March Break Madness

Last week marked a week of break.  It was finally March Break and we got lucky, with a snow day right before.  :)  Boy were we blessed (the high school ones!)  We got Thursday, Friday and a full week off to rest and relax.

Jo however, had to go to Shawinigan as there was an important team meeting happening regarding his Dad and the services he will require as the disease continues to ravage his body.

I was not going up this time.  I really wanted too and i really didn't.  I'm quite frankly exhausted!  Exhausted with everything that is on my plate.  Work, family, house, my own mental health and well being as well as my husbands and my in-laws.
I initially wanted to go up.  But in my plans, we were going at the beginning of the March Break so that we could come back mid-week and it would give me a few days to rest.  Jo, got a call from the Hospital telling him about the appointment near the end of the week and wanted to go later.  I didn't.  Lets just say we had some strong words to exchange and then he uttered this one phrase.... " your not going.  i'm not letting you go.  You can't handle it."  :-O   W-H-A-T?!   And the words that proceeded to come out of my mouth were defensive and agressive.  How dare he tell me what to do.... how dare he imply that i can't handle it.  I'm trying damn it!

Fast forward a few days... and i realize he's right.  Maybe this was my opportunity to not try and control this precise situation.  Maybe this was my opportunity to rest and recharge.  I needed to be here for my kids; they wanted to spend some time with friends and they had activities that they were planning.  My place was here.  And so i stayed and he left.

Now.... when he left, it was very hard for me not to call him......... every few hours.  I obviously am more comfortable when i am in control and in this precise moment, i was not.  Ironically, the 3 most booked days in my calendar during this March Break were the days that Jo had gone.  Me thinks someone up in Heaven had something to do with that.
As difficult as it was not to hound him with phone calls, i knew i needed to give him his space and when he was available and wanted to talk, i would be there, ready to listen.  Except, i wasn't ...... OPS!   Every time he kept calling, i was always busy somewhere and i needed to call him back or answer his questions quickly.  Anyhoo, it panned out.

It was a busy two days and a half for him.
He had a few appointments to take care of.

He met with the Medical Team to talk about end of life preferences.  They discussed what options we had and Fernand chose what options he was comfortable with.  My father in law is now below 95 lbs.  He's frail and fragile and there isn't much muscle left to cover his bones.  He can still walk with his walker but we were warned it won't be too too long before that gives way.
He will not be intubated and will not be put on a breathing monitor.  They will be making him as comfortable as possible given the pain he is suffering and we are praying every night that the Lord delivers him for all his sorrows.

ALS is unfortunately a very unforgiving disease.  It reeks havoc on your body and you are trapped seeing this unfold in front of your eyes and not being able to do anything about it.  I'm pretty sure this is not how he envisioned his life would end.  And it makes it that much more saddening.

Jo noticed that at the end of the meeting, his father had a very sad face.  And that's when he realized his poor father is still hoping for a medical miracle.  He's still hoping that the doctors will tell him that everything can be fixed.
But it won't.  Because it can't.

So every day, we walk with him through this terrible sickness and every day we are reminded to put our trust in the Lord and pray that he deliver him from this sorrow.  Someday he will.  Maybe not quite yet; but in due time.

How are we doing?

I get asked this question quite often.  If you ask Jo, he'll say fine.  If you ask me, i'll say we are not.

To be honest, we are both living it differently.  I'm more vocal about it and i show it more.  Jo is more quiet and reserved about it.  Both have their positive and negative draw backs.

Knowing that your loved one will be passing away in a matter of months is very hard to deal with.  It's hard to wrap our heads around it because less than a year ago, he was a normal person.  It's taken over his body so rapidly, it's been quite scary to say the least.

We are adjusting our lives out a little, because it will get much harder sooner rather than later (although it's already hard)....  we will eventually have to take time off.  It's simply not the time, yet.  

But in the midst of this disease, we are trying hard to focusing on the fact that the Lord has protected him for many years so that he can take care of his ailing wife (she passed away 5 years ago from Alzheimer). That he has had a marvelous life, one that he can look back on and be proud of.  He was a man of God.  A preacher.  And he loved his boys.  He was always there to take care of us when we needed his help.

We have found ourselves needing to slow down our family life (as much as one can with teenagers and children).  If you don't see us much, it's because we are resting.  Or simply because crowds make us uncomfortable.  I don't know why really, they just do.  It may have to do in part with the fact that we had distanced ourselves from our home church right before all this and we are still searching for a place to call "home".

