree branch.  He couldn't do it, and Jared easily did.  Dad normally did that without even thinking about it.  I remember calling Erin over to the window and saying, "this is weird, what'g going on?"  But like I said, I thought it was probably his neck. 

Just a year ago. 

June was spent with testing for his neck, all negative.  Dad was starting to look so frail and thinner, although he swore he hadn't lost weight.  We didn't see the muscle shrinkage under his clothes.  A rheumatologist raised the ALS question.  July was spent with neurology appointments and testing.  Just the fact that he was even willing to see different doctors showed us how crappy he felt, and filled us with dread.  Looking up symptoms of ALS:  muscle twitching and cramping, muscle weakness, difficulty projecting voice, impairment of use of arms or legs.  I remember my stomach just dropping.   

It just feels like we went from blissful ignorance to fear and grieving so quickly.  I mean, who gets ALS??  In 27 years of nursing, I remember ONE patient with ALS.  One.  And then it happens to Dad.  I don't get it and I don't think that I ever will. 

Anyway....gotta stop feeling sorry for myself.  Get my butt in the saddle and start galloping, and all that.  That's what Dad would say. 

And in that spirit of galloping, we are planning a couple of things.  We have a trip with the entire family planned for late June to go to the Hills and camp.  We are going to go on a walk at Slate Creek, Dad's favorite horse trail.  Bill's familiy, the Hills, Mom and my family.  Kind of a memorial trip and walk.  Dad asked us to do this and would love it. 

Melissa also shanghaid us into participating in a 5K run in Omaha in mid July.  Running 3.1 miles together in blazing July heat and humidity.  So far it's Melissa, myself, Erin, Mom, Madysen, Abby, Tyler, and Jordan. It's called the Color Run and it looks like fun.  (IF we survive) 

Dad would really get a chuckle over that.  He'd think that we are nuts (and he'd be right) but he would be right there along the race, wearing his hot Wrangler's, cheering us on.   Go team Sweet William :)

From Joan

It has been Bill and Joan since we were  16 years old.  ( I look back at some pictures of us and I laugh at our cute little baby faces back then. )  With just a few brief times of one or the other of us thinking we should date someone else when we were young and dumb, it has been Bill and Joan for over 50 years.  I have often said that I am not sure that there can be a Joan without Bill, yet I know there has to be. 

Yesterday morning without even thinking about it, I opened the closet and took out his blue jacket.  Just like I have heard that people do, I took the jacket and hugged it and smelled it because that is the only thing left unwashed and still holding his scent.  Even his side of the bed and his pillow no longer give me an awareness of him because they too have been cleaned and changed. The blue jacket will never be............

I know Bill would not want me to mope around, and I really haven’t been doing that. I have instead poured myself into work that could wait, but making this house that he got for me as nice as possible honors him, and hard work heals me. I am thinking about the things that I will do...Bill and I talked about many of the things that he hoped I would do like continuing to go places with my kayak, and other stuff that he knew I enjoyed.  Even when he was so incredibly sick that each day had to be a major effort for him, he thought about me.

 We got a card from Bill’s cousin Grady, and he told us about Bill teaching him the following poem.

“Starkle, starkle little twink, what the heck you are you think?  A flashlight?? “  Grady he said that he has repeated that to his kids and so another part of Bill’s legacy continues.  Bill had hundreds of what we call Bill-isms and this little poem was one of the “repeatable ones.”  It makes no sense, but it is funny and it was Bill.

Can it be Two Weeks Already?

I cannot believe it has been two weeks since you went home to heaven, Dad. 

There are so many things I want to talk to you about.  Big things, little things, everyday-type things.  Getting use to being here without you is tough ... it's weird.  It's not right, really, especially when you were Dad and a "BFF" all wrapped into one.

You asked Lynette & I to be strong for Mom, so we are there for her ... more than she even wants :) 

Miss you tons.  I hope you have some idea of the respect that has been shown to us, on your behalf, by your friends.  The funny stories, the compliments about the man you were.  They bring comfort.

