Weaker

There’s been a significant change.  He is so much weaker.  Still alert, yet sleepier.  He had a tough night last night.  He’s weaker overall, and his legs are weaker.  He has fallen.

The saddest, most heartbreaking thing is that his voice is barely there.  He was trying so hard today so say things, and just can’t get sound out.  The thought of our talkative, articulate, witty, intelligent father unable to talk is just heartbreaking.  Unfathomable. I don't know of anybody who enjoys people and talking as much as him.  It's something  that we’ve been praying wouldn’t happen. 

Erin and I have been trying to keep up at work and at home, while trying to help Mom and Dad as much as we can. I don't think that either of us feels that we're doing all that great at anything right now.  Mom has really been doing such a great job taking care of Dad.  I think that it’s time for me to take some time off to be able to help more.  Erin has already cut back at work.  These are precious times.  His fluid intake is miniscule, basically just sips with pills.  His food intake is still minimal.  I think it shows how tough and hardy this Norwegian cowboy is, that he is still able to hang on.  I just wonder for how long. 

Asking again for prayers for comfort for Dad. 

I Hate ALS

Yesterday was a tough day.  Dad wished we could all go eat somewhere together like the old days (as in, a year ago).  He really didn't take in any food and little liquid.  He even had to write a note because his voice just didn't work.  I know he wishes he could play with the kids like he used to.

Ice Cream

Dad ate a small cup of ice cream today!  Didn't really eat anything else, but he said it tasted good.  He tried to drink a little bit of orange pop, but he gets a burp that he is unable to get out which I would imagine is really uncomfortable.

Nathan starts soccer games this weekend, and I know Dad really would like to get out to see a game.  I really don't know if that's going to be possible, but we shall see.  I love that he wants to! 

We continue to take this journey day-by-day waiting on the Lord.  Thank you for the e-mails that you are sending to our parents - - they really enjoy it.

more comfortable

Dad has been more comfortable the last couple of days with taking scheduled meds for pain, breathing, and restlessness.  He remains alert, but sleepy, and slept quite a bit today.  Yesterday's intake was a few sips of tea and a half a popsicle.  Today he's had a very small amount of water and half of a popsicle.  The weather remains so nice, and a year ago in this kind of weather, he would've been outside with the horses and working around the acreage.  I wish we could go back.....

Update

Just left Mom & Dad's house.  Dad is having a hard time breathing and is very sleepy.  Basically no food intake, but he did take a few sips of raspberry tea.  Hopefully that tasted good.  Please continue your prayers for comfort as he has been more comfortable today (as far as his back is concerned) than he has been in several days.

Dear Dad

Dear Dad,

I enjoyed spending a quiet afternoon with you, even though you slept.  You look so sick right now, and it hurts to see you so miserable.  So when you sleep, it seems like you get a little bit of a break from this disease.

I feel that I blew it this afternoon when you told me that you don’t believe that you have much time. You have tried so hard, throughout this tough journey, to prepare Mom and us kids.  I have so much that I want to say, and yet all I could do is sit there and cry.  

You started out with me as a 19 year old, still a kid really, and yet I believe that you were older than your years in maturity.  You loved me and protected me and took care of me.  I had everything I needed, and had a really great childhood.  You didn’t spoil me, and yet I knew that you were the softie that would buy the toys at the circus.  You never set curfews, yet I knew the limits. You might’ve said that it was “13 miles” when I asked to go to a school or social function, yet you smiled and handed me money for gas and my car headed down the highway over and over.  Those hot days picking up bales were good for me.  I don’t ever remember you spanking me, yet as stubborn as I was, you probably did?   And I am pretty sure where I got that stubbornness from.
 
You were not always a regular church going man, but Bill, Erin and I always knew that you have a deep faith in our Lord.  You and Mom raised us to absolutely believe.

You and Mom showed us real love, real marriage.   

You treat people right, and live by the Golden Rule.  And we learned from that.  Your word meant something to you.  And we learned from that. 

