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Reply by KathCull_admin
07 Jul 2017, 5:12 PM

Good morning (or good afternoon depending on where you are across the county and NA)

The noise outside my window is that of trucks and loaders fixing a broken water main across the street. I presume the crows who were out this morning have moved a few streets over until the work is done:) 

I will be thinking of you at your table especially today Xenia - the presence of friends who care (as we all know) can mean more than anything.  

Speaking about travel - in a round about way: My sister asked me about my first plane trip - and I was surprised by the pleasure I had in remembering it.  It was like I was back there - the sights and sounds - and as always for me the memory of food! First time I had fondue - cheese and chocolate!

I like that about mind travel - you can go anywhere, anytime and no cost involved. 

Oldbat I wish you more time outside talking, enjoying friends and knowing that Karl is content. Jimmie I wish you clear water to drink. NatR I wish for you strawberries and tomatoes. Xenia I wish for you more of what is to me 'eye candy' - ships and sea. mountains and trains.

Warm hugs to you all

Nouce how are you? and Pablo? And AdoptedSon? 

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Reply by Jimmie
09 Jul 2017, 10:28 AM

There is a kind of loneliness, a weariness impervious to the

benevolence of words. It is a desert where nothing green

grows. The landscape is flat and unvaried, horizons

nonexistent. It becomes a labour to get out of bed, or turn

on a light, or even to converse.


What to do then when words are ineffective but to touch. To

feed and clean and set fresh flowers on the window sill. To

adjust the pillow. We are left with little else but such small


Were I there with you, Oldbat, I would do the same for you.

In honour of your spirit. In acknowledgement of your

exhaustion. We are left with tenderness when all else fails.


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Reply by Nouce
09 Jul 2017, 2:21 PM

Greetings and love to you all. Those tiny gestures, Jim. They hold life. Put seed in the feeder. Push Paul to the window. He watches the squirrels and rabbits tussling over the debris. I watch him.

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Reply by Xenia
09 Jul 2017, 3:38 PM

Good Morning to All:

So lovely to read the messages on this message board.  We are still united in friendship and sharing.

Last night  after I finished playing cards  I sat on my patio and saw the wonders of nature.  From my Patio I see the snow covered Mount Rainier in Washington state and another large mountain lurking in the back.  Below the park is filled with tents and dogs.  They are having dog sessions and their ability to run, jump, go through all kinds of tests.  The excited barking of the dogs bring many of the residents out of their homes to view the dogs doing their exercises.

Closer I see the residents of my building in the garden.  Tonight is Happy Hour outside.  The garden is green and inviting.  The hydrangeas in bloom, all types of flora are in bloom and the garden is the backdrop for a happy time.  I do not attend as I was in the Penthouse, playing 10cent a game black jack, I had been outside for most of the afternoon sitting in the garden reading and enjoying the outside and had promised to be on hand for those who wanted to play Black Jack.

 Yes, we have a penthouse, the 19th floor of our residence from where we have a 360 degree view of the Ocean, the Lions gate bridge, Vancouver and the mountains.  We view the ships at anchor in the harbour, the Cruise ships waiting to get into their place in line.  Sundays and Saturdays, the ships load and unload and set sail for Alaska and such.  We are indeed fortunate

All this green and happiness is contrary to the wild fires burning in the West Cariboo where I used to live.  The thousands of acres of fires is disheartening and my heart goes out to all living in the Cariboo.  For those who are not aware of the Cariboo, it is cowboy country, further north is where the gold rush began and is full of history and a huge area of lakes and mountains.  I lived in Lac La Hace and there was a large fire near there and the fires have now spread to Cache Creek and the town of Ashcroft has been evacuated.  I pray for rain for this area and comfort for all those who have lost or are in danger of losing their homes.

Jimmie, I understand your words: What to do when words are ineffective.  Yes, touch is needed to express the words, the adjusting of a pillow is a loving gesture.  What more can one do but give what little gestures of love we can.  As you state, flowers on the window sill.  How I remember doing some of these gestures not only for John but for myself as this was the way I could express my love and caring at a time when words just did not convey what I wanted to say.

Nounce, yes indeed all the small gestures give Paul your love and Old Bat you are indeed a brave lady and prayers for a complete recovery from your illness.

Katherine, one day you must come to the Coast and feast your eyes on the mountains however I know there are many parts of Canada which are just as beautiful  Nat, you do so much for others and I agree we need to meet and share, all of us and get to know one another personally.

Wishing you all a pleasant day able to enjoy a few moments of time to rewind and free of overburdening cares.


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Reply by KathCull_admin
02 Oct 2017, 12:29 PM

Big hugs to you all from me and I bring you the following message from Oldbat.

"Please don't give up on me.  I miss CVH and all the wonderful people I met on-line so much. Do read the posts whenever I have a moment.  And do want to get back there myself. 


Very burned-out from over five years of totally solo care-giving. I've given up on Social Services here in Toronto.  They're as much use as tits on a bull - to quote my cowboy friend! So have done what I've been threatening to do ... gone public.  Wrote to a reporter on the Toronto Star and she emailed asking to interview me soon.  I'm sure that our resident activist, Xenia, would be delighted to hear this. 

And please say "hello" to all my buddies on "But who advocates for me ....".

I've shown the letter I wrote to the Star to various members of my medical "team".  Their name is legion!  Every single one of them encouraged me, and told me that there are many, many people in my situation.   I'll keep you and the gang posted on what comes next.  If this doesn't work I  have a whole alphabet of other plans.

I think about you often and wish you peace, love and joy."

And an update on the above - which I am very sorry I did not post sooner.