There are things we don’t want to happen but have to accept, things we don’t want to know but have to learn, people we can’t live without but have to let go.  Unknown

I will love the light for it shows me the way, yet I will endure the darkness because it shows me the stars.  Og Mandino

Two Weeks

Is it possible that my dad has been gone for almost two weeks? Time certainly continues to go on whether we are prepared or not. What we would like to know is why? Why did Dad have to get sick? If he had to get sick, why ALS? Why so sick so fast (though ultimately in ALS world that was a huge gift). One of my biggest questions throughout this process is why my dad? I mean, there are a lot of really bad people in the world. I don't understand why they get to stay here doing their really bad things and my dad is gone. Seems like we have plenty of abusers and murderers the world could live without.

Unfortunately, we don't get to know why while we are on this side of heaven. Or maybe not knowing why is a blessing. Certainly God's plan is too complex for my little brain to understand!!

Yesterday we went to soccer and to a movie. Had lots of laughs with Mom, then we all feel a little guilty for laughing so hard and in the next moment there are tears. But we are so thankful for the moments of laughter. They are healing moments, and Dad would want us to be as happy as possible.

My cousin told me to be still in the moments I need to hear my dad and if I am quiet and still, I will hear him. Gosh I hope so!

Thank You from Joan

Hi everyone - Just a quick note to say thanks for everything.  We are slowly working on thank you notes, so please be patient with us.  We are enjoying slowly opening and reading the cards and all of the wonderful stories and comments.  Bill was well-loved and respected, that's for sure!

Happy Birthday

Happy birthday in heaven, Dad!  Today is a hard day and the weather isn't helping.  Nathan and I talked this morning about a birthday party and Jesus in attendance.  Kids have such a cool thought process!  We miss you very much and you are loved.

Just a week ago.

     Well it's been quite a hard few days.  A week ago tonight, at about 9:30, I was alone with Dad at the hospice while Mom ran home to be sure that the furnace was on.  And we had our last conversation.  He wasn't able to speak, because he was so short of breath and just didn't have the air and muscle strength to push out words.  But he could nod.  His head was hanging down, and I asked if he hurt.  I was able to figure out that his bottom hurt from sitting in the recliner, and he stood up briefly with my help, and we readjusted him temporarily while waiting for the nurses to come help get him comfortable in the bed.  His head was hanging forward, and I said, "Dad, is your head too heavy?  Are your neck muscles weaker?"  And he nodded, yes.  Oh my gosh, what a awful feeling for him.  And so hard for me to see and realize.  Yet another ALS gut wrencher moment.
     The next day, he slept most of the day.  He would still wake up, briefly, on Tuesday.  But his last time in his trusty recliner was a week ago tonight.  Seeing that empty brown leather recliner at their house is hard, and Mom plans to donate it to the ALS association. 
     This disease is a beast.  A horrible, slithering, evil beast.  It takes and takes and takes.   I am beyond sad, and my heart is so heavy.  I don't think that the loss of my father has completely hit me yet.  But for now, when I am sad, I am trying to remember some of the moments of loss like that.  And I remind myself that his body is perfect in Paradise.

     We posted the oldest 3 grandkids' talks from the funeral.  Man, did they ever love their Grandpa.

Jared's talk at funeral

The past few weeks I've really been thinking about what I learned from my grandpa.  A few things stick out:

• Sometimes when you have a child like Erin, you just have to shake your head and laugh.
• It's never too hot to wear jeans.
• No matter how old you get, it's still more than okay to tease just about everyone you know.
• And if you're a basketball referee, you're wrong and it's okay to let you know about your mistakes.  Loudly.

As important as those things are, there are 2 things that I learned from him that I'm always going to make sure to implement into my life every day.  