You raised me to be able to work hard, respect my elders, to know that when it’s all said and done, family is what matters.  You took one look at each of my babies and instantly loved them as much as you loved me. I cannot put into words what that means to me.  Your time and influence has had a significant impact on each of my kids.  And they worship you.

Thank you, Dad.  I love you.  I have been so blessed and honored to be your daughter.   And I love it that I got your stubborn streak.    
Lynette

Did They Write This About Sweet William?

Dad

He never looks for praises, he's never one to boast.  He just goes on quietly working for those he loves the most.  His dreams are seldom spoken, his wants are very few.  And most of the time his worries will go unspoken too.  He's there.... A firm foundation through all our storms of life.  A sturdy hand to hold in times of stress and strife.   A true friend we can turn to when times are good or bad.  One of our greatest blessings, the man that we call Dad. 

by Karen K. Boyer         

quiet Sunday afternoon

I am hanging out at Mom and Dad's this afternoon.  Mom's (hopefully) sneaking in a nap downstairs and Dad and I are upstairs.  Right now he is dozing in the recliner beside me.  I try to take in these moments, just hanging out, knowing that they won't be here always. Mom said that it was a bad night.  He is so restless and miserable.  He seems to be a little more agreeable to medication, and I don't know if that's to humor us, or if he really wants them, but I suspect he's just doing it for us.  Either way, I think that the meds do help a little bit.  He changes positions frequently.  Just can't get comfortable.  Noises really bother him, whether it's the birds outside, or the TV, traffic noise, or conversation.  Talking is so much harder for him.  It's like he just doesn't have the air to push out sounds.  He gave up the western shirts a few days ago, but is still sportin' his v neck white tshirt, wranglers and belt. :) Operation Sweatpants failed.  His fluid intake continues to be just a few ounces every day, and food intake continues to be very poor. I am honestly amazed that he has been able to tolerate the poor intake so far.  He seems a little bit worse, every day, but no drastic changes.  He still gets up out of the recliner and is able to get to the bathroom, but it really takes his breath away and tires him out so badly. 
This is the most helpless that I have ever felt, and I know that Mom, Bill and Erin feel the same way.  It's so hard to not be able to help.  When we know that he would move heaven and earth to help us. 
The littler 3 grandkids made clay impressions of his thumbprint this weekend.

message from Joan

I sat with (beside) Bill one day this week during a brief time that he was able to lie quietly in bed.  While I was holding his hand, I watched the muscles in his hand twitch and I wanted to scream….STOP!

Muscle twitching (fasiculations) are one of the signs of ALS.   When I googled muscle twitching months ago, it was what first made me think that he may have ALS.  I prayed that I was wrong.

 The twitching is a sign of a sick nerve which is firing without reason and trying to stimulate the muscle.  Eventually the nerve can’t fire and the muscle atrophies.  The twitching become kind of a constant torment to the ALS patient and his family.  They are relentless and when they stop in one area because the disease has done it’s damage there, you begin to notice it in another area.

Bill’s ALS attacked his chest and trunk muscles first but is now working on the arms and he is now very limited in what he can do with his arms.  His legs (Praise God) still work well enough for him to walk to the bathroom although that may be limited soon too because his breathing is so difficult. I try to get him to not get up and move around but you all know Sweet William…He doesn’t always listen.

Back to the muscles – I believe the reason he is having so much back pain (He calls it “discomfort”) is that he has lost almost all of the trunk support that he had.  You are able to see all of his ribs going down his back now and the spine too.  Bill has always been incredibly strong and it is hard to watch that change that has occurred.  Yesterday he asked me to cut a hole in some foam to hold his back away from the back of the chair.  (He continues to be very creative)

Prayer request now is like Lynette said…please provide comfort Lord.  Bill has agreed to trying to take the meds on a scheduled basis, so it looks like God is working on that prayer request.