Our work helps us take our minds off of reality a little.  We stay busy by providing for our family.  It's our security blanket right now.  And we appreciate it.

The kids are good.  The last saw their grandfather Jan 4th, for the last time.  And they found it difficult to see him in such as state.  It was hard because he looked different and all he could talk about was the fact that he was loosing more and more mobility and he didn't understand why.

Our teenage girls understand the impact a little more than our younger two.  They understand the tragic life expectancy of this horrible disease. 

We keep walking through it one day at a time, praying tomorrow will be a better day.

Some weeks seem to be better than others.  Some, harder.   But we rejoice knowing that we are beginning to have more good days rather than bad ones.  And that's progress.  

What is ALS

Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.

ALS is not contagious. There is no cure for ALS and few treatment options for the majority of people living with the disease. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.

This is a very rare disease.

A terrible way to die.  Being trapped in ones own body, knowing that you are choking but not being able to do anything about it.

This is one of the many reasons why it's been so hard on us.  Because it's terribly difficult for my father in law to grasp what is happening and he just wants a diagnosis so that the doctor can fix it.  Because in his mind, if they find the problem, they will be able to stop it.

But we are stuck in this paradigm of having to say over and over again, it won't get better, it will get worst.  You will be passing from this and there is nothing the doctor's can do to help stop it or slow it down.

So every week, we see him degrading rapidly.  We hold out or breaths not know if today will be the day we get a call.  We often do.  Whether it's loosing mobility or that he's fallen again.  The phone rings often and that's when our hearts stop for a second.

We are now in the late stages.  He can still walk but with a walker. He has no more muscle function in the neck and so his head is always looking to the ground.

His tongue has shrunk making it difficult to swallow his own spit let alone food.  His throat is starting to get constricted and it become hard to talk.  I can get about 5 minutes of phone conversation with him and that's it.  He gets too tired and because he's loosing all muscle mass, it's taking him a lot of energy.

Reading the signs

I remember it like it was yesterday, we had decided Jo and I to take a weekend trip at the end of May to go to Shawinigan for an adult only getaway.

The plan was to spend time with our close friends and have some much needed rest. Raising 4 children while working full time is hard work.  So much so that i've had to let some expectations go on how i wish to keep my house.  You see, i was a stay at home Mom for close to 10 years.  And when i went back to work 3 years ago, i was determined to be still the same Mom.  But i could only maintain that for a short period before realizing that i couldn't do it all and i had to let some stuff go.  I don't wash my floors as much as i use too, i spot clean.  I don't have elaborate meals every night.  Sometimes, waffles and pancakes are a good supper idea.  :)

So, that weekend getaway was gonna do us good.

The past few months had been difficult on Jo's father.  Since Christmas, we had seen a shift in his attitude, he kept talking about loosing strength and being tired.  He kept getting checked but everything always came back normal.

As we were driving down, we decided it was a good time to call his father and tell him we were coming down.  He had become very nervous in the past few months.  And when we would talk about coming down, he would call repeatedly and make us repeat over and over again about the details.  So when we called, he noticed that his voice sounds odd.  But oh was he glad we were coming.  We chatted quickly about when we would go and then hung up and called Jo's brother.  That phone conversation although very brief had us worried.  Up until then, he was still living on his own.  We needed to have a conversation about moving to a safer location, where he wouldn't be alone.  Dominic agreed to come with us.  We wanted a united front.  

Upon seeing him, we immediately started to worry.  He had lost weight.  His arms were fading away.  Melting away really.  You know that feeling when you know something is wrong, well, that's what he had.  We simply couldn't pinpoint what it was exactly.  

Was he not feeding himself properly?  Was it Parkinsons?  Was it MS?  ALS?  Maybe his cancer had returned and they just couldn't find it yet.  We knew it had to be something, we just needed a doctor to listen to us.

So we did what most children do when the parents get sick.  We ask him to move into a retirement home.  He agreed and moved within 3 weeks.  We came back down to move him.  Surprisingly took 3 loads to bring all his things to the new apartment..  it was long and it was so hot outside.  

But he was in a wonderful place.  A retirement home for autonomous elders.  He had access to a nurse.  

As worried as we were, we agreed to come back down at the end of the month to go with him to his doctor's appointment.  At this point, we needed to speak with his doctor and push for more tests, more answers to our questions.

