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Reply by NatR
24 May 2015, 3:01 PM
Dear Xenia 

a lovely letter from from you today, I enjoyed reading about your visit and chat with your brother to the description of the program's you watched, about letting go etc.

all very helpful and soothing, not to mention a peaceful description of memories, connections, letting go.

i wanted to comment on your fear of going out alone all of a sudden since Johns death...

i recall all moving from a tiny community up north - where everyone knew me, and I knew everyone, if not by name at least their faces were familiar.

i moved to a new community, where I knew no one, no smiles or hi there, how are you etc.
i was very fearful about going out.
i was afraid I wasn't sure where I was going, or that I would be clumsy and make a fool of myself ... I am a bit of a klutz, but it's worse if it happens where you don't know anyone.

i wonder if you are going through a bit of "culture shock" like I did when I moved from a well known familiar place to a terrifyingly unknown place ( I still freeze in fear in strange places and get lost easy)

perhaps if you think about it  ~ you may feel there is a bit of similarity....now you are a single person, no longer part of a couple but Xenia you are so valuable and so warm and wonderful.

i just see it as you stepping out in a whole new world...without John as your anchor.

let me know if any of this resonates with you....just trying to help ;)
hugs and I value your contributions to the forum and applaud you as you travel this new path and become a more confident person once again.

i have laundry to do today and will look forward to a relaxing quiet day...
it is sunny and I hope maybe a walk will happen later

hugs and thoughts to everyone reading this,
natR  
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Reply by Nouce
24 May 2015, 6:05 PM
Thank you, Xenia. Your updates and thoughts make me cry.

Nouce 
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Reply by AdoptedSon
24 May 2015, 6:27 PM
Dear Xenia

You said that you aren't over the loss of John, and it made me realize something, as I am still mourning the loss of Mom, but also our dear friend Jim, and yet, even now, I am finding I am also still missing Dad, who passed away some 12 years ago, when it struck me, how can we ever get over losing someone that was so special to us?  And more importantly, why should we try to "get over their loss:

They filled our lives with love, with their very presence, their wisdom, their compassion, and even their anger, their own pecularities.  Why should we even try to "get over" all that made up our lives?

Maybe we should embrace it, relish in their memories,their smiles, their touch, shed a tear or two and know that right now, they are shedding a tear or two for us, as we stumble forward trying to make sense of such losses, such pain.

Maybe we have lost someone close, though their memory is still there, when we need it, to grab from their spirit, the strength to go forward, to be the person they loved so much, cared about so much.  Perhaps it is simply doing what we used to do, but with more purpose now.

When Mom died, I thought I had lost my anchor, then when Jim suddenly died not even a month later, it was like I was drowning. Yet I am still here, doing things I couldn't do for the years David and I cared for Mom in the home. But as I walk around our little patch of garden, I shed a tear, as I think of how Mom would love to go past the raspberry bushes, how she would be able to reach out and pick one or two raspberries herself and I know she can't. Then I simply smile, because I can do that, for her.  I can stroll past the raspberry patch, pick a juicy berry and enjoy its flavor, as she did.  Or I can bend down (carefully) to have a strawberry and recall how Mom's face would light up whenever I brought her in one or two off our Balcony when we lived in the city.

I sit on our back porch, and smell the cinnomin carnations I planted, look at it and smile, shed another tear or two, knowing how Mom would enjoy that scent, how her wrinkled face would break out into a smile as the scent from the wild rose bushes would waft past the back porch.

I take another sip of coffee, knowing how crowded it would be on the porch, with the dog, me, David, and Mom, had she lived to see this place, though knowing that it would never be, as her Doctor doesn't make house calls to this little community.  Still, it is nice to imagine it, to see her sitting there, watching the wind blow our small grace smoke tree bend in the wind, or see Molly (our Jack Rusell) chase a flying bug.

Or how her eyes would light up and sparkle as the hummingbird would come to taste the various flowers we have sprouting, the SnapDragons, the Morning Glory.  She would have loved it up here, but maybe, she is, just not as close as I would love, or maybe in some way, she is closer than had she been sitting on that porch.

