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Reply by Xenia
27 May 2015, 5:32 PM
Good Morning Frustrated and all:

I am so sorry to hear about your dilema with the health care system.  I do not know which province you live in but you can bet your bottom dollar this is the same in all the 10 provinces and 3 territories.

You are a good advocate for your husband and having had his name of a waiting list for placement was one of the best things we can do. I share your pain of seeing your husband laying there and not being able to communicate his feelings.  As the caregiver of a loved one we share your pain, your anxiety and anger toward a system that we trusted would look after us when we became ill.  

Many of us on CVH have gone through the same problems you are and have faced and found help here.  I am so glad you turned to the members here who understand and know what you are feeling.

 I begin to wonder if we as we age should be putting our names on a waiting list.  It scares the day lights out of me to think I have to resort to putting my name on a list to get placement should I become incapacitated in the future.  Do we have to start planning our future as early as 60 or so or do I leave to my age which is 79 and almost 80.  How far do we have to plan and save for our future care? 

We are still waiting to hear from the hospital as to what will happen to my brother, Stephen, will they insist again we take him home, they offer medication to keep him calm, they offered to build a ramp, but those things are cosmetic, he needs care 24/7 under the direction of a health care person who can provide the care he desperately needs now.  We have cared for him for 10 years and he is too ill for us to care for him at home and until the system hears us we will continue to advocate for him and others in the same position.

Reading and going through the needs of others dealing with palliative care brings back all the sad memories of John and our desperate fight to have him placed in care and thank our higher Power for a wonderful doctor who guided us through the system when we could no longer plow through it on our own.

Keep in touch Frustrated and know we care for you and others who need understanding and can listen having been there ourselves.

Xenia 
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Reply by oldbat
27 May 2015, 10:36 PM
Hi everyone,

Sorry for the l-o-n-g silence.  Been going through some difficult issuers with Karl.  But I have been reading all the posts here, and thank you so much to the people who wondered how we were doing.  Specially you, Xenia.  I have read and re-read your touching tributes to life with and without John and continue to so admire your strength, resilience and fortitude.  Jimmie, too. As well as Nouce, NatR, Adopted Son, Kath, et al, my love and thoughts are alway with you. Out of sight has not been out of mind for you, or anyone else on this, or any other CVH discussion thread.

Had to write in response to Frustrated's horror story.  I am so, so sorry to hear the hell you've been going through. A hell instigated and perpetuated by the very people who are charged with "helping".  Or should I say "hellping". And this prompted a thought:  we have enough hard information (ammunition)on this site to make the perpertrators sit up and take notice.  Would it be possible to compile an anthology from all our writings and send them to the Minister of Health - for each province and those *******s in Ottawa.  I realize there are privacy issues, and participation in such a collection would be entirely voluntary.  Names could also be changed to protect the privacy of anyone who wanted to join in.  Copies of this Anthology of Anger/Hurt/Despair could also made available to the press.   Remember, this is an election year.

I did say this was just a thought.  Is it worth discussing?  I'd be happy to help in any way needed. 

wounded oldbat

 
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Reply by Xenia
27 May 2015, 10:51 PM
Dear Old Wounded Bat:

Welcome back, if I knew you were coming, I sure would have had a cake.

So glad to hear from you.  Yes, and yes to all your questions especially the idea of an anthology, I was speaking to my sister this a.m and wondered the same thing.

I do believe we would present the reality of living, caring for and needing help for a sick and dying spouse or child.

This would be a reality check for politians and as my letters to them I asked them to look at their own families, ie, Harper, his aging parents, Rona Ambrose who stated she had to find palliative care.  She was fortunate to find it and in my letter to her and other politicians was "Find" is the operative word.

Why must one in Canada have to FIND palliative care?  Why does one have to find care in a care facility all the while it is desperately needed.  Where are the beds for these patients, where are the facilities?

Yes, we all must become more proactive even though we are grieving.  We need to help others so they do not have to endure the pain of seeing a loved one all the while our hands are tied by buracercy (spelling...I have some loose fingers here) and the need to keep the sick person at home under the guise that home is better.

All for now, I have some curried chicken cooking on the stove and just happened to head into my computer room (who am I kidding- computer room) my spare bedroom where I left the phone and opened up to see if anyone had written.

Take care and I will be in touch letting you know about the email I received from our MP about the caregiver tax benefit.  It takes a tax lawyer to figure this out.

