Who has done a DNR

[GlenBrittle]

I am mulling over so many ways to plan for my future. I know its a very hard subject to discuss, but it needs to be done.

Quality of life and the Quality of Wanda's life are paramount.

I would like to entertain the idea of having a Vent installed if I am still able to communicate, whether verbally or by mechanical means. But , the vent seems to cancel a DNR because its already there.

Also , a Vent will be too overwhelming to Wanda to handle. We are looking to ask for inhouse assistance , but as services in my area are experiencing budget cuts , its not looking so good.

Can you make a DNR with options ? By this I mean creating a roadmap of question and directions.

example:
Before this moment of distress , was I locked in?
- Yes, I was locked in - then DNR .
- No , I was still moving and communicating and will be after this - save my ass.

etc etc

I want to plan my wishes so that hopefully no-one else will have to make a decision.

I welcome ALL FEEDBACK

Glen

 

[thelma313]

My dad made a DNR back in June when he knew he was already advanced enough in his progression to know that he did not want to be locked in and didn't want to be dependent on my mom so much. Yes it is a very hard subject to broach. I am starting to tear up already...

I don't know anything about options on the DNR but I don't see why not. It's a living will so I am assuming, like any other will, you could have specific wishes.

I will say this though. Glen, you are a true hero, a very brave man and a wonderful friend and it breaks my heart that you even have to think of these things.

All my best to you and Wanda...
xo Rosella

 

[DgtofTNfan]

Do the regulations in Canada provide any restrictions for residents in regards to DNR or Advanced Directives?

I am thinking from your post of 2 different things.

A DNR order/document is for “Do Not Resuscitate” for cardiopulmonary measures in the case of an acute crisis and I picture this as a scenario where the ambulance has been called to the home, a person is in the emergency room or in the hospital room and questions arise on whether to escalate care or not. A DNR stops the specified immediate treatment.

A Living Will or Advanced Directive is the document one would use to flow chart so to speak their wishes for care. I think a person can specify whatever they wish. It is a directive for your healthcare surrogate (or primary decision maker if not you) and your doctor(s) to use at the time when a decision needs to be made on what to do next. A scenario in my mind is when the doc says Dana, your body is having trouble beating this pneumonia on its own. We can put you on the ventilator for your body to rest and heal from this infection but this disease has taken its toll and most likely we will not be able to wean you off of the vent. After a Q & A session and soul searching Dana or the surrogate decides how to proceed based on what Dana has discussed with her family or written in her Advanced Directive.

I think the key is to ensure the person (if not you) that will be addressed by the medical professionals knows your wishes as I truly believe if/when it comes time to answer those damn difficult questions there is some small measure of relief in the knowing and not the pressure of the moment if that makes any sense.

These are hard things to discuss and you and your wife are very brave to address these issues head on. I work in health care and I talk about these kinds of things every day. Most people do not. It takes time to realize what you truly want and I admire you for grabbing the bull by the horns.

Respectfully,
Dana

 

[indigosd]

glen, I came across a preprinted form that is EXACTLY what you are talking about. Let me see if I can find it again and I will post it. As always great advice from Dana! Bravo for Angelo-see how he loves you xo

 

[serenade]

Glen,
My DNR is through my visiting nurses. I have a DNR form signed by me!
I also have a living will that outlines that no feeding tube or vent for me, I have written in my specific request of requesting comfort drugs and nothing else. Also signed by me and 2 witnesses.
I have a DNR because if anything happens that I am no longer breathing I want left alone, I am not breathing for a reason!
I do not want to be revived for any reason. My husband does not agree with my decision.
I do not want to stick around because he or others can't let go. He and I have discussed this and he knows that if I am revived I am going to be royally pissed off when I wake up.
I am very realistic of my situation, while I am on this earth I am going to be positive and
thankful and deal with my ALS, but when God gives me an out I am taking it.

I am happy with my life, I have accomplished what I needed to do, and I have no regrets.
Hope this does not bother anyone.
Judy

 

[indigosd]

Judy, I am applauding your candor and courage for doing what is right for you. You go girl! hugs, kay Marie

 

[pmbenb83]

Judy - I had to laugh when you said that you would be pissed when you woke up, because Eric has said the same thing.

Take care.

 

[Twinsmom]

One of the things this journey has helped me be at peace with, is that each person's journey is their own, and there is no "wrong" path. I continue to be impressed and inspired by the courage and candor that the PALS live with.

Glen, as the wife and CALS, I know that I am here to love my husband through his journey, and HE decides when he's done and what medical intervention he wants. It will be my honor and privilege to make sure those wishes are carried out...having said that-I also know it will be heartbreaking...but our vows"in sickness and in health, til death do us part" means helping my husband move on, then that's what it is. Having your wishes documented will allow her to keep her head about her when the time comes-that's how you take care of HER, while she takes care of you.

