Saturday, 10 March 2012

Every Cloud Has a Silver Lining - Open The Window and See

As I have said time and time again, I started this blog with no direction.  It was a way to write for my mother...what a wonderful ride it's been over the past 9 months....WOW!  I just counted the number of months I've been blogging, a full gestation period, and when I think of it, I feel reborn.  No worries, I am not going to proselytize...but I do feel like I've awakened from a nightmare to find myself in a sun-filled room, bathed in golden yellow hues. 

When Alzheimer's (or any life-changing disease for that matter) strikes, the ripple effect is far-reaching.  Life as you know it will never be the same.  I often talk of my family's and my "new normal" - relearning how to live when someone you love has a chronic degenerative disease, and they slowly slip away from you - a little bit each day.  That is what it is like for me.  My mother was a vital and vibrant woman.  She was beautiful and charming and so much fun to be around.  Everyone loved her.  We still do.  But this disease slowly destroying her brain and robbing her of the ability to understand, communicate and function in daily life. 

The 4 of us at Davie & Lena's Wedding (November 2005)

And so I write.  I tell her story, 1 anecdote at a time.  And in doing so, I keep her alive, as she would want to be.  She would hate to be remembered as a frail and timid person being ravaged by AD.  She would want you to remember her entertaining, laughing and loving. 

I have been blessed to meet many incredible people on my brief journey thus far - Norene (she is still my rock star, but is also becoming my friend), my long lost family, Facebook communities of foodies and Alzheimer's advocates...the list goes on and on.  And I am humbled by the fact that people connect to our story - and want to read more - thank you for your caring and interest!  Please know that it is never taken for granted.

My friend Ellin is a journalist.  She took the time to write a beautiful article about Mom and me, and our family.  Thanks to the worldwide web, that article has been far-reaching, and I have made many new and exciting connections.  One of them is with a CJN journalist who has written a story about Mom that should be coming out next week.  You can be sure I will be promoting it here!  Stay tuned. 

Another amazing contact is with the Alzheimer's Societies - both in Toronto and York Region.  Mom lives in Toronto, and I live in York Region.  So it only makes sense that I would connect with them.  And this post is all about the new windows that have recently opened.

After Ellin wrote the wonderful article about Mom a lady working with the Toronto Alzheimer Society - Joan Rocha - contacted me.  She is the Marketing and Communications Manager, and wanted to connect with me.  She was following my blog!?  I see the number of page views slowly climbing, and I know people are visiting my blog, but it was amazing and exciting to talk to a perfect stranger who was connecting with me. I was encouraged to know that people other than my friends and family were reading my posts. 

We tried to connect at the Walk for Memories, but she was in charge of the stage and it just didn't happen.  I did have the pleasure of meeting Marija Padjen, Toronto Alzheimer Society's Chief Program Officer, at the media table - little did I know that a couple of months later she and I would sit down to tape an 'intimate' chat about Alzheimer's, dignity and care.

MMT Team for 2012 Manulife Walk for Memories

But there was no time to soon as the Walk for Memories was done it was time to attend Authors Fight Alzheimer's, a third-party fundraiser being co-hosted by the Alzheimer Society of York Region.  Norene was nice enough to let Aviva and I join her that evening.  I drove through a mini-blizzard to Norene's house, where she made me dinner - I don't often have a Jewish mama prepare a delicious home-cooked meal for me anymore, so this was a special treat!

At Norene's table with steaming bowls of Sweet Potato & Leek Soup - Yumm!

And with Aviva...

Teriyaki salmon with veggies & noodle kugel..mmm.mmm good!

After we ate we fought our way through rush hour traffic and a snow storm until we made it to the North York Library.  We unloaded Norene's books from the car, and made it inside.  A great time was had by all, and money was raised for Alzheimer's - what more could we ask for?  Well, Norene's friend, Elaine Ross (who was running the show on the Society end of things) and her husband came up to our table to say hello.  We played a little Jewish Geography (" you know so and so?) and it turns out that David knows my parents.  He called his sister Joanne over, and BAM! another connection!  Joanne and her late husband David were friends of my parents'...they travelled to the Arctic together 20+ years ago, and I haven't seen her since I am married (almost 17 years).  She had no idea about Mom, we fought back tears, laughed, reminisced and promised not to let another 20 years pass before we see each other again.  So many many windows opening.  Well, I rounded out my Norene cookbook collection and bought the The NEW Food Processor Bible: 30th Anniversary Edition , which Norene signed for me, and home we went.

But it doesn't stop there! (I am starting to sound like Vince Offer from Slap Chop TV Infomercials!)  The following afternoon I met with a journalist for the CJN who is writing a piece on Mom and MMT!  The article should be out in this week's edition, and I will be sure to post it ASAP.

Things calmed down a little bit, just in time for Becca's dance to shift into high gear.  Again, when it rains it pours...this time we ran to Hamilton on Friday and Saturday for Becca's first ever competition - it was non-stop: hectic and exciting and nerve-wracking all at once!  She and her groups came away with 2 gold medals/1st place - hurray.  Came home and spent the next 2 days running around to practice and real dance medal exams.  Now we are at Tuesday - and remember I work!  And I have missed 2 days of work!  Spent Tuesday catching up and then Wednesday I went to the Alzheimer's Society of Toronto.

This was exciting.  I was invited to participate in the taping of a new e-learning module that will be featured on the Society's web page.  The part I took part in was about dignity in care.  I didn't look at the questions until the night before.  I wanted to be fresh and unrehearsed.  I think it went well and am really excited for it to go up on the website.  Again, I will post the link ASAP. 

More importantly, it got me thinking...I write to you now, as I am starting to find myself in a sun-filled room, bathed in golden yellow hues.  But the nightmare, painful as it was to go through, is an important part of the story.  My family and I stumbled our way through discovery, denial, diagnosis, more denial, disruption and despair.  There was no road map to follow, and many days we felt like we were walking a tightrope wearing a blindfold and cement boots. 

And so, I am thinking of starting another page on this blog - The Road map - to share our experiences and knowledge in hopes of helping others travel this road without hitting as many bumps. 

What do you all think? I invite your comments and feedback, and hope you will share your thoughts on this with me. 

Until next time, I wish you a wonderful day filled with family, fun, friends and fantastic food!  B'Tayavon & Buon Appetito!