Xenia 
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Reply by Xenia
28 May 2015, 1:46 AM
To All on Who Advocates for Me:

I forgot to mention that I had viewed an ad on TV showing an elderly lady in a wheel chair and she was having perfume put on her neck by her elderly (husband) I assume and the ad was put on by the Canadian Medical Association.

I went to the web site and I would encourage all on Canadian Virtual Hospice to go to the web site and if you choose become a friend and give them the information they are asking for regarding Senior andSenior care.

The website is:  www.demandaplan.ca and view it.  I have and have forwarded the email on to all my friends and any senior I know.

My friends will probably say:  Here she goes again as I have been known to undertake for causes and have been told that I will make a cause even if there isn't one, but they still love me, I think.

Take care and lets get behind this call for providing care for Seniors.

Xenia 
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Reply by AdoptedSon
28 May 2015, 3:48 AM
Thanks for that link Xenia (see I spelled it right this time) and I posted on Facebook the link. This is the year that could get Seniors a break, if we keep up the pressure, on all fronts, on all, I mean ALL politicians.

Ian

ps Xenia : You sure know how to get a guy up on a soapbox, thanks. 
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Reply by Xenia
28 May 2015, 6:37 PM
Good Morning All:

The nightmare of reliving John and his need for palliative care is rearing its' head again and I feel as if I am not awake from all the trauma of caring for my husband as there was no room and very little palliative care available.  Thanks to a caring doctor who put his neck out for us and helped get us home palliative care.

We have been informed that my brother would have to wait one year to get placed into care.  He needs 24/7 care and the only way we can get some emergency temporary care is to say NO NO NO we cannot take him home.  We cared for him for 10years selflessly, no cost to the government even when he had a heart attack, had a stint put in, had pnuemonia, etc and because of his mental illness he would not stay in the hospital and would run away.  He would not take pills unless we administered them.

How hurtful is this to Stephen who worked all his working life until he became ill, paid his taxes, never was acosted by police, lived quietly in his hovel in the park and hurt no one.  Now, our health care system says:  No we do not have a place for him and you should take him home.

We cannot do this as we are worn out, first with John's care at home for years then his home palliative care, now Stephen who needs more care than John did as he is so ill and thin and cannot walk more than 50 feet and that is why they feel he can go home and is not palliative.  What do they consider for palliative.  I know they have a scale and you have to have the magic number of 6 here in B.C.

Enough of my whinning.  Have some loaves in the oven, baking for the Legion Bake Sale, the batter sure got whipped good, my anger was placed on the beating of the eggs and sugar.  Hope they are extra good this time.

After I get all cleaned up I shall begin to call our local MLAs and MPS and see what can be done.  They will probably say the same thing again, no room ...get on the list so everyone of you on CVH get your name of the list as who knows when we may need care and a room.

Regards

Xenia 
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Reply by frustrated
28 May 2015, 10:11 PM

Hi Xenia.


The only way I got my husband in so soon was by private pay, I also have to wait a year to get goverment funding to help out. There shouldn't be a year witing list for help when most who go into extened care won't live a year.


 

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Reply by Nouce
29 May 2015, 1:35 PM

Listening in from south of the border makes me realize how poorly both our systems understand and care for the needs of the elderly and dying.  My husband is on a waiting list for extended care in an entirely private pay system, and I can't get any government help until I'm broke.


I honor you all for speaking up and hope some day I will have the energy to talk more publicly about what a mess we have down here, if I survive taking care of Pablo through the mess.


 


Nouce 


 

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Reply by Razz
31 May 2015, 3:15 PM
oldbat, Xenia and all ......  

Such good and important points.  We do need to make our voices heard and sooner than later I suspect.  My "fight" is not at that stage yet but I can see and hear how it has gone for those before me and it makes one not only angry but scared as well.  

The only way to affect change is to speak up and "loudly".  It will need to start at the grass roots, all good causes do, but one voice can lead to a groundswell.   And remember our voices = votes!   

Much to think on - Razz  
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Reply by Xenia
31 May 2015, 5:33 PM
Good Morning All CVH members:

A quiet Sunday morning, not doing much.  Waiting for Monday to go to the pool, Tuesday finally having our conds's rugs cleaned and then have a good housecleaning to keep the condo fresh for the summer.  Actually removing some memories made by John, spilled coffee by his chair, spilled meds by his bed, dirt tracks from his wheelchair showing in the rug where he went and spent the days.