1)  I've never seen somebody as courageous as my grandpa in the last 9 months of his life.  He never complained.  He never asked why.  He just accepted the plan God had for him and lived the remaining time he had with the same amount of joy and spunk he did the first 60+ years of his life.  The way he did that makes a test or a problem at work seem a little less like a problem.  No matter what life brings my way, I want to make sure to live it with the same courage he did.  

2)  We've all learned so much from my grandpa Bill, so it's nearly impossible to narrow this down to two things.  But for the sake of time...

I learned that if you have a loving wife, a trio of amazing kids, a handful of grandkids, and as great of friends as my grandpa had, then you have more than enough.  My grandpa wasn't a rich man, but him and my grandma worked hard to give their family a life they could be proud of.  And they did.  If I end my time on this earth with the amount of great people and love my grandpa had, then I will leave knowing I lived life right.  Just like he did.  

Melissa's talk at funeral

The question that has been on my mind all of the time lately is, how can life go on?  How does life go on from losing somebody as great as Sweet William?  Within the last couple of days I have learned that life unfortunately does go on, but that doesn't mean that we have to forget our Sweet William.  I am always going to remember my grandpa's perfect smile and that twinkle that he always had in his eyes.  You could tell what type of mood he was in just by looking at him.  His deep voice and laugh.  The wrinkles on his face from way too many years of sun and no sunscreen.  His dirty old wranglers and button up shirts.  His goofy personality and even his not so goofy personality that I am sure most of you know what I am talking about. :)  But most of all....we are going to remember him.

All through my grandpa's battle with ALS, he never once complained.  He had every right in the world to be angry and have a poor me attitude, but instead he faced the disease head on and I heard him once say to my aunt Erin, "I can either be mad about it, or I can look forward to Heaven."  That was just the type of man he was.  He's the strongest man I know.

I'd like to share a verse with all of you that is one of my grandpa's favorites.  It's from Deuteronomy 31:6  "Be strong and courageous.  Do not be afraid or terrified because of them, for the LORD your God goes with you; He will never leave you nor forsake you."

Jordan's talk at funeral

My grandpa was a humble man; he never liked to be the center of attention.  In life and now in death, he wouldn't want us to focus on him.  He wouldn't want us to focus on the sadness of his death, but instead to focus on the happiness in our lives.  He would want us to appreciate each other and our future.

A man like my grandpa will always be remembered by those of us who knew him and loved him. Although we will miss him, his smile, his Bill-isms as the family calls them, most of which I can't repeat right here right now, his love, his quick temper which most of the time was hilarious, we take consolation in the good feelings of our memories and knowing he is where he is supposed to be now.

I became extremely close with my grandparents at a very young age as I became extremely interested in doing the horse stuff, but at 24 years old I realize it was never really about the horses, it was just fun hanging out with my grandma and grandpa. I’ve spent a lot of time with them on the road, on the trail, at horse sales all over the area through the years. Spending as much time as I did with my grandpa specifically gave me a front row seat of what a husband, father, grandfather, and friend should be. Many of you here know he would give you the shirt off of his back if you asked, or you didn’t, it really didn’t matter to him, he’d help you if you asked or not.

As my grandfather became more ill over the last few months he really started taking interest in his funeral & how it would all be arranged. It was strange to us that he seemed to be skeptical that many people would show up at the visitation or the funeral, like he wasn’t all that popular of a guy. I’d like to thank all of you for coming last night and today and proving him wrong, I don’t think he really understood just how much people loved and appreciated him over the years.

In the end ALS could not defeat Bill Haagenson, it could take away his body but it couldn’t take away his mind or his heart.  He said all along that just because he was sick he wouldn’t let anyone make him their dancing monkey.   He lived life on his terms, and his terms alone until the end and I believe there is something to be said for that.

With that being said, Grandpa, I will always miss you. But I have so many memories to hang on to. You were a role model, and one of the best friends that I will ever have. Your guidance and example will carry me through to the end of my days. I love you Grandpa, & I hope the family and I have made you proud, because we are so very, very proud of you.

