Dear Sis,

As I sit in the Toronto airport – my return flight is on the “milk run” – it is a 14 hour travel day for me to get from Ottawa to Vancouver Island.   Total flight time direct is usually 4.5 hours.  I guess I wasn’t paying attention to this flight change when the airlines made the change from my initial departure day (yesterday) to leaving today.   I made the change rather quickly so I could stay for our brother’s Super Bowl gathering last night.     It was worth having that extra time with you yesterday afternoon, but I simply could not get into socializing last night (I know how odd for me 🙂 )

You and I were always the sister’s known for taking part in any social event when it came to hanging out with our brother.    Many of his friends are guys we have both known since his teenage and or University days.    But last night was different.  I found myself not wanting to engage in conversations with anyone.   I was emotionally drained.    I simply did not want to “give away” the last little bit of energy I had left in me.   I also really missed you.  I felt sad.  With a house full of people and children,  I snuck up to my room and crawled under a blanket.

Karen, the last two weeks have been so emotional.    This has been a journey for all of us.   When I said goodbye to Brian at the airport in Ottawa,  I did not cry.     I am leaving this time feeling stronger than I ever have in the past.   It’s a process and this is  another stage.

However,  as my plane landed in Toronto, I was looking out the window and tears were streaming down my face.   You know when you are watching a sad movie on the plane and your tears are flowing and you are trying to wipe them away so no one sees ?  That is what was happening to me.    As I wiped away my tears, they continued to fall, one after another with an aching lump in my throat.

Karen, as you know the prognosis with your disease – Multiple System Atrophy – is 6 to 9 years.  It will be 15 years since you were diagnosed and next month it will be 8 years since you have been in St. Vincent’s Hospital.  I will always recall  – 7 years ago – Brian and I having a conversation with your Doctor.   She told us to prepare for your death.  That you would not be with us at the end of that year.     She also talked to us about not tube feeding you.   I recall her words, “If this was a disease that had a known cure, it would be different.  But there is no cure.  Your sister will continue to deteriorate.”

We, of course, choose to not even entertain that idea.   I remember him saying,  “I will not starve our sister to death.   I could never live with myself.”  But at that time, based on what the doctor said, we honestly thought we did not have much time left with you.

I will admit, I did struggle a little, only because your wishes were to never live like this.   You had specifically said to both Brian and I, “If I end up not being able to talk, move, eat, wearing a diaper, please end my life.”   But it simply did not matter.   Brian always said, “She is not in pain, she can still see her kids and do you really think the alternative option (to not have her here at all) is the better choice ?    I will not even consider what the doctor is suggesting.”   I could not be more grateful that he was so adamant with this decision.

The timing of JP was amazing.    He appeared in our lives within months of this conversation taking place.   I still think mom and dad orchestrated the whole thing from above.     Another six years with you that we never thought we would have.  We are all so much stronger individually and as a family unit.  Now JP is not well and I know he may never return.   But as his sister Tara said, “It has been a beautiful story, filled with so much love.”

I left Ottawa with a feeling of peace.   I found the strength to ask you the question, “Do you want to live? Do you still want to fight this fucking disease ???  You seem tired Karen but I need to know.  Do you want to continue fighting ?? Please let me know that you want to continue to fight this fight.”

With the blinking of your eyes and the look in your eyes,  you confirmed yes.  You want to fight this fight !!!  You are so awesome Karen, I love you !!!

Until someone is personally faced with a family member and or someone you love being placed into our “system” one truly has no idea what is involved.      You need someone to be the eyes and ears in that hospital.  But we also have to trust the nurses and the care givers.   Just like in any profession, there are good and bad ones.  However neglect is very real.   And as we age, it scares the hell out of me.

We all live our lives thinking, “Oh it will never be me.  There is no way I will end up in that situation.”  Well I am here to tell you, my sister thought the same thing.   I will always remember our conversations.    You would say to me, ” I can’t believe what I am reading about this disease.    It is disgusting.    What the hell is going to happen to my body?”

Those conversations for me are still so very real 🙁

Over the last couple of weeks, I think the most difficult part, was not seeing you smile.   You simply did not look happy.  You looked uncomfortable.   Your inner “spark” was gone.