"BTW. the article I mentioned will be coming out in the Toronto Star soon.  I'll send you a heads up.  And I've been approached by a social services group here to help get them started on a comprehensive care-givers' program.- for the health care section.   the  group is support for the care-givers but wants to talk to us first before putting the whole thing together for us.  Thinking of referring of telling them to check out CVH as an excellent starting point/reference."

With love

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Reply by Jimmie
02 Oct 2017, 5:00 PM

 Excellent, excellent, excellent!!!!!!!!!!!!!!!!  A thousand exclamation marks.  I am so encouraged by this news.  I am very, very proud of you Oldbat and humbled to hear that in spite of your exhaustions, you have mustered the strength and resolve to take this step.  We are all in your debt.

Excedllent!  You have made my day!

Love and gratitude to you, dear.

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Reply by oldbat
02 Oct 2017, 10:14 PM

Ah Jimmie.  So, so good to hear from you.  Seems that we have both been in the wars for the past few months.  I think so often about you and Sara.  How is she doing?  And you.? BTW , one of what is now my "team" of doctors put me on medical marijuana this summer, and it may even have restored me to an iota of sanity.  (Whatever that is in my case!)  Just a thought:  I've done a lot of research on this lately, and there are medical studies reporting that it can help ease some of the effects of Huntington's.  Could be worth a try?

I do miss everyone on CVH.  Hopefully if/when I join Karl in long-term care (his new home - which is lovely), I will regain some of the health and energy I've lost over the past six years.  Everything's still up in the air though, largely because our finances are in such a mess.  This is ONE of the reasons I'm going public.  And, if that works (hah!), I'm already thinking of my next venture - exposing the sheer ineptitude of our so-called "care system".  Which should be renamed "don't care".  Nobody coordinates or informs about what services are available or where.  I've spent SIX years trying to get REVCan to allow me to deduct at least some of Karl's expenses:  wheelchairs, glasses, dispensary fees, dental care (close to $20,000 and climbing.)  They've always turned me and my accountant down, on the grounds that Karl is not at home with me, because I'm too handicapped to cope,  If he was, I'd be eligible.  So, I've sicced the reporter on them, and they're now telling her that I AM eligible for some tax breaks.  After six years of denial - to me and my accountant!  I got hold of a copy of the income tax guidelines for 2018, and apparently that MAY be true for next year.  In the meantime, I've witheld filing this year in protest. Also not holding my breath.  Mr. Sunny Ways has proved to be a big disappointment.  Great at selfies though:)
A big shout-out, too,  to Xenia, Nouce, and all you lovely, lovely people on this board.  You know who you are.  My rapidly disintegrating brain can't handle a list at this point.  But I do remember, oh so gratefully, the laughter, tears and kind consolation, the jokes, virtual hugs, chocolate and wine we've all shared.  You truly bouyed me up during the times, and there have been many, when I really didn't think I could make it.
And for you Jimmie, a BIG (sadly virtual!) hug along with much fondness and appreciation,
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Reply by Xenia
03 Oct 2017, 10:54 PM

Greetings to all:

Happy Days hearing from Old Bat and Jimmie and on the other message boards.

Right on Jimmie, Old Bat I am in front, behind and all around you in support of your taking on the government be they federal, provincial or municapl or whatever.  We need more input from Seniors who have been given the finger more than once.  Why is it that there are funds available for so many other groups, many needed and supported, yet the needs of seniors who are in dire straits are being igonored.

Old Bat, the whole medical system would collapse if they had to pay for all the free care being provided by wives, daughters, grandchildren, children...sons and daughters.  All the care provided with no recompense.  Not only no funds but no relief or respite.  Why?  I truly hope you get some answers for all of us and if you start a petition let me know.

Jimmie, so glad to hear from you.  I backed off messaging as I felt that perhaps I was being overbearing but I was very concerned about you and Sara and had you in my thoughts often.  I hope you both are doing well.

Life for me has been good, lonesome but that too is part of losing John and as I wrote on one of the other message boards Autumn is a hard time for me, more so than other times of the year.  We used to head to the forest cut downed trees for winter wood, bring it home, cut and pile it in the basement.  Cold and when we finally got into the house there was a wood stove heating the whole house, the kettle on the side hot and ready for a cup of tea or coffee.  Sure miss those days but now watch the ships up and down the harbour moving wares and the other tankers moving oil to be processed.

Nat and Nounce keep in touch, even though you are on the other message board, I miss you and know we all miss you and your messages.

With affection and hugs to all.

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Reply by NatR
04 Oct 2017, 6:49 PM

Hello Xenia and all,
never back off Xenia
your posts are missed and never were overbearing 
Keep posting
i remember that fall is hard for you and that’s a good reason to keep in touch

thanks for sharing what you and John used to do together - I can imagine it was a very good time for you both to work together and talk together - plus gather the fuel to keep the Home fires burning

sending you good thoughts
it’s very warm and almost tropical warmth in northern Ontario

i was at a fishing lodge  here in the north - and despite the yellow gold and red leaves - it was 80 degrees F last night lakeside - at 7 p.m. 
hard to believe in October but no complaints from me

I hope that all readers are having sunshine, and encouraging days - despite the fact that life isn’t always exactly the way we pictured it

i am grateful to you all for sending notes, for sharing your good times and hard times - we are all surviving and that’s important

hoping you all feel kindness, friendship and hope ;)

best wishes and warm regards  
natR 🤗👋❤️ 
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Reply by NatR
04 Oct 2017, 6:57 PM

Dear oldbat,
you are running down the right path, you give em heck give em hell and give them something to think about
I agree with everything you said

its wrong the way seniors and disabled are generally left to hang out to dry, figure things out on their own, and generally feel they are forgotten 

it’s more than time for a change in the system 
we deserve so much more as we age and need support
Hoping your battle  will raise some questions, some eyebrows and get more attention 
way to go Oldbat,
sending good wishes and a big hug 🤗 
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