Judy-I also applaud your ability to know what you want, and be able to articulate it. As hard as it will be to let go, part of loving is letting go as well.

Peace to you all

 

[mare]

Here's my 2-cents as a retired nurse & a wife: Warning, this may be difficult to hear!

First, I don't know what is available to you in Canada.

Dana hits the nail on the head- that is, medically speaking DNR and advance directives are 2 different animals. (at least here)
DNR applies more in the hospital setting (although, if an ambulance is called it could applied as well). It says to nurses if the patient stops breathing or if the heart stops beating, do not sound the alarm- as in, the PA system blaring "CODE 9" or whatever the code is in that particular hospital. On TV, depicted as people running- then that machine & dr. saying "Clear" and then those paddles to the chest. Patient lifts up off the bed (that is NOT real, by the way).

Advance directive is when the patient has time to think ahead and decide what HE wants in any given situation. Can be very detailed and explicite. It is a roadmap for the family in the event the patient is incapcitated either mentally or physically (comatose). The ideal is that this is discussed with family so the patient's wishes are understood.

The operative word is IDEAL- it is not always the norm as time sometimes get in the way. Hence the need to start this process as soon as possible. (whatever that can mean?!?) I've seen this situation and it is hard and doesn't always work out that way.

Personally speaking, we made out advance directives BEFORE Jim's diagnosed. I have not had this conversation with him, but in my mind, things are different. We need to revisit it.
ALS changes everything!

Glen, you have read many different situations that have come up with PALS/CALS.
It is hard to come up with a solution for every scenario. You do the best you can; but, always make not only your wishes, but your reasons why, known to your wife. Then, the pressure is off her- she is not deciding, she is merely carrying out your wishes.

Certainly as a nurse, I have less fear of a trach & vent (even though things are different from 30 yrs ago). I have confidence in myself that I could handle it; I have told him that!
What I could NEVER, NEVER do is remove/ turn off the vent. Do not ask me, his wife, to do that! That is unspeakable, unbearable- for ME!

No one should ever have to be in this position to have to think about these things and make these decisions. I HATE ALS!

 

[serenade]

Melody,
Very well said! Your love and respect for your husband is very comforting. He is a lucky man to have you!

Pam,
Eric must be a man of good humor and a positive attitude, I am sure he feels very blessed to have you. Statements that I make about being pissed hopefully will be funny memories for my family when they speak of me

 

[DebbieR]

I guess I need to put my two cents in here as my dad did have a directive and I did have to make sure that things went as he wanted. My dad was a smart and realistic man so shortly after his diagnoses of ALS he sat me down and asked me to read his directives. We were able to talk about it and I mean really talk about it. Glen - he had some very specific scenerios similar to what you wrote. It really helps to talk about it as I was able to express my views to him as well and so we sorta came to an understanding. That also didn't stop me from saying have you thought about this - vent, etc. and so we would talk about it again. I am so thankful that he was open about his wishes as when the time came I was able to say with confidence - no he wouldn't want that - intubation(sp). I didn't feel like I was making the decision because it had already been made by the very person that this effects. It was a really hard topic to talk about & even now the tears are running down my face but I am so so glad that we did.

 

[joelc]

Glen, you can specify what you want. All the different scenarios you listed can be included - anything you want. Having a trache and vent does not change anything.

As far as looking after someone with a trache and vent it is a lot easier than you think. I don't know anyone who hates this kind of thing more than my wife but she laughs now thinking back, it is easy.

She will gladly call Wanda and talk to her about this. Let me know and I will get her to call.

 

[tajmom]

My neurologist and I had a really good discussion on this topic last week. Basically the gist was: discuss everything, consider everything, but know you have the right to change your mind about things ANYTIME. As he put it, with ALS you will have good days when you want to live forever and bad days when you say "screw this!" (his words...this is why I love my neurologist). So yes do an advance directive but continual communication with your caregivers is essential.

 

[irismarie]

THANKYOU all of you. i WANT Tto do the same pre-deciding, too;.
I am putting up another thread to understand more about trach and vent - what it does and does not do, need, achieve, etc; etc;;;Shall appreciate the information from those who KNOW.
Thank heaven we can discuss this.

 

[GlennaB]

i may be in the minority here. when i was first diagnosed - my immediate thoughts were no PEG and no vent. however, since my diagnosis this past july i have come to the realization that I WANT TO LIVE.......i have 2 young adult children and to be honest, i just dont want to leave them and i love life. i have done a complete 360 regarding PEG and trache. its a very personal choice for each of us....but i'm going for it. who knows what research is right around the corner!
God bless you!