I haven't put up the window shades and don;t know if I will this summer.  Reminds me too much of sitting outside on the patio with John watching the ducks and all in the koi pond.  The laughs we shared and watching the sun go down sitting knowing we had little time together.  Bittersweet memories but ones I would have never given up.

Jimmie you asked me about my life in the small town where I lived.  I finished my grade school, moved up to high school, walked there about over a mile, summer and winter.  Came home for lunch and would stop in at the butcher to pick up meat for mom to cook our evening dinner.  We would take part in school activities, ie: the school news paper Vox Studentum, I took latin and french in high school and can still conjucte the verbs, etc. femminine and masculine.  Math was not my forte but graducated and went to Regina to take business school.  Worked and there I met my husband.

John worked on the Royal Canadian Shows and one day he stopped me and asked me where I was going, etc.  We bantered and he left with the carnival for other towns in Saskatchewan before heading back to B.C. where the carnival wintered.  Before he left as I was walking through the gay way he called to me and said : I am going to Marry you, Mooch"  I laughed and went on with my life until one cold day in October I hear a voice calling me.  I was walking with friends going to a movie and lo and behold it was John.  He had come back for me.  Of course, I stopped and went for coffee with him and friends.  He had come back from Vancouver searching for me.  Went to Simpsons where a lot of girls worked, to the Telephone office, waiting by the doors, went to all the places were working girls had lunch downtown, however, I  worked further out and lived only blocks from where the carnival was playing.  Fate would have it that he found me.  


Of course, my parents weren't too pleased John was a carny but with his smile and winning ways, he could do some carpentry and that helped, they relented and we married in the coldest day of the year, actually the snowiest, but we endured all the time we were married. After we were married I went to work with John on the carnival.  Lasted one season and enjoyed every moment of it.  Small towns across the prairies, Saskatchwan, Alberta and B.C.  Every town we played in seemed to be the same, parents with children, baby buggies, everyone happy to see the Carnival, the games, the monkeys and the elephants.  The smell of the popcorn, the cotton candy all over the childrens; faces, a boyfriend winning a teddy bear for his girlfriend, the town lover boy showing he could throw darts and win something by hitting ballons in the ballon joint.   Then after their games they came to the Hamburger joint, the smell of the onions wafting in the still hot summer nights.  There were churches putting on meals for a few dollars which were so much better than the hot dogs and hamburgers, full meals homemade with pies galore, cakes and all home made.  But no, everyone waited for the carnival and the wonderful hot dogs and hamburgers.  The owner calling out" Steak and Onions, Wiener lunches" all fortified by the orange crush drink, cold and waiting to wash down this one time luxury dinner as many of the townspeople were pretty poor and a nickle or quarter was a lot to spend.

 Sure we had our ups and downs, me from a small town moving to Vancouver what a change but being able to change I became somewhat citified, then we moved to Windsor, Ontario, but no work so John went back to VAncouver and I followed.  He went to work on the waterfront and we saved and purchased our first home.  All the rest is history.  Moved to Lac La Hache, that is in the Cariboo, then back to the Mainland, Chilliwack, then to Langley, B.C.  We moved as John was getting very ill and the pollution in the valley was horrendous so we moved away from it and as I was the caregiver then and had all the yard work, etc, the family insisted we make a move before John got too sick.  That is the story of our lives, much missed out, however, life has been good to us.  We both worked hard at our jobs, worked hard with raising the family, thank god they are okay, no one in jail and that is an accomplishment these days as there are so many things attracting the kids now that we share the anxiety of parents who have children who have various social problems.

We worked hard at our marriage and as such were able to live a good life for 59 years less 5 days and I do not regret one day or minute of being married to John.  I do miss him very much as the time goes on.  5 months since his death and I still look for him in various places and ways.  I do believe I shall always feel his prescence as time goes on and tears dry up and he knows I miss him so in a way he is there to comfort me during the bad times.

So, Jimmie that is the story of mine and John's life, not a great love affair like Romeo and Juilliette but I do believe fate played a part in our lives.  Him from Windsor, Ontario, me from a little town in Saskatchewan, meeting in Regina and from there our lives started a new chapter.  Four children, one grandson and as such we shared a life I would not trade for all the gold in the world.  Besides, gold loses it glitter while our love for each other seemed to brighten as the years went on.

I relish remembering our lives and I know all onCVH have memories just as precious and writing about them is very helpful and healing I found out.  So, if you want share your memories and relive them as I have and realized I had put many of the memories in a safety deposit box and am now opening it and what a treasure.

Hugs to all.

Xenia



 
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