Walk to Defeat ALS 2012

Please mark your calendars for October 20, 2012.  Join us to raise money to beat this wretched disease, offer support to each other and those suffering, and more importantly - - honor my dad's memory! Hope to see you there!

Blogging

Dad - I miss you so much already.  I am afraid that letting go of this blog is going to be hard because it means you're really gone.  So we will continue to blog through our grieving process, through missing you, and through figuring out what our new normal is going to be.  Love you.

Thank you!

Just a brief note to say thank you to everyone who came to Dad's visitation tonight.  What a great turnout for a great man.  Thank you. 

Thank you to those that have brought food, drinks, and paper products.  Thank you for the visits, and for your prayers. 

I don't have anything profound to say tonight.  I am afraid that if I let myself start crying, that I may never stop. 

Funeral Service

Visitation with Family:  Fri., April 13 from 5-7 pm Minnehaha Funeral Home (Garretson)
Funeral Service:  Sat., April 14, at 1:00 pm Palisades Lutheran Church

At this moment it feels like I am typing funeral information about someone else.  It is surreal.  To lose him is almost unbearable.  To keep him here, suffering so much, would be selfish.  We had the most incredible experience getting to be at his bedside and cheering him on as he crossed into God's kingdom.  My heart is broken ... so many tears ... but what a beautiful lesson in what truly matters.

Dad left this world better than he found it.

Paradise

I have fought the good fight, I have finished the race, I have kept the faith.
2 Timothy 4:7

Dad died peacefully, surrounded by family and love at about 10:30 this morning.  It was wonderful.  He is saddling a horse right now in Heaven.

one a.m.

Sitting here in the quiet beside Dad, watching him in what I know is the final hours.  He is peaceful, and is surrounded by people who love him so much.  Mom is on one side, me on the other, and Erin at his feet.  Bill is an hour away yet. His grandkids have been here.   I hope that this amazing man knows how much that he is loved.  This world is a better place with him in it.

Numb

We have decided we absolutely made the right decision coming to the Dougherty House.  The staff has shown incredible kindness, support and direction.

Dad's breathing continues to worsen.  Dr. Malone stopped by this afternoon and talked "plain talk" to us ...which we greatly appreciated.  He said Dad's respiratory reserves are down to nothing.  Breathing is very shallow and it could be anytime.  Hours to a couple of days at the most.  We are hunkered down in Dad's hospice suite.  Mom in a chair on one side of the bed.  Lynette and I trading off on a chair on the other side and a mattress on the floor.  Bill is on his way from Cheyenne.

In a way this doesn't seem real.  The ALS has ravaged his body so quickly and relentlessly.  As he lays here struggling to breath, the twitching in what is left of his arm muscles continues.  It is a beast. 

We brought pictures from home and it's fun to hear the nurses speak about Dad's good looks.  He is such a handsome man, so kind, so loving, temperamental, fiercely protective.

Dad has been showered today with hugs, kisses and hand-holding.  I am so proud to be his daughter.

Changes again

He is so much more sleepy.  They started a morphine drip late yesterday afternoon, as a way to help with his breathing and to give a steady dose.  He spent the evening semi awake in his recliner, and we put him to bed at about nine thirty last night.  He peacefully slept until Mom and I asked them to reposition him at about 4:30 this morning.  He was so peaceful that we hated to disturb him, yet we worry about him lying too long in the same position.  He doesn't have fat for padding. He's now repositioned, and woke up but went right back to sleep.  Changes again.

I spent the day yesterday in a semi angry phase.  I have made peace (as best I can) with losing him.  What I haven't been able to understand is why he must continue to suffer from this awful disease.   I want his fight to end and for him to have peace in Heaven.  But apparently it's not time yet.

I do feel that he is getting closer.  He is resting quietly, currently sleeping in the bed, with Mom sleeping beside him in his recliner, and they are holding hands. 

We wait, but at least he seems comfortable, and that's a gift.

