Living Will ???
AnonymousFebruary 12, 2010 at 2:00 am
What is a fair amount of time for GBSers to have in a living will…How long should I be on life support before the plug is pulled ? I am thinking it would depend on our age at the time. I think maybe 3 or 4 months for someone who is over 50 or maybe 60. I think if we, GBSers, end up on life support again at that age…well, we will never have much of a life after such trauma anyway, so they may as well pull the plug. Let me know what you think of this time limit…Please. I just don’t want my family to be bothered with me for a real long length of time.
AnonymousFebruary 12, 2010 at 11:53 am
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
AnonymousFebruary 12, 2010 at 4:46 pm
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.
AnonymousFebruary 13, 2010 at 5:56 pm
Erica, you poor child you ! You have been thru the wringer for sure. It sounds like you are having a fun filled, happy life now. Great for the 4.0 !!! God’s best for the rest of your life.
My thinking was that someone who had GBS 15 or 20 years ago and still is disabled, unable to work and maybe 60 years old. Well, if they got GBS again at age 60 and was on vent for a good length of time, I don’t think they would have much of a life, what short time maybe left for them. Why wait for a year on the vent and put the family thru all of that. Jeff, my thinking, like yours, is just about 3 months will be long enough for me. I am gonna make a living will, I should have already had one, and was wanting some input on this subject before I had mine made out. I will wait for a few more replies before I decide the time for me.
AnonymousFebruary 13, 2010 at 8:08 pm
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!
AnonymousFebruary 14, 2010 at 6:24 pm
Homeagain, watching some of the late stage Alzheizmers patients will surely show us and get us thinking about not wanting to go out like that. Where will Jack the Dorkien 🙂 be when I need him.
Homeagain, I just thought of the new preacher visiting folks in the community. When he came to one house and was invited in by a nice little old lady who did not attend any church. He asked her, “Do you ever think of the here-after”? Oh yes she said,”Everytime I go into another room…I stop and think…Now what did I come in here-after”! 🙂
Thank YOU Homeagain for being so nice to offer to help a old man.
AnonymousFebruary 14, 2010 at 7:13 pm
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.
AnonymousFebruary 19, 2010 at 12:20 am
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.
AnonymousFebruary 19, 2010 at 3:49 am
Thank you so much. I keep forgetting to google something like a living will, and lots of other thing too, I suppose I am still thinking in the old days era before the computer. 🙂
Limekat, do you still have alot of pain ? I definitely will put that in my will too; that I don’t want to be in alot of pain. I told my brother a few years back when I got out of the hospital, and he knew I almost didn’t make it. I told him it would be easy to die…it is what you have to go thru to die is the bad part. Gotta get y’all will talk more tonight if nothing happens here.
AnonymousFebruary 19, 2010 at 10:24 pm
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.
AnonymousFebruary 20, 2010 at 9:04 pm
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!
AnonymousSeptember 15, 2010 at 3:13 pm
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.
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