We went, and our first encounter with his physician was less than stellar.  She was not happy to see us and was not receptive to how my father in law was feeling at all.  She kept insisting it was old age and that's what happens when you get older.  She told him to walk more and do some activities that he liked.  I think she legit thought there was more depression than anything else.

It was quite a depressing appointment and we left feeling very frustrated.  Because the man before our eyes was not the man we once knew.  And no one really believed him or us.  And we had the gut feeling that something was wrong.

September arrives, we are back to work and to the family routine.  It's quite chaotic.  We are working hard and trying to balance it all.  His father calls often and repeats the same things.  He's loosing strength and doesn't understand why.  We continue having a couple appointments, but nothing proves any answers that we are looking for.  Every month we go down to see him, every month his symptoms get worst.  When we thing he can't possibly loose any more than he already has, he keeps loosing more abilities.  End of November, we decide that Jo must go down with his father to the doctor's appointment.  He needs to speak again to her about our worries.  Hopefully showing up in person will make her understand that we have legit concerns.  She finally  believes us and believes we now need to see a Neurologist as she is now suspecting Parkinsons.  There is a sense of relief in that as finally, we will be getting answers.  Finally we will be seeing a specialist who will hopefully bring us on the right path.  We are told it will take a month to get the appointment and in the meantime, we start getting support and help from the CLSC.  It's about time.  He's going down so fast that this has now become a top priority.  He have to get him services for basic daily thing like washing him and doing his laundry.

December has us coordinating appointments and car rides.  It's difficult to coordinate from far.  We are 3 and a half hours away and can't always go down.  It's starting to take it's toll on us.  My anxiety spikes as i'm feeling more and more overwhelmed.  I'm working full time while taking care of the house and wanting to help my husband out as i don't want to see him live this alone.  But i know myself and i'm weakening.  I'm loosing my control.

Mid-December we finally get the call.  We see the Neurologist December 23rd.  We are relieved that the time has finally come.  We are hopeful that he will lead us on the right track.  We go down and take him to his appointements.  His body is frail.  He has lost all muscle from the waist up.  He is down to 120 lbs.  His legs have now become so weak that he keeps falling.  We keep getting calls from the Retirement home telling us what he's broken.  A wrist, an elbow.  The orthopedic doctor wants us to consult for osteoporosis.  We think it's a waist of our time, we have bigger fish to fry.

We see the Neurologist in the afternoon.  The meeting took 40 minutes.  The Neurologist spoke the same words that we had uttered.  His muscles have atrophied... it wasn't normal.   He spoke of a possible diagnosis, but wanted to run some tests and blood work to make sure he was certain of that diagnosis.  

Christmas was hard.  Jo was working, i was home alone with the kiddos.  

My anxiety spiked.  I was not sleeping well.  Up until now, Jo and I had managed to never be falling apart at the same time.  Either I was struggling or he was.  We always had each others back.  Even in the difficulties.  But it was getting hard.  We were both starting to fall together.

Then that call finally arrived.  We have our meeting with the Neurologist.  We go up last week, Dominic and his fiance join us for the meeting.  We arrive and all stand while he utters the words no Neurologist ever wants to say.  Your father has ALS.  He's already in the advance stages.  At least a year, a year and a half.  He can't say how much time he has, because it's so unpredictable.  But it will get worst and we need to take about end of life decisions.

His father went from living on his own to being hospitalised in 6 months.  The illness had rapidly taken over his body and there is nothing we can do about it.

It has been a very difficult 6 months.  And we know we are just in the think of it.

We feel frustrated that we knew something was wrong and no one believed us. 
We feel upset that he went through this alone.
We feel helpless because we can't stop the disease.
We feel sad to see his suffer such pain and not be able to help relieve it.

It's quite the journey.   

Our Journey

Welcome to our Blog.

I have decided to start documenting our ups and our downs that we are living right now.

We are in our 30's and trying to raise our children at the same time as we navigate taking care of my husbands ailing father.  We live out of town from him.

There isn't a manual for this.  It's hard and it's demanding and it's gut wrenching all at the same time.

Join us as we navigate these hard times.  Whether you are here to pray with us, for us or whether this helps you in your journey.
I will be sharing our struggles and hardships but also our little moments of life and laughter that we try and incorporate with our children.

Enjoy the read.