Joan

tough week

It's been a tough week.  Dad's having trouble with bad upper back pain and just can't get comfortable. We suspect that it's musculoskeletal pain.  He is restless and changes position very frequently, moving from recliner to couch to bed.  Adjustments have been made in his medications, adding a fentanyl patch to help with pain and breathing, and plain old ibuprofen and tylenol for his pain.  He can use lorazepam for the edginess.  Morphine is probably the best option for his breathing, but he doesn't use it often because it makes him feel woozy.   It's a challenge to get him to try anything, because he doesn't like how medicines make him feel.  And it is soooo hard to see him so miserable.  He seems to be napping more, but the nights have been worse.  We are waiting for a lidocaine patch to arrive tomorrow and we really hope that it will give him some relief.  The shortness of breath just continues, and he doesn't want the bipap.  His appetite is nonexistent, and he eats only a few bites at best.  His fluid intake is very, very poor. 
The medication situation is hard for me as a nurse, because I want him so badly to use the medications on a scheduled consistent basis, to stay ahead of the pain, restlessness and shortness of breath.  But it's not my call, it's Dad's, and he has never been a fan of medicines.  So we gently ask and suggest, but ultimately he's the boss.  It's just so hard to see him miserable.  Nurse Lynette wants to push meds to help with comfort, and daughter Lynette wants to see him drink, even though I understand him not wanting to prolong.  This is not easy.  I knew that ALS would cause progressive weakness, loss of motor function, and respiratory failure.  What I did not realize is that it would cause such a profound malaise.  He just feels awful. 
We prayed so hard for a cure.  Now we pray for comfort. 

Update

Time for an update. Dad is getting a lot weaker. Much of the use of his arms is gone.  Mom said he did not have a good night.  He is only able to lay in the bed a little bit. Even the most comfortable recliner would get old, but it's easier for him to breath with his knees up towards his chest in the recliner. Not eating much at all, but the lack of fluids is more of a concern. Yesterday he only had about 2 cups of liquid or so.

"Old as she was, she still missed her daddy sometimes."  Gloria Naylor

We are not the only people in the world who are losing our dad.  I was reading about why it can be so painful.  One article said, "...part of your past, a part of yourself, a friend, a helper and a wise counselor."  Sometimes, we are going to get this wrong. We will overreact, throw fits, cry, laugh at inappropriate times (this seems to be me), be silent, talk too much, give too many details, give too few details, get snarky ...... but hopefully we are learning something too - and in the future we can help the people we care about as they lose a parent.  I am truly seeing that it is something you can't feel until you've felt it, you know!?

Thanks for all of the support.  When you visit, if you could keep your visits to 15 minutes or so.  Dad gets so exhausted and when he gets worn out he has even more trouble breathing.  Your continued thoughts, prayers, e-mails, etc. are greatly appreciated.

Do You Remember

Dear Dad -

Do you remember when we took the trip to northern MN with absolutely no plan or reservations?  I do and it was pretty great.

Do you remember buying me the book about Crazy Horse that I wanted and surprising me with it?  I do.

Do you remember buying me the stuffed unicorn at the circus when I was a little kid?  I still have it.

Do you remember letting me show my pony and how excited I was to get the pink ribbon?  It was 5th place, but it was pink!!

Do you remember yelling at me when I was messing around on my pony and not doing what I was told and I fell off?  I do - and if you hadn't, I might have always been scared to get back on.  Luckily, I enjoyed many more years of riding with you and Mom.

Do you remember not letting me call the guy who said he would call and didn't?  I do - and I am so thankful you didn't let me embarrass myself.  At the time I thought it was old-fashioned, but you were right.  And as a bonus, I ended up meeting Tyler and getting a really amazing husband.

Do you remember you & Mom teaching us that two wrongs don't make a right and to try really hard not to hurt someone?  I remember and I work at it every day.

Do you remember telling me - when considering a job change - that my loyalty belonged to my faith and family and if I was true to those two things, I wasn't making a mistake.

