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COPD - What do I do now? 
Started by Sue B
17 Dec 2013, 9:16 PM
I have severe COPD, and right now I have severe bronchitis as well (hoping that pnumonia shot is working, cross fingers). This has lead me to wonder about things like legal matters, hospice/paliative care, wills and so on. I don't know anything about any of this and I'd really appreciate some information before it's too late.
Thanks
Sue 
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Reply by moderator | modératrice
18 Dec 2013, 3:18 AM
Hi Sue B,

I'm so glad that you found us here on Virtual Hospice. You're wise to look into these matters. We all should.

I'd like you to meet Iona and Glasslady who were sharing on these threads:
You may also wish to review some of the articles that our team has written in the Topics section of the website. 

We look forward to getting to know more about you. Do you have special plans for the holidays?
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Reply by NatR
18 Dec 2013, 4:10 PM
Hi Sue,

welcome me to the forum.

i am sorry you are suffering with bronchitis and the diagnosis of COPD.  I know others will give you insight into the legal matters.  I am not an expert, but I do have a will, and my daughter is named in a witnessed and signed POA - that in my inability to state my own wishes, that I want to be comfortable and pain free... And she will act on my behalf. But no extra-ordinary efforts are to be done to extend my life - if I have no quality of life.

The other thing to know is that like a will, a POA can be changed at any time, as often as you like, and even if you are a patient and are still able to voice your wishes - your verbal decision will be taken over a written POA.  so you are able to speak for yourself as a patient at any time you need to give your yes or no to treatment, etc.   Hope someone else will chime in on this too.

i can recommend that you check out the website bestendings.com and check out the content there.  It is very helpful To give you pointers on end of life concerns that we all have.

i also understand your fears about breathing, COPD plus bronchitis...as I do have asthma and not yet diagnosed with anything like COPD as yet, but I am waiting for an appointment to be evaluated.

so your questions and concerns are valid and of interest to me and many others who might read this post.

another thing is yo ask questions when you are being told about your treatment options.  It's our right to question all things we don't understandm and our right to say yes or no.  Health care providers are intimidating to us patients - and so though they have lots of training and expertise it is also your right to understand, be informed and active in your own treatments:) 

Again, this is my personal understanding and my opinion.  I am not a medical advisor...just another patient, person like you:) 

i sincerely hope that today you are able to rest and feel better soon.  I should check into getting the pneumonia shot myself.  I have had that once and it's not at all nice.

be encouraged, you have found a place to write your thoughts, questions, and get responses and support :)

sending you my best wishes today,
NatR
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Reply by Sue B
18 Dec 2013, 10:52 PM
I am so pleased I got answers! That may sound silly, but I've looked for information before and only gotten very vague direction, and a lot of phrases like "Oh, you shouldn't be thinking about that." Well, in my opinion I really should!
I'm going to look at these links and I am grateful for them. I had plans for the holidays but I've been advised to stay near my own hospital/ER who know me for now. So we have no plans at all.
As regards the pneumonia vaccine, I found that I actually developed symptoms afterward. They weren't too bad, but it was kind of alarming, so I thought I'd pass that on. I don't know if others have had similar experiences ar not. I only speak for myself. Thanks for you reply NatR.
Best wishes for today
Sue 
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Reply by NatR
19 Dec 2013, 12:06 AM
Hi Sue,

glad that it helped a bit to get a reply:).  
I know what you mean, we all kind of postpone making these serious decisions thinking that it won't be needed for years and years, and a lot think ( me included) if you talk about death, end of life, wills, power of attorney, that it will make something happen.  Of course that's not true and it's wise to have covered all the bases in advance.

i remember that many years ago, a very wealthy person dying and leaving a small child, the daughter of  Aristotle Onassis - can't remember her first name but regardless she died in her twenties I think, an accident, and I was surprised that her will was already made, that everything was laid out....of course when you have lots of money, you definitely should have a will made up....

and we should  each do the same, regardless of if we have nothing to leave - because after you are gone then anything can happen, fights over your property, children, money, and it simplifies things a lot - again, all my point of view.

i am sorry you are having to stay close to home, but that sounds like good advice.  It's important to have health care and facilities who know you, who are prepared to help you instantly without delay.

i didn't mention DNR - but do not resusitate orders are important too, depending on age, illness, conditions etc.  there are times when people  do not wish to be brought back to life, and there are times when people should be.  It all depends on individual choice, circumstance.

for example, if someone is at their end of life, has lived a good life, and perhaps they have dementia, a life threatening condition, and so on.  There is no way I would want to be brought back to life in that scenario, so it's important to consider.

I hope you have a good evening....
thanks for mentioning the reaction to your pneumonia shot.  I have had issues with the flu shot too, although the past few years I have been fine.  It makes you think about everything we do - trying to keep ourselves healthy -  and sometimes we have allergies, sensitivities to what ordinarily diesnt bother others.

have a good night,
NatR :)  

ps there was a series of three interviews recently on cbc national news, called  Last Right, you can google the link or find it on CBC website search

it made me think about each of us, how individual we are, how what is right for one person is not right for another -  and as nervous as I get about discussing the subject, I realize that it's important for us all to know everything we can, make our own decisions and work with our doctor And healthcare team to do what is personally best..for each of us
 
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Reply by NatR
19 Dec 2013, 12:09 AM
Hi sue
ps to the note above,
I didn't explain or add that DNR would be an issue if a person had a heart attacI and needed to be resuscitated ... 
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Reply by Sue B
19 Dec 2013, 3:53 AM
Thanks for the CBC link info. I'm sure I can find them. 
I did know about the DNR, and am starting to learn about making sure everyone is on the same page. I remember a friends husband being very upset and very drunk and insisting that staff resuscitate her. Because she hadn't gone through all the proper channels they had ot follow his whim and she lived in real agony for another three months. I doubt I'd ever be in that situation, but still...
thanks again for everything
Sue 
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Reply by KathCull_admin
20 Dec 2013, 5:23 AM
Hi Sue
 I am glad that you have raised these important questions - as NatR said these are things we should all be thinking about.

Colleen startd a thread called Advance Care Planning: What is it? which has information in written and video format. 
Do you find you usually like to read information, hear it or hear it and see it? 

Take care
Katherine

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Reply by NatR
23 Dec 2013, 12:20 AM
Hi Sue, how has your week gone?  Are you doing okay?
glad that in this forum and the members are able to offer support and connections.

i hope you are warm and cozy in the midst of one if the coldest Decembers I can remember:)
i have a heating pad and a cup of tea, listening to the wind blow outside!  (Well it's mostly my imagination, but I did just walk home in the cold:) 

have a good night and post when you have a comment or question:)
best wishes,
NatR 
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Reply by JennJilks
23 Dec 2013, 9:36 PM
Dying With Dignity has just published an excellent set of materials for Advance Care Planning.
It is organized by province, as the legal ramifications are different across Canada.
This will give you the opportunity to make your wishes known. Their work is based on personal experiences after dealing with some difficult situations.
Take care. 
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