Purpose?

"Regardless of what we go through in life,

there is always purpose wrapped within the pain."

                                                        --O.J. Brigance, ALS warrior

     At this time, last year we were deep in the throes of Dad's ALS battle.  His respiratory failure was becoming apparent, the BiPAP was a struggle, and eating and swallowing were so difficult for him.  We were by now aware that the disease was progressing relentlessly, and that his time would not be the usual 3-5 year from diagnosis.  Dad knew this, and was doing his best to prepare us.

     I've been missing him a lot over the last few days, and to feel closer to him I've been listening to old country music on my drive home from work.  Waylon, Merle, even Donna Fargo.  It makes me cry, but that's ok.  I used to talk to him most days when I got off work, and we'd usually talk while I drove from Sioux Falls to Lennox.  I always think about him now during that time. It feels good to cry, and feels better to remember.

     Grieving is a process.  It's a day by day, even minute by minute, adjusting to losing the most influential person in my life.  Dad was just so BIG, for all of us.  We've lost the one person that would always have our backs more than anyone else in the world.  It's a huge hole. 

     We are all doing ok though, doing as expected.  We were raised to be strong and to carry on.  We are doing that.  Mom's heart is broken, but she is day by day getting through.  Like it or not, life goes on.  But it's changed me, changed us all.  Even at work, after all these years, dealing with death and dying is now a struggle.  It's still too raw, and I avoid it as best I can. 

     I struggle to see God's purpose in this.  Was it to wake the rest of us up, to shake up our faith?   I believe that God does have a plan.  I just don't see how Dad's illness and death benefits anyone or anything, yet I don't believe that our loving God would do it to punish. I don't get the purpose.  We just keep hanging on to our faith, and to eachother.  I don't see how anyone could survive this grief without believing. 

     I also pray that our Heavenly Father forgives and understands, that right now, I look forward to Heaven because I miss my earthly father. 

     I believe that He does.  

New Year

What's the worst thing that can happen,
If they say my time is through?
Can they take away the love,
Or the years I've shared with you?
What's the worst thing that can happen,
That's the worst that they can do . . .
Threaten me with Heaven, it's all they can do

I hear angels through the window pane, calling my name
Someday when they carve my name in stone, I won't be, I won't be alone
If by chance a miracle appears, I'll dry your tears

Hello Sweetheart!

The first time I heard these words to this Vince Gill song you were still with me, and it was about a year ago. I stll listen to this song a lot. I think it could have been written for us.

It is the first day of 2013 today Bill – my first New Year without you. They can’t take away the love, or the years I shared with you. 

 

I love you – always have, always will.

 

Joan

Blue Christmas

Hello Sweetheart,

It will soon be Christmas.  Last night Tyler, Erin and I went to St. Marks for a “Blue Christmas" service.  I cried of course.  I still cry, but not as often as I used to.  Most times I can sit through church without crying, but this service was meant for grief.   I left church feeling better, and that is good.  Pastor Lori mentioned ALS and talked about a lot of things -  where we suspect she may have been talking about you.

I wish you had been able to go to church there Bill – They are good folks, and you would have been comfortable.

 

I was remembering some of our Christmases during the years we knew each other.  You always loved Christmas, but said it was because I loved it so much.  ....We always said we were not going to give each other anything, but we almost always did anyway. So many memories ...more than most people get.  Remember the year with the deer tracks in the driveway after we went on our Santa search?

I am having trouble writing more Bill -  I love you  and I miss you so much ... Christmas was always special for us and even when we did not have much, it was so special.

Love you sweetheart – always have, always will.

Christmas Memories

Christmas was a wonderful time for the Haagenson kids growing up.  There wasn't always a lot of money, but Mom and Dad always made sure we had a good Christmas.  We had all the usual traditions with stockings, food, a tree (or 3) with our little ornaments and the same nativity set every year.

When I was a kid, every year my dad would bring home the crew cab truck.  That was a big deal then when you didn't see them all over the place.  Then we would get in the truck and they would take me around looking for Rudolph's nose up in the sky.  We would come home to all kinds of presents.  One year, we even came home to find deer tracks down the driveway.  What a memory!