Do you remember NOT buying me a car that I wanted when I was in high school and telling me that when I could afford it, then I could buy what I wanted?  Knowing what I know now - that you helped buy your family's car when you were 15 years old puts it all in perspective.  So - thanks for that - and I wish I still had that old Fairmont now because it was Grandpa Hob's and I loved him so much.  I would drive around in it proudly.

Do you remember all of our network marketing weekend trips to Texas?  I do.  They were pretty great.  And thanks for the lessons that went along with that.  It's ok to shower at a truck stop :)  It's ok to dream even if people laugh.  And I know what you really wanted was just for us to be financially free so I could stay home with my kids.  Thanks from the bottom of my heart for trying and for all of your effort towards that.  It didn't go unnoticed.

Love you lots,

Erin

Missing my phone buddy

     I miss my dad.  Sounds crazy, I know.  But sometimes it really hits me.  He is here, still with us, and fighting so hard.  I know how lucky we are to still have him, and I try to see him almost every day. I do get that each day with him is a gift, and so very very precious.  But I miss the old days.  I would talk to him pretty much every day.  Usually on my way home from work, in the car.  I would call, and he would say his signature, "Helllll-O!" when he picked up the phone. Or if he was pretty sure that it was one of us, he'd say a drawn out, "Yesss?" instead of hello.  And the next thing he would say is,  "I knew it would be you because I just talked to your sister."  He always chuckled and told us that we called at about the same time as the other one.  I usually didn't have anything in particular to talk to him about, just telling him something about work, or the kids, or asking for car advice, or parenting advice. He always had time for me. Many times on Tuesdays we'd talk when he was on his way back from the hay sale. I enjoyed it and I took it for granted. I never felt like I was bugging him. He was always such a talker, and spent alot of time on the phone with people.  Now the weakness of his voice, and the effort that it takes to talk and breathe make talking on the phone just about impossible for him. 
     Shortly after the diagnosis, I had an appointment with the dr that I have gone to for 25 years.  He asked how things have been, and I told him about my father's diagnosis.  He had lost his mother fairly recently and he told me that grief might cause physical pain.  At that point I was still a bit shell shocked.  But he was right.  I feel scattered and distracted at work and at home.  This grief is with me every minute of every day.  Sometimes it just sits and simmers in the background.  Then sometimes it hits so strong and so hard that it almost knocks me over.  It's an actual ache that is never, ever gone.  I know that my sister feels the same way.  And man, this must really be something for Mom. 
    But, I guess we will just keep on, keeping on. That's what Dad is doing.  Each day is a gift. We just have to hug him every day that we can.  And we are thankful that, for now at least, those rapidly weakening arms are still able to hug back. <3  Love you Dad.
   

Letter from Nathan

I asked Nathan tonight if he would want to write a letter to Grandpa.  He said yes and that I could put it on the blog.  It isn't long, but it's mighty.

 

Dear Grandpa:

Thank you for taking care of us. 

Love,

Nate

Visits

We are having trouble figuring out which medications make dad feel better. He feels like the morphine makes him extremely irritable. The Lorazapam seems to help with anxiety and claustrophobia, but not as much with the breathing. Dad is on pretty much constant oxygen now.  Absolutely zero appetite. For example, yesterday he was able to eat a piece of toast, a few cooked veggies and a pear. That is not a lot to survive on, but it’s the best he can do. There are several obstacles he has to overcome in order to take in food.

• He is not hungry
• Food doesn't taste good anymore
• Getting it to his mouth - he is not ready to be fed yet
• Chewing, which is exhausting
• Swallowing, which gets harder as time goes on

Dad has declined a feeding tube. His hospice nurse said it’s now or never for the feeding tube. Dad knows that, and he is comfortable with his decision.

We are getting to that terrible time that Dad was dreading – because he is such a social butterfly – where we will need to keep visit length to a minimum. Putting this request out there is very hard for my dad. Unfortunately, he has nothing for energy reserves. If you do visit (which they still want) please keep visits to no more than about 30 minutes or so. 