Psalm 31:14-15 “But as for me, I trust in You, O LORD; I say, “You are my God.”
My times are in Your hand;” (NKJV)

Dougherty House

As of Saturday night, Dad was admitted to the Dougherty House for in-hospice care.  He had a couple of bad nights of falling, etc.  This has been a very tough couple of days  - -  it is yet to be determined if we are here for a brief (5 days or so) respite stay or for the long haul. 

Dad's condition continues to worsen.  There is good news in that he was able to have the catheter removed.  He is occasionally confused and that was a huge annoyance for him.  He was able to urinate on his own last night and this morning (though next to no urine) but has not been able to go this afternoon.  We do not know yet if this is urinary retention from the narcotics or a shut-down.  They will be doing a bladder scan at some point to check for urine.

Increase mouth secretions (spit, to be blunt in a way my father would appreciate) has lead to a need for a patch behind his ear to help dry it up a bit as well as some suction.  Sometimes he can do this alone, but sometimes needs our help.

We are battling feelings of letting Dad down if we need to stay at Dougherty House.  It was our family's plan that he would remain at home, but nothing has gone according to plan.  This disease has been relentless in its attack on him and surprises us every day in its level of cruelty.

Dad continues to amaze us with his reserve strength - he hasn't really eaten anything in days and fluid intake is minimal, especially now that he takes no pills orally and only through the "button" they put on his arm.

Please continue prayers for comfort, peace and trust in the will of God.

Changes and decisions

     Terrible night again last night.  Dad went in to the bathroom, and lost responsiveness and strength in his leg and arms and almost fell again.  Mom and Erin were right there, and called for help.  By the time the rest of us got here 15 minutes later, he was responsive, but pasty white and looked awful.  The guys carried him out to the bed and he gradually perked up some, and then slept.  We all honestly thought that he was leaving us last night.

     There is a significant difference in his strength today.  He still wants to walk to the bathroom, but it takes two of us to assist.  He was awake and quite aware for an hour or so around noon, but was pretty sleepy all morning and is sleeping again this afternoon.   He has not had alot of medications today, and seems to want to wait.  He has a bladder catheter in, and urine output is very low.  He is bothered by bladder spasms from the catheter, and is getting a little relief from a heating pad.  Dad notices a change in how he is feeling today, and when I asked if he is in pain, he says no.  He says that he is weaker.  He is nodding to questions, and still writes short notes.  He still gives us weak little smiles.  Things have changed enough that we feel that we need to have two people here.  As weak as he is, he still manages to get himself up sometimes, and someone has to be right here. 

     His fluid intake remains very small, just sips with pills.  His swallowing seems to be worse today, and it's harder for him to drink with a straw.  He ate a couple of bites of applesauce yesterday, and nothing today. 

      We believe that he is nearing the end of this battle.  I don't think that it is imminent, but we are seeing definite changes. It's been our intention to care for him at home until the end.  It's just getting to be harder to do as he gets weaker.  We are discussing using the hospice facility at Avera, the Dougherty House.  None of us want to let Dad down, but we also want to do the best by him.  A friend told me, "sometimes promises are made with the best of intentions, but reality interferes."  Dad is aware that we may do this, and agrees.  I honestly believe that he understands and would forgive us. I am also thinking of him a few days ago, when the windows were open, and we could hear the traffic and the neighborhood dogs, etc.  He said, "I wanna go home" with a weak smile.  This city house probably isn't home to the country boy, anyway.   As of now though, a hospice bed isn't available. 

      We pray for strength for us, comfort for him, and that soon he can be done with this suffering and be home with Jesus.  The thought of losing him is unreal, yet the thought of him continuing to suffer is worse.  The song, "When I Get Where I'm Going" by Brad Paisley is my current favorite.  

    

  

    





    

Mad

I am really going through a mad phase today, but I thought I already went through that phase.  Turns out the phases repeat themselves.  I have yelled at strangers this week (both of whom had it coming), but Tyler says as long as I only yell at strangers I should just go for it.

