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.