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Reply by NatR
01 Mar 2015, 4:15 AM

Xenia,
you go girl!
you Rock!
be a thorn in the side of government .. And I applaud you
keep on taking care of yourself...
best wishes,
NatR
 
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Reply by AdoptedSon
01 Mar 2015, 8:53 AM

Xenia

It is good to hear, that your campaign is moving forward.  A suggestion, write to Andrew Weaver, MLA for Gordon Head / Oak Bay as he is trying to bring about changes to our BC Health.  He may be a lone voice, but contact them, they are trying to get a social media campaign going on people's experience with BC Med.

I have an email to write to them as well, after failing to get any answers from my MLA Horgan of the NDP.

Public Pressure is needed, it seems to make our Politicians actually do the job we hired them to do. Too bad, but we have an opportunity coming, we should all be taking advantage of.  It is a Federal Election year and it is time to put every single Political Leader on the hot spot, when it comes to proving us with proper and responsible Health Care.  Support for caregivers, who take a huge load off the Government Coffers is one step.

So good on you, and I know I am ramping up my advocacy, got me a blog started and who knows, one more pin prick in the Government's thick obstinate hide might help.

Ian 
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Reply by Xenia
02 Mar 2015, 1:41 AM

Hi All On CVH:

Looks like the sun has disappeared again and the cool wet weather is back again so I have not much to do to-day.  Will be going to the Legion this evening helping with the Natcho sales.  The ladies Auxiliary does this to help fund raise for the veterans.  Gets me out of the house and mixing with others since John's death.

Waiting to go to the Legion and daughter returning to Vancouver I sat down and got all my income tax information together.  In the stack of mail that we had to pick up at the post office since our mail boxes were being updated I found a booklet from our local MP, again the same guy who I spoke of previously.  It was a helpful tax guide.  Sat down and read it and came across an interesting section on Cregiver Amount & Family Caregiver Tax Credit.

Adopted Son, you were right on when you stated caregivers save the Government loads of money.  I had at one time thought I could use Caregiving as a tax credit and then forgot about it.

I know some on CVH would be interested to know that we are caregivers cannot claim our husbands, spouses, etc as a dependent.  It reads like this: "If at any time in 2014 you (either alone or with another person) maintained a residence where you and the person you supported lived (a spouse or common-law partner is not considered your dependant for this purpose) you may be able to claim a maximum of $4,530. under the Caregiver Amount, for each eligible dependant. 

Isn't it unbelievable that the government would make this benefit to so many of us who have cared for our loved ones and asked for nothing more than to be recognized as the person caring for a sick and dying person.  Are our partners less than others just because we are married or living common law then my caring for a brother, uncle or other person.  This is not fair.  

Adopted Son, thank you for the information and I shall be doing my best to contact the persons you mentioned.  I have much more time on my hands now and time does drag since John died.

Since John's long illness and being literally alone nursing and caring for him I had a number of hours where I began checking out what was available to us for his care.  Of course, as most of us on CVH I found that there was little that I could access or have enough money to have John cared for other than myself.  Thus, began my becoming more interested in how I could help myself and others so they would not have to go through what we went through as a family.

One thing I did learn from our doctor was when John had to go into the hospital and the social workers tried various ways to have him sent home we had to say NO and not be intimidated into taking him home when we could no longer care for him at home.  This is one of the most important words I had to learn.  NO, I cannot care for him at home as it is not safe and walk away.  This was hard, I went home crying but it had to be done.

Perhaps if more caregivers became more vocal and refused to be bullied into taking a loved one home under these circumstances it would put more pressure onto having more palliative care for the sick and dying.

All for now, I am going to go back to doing my income tax.  Have to tally up all the T4s and medical expenses and see how much I owe or get back, always a surprise when it is done.

Take care.

Xenia 
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Reply by Xenia
02 Mar 2015, 1:44 AM

HI:

I meant to say that our government would deny the benefits to so many of us, etc. etc.  

Typed too fast.

Xenia 
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Reply by Dar64
02 Mar 2015, 2:40 PM

Xenia,


It is discusting how we as the wife/husband doing all the caring, advocating etc for our spouse yet we are not intitled to claim this on our income tax. Maybe it is time for a flood to the media and how the terminally ill and dying are treated in this country, i know i am awaiting the long term health care minister to get back to me, as i e-mailed Kathleen Wynn about the care CCAC gave to my husband or lack thereof. I am giving him till Mar 6th to responed as Ms. Wynn said i would be hearing from them, but if i hear nothing i start typing everything that was so wrong with the service, and will be including how much being a wife and caregiver has effected myself and family, how much money i saved the government by taking care of my husband at home, and can't even claim the caregivers amount, i did my part as a wife, i also did my part as my husbands caregiver, advocate, i had to fight for his rights as a human being. I will let everyone know what happens, i am betting i will have to go to the media!! I don't go away when i am passionate about righting a wrong!!