Get over the loss? No I think instead I will choose to accept that only a small part of her is gone, for what really mattered, that face, that smile, that loving touch still exists, just that it is residing inside of me, not around me, and you know, I think that touch, that love, is even stronger now, because she isn't a hair breath away, she is a part of me, just as John is now a part of you.  He hasn't gone, he has just changed his location, to be closer than ever before, and while the physical being is gone, what made him, has not left. He is with you, even if you go out that door, for a morning stroll, he is still there with you, holding you hand, seeing your eyes widen as you see the calvade of life around you.

He isn't gone, nor is Mom, they are with us, will be forever, and so I think maybe, I will try to embrace what they left, try to enjoy their spirit, that resides in my heart, where they will always be. I can't touch Mom, or hold her hand, but everytime I take a walk past the roses, past the raspberry bushes, I will feel her love, her touch, more deeply than ever.

You know, I used say "I Wish Mom Was Here to See This" and now, I don't say it so often, because she is seeing it, through my eyes, and she is smiling.   With every tear shed, a warm loving memory blooms inside, and I know, I never want to get over that feeling.

Hugs and Take Care, and enjoy your walks, because you won't be walking alone.

Ian 
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Reply by Xenia
26 May 2015, 4:05 PM
Good Morning All:

Dull day to-day, catching up on my chores, yes, here I am again chores.  

Ian, your message is so intense and reminded me of how much we loved, still love and miss our loved ones. Whether it be a parent, a freind, a lover or a spouse.  Sitting quietly after I returned from the pool yesterday, I kept hearing the words from a silly movie I watched on Sunday, it was called a Little Romance and a quote came up: "I shall but love thee better after death,"

This kept going through my mind and I was fixated on this as I wondered about it, did I love John more after he died or was my love for him greater when he was alive.  I went to the computer and sure enough:  Elizabeth Barret Browning wrote the words to How I love thee.

I quote from the last few lines and I do believe this speaks for all of us on Canadian Virtual Hospice:  "I love thee with the breath, smile, tears of my life, and if God choose I shall but love thee better after death." Everyone may take what they like from this quote but for myself it spoke of everything I felt for John throughout our lives together.

Got word from the hospital the Sunday that the doctor was certain Stephen would be kept in palliative care then to hospice as he was so ill.  The cancer was larger, etc.  Daughter and son in law took time off from work to meet with said doctor and social worker, etc.  The palliative doctor rejected the first doctors advice and Stephen will not be going to palliative care, he is not sick enough.  He will be sent home, perhaps with care.  Here we go again, same thing I went through with John and so many of you went though with your loved one trying to get palliative care or placement in a care facility.  Stephen cannot walk by himself, he falls, he struggles to breath, he is skin and bones but he is not sick enough for palliative care.  

We now have a Seniors Advocate in B.C., first one in Canada and she is asking for advice on what is needed for seniors.  I shall provide her with a lot of information and it will be factual as we all have gone through the horrors of trying to find care for a dying loved one.

Everytime I hear or read about the disregard and no communication between hospital, patient, caregiver, and social worker I go back to John and our family as well as all of you on CVH.  When will our politicians realize families are tired and are getting ill themselves caring for a loved one.  What will it take for them to wake up and see the need.

Guess I am beating my head against a brick wall, but as the saying goes, I am made of sterner stuff and I will continue my advocacy for palliative care.  I am socially aware and as such I cannot sit quietly and let others go through what I had to endure caring for John.

All for now. Have to get off my soap box and mail out  a few more letter.

Take care all.

Xenia 
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Reply by NatR
26 May 2015, 9:52 PM
Hello Xenia

another great letter and insight into love both in life and after passing.  Thank you for sharing it

i think you are onto something - speaking to the senior Advocate about the very real need for more end of life, hospice and palliative care

it shouldn't be about counting the days or hours left - it should be about concentrating on the quality of life.  I applaud you. And I agree with you! 

I recently lost lost a cousin to cancer  - who was waiting for a bed in the palliative ward - which she finally got on a Friday night
she passed away on Sunday morning!

tell me - what about that last two days was so good? Why couldnt she have been getting special care and attention - concentrating on making her last days pain free and comforting?  Is it wrong to ask for more?  I say no.  I say we all deserve weeks or months or whatever time we have at the end of life - to concentrate on our connections, loved ones, spiritual and family support - and be surrounded with peace and care.

you are a gem Xenia - hugs
NatR  
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Reply by AdoptedSon
26 May 2015, 10:17 PM
Xenia, all I can say is Good Luck.

