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 

Pride & Love

Hello Sweetheart!

I find myself awake early this morning and thinking about you. You are the only other person who would know exactly what I am feeling this morning. Pride is a good emotion too, and doesn’t always go before a fall. Today, pride and love are what I feel about our family and our friends after everyone came together to do the ALS Walk and a huge rummage sale. It is harder for me to write about it than it would be to tell you about it...I know you would know how I feel.

Remember how frustrated you used to get about Erin and her shyness with network marketing? You would always say that if she would just let herself – she would be very successful in networking. Well hon, you should have seen her go with this. She did everything from TV to radio to social networking etc. She was awesome, and kept pulling her slightly sluggish Mom and the rest of us along in her enthusiasm.

She was definitely the leader, but everyone came through in some way. We were all there yesterday for the walk and then for the rummage. There was a ton of stuff to be lifted, marked and moved multiple times, and our family and friends did it!  We raised a lot of money, and even our Wyoming kids were involved as virtual walkers.

We had new blue Team Sweet William shirts, and while we were not the biggest team at the walk, we were surely one of the most enthusiastic. (And most loving) The littler kids looked so cute in their over sized blue shirts with the cowboy on the back.

There was only one person missing in all of this. I thought about pushing an empty wheelchair yesterday, but that would have been just too hard....Maybe someday I will understand the why of you being gone. Maybe it is so that we will all stand together to fight this vicious disease...I don’t’ know. I just know I miss you.

 
Love you Sweetheart – Always have, always will...

A Big Week

Dear Dad,

It's a big week this week.  One that I would have talked to you about.  Oh how I miss you.  I think it's a good thing we don't realize how much we'll miss people before they are gone, because we'd act like crazy people and never leave each other alone!

So this week . . .

First, I am going to be on the radio on Tuesday morning.  The folks at 97.3 are being kind enough to interview me to discuss the Walk to Defeat ALS and our Rummage to Defeat ALS.  I am nervous.  I am not a shy person, but a lot of people listen to that station!  Hope I don't sound dumb.  You would say, "Don't underestimate yourself."

Then we have the walk and rummage on Saturday.  We could use a good turn out, so if you could put in a good word I would appreciate it.

We reached the 6 month mark since your death on the 11th.  I can't believe it's been 6 months.  You died on a Wednesday morning.  Monday of that week was the last time we had a conversation.  I went home for a little while.  I said, "I'll be back after while you little dickens.  Love you."  (I called you that sometimes over the years --- I don't know why)  You grinned and said, "Ok, love you too."  While I was gone they started the morphine drip ... I wish I had known ... and you drifted off to a peaceful sleep which is good because your breathing was labored. 

(To the ALS families reading this, what hospice said would happen did .... they said when his breathing got too labored ... when it was to the point of severe panic ... they would IV sedate him and he would sleep.  That's exactly what happened.  It was truly very peaceful.  Those hospice people know what they're doing.)

Over that last night/day I talked to you a lot.  I hope you heard me.  I am so glad that in the months leading up to your death we were all so honest with each other.  I remember early in your diagnosis you said to me, "Do we really have to pretend we don't know where this is going?"  I loved that about you.  Just hit the nail on the head.  Just call a spade a spade. 

I am doing my best to fight this disease.  I promised you that I would go after it as hard as I could.  I hope you are proud & that I am honoring your memory properly.  You are missed.

On a lighter note, we have been thinking about things you used to say.  Here's one, "Well, that will go over like a pregnant pole vaulter."  You were a funny man.

With love, admiration & respect always,

Erin