Discussion Forums

 
04 Feb 2015, 11:24 PM

Hi Silly oldbat,

I removed the last 2 lines that you erroneously included. No harm done.

So glad that you got home safely in the end. Don't let it darken the success of the day. Congratulations. Sharing your story surely empowered many.
Colleen
 
Report this post      
 
Reply by Marigold
04 Feb 2015, 11:38 PM

Thank you for the warm welcome.

Oldbat, your writing is so beautiful and profound. What a gift you have to put these feelings into words.

My favourite things to do that help me in the long haul are playing with the kids, singing with my choir, and gardening. It might be a little cliche but singing and flowers always seem to make me feel better! I also try to find time to volunteer but that is getting pretty difficult.

Hope you are all enjoying a beautiful wintry week! 

Marigold 
Report this post      
 
Reply by oldbat
05 Feb 2015, 5:51 PM

Hi Marigold - such a pretty name!

So glad to see you back.  Your list of favourite things is great.  I agree with you about the singing and flowers.  I've been trying to find a place to sing for many years.  and it is many more years since I actually sang.  Way, way back, when I was at school in England (a thousand years ago!) I studied singing and actually sang with a local opera society:  Gilbert and Sullivan:  "Patience".  As for the flowers, I have the original black thumb.  Anything growing simply doesn't, any time I appear!  But I love to give and receive them.  The giving happens much less frequently than I'd like due to budget constraints.

Reporting back to all you other long-haulers on my battle with Co-o[ Cabs in  Hogtown:  I heard from an officer at the Metro Cab Licensing yesterday.  He told me that the complaint was more than justified, specially given the fact that both Karl and I are handicapped.  Told me he'd have done the same thing, and he's not handicapped!  He has posted my complaint on their license record, and it will remain there permanently.  He is also going to call Co-op's senior management today, and will let me know what the result is.  All I want is an apology and guarantee that nobody else will be faced with that situation.

So you see, speaking out can sometimes be very effective. 

And, on that topic, I have after three years, finally found a care-givers support in real time.  the Stroke Survivor Network has been in operation for 25 years in the community and several hospitals.  They have a branch at Bridgepoint, which was Karl's rehab hospital and nobody even suggested it.  SIGH!  I've spoken to a very nice man:   Tom Rideout - peer support for the network - 289.897.8452.  He's going to have another care-giver in a similar situation give me a call.

That being said, this IN NO WAY mitigates my involvement with CVH.  You have all become cyber-friends, whose ongoing engouragement and support are vital to me.  I will NEVER cease my involement with any of the discussions groups with which I am involved.

And finally (insert sigh of relief from you all!) a special thanks to Colleen for taking care of my silly mistake.

Hugs all 'round,

oldbat


Report this post      
 
Reply by oldbat
07 Feb 2015, 4:42 PM

Are you “lurking”?

This is a welcome to anyone who has been following the discussions On Canadian Virtual Hospice.  Please come on in.  The water’s fine!!!

Seriously, if you have been reading the posts and, as we hope, getting some kind of reassurance from them, please do join us.  You’ll find that we are a very caring group.  One whose members are on a similar journey to yours.

Speaking for myself I can say that, without CVH over the past few months, my life would have been so much worse.  I’ve been consoled when times got tough as they do for us all.  I have shared laughter as well as tears and count myself very fortunate to have found this group.

Please don’t be shy.  We’d love to meet you, hear your story and share on own.

Looking forward to meeting you,

oldbat

 

Report this post      
 
Reply by JennJilks
08 Feb 2015, 8:12 PM

oldbat, you are my hero! What an advocate you are! My kind of person.
Well written. Good for you.

Take care, all of you. I'm living in limbo, tracking my Joe's cancer.
His surgery, a year ago, really took it out of me. I understand what all of you are writing about. I'm lacking words, but take comfort from the fact that while you are lonely, you are not alone. Many of us line the internet highway, saluting you on your journey as you pass by.
Report this post      
 
Reply by Bubu
08 Feb 2015, 10:23 PM

Beautiful poem. So moving. I LOVE the ending. 
Report this post      
 
Reply by oldbat
08 Feb 2015, 11:15 PM

Hi Bubu.  And welcome!  We're so glad you joined us.  If you feel up to sharing your story, please do.  We'd love to hear it, get to know you and offer you many ears as well as endless encouragement and support.

