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Reply by Xenia
24 Feb 2015, 8:51 PM

Good Morning All on CVH:

How time flies, almost two months since John;s passing and life seems to go on.  The sun comes up each day, birds are out, day turns to night and all is well with the world and I try to begin each day with a new outlook on John;s death.

Our MP wrote an article in our local newspaper on the Assisted Suicide that is now being discussed in parliament and I was shocked to see that this man seemed to know little about caring for Palliative or terminal patients.  His outlook was:Proper Care better than euthanasia"  He went on to say:"If a dying person is properly cared for and shown they are valued and loved, depression and thoughts of ending life dissipate."

No where did he mention that the care of a loved one is taking toll on the caregivers as there is so little palliative care available to persons needing this help.  This is most distressing as the Canadian Medical Association asked Parliament for more funding for pallitive care (June 2014) and our Minister of Health agreed but to date there is no funding per se.

I know this is political, however, I believe that we all must let the governments, Federal, provincial, etc know and understand the extreme need for palliative care as the need is so great.

I was reading an article on the CHPCA fact sheet-Hospice Palliative Care in Canada update March 2013 and in this report,  Role of Family and Informal Care givers the First Ladyof the USA at the time, Rosalyn Carter stated: "There are only four kinds of people in this world; those who have been caregivers, those who currently are caregivers; those who will be caregivers and those who will need caregivers"

What a statement and in my grief for John and all those on CVH I thought how astute that this is the past, present and future of caregiving and the need for more interest paid to palliative care and dying.  I for one had not faced the reality that my husband, loved one or friend may need this help.  I was certain that the Medical system would be there for my family and not have to actually fight to get a bed in a care home when I was no longer able to care for my loved one. 

In my grief I remember sadly the last month of John's life and the problem of trying to get John into a carehome and to be rebuffed by the Social Workers in hospital telling me it was easier to get him into a carefacility if he came home and was medicated rather than putting him into a temporary care facility.  What a choice!  Our doctor helped us immensaly telling us: No you cannot take him home as you can no longer look after John and it is not safe for you"  John had started to wander, had fallen  and would want to leave the condo.

I still weep for John, I also am happy, now that is a mixture of words, but Happy that John was able to pass away within a day when he was in hospital and had a stroke after his falls.  He was able to leave this world and not have to be bed ridden in a vegetative state.  With this in mind I feel I must become part of society who actively takes part in asking for more palliative care for patients who are discharged from hospital as beds are needed for acute patients and families are forced to become caregivers under these circumstances.

I may sound political, perhaps, however having had wonderful Palliative Care nurses caring for John for the past 18 months of his illness and knowing how short they are of these nurses, I must do something and not sit idely by when others are in need of palliative care.

Take care all.

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Reply by oldbat
24 Feb 2015, 9:05 PM

Xenia - I'm just headed out but couldn't miss giving you a "thumbs up" on your latest post.  You really are an amazing woman.  Kind.  Courageous.  And aware.  You're a national treasure.  Don't ever change.

You go girl!  You rock!


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Reply by NatR
24 Feb 2015, 9:06 PM

Good morning Xenia!

you go Girl!!
you Rock!  You have been through so much and now you are girding up to fight for end of life care!
i applaud you!!
i wish you great success in raising awareness - it starts with you and extends onward to many!

keep us posted
you have my support.
i send you best wishes and hugs from Ontario;)
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Reply by oldbat
24 Feb 2015, 9:09 PM

LOL!  Two minds with but a single thought!  You've got yourself your own cheering squad Xenia!


oldbat - climbing on to her broomstick!
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Reply by Nouce
25 Feb 2015, 2:31 AM

I salute you, Xenia! Take up the mantle and show us the way.




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Reply by frustrated
25 Feb 2015, 8:31 PM

Thank you NatR for your comments. I also agree wit Xenia that there needs to be a lot more Goverment aid for elderly patients. I had to find a private care center for my husband. The health Dept. said it would be about a year before they could process his file and give me any aid. Foturantely, I can down size the house and will be a ble to make it. But it shouldn't take a year to get goverment funding for long term care.
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Reply by Xenia
26 Feb 2015, 4:12 AM

Hello All:

Guess the pen is mighter than the sword.  My letter to the local paper regarding our member of paliament and euthanasia has been printed.