I will say that I have dealt with our Seniors Advocate, before she was raised to such a lofty status, in her capacity as head of the homecare company in Victoria.

A word of advice, keep very accurate records, never ever talk with her, without an independent witness present, that you can trust.

Ian

 
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Reply by Xenia
27 May 2015, 12:58 AM
Hi Ian:

Thanks for the heads up.  Daughter just called and you would never guess, yes, you would what the social workers have suggested.  We give up committee ship and then our brother could do as he liked.

There is no room at the inn and worst yet if you have a mental disease.  In this day and age!!!  Years ago they chained perons with mental problems, now they put them on hastings street.  

I am discussed it and will have to think about the next move.

This is a repeat of what they wanted me to do with John, take him home, medicate him and wait to find a care home so he could be placed.  Yes, wait till one of the patients died and he would move up the list.  Only in Canada, who knows.

Had to blow off steam or else I would have burst.

Thanks for the info.

Xenia 
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Reply by AdoptedSon
27 May 2015, 1:16 AM
Unfortunately, but yes I could guess, but then that is our more kinder and gentler world at work.

Course now if you owned Exxon or were a platinum contributor to the Harper Gang, you would have a place in a split second, but I should refrain from venting my own acute distaste with our elected leaders.

Xenis, you need to get yourself a blog and let the whole world know about just how great the health care system is, when you need it.  Or you can come and vent on mine, which I would list, but I am not certain of the rules in that regard.

Though I think most here, should, if they can, become part of the electronic age and start hammering at every politician they can, in the open, for all to see and who knows, one voice might suddenly become a million.  Even our tainted news agencies might have to start reporting the real life, we all lead, under the current style of mis rule.

Darn it girl, now you got me on my soapbox, LOL  but I am also fed up with how our Political Leaders so totally ignore us.

Keep on fighting, eventually the law of averages says we gotta win one.

Ian 
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Reply by frustrated
27 May 2015, 2:26 PM

HI Everyone,


I havne't written in soom time although I read you comments regularly. I jsut hjad to speak out on this.  I followed the rules and had an evaluation of need done last summer when I could see my husband failing. Because I could still cope with his needs "they" decided I didn't need home help and would keep the file for when the need arose.


Well you guessed it. In October when I desperatly needed help I was given a phone # to call teh reactivate the file, then i was told to wait and someone would call me back. Two weeks later they called and said the they only reactivated the file and Iwould have to call yet another number to set up a reevaluation. When I finally got through, I was told there was a three month wait to be reevaluated. I told them I couldn't wait that long. Then I was told to just take hom to the ER if I could no longer care for him at home.


Fortuately for me, I had put him on a waiting list a facility close to our home. The day after I had to take hom to the ER they told me a room was available. So that is were he has been. I knew the nurses and care aids as that is where my mother-in-law had been until her passing in October. They are very caring. Myhusband is now totally bedridden and unable to even move. They turn him regularly and keep him comfortable and pain free.


WHen he wsa in the hospital the last time I asked about getting him into pallative care and was told he wasn't sick enough. But he is on pallative care whre he is at for that I am grateful.


For me, I am not pain free and every day when I go to seem him lying there not responding except for the occasional grunt or "yes" or "no" to a question it rips my heart out and stomps on it yet again. I am struggling with such a mixture of emotions I struggle some days jsut to do the simplest tasks.


So I am struggling with grief but yet he is still here so it is ongong day after day. So it I don't write it is because it is all I can do to get through one day at a time.


But do keep up the campagin the get the help that is needed.


 

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Reply by NatR
27 May 2015, 3:03 PM
Dear Frustrated,

That is a very sad and disappointing story to hear...so much for the needs of those sick at home to be evaluated and helped...in their hour of need.

It is a difficult thing to deal with...and I certainly understand your burdens and just getting through the day keeping you busy...

I think we need to do more..talk more, speak out in forums, and get our politicians involved as this is an election year.

Best wishes to you and everyone reading this,
One day at a time..
NatR 
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