Was it all perfection?  Probably not.  I am sure there were years my folks argued about money or things didn't go just as they had planned, but I'll bet not one of the three of us can remember knowing that.

Merry Christmas in heaven, Dad.  It is just not the same hear without you.  Just know that ALS did not destroy who you were in my eyes.  If anything, it made you even bigger!  We will do our best this year, because the little kids need to have a great Christmas too!  That would be important to you.

Love, love, love you eternally!



Resources

If you found our blog and are a PALS, caregiver, family member or friend, we are glad you are here!  We are far from experts.  We just know how this walk feels and how it went for our dad and husband.  We would like to share some excellent resources for information and ways to get involved.  I am sure there are many, many more.  Here are just a few:

Your Local ALSA Chapter . . . Here in SD, our closest chapter office is in the Twin Cities and they head up the MN, ND and SD Chapter. . . http://webmn.alsa.org.  They not only give money to research, but also have great access to loan pools for equipment as well as staff that provide emotional support.

Your local Muscular Dystrophy Association.  They have a section dedicated to fighting ALS!

Team Gleason www.teamgleason.org.

Brigance Brigade www.brigancebrigade.org.

The Packard Center at Johns Hopkins www.alscenter.org.

The Caroline Rober Blog . . . My family found their blog very helpful. www.carolinerober.com.

Grief and Gratitude

"Grief startles us and blows holes in our lives."  Laurie Wallin

I have been planning all week to write something.  But what?  I was talking to Mom and Lynette on Saturday about writing on Facebook how great 2010 was as we went into 2011.  Then, in May 2011 my Grandma Hob died and 6 weeks later my dad was diagnosed with Lou Gehrig's Disease.  Want your blood to run cold?  Hear that diagnosis for someone you love.  Then, in April 2012 my dad died.  He died.  My dad died.  MY dad died.  My dad DIED.  You can't plan for that even when you know it's coming.

Anyway, I was saying that 2011 and 2012 really let me down.  But we got to talking about how there are still things to be thankful for.  That we should still have sincere gratitude for the blessings in our lives.  On my drive to work each day this week I have been thinking of all the things for which I am thankful. 

"How do we choose to allow the holes (in our hearts, brought on by grief) to become seeing-through-to-God places?"  Ann Voskamp

2012 has not let me down.  Here's why:

I have a nice, warm home with a full pantry of food and a soft bed to sleep in.  I have a washer and dryer and dishwasher.  I have a nice neighborhood for my kids to live in.  I have a great, loving little Boston Terrier named Maggie.  I have a job I like, working for and with people I like.  I have good benefits, a nice wage and a great retirement plan.  I drive a good vehicle.  I am healthy and even though I need to lose weight, that means I never, ever have to go hungry.

I have a husband who adores me and two amazing, smart, funny, beautiful little boys who are the reason I was put on this earth.

I have a family that has my back no matter what.  Good people came before us and good people will follow.  Nothing fancy about us -- but it's a legacy to be proud of.

We found a church and a pastor that just feel right for our family.

I have friends who showed up at times throughout this year (rummage sale, ALS walk, or just a random pizza) when I needed them most -- even if I didn't know how much I needed them.

We gained a new family member this year in my nephew's wife, Noelle.  She is the perfect fit for us and we are proud to claim her as one of our own.  We get another new family member next May because this year Jared and Abby got engaged.  My nephews have chosen beautiful, good, solid people to spend their lives with.

We took a beautiful memorial trip for my dad in June -- the whole family.  Tyler, the kids and I took a great little trip to Duluth in September.

Tyler, who has worked on the road a lot over the last 5 years, has been in SF since my dad got sick.  God must've known I needed him here and that is a blessing I never, ever, ever take for granted.

My husband has a family that I wish we got to spend more time with.

I am a USA-born girl, who loves this country and the beautiful freedoms it provides me.

The things I have been blessed with are too numerable to mention.