Friends contacted me and alerted me to this.  Whoppee, now lets see if anyone else will reply.  

Take care

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Reply by NatR
26 Feb 2015, 5:26 PM

That's great Xenia...
i have a feeling you will be busy...your personal story matters to others.
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Reply by oldbat
27 Feb 2015, 5:13 AM

Congratulations Xenia.  You are indeed a force to be reckoned with!

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Reply by Xenia
01 Mar 2015, 3:27 AM

Good Afternoon All:

To-day is a gloroius day in B.C., on the valley it is 9 degrees, sun is shining and it is a brisk day.  Gone for to-day the rain and fog.  I am waiting for my daughter, strange, I used to say Our daughter, driving in from Vancouver to spend the weekend with me.

The Girls came back from their trip to the Galapagos (spelling) both with colds and probably the 'flu.  They enjoyed themselves but came back more aware of the hardship of the lives of people living in Ecuador.  They appreicate Canada so much more and are looking forward to traveling to other countries while they are still young enogh to bear the time changes, etc

My challenges of having letters printed in the Letters to the Editor took a turn for the better on Tuesday, 24th . I was fortunate enough to have it printed with the headline to the letter: "Little evidence of palliative care funding".  I now await a reply from our MP. Mr. Warwa and what he has to say since he stated as in my last message : If a dying person is properly cared for and shown they are valued and loved, depression and thoughts of ending their life dissapate."  Will let you know if he replies as I did forward my letter to his parliament office and his office here in my city.

Since I started writing about palliative care I went into Goggle, etc and found some very interesting articles:  One especially that all on CVH should read.  It is :Rona Ambose says Canada needs better palliative care-Politics-CBC News. 

In this exclusive interview, health minister talks about end-of life and palliative care with CBS News.

Quoting from the article by Susan Lunn, CBCNews posted: Sep.15,2014 AM last updated Sep 15, 2014 1044 PM ET>

"Federal Minister Rona Ambrose says Canada has to do better when caring for people who are dying - and she wants to make that a prioirity"  Ambrose sat down with CBC News recently in an exclusive interview and spoke of her first-hand experience finding the best care for family members.  "I know, in my family, my grandma had really good palliative care.  And that made a huge difference to our family." Ambrose said. "

Isn't this refreshing that Ms. Ambrose found "really good palliative care for her grandma"  I am glad for her grandma and the family yet she states she had to find the palliative care.

I would think that after this experience of having to find  pallitive care she would follow through on her promise to have better look at funding palliative care. Find is the operative word.  Why in this day where we pride ourselves on the Medical care for patients we still need to FIND palliative care.  I would think it would be a given that when a patient is nearing death and needs palliative care it would be available not go searching as many of had to do or take home our loved one and care for them until we could FIND palliative care or end of life care in a facility in our home town. No one should have to think of selling their home, as one of our CVH noted, to get palliative care since private care is so expensive and there are few Government funded palliative care facilities.

My next few days will be writing letters to Ms. Ambrose, Minister of Health, quoting her and also writing to our MPS, MLAs, etc.  I may be a voice in the wilderness but I do think I will a pain to them however it may be that all who have had to FIND palliative care will become more vocal and contact Ms Ambrose,etc and let her know of your experience with no palliative care, caring for a loved one at home and needing help from a palliative care nurse and few being available.

I am still grieving for John, I talk to him and realize he is not here but it is getting somewhat easier.  I was at Walmart a few days ago and there is a lady who has the job of putting bread on the shelves.  I usually talk to her and her husband when I see them so yesterday I ran into her and she asked me where I was as she had not seen me for a long time.  I tried to be strong but the tears came when I told her John had died.  She was so consoling and kind.  You never know who is kind and understanding, even a person I rarely see was kind enough to express her sympathy and understand my loss.

Enough of my politicing, etc, daughter just buzzed and wants in so I have to sign off.

Take care and if you can read the article I wrote about.


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