Oldbat 
Report this post      
 
Reply by oldbat
09 Feb 2015, 1:35 AM

Happy Sunday all you long-haulers!

I decided to open up a bit about where Karl and I are.  So, a brief bird's eye view of Sunday Afternoon With Karl and Jen:

Karl comes to me for lunch and comfort every Sunday.  We start out with a drink and a chat, although that's been more difficultt lately.  Problems with his speech.  More later on that.  Then lunch, of which he eats very little, except dessert which is always something gooey and rich!  That goes pretty fast!  We chat and enjoy each other's company.  He is so loving, and needs so much love and care from me, which I am so happy to give.  After lunch we hold hands and listen to music which lately, means that Karl has a "little" nap.  Lately that has stretched to two hours or so, which doesn't leave us much time out of the four or five hours we spend together.  When he's feeling well which lately has not been often, we play gin rummy.  He often skunks me!  In fact, last week he wiped the floor with me!  But little by little he seems to be losing his co-ordidnation and concentration.  He will be 85 in a couple of weeks, so I guess that's to be expected, but it makes me so sad.

He definitely seems to be losing his speech.  He "sees" the words in his mind, which is still quite sharp, but the muscles around his mouth are tight, and he has difficulty getting the words out.  I've noticed that, recently, he's been waiting for me to say something, and then he parrots me.  He also seems to get tired much more easily and takes frequent naps, a new thing.   And today, He desparately wanted to stay the night, which would be wonderful.  But I'm too handicapped to be able to lift him alone and he has very little movement, paralyzed all down one side.

However, today he gave me a delightful surprise.  We were putting his coat on, prior to leaving, which is always a struggle, and he suddenly stood up in his chair in order to make that easier for me.  I couldn't believe this was actually happening.  It's the first time ever.  That's my hero!!!

Just being together for two days a week is a blessing.  But I'm scared by his steady loss of speech and his fatigue.   He tries so hard, all because he wants to please me and come home.  To his real home.

This is breaking my heart.

oldbat 
Report this post      
 
Reply by KathCull_admin
11 Feb 2015, 6:15 PM

Hello,
Xenia posted information on the PBS program  Being Mortal on the thread,  But who advocates for me? Oldbat asked me to post it here as well for those of you who may not be on that thread.

I have cut and pasted a short excerpt from what Xenia wrote about the program here:


The Frontline program was called "Being Mortal" and the program featured Dr. Atul Gawande who wrote the book "Being Mortal".  He did interviews with patients who were facing death and speaking to their doctors who had a hard time dealing with death just as many of us have.

After viewing this program, I found that we, who are on CVH deal with the death of our loved ones in a similar manner and perhaps more knowledgeable as we are with the very ill person 24/7.  We have lived with them, know their needs and wants, their wishes. I encourage you to watch this program as it will help you understand that we are not alone in our dilemma and that the doctors, nurses and all who care for the dying are just as much affected and uncertain as we.”


Katherine



Report this post      
 
Reply by oldbat
22 Feb 2015, 10:34 PM

Hi Marigold and Bubu and all you fellow long-haulers,

How are you doing?  Please let us know.  We miss you.  Come share with us.

My news:  Karl seems to have perked up.  We had a wonderful 85th. birthday lunch together on Friday.  His energy and speech seem to have come back, probably thanks to the few days of sunshine we've had here in the centre of the universe!  Our meal was delicious but so big that neither us could finish it.  Dessert was delectable, and gobbled up by us both.  Do sweet thing help you on this long road we share?  Please let us know.  I got a wonderful surprise when the bill came:  the restaurant owner had comped Karl entree and dessert!  I only had to pay for his soup and my own meal.  There really are some good  people in this world.  Have you experienced random acts of kindness lately?  Tell us about them.  It does us all good.

Looking forward to hearing from you. and sharing with you.

oldbat
Report this post      


Our Partners
Asked and Answered
Asked and Answered

Find out what Canadians
are asking

Ask a Professional
Ask a Professional

Our team of experts answers
your questions about
life-threatening illness and loss.

Just want to talk?
Just want to talk?

Join the Discussion
Forums

Books, Links, and More
Books, Links, and More

Recommended by our team

Programs and Services
Programs and Services

Find local, regional,
and national services