But something bad happened this year, too.  That's just a fact.  And it has changed me forever.  I think a person just has to make room for grief.  Dad won't be present for Thanksgiving this year.  The first one in my 36 Thanksgivings.  I think pretending there isn't an underlying sadness for each of us would be a mistake.  So we will acknowledge his absence.  Maybe tell some funny stories.  Maybe cry a little.

I had a great dad and that is something I will always, always be thankful for.

Information

When Dad was diagnosed with ALS, we were desperate to find information about what was ahead.  Sure, we knew the inevitable end.  That it is a fatal disease, with progressive deterioration, no definite cause, no medications to help, and no cure.  I am a nurse, and yet had pretty much zero experience with ALS.  I remember one patient in all my years.  His speech was significantly affected, and he would come in to the clinic with questions written out for me.  I would sit there with D, going through his cardiac meds and he would cry and drool.  And I would cry, because I felt so bad for the poor guy.  His mind was clear, speech was gone, and I wondered why would anyone have to go through that.  Then my father was diagnosed. 

We combed the internet looking for answers.  I knew where the ALS road ended, but needed to know the how's and most importantly, what would the end be like.  Would he suffer?  How bad would it get?  How long would it take?  Dad's neurologist was great, and he liked her.  But we didn't get alot of specifics, like an estimate of how long.  Oh sure, we got the textbook 3-5 years from diagnosis, but no real info.  I know that it's hard for a physician to predict, that every case is different, etc.  But I was really wanting answers. 

Part of our reason for starting this blog was to help others looking for information. 

In Dad's case, things progressed quickly.  He had involvement of his shoulder girdle/upper chest muscles.  The chest muscles and diaphragm are involved in breathing, and the weakness affected his breathing fairly quickly.  His pulmonary function testing the day of diagnosis was nearly normal.  Yet even then, he got short of breath when we were at the Omaha zoo last July.  The fatigue was immediate and quickly progressed.  He changed so fast, that we even wondered if he had something else, like an undiagnosed cancer or something along with the ALS.  We could tell that it wouldn't be the usual 3-5 year timeframe. 

He was unwavering in his decisions to not accept tube feedings or a ventilator.  We respected that, and even admired the courage that those decisions took.  For comfort, he tried BiPAP, but was miserable.  He decided that he did not want to live that way, and stopped using the BiPAP after a very short time.  It may have given him a little bit more time, yet it really didn't seem to be giving him quality. 

Accepting hospice was a big step for Dad, and for all of us.  We are so glad that we did.  They took care of bringing the meds, talking to the doctor about issues and med adjustments.  Most importantly, it relieved some of the pressure for us, of trying to see as a nurse would.  It was amazing to me that any objectivity and nursing judgment just evaporated.  I just could not see clearly.  Even at the end, when he was laying there with agonal breathing, I couldnt see how close the end was.  He wasn't a patient.  He was Dad. 

My main question was would he suffer?  Would he fight at the end, would the breathing be so bad that he would be air hungry and miserable?   The answer to that is yes....but.   He definitely suffered,  for nine months with decreasing muscle function and loss of independence.  He had a profound malaise, and incredible weakness.  His breathing was tough, and looking back, I believe that it was worse than he ever let on.  He didn't/couldn't eat, and I believe that it was a conscious decision.  Later, he couldn't swallow.  He lost his speech, and the last several days wrote us short little notes.  His life as he knew it changed, and he suffered. 

But at the end, it was peaceful.  Over the last several days, he became quieter, weaker and less responsive.  He received morphine continuously those last couple of days.  I believe that he was kept comfortable.  He stopped responding at all.  He was surrounded by family that loved him.  We talked to him, and sat with him, and held his hands. 

And on a sunny April morning, he quietly passed into God's Kingdom while surrounded by his wife, son, daughters and oldest grandson.  It was peaceful, and even beautiful. 

So to any one involved in the ALS fight, the end can be comfortable and peaceful. 

The courage that Bill Haagenson showed from the moment of diagnosis, was amazing.  He took it like a man, head high and brave....why am I not surprised?  Love you Dad.  Still so proud of you.

Lynette