We are AVM survivors, here for your support.

Advance Directives & Medical Power Of Attorney

Not to be morbid, but both of these topics seem to be relevant to us. Since many of us have bleeds that are unexpected, I think its critical that we make sure these questions are taken care of according to your wishes.

Before I had the bleed (not even aware of the impending AVM bleed), I had a MPOA completed so that my partner would have the right to make decisions were I not able to. Thankfully he was immediately available to authorize surgery to relieve the pressure on my brain. Otherwise, they would've had to track down my parents. For those of you who are single, you should consider identifying whom you want to make any decisions if you don't want it to be your next of kin.

Advance Directives aren't an easy thing to complete, but I did have peace of mind about the potential issues I might experience in my life. Since the AVM bleed, I have revisited both documents to make sure they are up to date with my wishes.

What have others done in this area? (I think its important to talk about and is a key part of managing our care.)

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Permalink Reply by Jessie and Jason Fortman on November 6, 2009 at 10:28pm

I was strongly recommended to file a MPOA and an Advance Directive, so I did. I found an attorney to do this for me because of my situation. I have my husband as my main MPOA but my mom is also listed as a MPOA. I did it so they were both able to know about and speak freely on my care. I am hoping if the day comes that they have to take care of me or make decisions I will have made that easier for them to do together. I also hope it can alleviate some of the stress and pressure that my husband would have to go through. I guess by doing this I am ordering them to play nice!:) I am also letting them know that they both mean a lot to me and I trust them to be a part of the "team" that takes care of me!

Jake M said:

I had both my wife and mother sitting with me while filling out paperwork at the hospital a week before my surgery. Among the huge pile of documents that I had to sign regarding anestheics, procedures and so on, they had a few documents that essentially covered all of the topics that people have been discussing on this page. Being in Newport Beach, California, I have a feeling that the hospital REALLY wants to make sure everything is situated before starting any major surgery as they are dealing with some really heavy-hitters in the legal and financial realm.

The one thing I districntly remember about completing the paperwork regarding MPOA. I turned and looked at them and said, "OK, since Erin (my wife) is legally the new boss, I am going to put down her name, but I want the two of you, and dad, to agree on anything that may come up because I want you to play nice!" They promised me that they would and I was fortunate enough that it never became an issue.

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Permalink Reply by Tina on November 18, 2009 at 9:37pm

My husband and I have been married for 17 years and he has not had AVM bleed and I am guessing that a AVM bleed is where the person has bleeding on the brain right? Is there any certain form that you fill out or do you go to his Neurologist.

Thanks
Tina

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Permalink Reply by Tori W. on July 31, 2010 at 7:10pm

Just an FYI - in some states you can simply download the Advance Directives forms and fill them out. Just do a Google search with the search terms 'Advance Directives' and the name of the state you live in. I don't know if all states in the US allow this, but I believe many do. I live in New Mexico and printed out my own forms a few years ago.

When I go to BNI (Barrow Neurological Institute) in Arizona for my testing and treatments I have to provide them with an Advance Directive. Patients not furnishing one of their own are required to complete an Arizona Advance Directive. I don't think there is any difference, but they're just making sure one is on file.

Personally, I think everyone who is age 18 or older should have an AD no matter their health status. It takes the burden off the shoulders of family members, and can avoid a world of bickering and troubles when family doesn't know what your wishes are and don't agree with one another about what should be done.

The MPOA is a good idea too, but I think it's especially a necessity for those of us who know we have potentially life threatening conditions.

I think it's a loving thing to do - love for oneself, and love for those who may have to make decisions for us.

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Permalink Reply by sheree d ellison on September 1, 2010 at 2:56pm

HI, BRAIN, GOOD ADVICE FOR ALL EVEN IF YOU DONT WANT TO THINK ABOUT IT, I AM BLESSED TO HAVE A SON THAT IS 36YRS OLD, I HAVE TWO OTHER CHILDREN SO AS NOT TO HAVE ANY CONFUSION AS TO WHAT TO DO , MY SON AND I DID BOTH THINGS AS WELL AS I DID A LIVING WILL, AND A WILL, SO EVERYTHING IS IN PLACE. WE HAD ALL OF THIS DONE BEFORE MY FIRST EMBO. AS WE ALL LEARN THE RISK OF EVERYTHING THAT WE HAVE TO DO IT IS GOOD TO HAVE EVERYTHING IN ORDER BEFORE WE LET THEM PUT US TO SLEEP. VERY GOOD POST THANKS

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Permalink Reply by mother on September 25, 2011 at 7:07am

you are so right but let me tell you facing these decisions is one thing but when it comes down to showing that ill person enough respect to over come your own grief and longing for them to be with you as long as possible is difficult. especially when it comes time to shut down the vent. so many questions run through you mind then and after. the what if questions. so people think carefully because even feeding tubes and ventilators are life support and questions that need to be answered adn considered at end of life terminations.