 


Love & Hugs


Dar

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Reply by NatR
02 Mar 2015, 6:21 PM

Hi xenia and dear,

you ou are right,
nothing is easy or even right - about the caregiving spouses do and cannot claim.

i was living with family and helping with caregiving on an almost full time basis, but because I was a "family member living in the home" I was not eligible to be Paid for caregiving.

once I rented a tiny bachelor apt and had to pay out rent - I was now able to be Paid.
kind of defeated  the purpose of being there to caregive and yet not be able to get income,, the other solution was for my family to face exhaustion and handle things alone.

yes CCAC offered in home care...a few lousy hours a week, often sending a new person who had no clue who they were visiting - and my family member didn't trust strangers and had to become friends and feel safe with the workers...

nothing about caregiving is easy as you all know and have your own stories.

the biggest Fail is that our sick and vulnerable family members are "let down" and our pleas to get support are not heard.

yes there are times as when xenia, your husband john was no longer safe for you to be with at home.  Yes it is painful to say No, I cannot do this any more.

your thread of conversation was the first thing I read today.
keep it going.
we do need better support and benefits  from our government.
family caregivers are a forgotten, unappreciated and taken advantage of group.
we all do it out of Love, and we get no appreciation or break from the government for it.
you have my support 👍
natR 
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Reply by oldbat
02 Mar 2015, 6:51 PM

Hello Xenia, Dar64 and all you other under-appreciated and out-of-pocket care-givers,

I'm with you.  100%!  I agree that we should start a petition, but have no idea of how to go about that.  Suggestions?

It might look like I've had an easy ride because Karl is in long-term care.  Not so.  I am handicapped and his sole care-giver.  His daughters opted out, almost from day one and I have no family of my own.   So, while I don't have to prepare meals or look after him physically, I have all the other little and big chores and responsibilities.  You know just what I mean.

I have had to fight to get two hours of care a week.  Nobody helps me with paper-work, medical and dental appointments, banking, tax, etc., etc.  I pay for everything that is not government-supported out of my own measly pension.  Have been to two movies in three years and don't have the time or energy to do anything "fun", as my social worker is always suggesting!  How?  I have to take Wheel Trans everywhere , so trying to meet a friend for lunch or whatever is a nightmare of scheduling.

Sorry for the moan!!  Karl called at 8 this morning to say his ride to the Aphasia Institute hadn't showed up.  Then disappeared while I tried to sort it out.  Aaaaargh!

O.K.  Enough!  I'm ready to join the fray!  Anyone got a plan?????

oldbat - who's getting older by the minute!
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Reply by Dar64
03 Mar 2015, 12:52 AM

I just wrote to W5 on CTV..


What's your story?:


On Fri. Dec. 13,2013 my husband and I were told that he had stage 4 lung cancer, my husband was terminally ill. Sunday Dec. 15, 2013 the biopsy was done and confirmed what they had said. On Dec. 18, 2013 I drove my husband to Newmarket Cancer Center where he was tattooed, on Dec. 20th Radiation began. CCAC was contacted to come into our home. During my husbands illness I have had to deal with Nurses who refused to call my husbands Doctor for him and each time my husband ended up in the hospital. I have had to deal with Nurses on call whom when you call they say they are too tied to come out?? Yet this is their job, they get paid for this!! On Dec. 18th 2014 i called for a nurse as my husband was making some odd noises, and seemed confused. The nurse came argued with our daughter, said my husband is making us look like liars, told us that my husband just had a UTI and needed some good bacteria in his system, to give him yogurt, i did just that. However after the nurse left our daughter said Mom that's not right and she called for an ambulance around 7:15ish, at 11:25 Dec 18th 2014 my husband passed away, so much for that UTI!!!! I invite you to take a look at some other stories on the Canadian Virtual Hospice site, i am not alone in the way our country cares for the terminally ill and dying. Do you know how much help our government gives to help families care for their own? Nothing, do you know how much money families save the government by taking care of their own? Thousands, Yet because i am a wife living with my spouse, caring for him, advocating for him, fighting for his very human rights i am not entitled for the caregivers amount on income tax. My husband turned nocturnal during his last few months of life. This country sure is messed up, we have billions of dollars to help other countries, yet nothing for our own. Whatever happened to charity begins at home. Some branches of our trees go way back, helping to establish this great country, i am sure those ancestors are turning in their grave after all they did and sacrificed for Canada only to see now how their offspring are being treated. I am not saying we shouldn't help others, but i truly think its about time the government brings our own first. Things truly need to be fixed here.


I invited them to see some of our stories here!!

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Reply by oldbat
03 Mar 2015, 1:09 AM

Good move, Dar 64.  How do we get in touch with W5?  Maybe if a whole crew of us decided to do just that someone - anyone - would respond and we'd get air time.  Do you suppose any of those clowns in Ottawa watch TV?  I suspect only when they're on it!

I agree with you about aid to other countries when so many of us are struggling so hard here.  When Karl was transferred to his LTC home he was allowed THREE hours of speech therapy.  We got lucky.  The therapist really bonded with us and  gave us extra time each session, in addition to an extra session.  I believe the people - well, some of them - actually working in the health `care`section are as pissed off as those of us who need the help.  There was a letter in the Star today from Doris Grimspun, Head of the Nursing Association here in Ontario.  She was calling  out the local - and federal - governments on the lack of funding for palliative and hospice care, particularly in view of the Supreme Court`s recent ruling on assisted suicide.

Just saying!

old bat
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Reply by Xenia
03 Mar 2015, 8:15 PM

Good Morning Old Bat and D64

Good on you both.  Today I am under the weather, guess the sore arms etc was more than needing the hot tub and pool exercise.  Guess I have the cold and whatever.

Another spot to venture in is Kathy Tomlioson on GO PUBLIC she is a very good reporter on CBC.  Look her up on google and see her reports.

Took time out from the couch to read the messages, now I saunter back to the blankets and tea with lemon.  Hope you all are well and not cathing this infamous bug.

Xenia 
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