However there are lots of ways to still visit my parents in addition to that – e-mail (grullo2@msn.com) or comment on this blog. Send a letter or a card. He loves getting cards in the mail and it means a lot to him. Being surrounded by people and good conversation has always been something that Dad loves, and it’s just one more thing this disease is stealing from him.

Dad is really hoping to get out for Maddy’s game today.  It’s a day-to-day thing. He is SO not ready to be in a place where he can’t really even leave the house anymore. It is just another level of independence and freedom stolen.

Update from Joan

The girls thought I should contribute something to the blog from the perspective of wife and best friend. It is difficult to know where to begin but I was thinking about March one year ago, when Bill and I were working really hard to do some paint up and fix up to some things  on the acreage.  We wanted to put the house up for sale in May so that we could proceed with our plans to move to the Black Hills.  We did not have a clue that anything was wrong with Bill.  During the years that I was a nurse, I never knew a patient with ALS….This is a tough way to learn.

ALS is a nasty disease; there is no other way to say it.  Bill has had a very aggressive case.  Each day since we first really started noticing the symptoms, he has gotten worse.  I anticipated that he would reach a plateau at some point but that has not happened.  Apparently his is worse because his trunk and respiratory status has been affected mostly, although now as each day goes on, he is also losing more and more of his remaining arm strength.

ALS is a disease of loss, both for the patient and his loved ones. My heart breaks with each change in his status.  His daily care still works out pretty well. He is able to walk to the bathroom and that helps so much.  That level of independence is so important to him.  My prayer (one of them) right now is that he is able to maintain his legs.

Right now we are also losing Bill somewhat because as his respiratory status worsens his anxiety increases and his ability to enjoy us being around him has lessened….I miss him, and his voice, and his jokes, and funny sayings.

I have always said that ALS is “whacky” because in the midst of all of the loss and pain, there are moments of sheer bliss, where we have been able to be closer than we have ever been.  I often think that had Bill been suddenly gone, we would not have had the opportunity to spend this precious time together.  I am very thankful for that and for the other blessings that have come with this.  We have a family  bond that was close before, but is now  “unbreakable.”  We have friends and extended family who are awesome and the ALS has gifted us with the ability to see that.  If I could change things, of course I would make it so Bill never had to go through this, but I can’t ... so we learn to count the blessings that we have received.

     I snapped this photos on Saturday with my phone.  Erin and Dad were looking through some old pictures.  It was good.  We spent several hours with Mom and Dad on Saturday, Erin and her boys and me and my kids (minus Jared who was on a track trip)  It was nice, but Dad got pretty tired.
      Bill is planning to come home again March 16.  That's something to look forward to, because Dad's having trouble talking on the phone and hasn't been able to talk to Bill the last few days.  His voice is weak and he gets pretty winded with talking.
      He continues to barely eat, and isn't drinking much.  The oxygen is constant now, and he uses the bipap occasionally.  He still hates the bipap, and feeling like he is tied to a machine.  I wish that he could eat and drink more, and that he would use more of the morphine to ease his breathing.  But we who know and love him best :) know that he has a mind of his own. These are tough choices, but they are his choices to make, and we support him.  And we've learned the hard way that there isn't anything about this awful disease that isn't tough.   ALS sucks. 

update and Oprah

Just a brief update tonight.  No dramatic changes over the last few days, but there are definitely subtle changes.  Dad's appetite is very poor, and has been for awhile.  His intake of food and fluids remains poor.  It's hard to chew and he's just not hungry.  The arm weakness is worse.  The breathing is tough, and a little more so today. He has used the bipap some the last couple of days.  He's using a little bit of morphine, but not nearly as much as he could, and not nearly as much as he probably should.  His night time sleeping is better the last few days, but he definitely prefers the recliner, with his knees up. He is quieter, and talking a bit less. He just looks and feels weary. 

We've had such good support from so many people.  You know who you are and we love you!  It brings to mind a quote.

"Everyone wants to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down."   Oprah Winfrey