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Reply by Springday
29 Jul 2013, 4:31 AM

Thank you for your feedback :)
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Reply by eKIM
30 Jul 2013, 3:00 AM

In my post I said, "Our hospice has 6 nursing/PSW staff for 10 residents."  I should have said , "Our hospice has 3 nursing/PSW staff for 10 residents per shift.
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Reply by Springday
04 Aug 2013, 5:37 AM

thank you for your response and I have been persistent with speaking up and advocating for mom and now finally feeling heard...it is a relief to know that the staff are now all communicating and i feel confident that they have mom's best interest at heart.
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Reply by NatR
04 Aug 2013, 2:17 PM

Good morning Springday,

that is encouraging news indeed - so glad to here you feel better and your mom is getting the team approach she needs

now its one less thing on your mind - appreciate you letting the forum know!

have a good day and best wishes 
NatR 
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Reply by KathCull_admin
17 Jan 2016, 5:28 AM

The Canadian Hospice and Palliative Care Association defines hospice palliative care as “care aimed at relief of suffering and improving the quality of life for persons who are living with or dying from advanced illness or are bereaved.


What does hospice and palliative care mean to you?

Katherine 


 

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Reply by Kirstie
17 Jan 2016, 2:18 PM

The words palliative care cause me a lot of anguish.  Gord was in palliative care for exactly one month.  His physical pain was controlled, but that was the extent of his care.  Did not have his temperature checked, blood pressure, blood tests, not draining his ascites, nothing - not once.  He was suffering a lot of anxiety, and told the doctors every day.  I tried to help, I was there every day for 1:00 p.m. (after work) until around 11:00 p.m. at night, and the whole weekend (day and night).  I asked if he could get some conselling to help him, and I was told point blank that there was nothing offered for "people in his condition".  All they did was up his anti-anxiety meds, and keep him pretty knocked out.  He did not want that - he said he only had limited time and he did not want to sleep it away - he wanted to be there for his family.  I was also afraid of what all the meds were doing to his liver,  many were not recommended for patients with liver problems, he had mets to the liver, and that is what would ultimetly be his demise.  They said that at his stage, it did not really matter.  Yes, he was going to die, but did they have to perhaps push him into the grave faster?  That extra time would have been so precious to us.  After three weeks of his anxiety increasing, even with the drugs, they finally relented and ordered a Psych consultation.  I was so releaved when the doctor came.   She spoke with him for 5 minutes, asked him why he was anxious, AND PRESCRIBED MORE MEDS!!! I was floored - 5 minutes!  I though palliative care treated the whole patient - not just pump him full of meds,  When he finally died (with two nurses and I in the room) they did not even check his heartbeat until 8.5 hours later.  They just left me in the room with his body, with his eyes open.  It was an awful way for someone spend the last month of life.  He deserved better.  I am sure that is not the norm, but I will never put anyone else in palliative care.
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Reply by NatR
17 Jan 2016, 2:36 PM

Hello Kirstie,

 What a horrible way to treat someone in a place where the whole idea is to make the person feel comforted, and have as good a quality of life as possible....right to the last 

we exprct so much more from our health system and we should get it.

we need to keep making everyone aware of the need for more and better care for our loved ones.
keep talking about it, keep working toward better situations...your story is valuable.
dont be silent....be a voice ;)
sending you best wishes,
natR  
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Reply by Kirstie
24 Jan 2016, 2:05 PM

I tried.  I spoke to his doctor many times while Gord was in palliative care.  I amso arranged a meeting with the same doctor a week after he passed - I beeded to get some things off my chest and hopefully get some answers.  The doctor met me in the lobby of the hospital, and did not take me to his office - we just sat down right in the lobby, along with about two hundred other people.  No exavtly the place to air my concerns.  I did it anyway, and he brushed me off saying that I don;t understand how things work, I was not a physician.   No I am not, but I knew my husband way better than someone who had met him only a month before his passing.  I knew how much anxiety he was in, and I knew how much the anxiety and the drugs changed him.I also know what dosages are recommended for certain drugs, even in palliative care (I did my research and asked other doctors) and I know that they seriously overdosed him. (more than quadrupled the highest dosage suggested).  And he did die from the drugs - you do not go into respiratory despression seconds after you are given a dosage of hydromorphine if the cancer is what killed you.  Yes, he would have died anyway.   But we had been told numerous times that he would eventually drift off into a coma (due to the liver no longer purifying his blood) and then die.  This would have been so much better than to watch him struggling for breath, asking for oxygen, being refused, and being told by two nurses to calm down, it was just another anxity attack. And the look in his eyes when the seizures from lack of oxygen atarted haunts me.  The doctor told me I was seeing what I wanted to see, I wanted to blame something other than cancer for his death.  Really?!!?!!?!!  I think the way he was treated and the way I was treated afterwards made  terribly difficult situation even harder - it even made me question my sanity.
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Reply by NatR
24 Jan 2016, 2:26 PM

Kirstie 
my heart goes out to you
what a horrific story and how rudely you were both treated
the doctor should have seen you in his office - he certainly should have given you th opportunity to air your thoughts and concerns 

for you and anyone who is able to listen to Cbc Radio this afternoon at 4 pm I believe - to Cross Country Checkup / the topic is palliative and end of life care in Canada

hope everyone gets a chance to listen and even call in and give your thoughts

end of life should be comfortable painfree and have loved ones there - each one able to see and support this important stage of life

bablies are born into a joyous and celebrated entry into this world - we should get the same dignity love and comfort at the end of life - last wishes granted, pets able to visit and be cuddled - pain free and with oxygen and anything that will decrease anxiety and pain.

we are on the brink of change
be the voice for your own end of life and express your feelings about the present care given

  Hope that you know your story is heard here and we need to spread the story to the rest of the country.
sending my thoughts your way
you and your partner deserved better
never stop fighting to be heard
best wishes
NatR 😘 
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Reply by NatR
24 Jan 2016, 2:51 PM

Update to Kirstie and anyone that read about CBC Cross country checkup program.  Today they are discussing the tragedy in La Loche Saskatchewan.  Future episode will be on palliative care...will try and give you heads up :) 
thanks
NatR  
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