Dad is experiencing some urinary retention.  They say this is due to the narcotics.  Had to have a catheter placed today.  This is upsetting for lots of reasons, not the least of which is that gone are his jeans and on are his pajama pants.  My dad always wears Wranglers.

This year I am so incredibly aware of Holy Week.  Not that I haven't been before.  It's just that now I am so desperately clinging to the resurrection and eternal life.   Thank you, Jesus, for giving your life so that I can live eternally with you and the loved ones who go before me.  I know that this life is so brief in comparison to eternity.

Please pray for my dad's comfort and for his peace. 

Scary night

We had a scare last night.  Dad wanted to try their bed in the bedroom, as it had worked for about 4 hours the night before.  He and Mom were there alone, and he got short of breath lying down.  He stood up while mom was in the living room briefly, and fell.  He was acutely short of breath, lying on the floor and Mom called us for help.  It took Erin 7 minutes to get across town, but Jordan and Noelle got there first.  It came in handy to have a strong young grandson, and Dad got lifted back into bed.  His breathing was extremely labored for quite awhile.  By the time I got there, he was in the recliner, but still really working to breathe.  It was so hard to see.  Melissa came home from Brookings and stayed there last night. 
It answered the question of which is worse, sleepy or short of breath.  The answer is definitely short of breath is worse.

update

     No significant changes, but definite steady decline.  With the help of hospice, we've been adjusting medications for his comfort.  The shortness of breath is constant, as is the restlessness.  It's taking a combination of medications to help.  The meds seem to help, but when the symptoms are controlled, he gets pretty sleepy.  It's hard to see him winded and anxious, but I have to say that it's pretty hard to see him really sleepy too.  His last couple of nights have been a little bit better, and he seemed to rest better last night.  It has to be an awful feeling to not be able to sleep at night.  I would say that he is weaker overall, and the swallowing is getting dramatically worse.  We have suction available to help with secretions, and he uses the cough assist machine.
     As I said before, the loss of his ability to speak is heartbreaking.  He is able to write short notes, when we aren't able to figure out what he wants.  It's hard for us, and harder for him.  We miss his voice so much already.
     This awful disease is relentless.

ALS Does Not Define Our Dad

I came across this picture tonight.  It's from Madysen's birthday in October 2011.  A pic of Mom & Dad with two of their favorite people.  I can't believe the physical change in Dad in the last 6-7 months.  It's startling to say the least.

BUT it's important to remember that ALS does not define my father's life.  It is a life rich in love, joy, peace, worry, challenges, hard work (lots of work), humor, tears, tantrums, prayer, faith and fun.  ALS is a thief, but it will NOT take away everything.

And Lynette's right - - I will be forever thankful that we were able to take our family trip last fall.  What a blessing!

Golden Corral

     I love opening this blog and seeing that picture, even though sometimes it makes my breath catch.   

     Erin took the picture one day on our family trip in early October, 2011.  I love the twinkle in his eyes in this picture, even though he was already so sick.  I believe that it was taken outside of a Golden Corral restaurant that we found by accident just on the other side of a civil war battlefield site. It was literally a half a block away from a battlefield.  Dad has always loved a good buffet.  He likes the variety and the value for the buck.  And Golden Corral has been one of his favorites. None of us can see a Golden Corral without thinking of Dad.

     For those of you that don’t know, we took a family trip.  9 days on the road, in a van, with the five “originals”.  Mom, Dad, Bill, Erin and myself.  It was a trip across a big chunk of the country. It started with plans to see Civil War battlefields.   We saw Gettysburg, Manassas, and Appomatox.  We also saw the United Flight 91 memorial, Shenandoah National Park, Washington DC, and Mount Vernon.  It was 9 days of 5 adults in a car and it was so much fun.  We were only about three months into the diagnosis, but he was already so tired and weak. We found out that handicapped accessible is not always convenient or easy. 

     We are all so thankful for this trip.  We had a ball.  If we had waited even another month, I don’t think that we would have been able to go.