There was a picture of you (us) that I posted on Facebook.   After I posted it, friends texted me saying how happy you looked.   What most did not realize was that was the first picture I captured of you (actually your daughter took that picture) with a smile.    I jumped in to your bed and suddenly your head spun around (it made me laugh because your neck was so stiff and I had not seen it move since I arrived) but you looked right at me,  in my eyes and smiled.   You were most likely thinking, “What the hell are you doing in my bed ??”  Anyhow it was brilliant and when I posted this picture my caption read, “All you need is love, love, love is all you need.”

So yes, we do all need love.   But again, one also needs an advocate.   JP was that person.   I mention him because he cared for you in ways that went above and beyond.   Ways that even a married husband to his wife for the last 40 years would not be able to find the courage or strength to do.   I will say, that I am forever grateful.

Over the last two weeks, I found myself at the hospital, trying to piece so much together.

What I discovered was inhumanitarian.  This is my personal opinion based on observation.

To know that the staff will leave you in bed, all day, angers me.    To know that you get a bed bath (not even in a tub)  on Tuesdays with a hair wash only ONE DAY A WEEK, makes me sad.     To know that there are not enough volunteers or staff to take you to weekly events, is disappointing.

It was an eye opening experience.    Even though Brian and I have it noted in your file, “Please make sure you get Karen out of bed for at least a few hours a day.”  It was so frustrating to arrive, on three separate days – between the hours of 11am and 2pm – to find you in bed.     Both times we were told, “She has so much secretion we thought it would be best to keep her in bed.”  I will say, without a doubt in my mind, this was an excuse.   On several occasions I was informed by the staff, that they are all overworked.   There is something wrong with our Healthcare system and in the years ahead, it will only get worse.

Karen, I promise you I will do everything I can, to stay connected to that hospital.  I now have the personal e-mail of your doctor – we have already shared correspondence .   Jean – the amazing 90 year old volunteer has offered to take you to church every Sunday at 2pm.   I have requested for a volunteer to take to you to Bingo every Monday ( I have the e-mail address of the volunteer coordinator – I am hoping to get you out to events as often as possible)   I have reached out to the Hair Salon where we will pay for someone to wash you hair at least twice a week (above and beyond the one day the staff does) and clip your nails and wax your chin/facial hairs and shave your legs.   These are the basics…I know how important this is to you.

Well I started this blog in Toronto and I am now just finishing it Vancouver.   Only a few more hours and I will be home.   I am sitting at the bar – in the airport – drinking my glass of Kim Crawford – and a very good looking man with an Irish accent just sat next to me so it’s the perfect time to end this blog hahahaha 🙂

Writing to you is always so easy because it comes straight from my heart.

I love you sis,

Kathy xo

ps.  I checked in for flight yesterday, so when I arrived to the airport, all I had to do was tag my bag.   There were 3 young ladies standing there to assist with this process as they mentioned it was a new system they had in the Ottawa airport.   As they were tagging my bag, I said to them, “OK do not lose this bag.  The airlines just lost 2 bags on my last flight – it has now been a month – and I had thousands of dollars in those bags that will need to be replaced.”  Their reaction was so sweet, they were devastated.   All three of them said, “Oh I feel so sick for you.  That is terrible.  It is everyone’s worst fear.”  After I placed my bag on the carousel, I walked by them again.   The one girl said,”We are going to stay positive for you.  They have to find them.”  I stopped, looked at all three of them and said, ” You know, I just spent two weeks in Ottawa with my sister who has a terrible disease.  She can’t walk, eat or talk.   She reminds me how they are just “bags”.  “Stuff”.  Honestly if I let something like this stress me out, I have lost the importance of what is truly important in life.”   One responded, “Oh that is so right….just stuff…all that can be replaced…but your health never can be.”

And with a wink, I responded to the young lady, “You got it.”

 

All these pictures below – only a few I am highlighting – that are in your room….you are surrounded by memories.   I especially loved the puzzle on the left – that Jean, the 90 year old volunteer made with you.    The note below states….

“Karen and Jean made this puzzle together.  Jean did the border and glued on a board.  10 to 20 pieces which Karen matched over 500 pieces so it took a long time, so Jean matched and glued 3 small sections at the bottom of the puzzle to be ready for Karen’s birthday April 8th. “HAPPY BIRTHDAY KAREN”.  PS.  one piece got lost.  Ah well !!  Nothing is perfect in life.

 

Sibling pics…..