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18 Jan 2013, 6:03 PM

Hi J.D.

Sorry for the tardy reply. What a frustrating situation. We just want to do the right thing both in terms of getting the care our loved one needs and using our health system efficiently. I wish it could be clearer about where to go, when to go and who to contact.

This must be so exhausting for your sister. And you must feel so helpless. What is going on now with your Mom? Are the emergency doctors treating her?
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18 Jan 2013, 6:06 PM

I also forgot to say thank you for posted to AdoptedSon. 

I just came across this US article about How Do You Know When to Contact Hospice? While the source is American, much of the information is relevant to Canadian hospice too. 
Colleen
 
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Reply by NatR
09 Feb 2013, 4:26 PM

Dear JD,

today I am catching up with the forum - just wondering what is happening lately with your mom.  Is your sister doing okay?  

When I read what you posted about the hospital emerg dept - I felt dismay that your mom was basically turned away - do you have the exact reason they gave?  Do they feel it is not appropriate to give transfusions?

it is so difficult when you get a green light from the hematologist and a different response from emerg physicians.

let me know how you are feeling and what the latest challenges are.

sending you best wishes today -
sincerely
NatR 
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Reply by J.D.
10 Feb 2013, 12:28 AM

Hello,
Thank you for your kind thoughts.  My sister and brother have been going through needless frustrations about the transfusions.  It turns out that the two people we were dealing with were both misinformed.  When we went to an alternate hospital, one of the staff went out of her way to get things straightened out.  I was there when my sister tried to explain to the misinformed employee that she was wrong and her errors caused us great pain (and I can say that it was in a very respectful quiet manner) .  The employee was rude & arrogant.  We will be writing to the hospital's director in an attempt to ensure that no other families have to endure such treatment.   

Meanwhile, my mother has had 4 transfusions at 4 or 5 week intervals.  Perhaps we will be doing this for some time - no one knows.

One thing you may want to share with others is that we had months of frustration so it is wise to record each event as it happens.  Once we summarized how things roled out, we were able to get a clearer picture as to where the errors occurred so we will be able to explain it in a coherent manner.

Sincerely,
JD
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Reply by NatR
10 Feb 2013, 1:17 AM

Dear JD,

so glad to hear your update and very pleased that you and your sister followed through on dealing with the attitude and staff issues

its difficult enough to make decisions without also dealing with rudeness and lack of information, understanding

glad to hear that together as a family you have forged a trail into patient rights, awareness and yes keeping documentation.

your experience shared with forum readers is invaluable. 

My thoughts to you and your family as you continue  this journey with your mom.
sending you hugs from my corner of the forum to yours.

good evening
NatR 
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