Living Will ???

Hi Drummer: What a hard question! There are so many variables and so many feelings involved. I can only tell you what I decided and that was three months. I thought that was enough time to see if I would recover and after that I did not want to financially burden my family. It is a very individual decision but that is what I decided. Jeff

Well…I am very glad no one pulled the plug on me (I was on a vent for 4 months and I was 38). My friend is also glad – he had GBS and was 49 at the time..he was on a vent for 11 months.

I kinda think my mom was thinking about pulling the old plug on me but she knew how mad I would be! The doctors called me a non-responsive quadrapalegic..said there was no hope. I was told to “let go”..it “was no one’s fault”….”get my finances in order”.

I had lung surgery on the vent..my bowels stopped working..feeding tube didn’t even work at one point for me…

But here I sit…I play tennis (not well)..I even snow skied prior to my recent onset of autonomic dysfunction. I got a masters degree with a 4.0 GPA.

I am so glad someone decided to keep giving me a chance..and I really wanted to live! Please hang onto some hope..I never thought I would recover like I have..there are many miracles.
Erika

Have verbally experessed to my DH what I think I want? But putting it into words sounds…well, so FINAL?
I agree about the 3 months tho…but also I’d include some aspects about hope for recovering SOME sorts of self function. First off mental function, secondly ability to communicate and do simple body functions.
I say this after serving ‘time’ in a ‘rehab facility’ for several weeks. One where there was an entire floor for those with Alzheimers? I could not at that time [due to a major post-surgery recovery] do much to take care of myself AT ALL! There were times? When depression of setting and situation were well…need I say more?
THANK YOU For bringing this up! It’s good to get a solid shove to do the right things about what you would want done, while you can be clear on what you think you want done! I believe that makes sense, tho it’s convoluted, like law or like medicine.
Keeping things clear for you and your family tho, does make all decisions easier! Both in the short and long term. It’s a hard thing to face….one’s mortality? Life, and quality of life should be stated outright as YOUR choices and stated clearly. How one does that varies from state to state tho. IF you can’t afford it? I’m sure there are sources near your that provide help. If you can’t find them? Let me know…
Hope and heart and good things!

Hi Drummer,

I don’t yet have a living will. However, I’ve expressed to my family that should any tragedy befall me, GBS relapse or any other trauma, to add “do not resuscitate”. I’ve also asked that they not keep me on life support for an unspecified length of time (I haven’t yet figured out how to determine the time frame). Of course, I doubt they will do as I request, so I really need to put something in writing.

Take care,

Tina

I have expressed what I want and don’t want in my Living Will. Its several pages long and I did lots of research looking for what might I consider my time to go so to speak.Have seen so many family members in angst trying to figure out what to do with a critically ill/dying parent/relative.
There are several excellent websites that other realistic options/ways to write your wishes to be followed when you aren’t able to voice them yourself.
Relieves family from having to decide.
I especially was specific I didn’t want to be in pain and if treated for my pain may hasten my death so be it.
I’ve been in the ICU with doctors saying I only had a few hours left to live. Against all odds I lived. It did give a whole new outlook on life.

I was given quite a lot of pain meds when in ICU.The illness I had was very painful. The staff reduced the amount before the pain truly abated.I didn’t want this to happen again.
I wrote my Living Will after this experience.
It was later I developed CIDP and because of it now on pain meds
Sometimes doctors are afraid to increase pain medication past certain limits. I felt this needed to be written in for my benefit whether I was critically ill and/or in Hospice.

I’ve like most, ‘put it off’ but I do have notes, ‘IF THEY ARE FINDABLE’ about what I would like ‘done or not done’ for me? Your post makes it far more clear that I can’t put it off any longer. My last ‘event’ this past summer was a biggie that had all docs going 😮 and more… Especially after they’d read my medical history. And then? My list of top notch docs in the area.
The only good thing that came out of it? IS that the ‘cats are herded’ and talking to each other…sort of.
I’ll let you all know how well my rear end has been ‘motivated’ in the near and short term future! I realize that it’s not only ME I’m looking after? IT’s my family! I want to try and keep things as simple and clean as they can be. IF that is possible? Who knows?
Hugs hope and possibilities to all!

jUST had to say there is always hope.My wife and i had talked of things and we had all paper work the way we wanted.When i came down with GBS in November 2007 she never gave up hope.Sometimes she questioned herself while i was on a vent for 7 months.10 months in 5 hospitals and rehab and always hope everyone has an advocate.We make the days count.Many blessings and hope and prayer.