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End of Life Stuff
- Thread starter JennifersHope
- Start date
princessjdc
New member
I would just tell my husband what I want, and maybe in the near future I may or may not fill out a will.
princessjdc
New member
I would just tell my husband what I want, and maybe in the near future I may or may not fill out a will.
princessjdc
New member
I would just tell my husband what I want, and maybe in the near future I may or may not fill out a will.
Hi Jenn...those issues are so emotionally loaded. Personally, I made out an advanced directive, had a family meeting and discussed what I would want in the even that things looked bleak. Right now, I live on a vent...not CF related, neuro related but it changed my Advanced directives. Everytime another life changing health issue comes about, I make it a point to update my directives. My first directives were made prior to my vent...in it, I described that if I needed prolonged life support then let me go peacefully. Maybe you could ease your family into these issues gradually. Perhaps by first addressing an advanced directive and then go from there.
Right now, I am on life support (due to the vent) , technically but fully aware and I still have my brain (maybe LOL) and can still function, so I really needed to update it. The CF diagnosis came later, so I had yet another meeting with my family. I know that there is a good chance that infections and sepsis will cause my death, my family understands that. We also discussed when to let me go, with dignity. I guess I am fortunate to have such a receptive family. I know this must be very hard for them. At this point, I am not a DNR, but that can change with a very serious infection.
They know that I will fight until I have no more fight left in me, even Superman has his limits. But for now, I am okay and plan to be around for some time more.
I hope that this has helped you Jenn...hang in there my friend. Hugs, the other Jenn <img src="i/expressions/rose.gif" border="0">
Right now, I am on life support (due to the vent) , technically but fully aware and I still have my brain (maybe LOL) and can still function, so I really needed to update it. The CF diagnosis came later, so I had yet another meeting with my family. I know that there is a good chance that infections and sepsis will cause my death, my family understands that. We also discussed when to let me go, with dignity. I guess I am fortunate to have such a receptive family. I know this must be very hard for them. At this point, I am not a DNR, but that can change with a very serious infection.
They know that I will fight until I have no more fight left in me, even Superman has his limits. But for now, I am okay and plan to be around for some time more.
I hope that this has helped you Jenn...hang in there my friend. Hugs, the other Jenn <img src="i/expressions/rose.gif" border="0">
Hi Jenn...those issues are so emotionally loaded. Personally, I made out an advanced directive, had a family meeting and discussed what I would want in the even that things looked bleak. Right now, I live on a vent...not CF related, neuro related but it changed my Advanced directives. Everytime another life changing health issue comes about, I make it a point to update my directives. My first directives were made prior to my vent...in it, I described that if I needed prolonged life support then let me go peacefully. Maybe you could ease your family into these issues gradually. Perhaps by first addressing an advanced directive and then go from there.
Right now, I am on life support (due to the vent) , technically but fully aware and I still have my brain (maybe LOL) and can still function, so I really needed to update it. The CF diagnosis came later, so I had yet another meeting with my family. I know that there is a good chance that infections and sepsis will cause my death, my family understands that. We also discussed when to let me go, with dignity. I guess I am fortunate to have such a receptive family. I know this must be very hard for them. At this point, I am not a DNR, but that can change with a very serious infection.
They know that I will fight until I have no more fight left in me, even Superman has his limits. But for now, I am okay and plan to be around for some time more.
I hope that this has helped you Jenn...hang in there my friend. Hugs, the other Jenn <img src="i/expressions/rose.gif" border="0">
Right now, I am on life support (due to the vent) , technically but fully aware and I still have my brain (maybe LOL) and can still function, so I really needed to update it. The CF diagnosis came later, so I had yet another meeting with my family. I know that there is a good chance that infections and sepsis will cause my death, my family understands that. We also discussed when to let me go, with dignity. I guess I am fortunate to have such a receptive family. I know this must be very hard for them. At this point, I am not a DNR, but that can change with a very serious infection.
They know that I will fight until I have no more fight left in me, even Superman has his limits. But for now, I am okay and plan to be around for some time more.
I hope that this has helped you Jenn...hang in there my friend. Hugs, the other Jenn <img src="i/expressions/rose.gif" border="0">
Hi Jenn...those issues are so emotionally loaded. Personally, I made out an advanced directive, had a family meeting and discussed what I would want in the even that things looked bleak. Right now, I live on a vent...not CF related, neuro related but it changed my Advanced directives. Everytime another life changing health issue comes about, I make it a point to update my directives. My first directives were made prior to my vent...in it, I described that if I needed prolonged life support then let me go peacefully. Maybe you could ease your family into these issues gradually. Perhaps by first addressing an advanced directive and then go from there.
Right now, I am on life support (due to the vent) , technically but fully aware and I still have my brain (maybe LOL) and can still function, so I really needed to update it. The CF diagnosis came later, so I had yet another meeting with my family. I know that there is a good chance that infections and sepsis will cause my death, my family understands that. We also discussed when to let me go, with dignity. I guess I am fortunate to have such a receptive family. I know this must be very hard for them. At this point, I am not a DNR, but that can change with a very serious infection.
They know that I will fight until I have no more fight left in me, even Superman has his limits. But for now, I am okay and plan to be around for some time more.
I hope that this has helped you Jenn...hang in there my friend. Hugs, the other Jenn <img src="i/expressions/rose.gif" border="0">
Right now, I am on life support (due to the vent) , technically but fully aware and I still have my brain (maybe LOL) and can still function, so I really needed to update it. The CF diagnosis came later, so I had yet another meeting with my family. I know that there is a good chance that infections and sepsis will cause my death, my family understands that. We also discussed when to let me go, with dignity. I guess I am fortunate to have such a receptive family. I know this must be very hard for them. At this point, I am not a DNR, but that can change with a very serious infection.
They know that I will fight until I have no more fight left in me, even Superman has his limits. But for now, I am okay and plan to be around for some time more.
I hope that this has helped you Jenn...hang in there my friend. Hugs, the other Jenn <img src="i/expressions/rose.gif" border="0">
Rutgersnyy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>
I was just wondering what you guys did to make your end of life wishes known. WHo you told what you wanted etc? I know their are health care proxy's and living wills to basically tell the doctor what you want as far as health goes.. But who did you tell specifically what you want and don't want done?
What about funeral arrangements.. or what you wanted done with your body.. such as open casket, closed casket.. or cremation etc? Even so much as if you were cremated, where you do and don't want your ashes.... OR what type of funeral you want.. as far as who to speak, who NOT to speak.. and the things you want said.. music played etc....
I know what I want exactly... up to and including where I want my ashes..(somewhere by my chuch) but I don't have any idea who to tell this to..I don't want to overwhelm someone, and Lord knows no one wants to talk about it with you...
I have tried to tell my doctors to please make me a DNR meaning do nothing to help me live..except medicate the heck out of me for pain and comfort but my doctor said they wont even hear something like that and that the only time a DNR Is good for is if you are very end stage in a disease or you are old and have no chance of a good quality of life....It kind of pisses me off because I should have the say in what I want like if I was to have a heart attack or something.... they would bring me back or whatever.
Anyway.. Just wondering where you put what you want or who you tell etc....
Jennifer</end quote></div>
I am too young to think of this. I am living a happy and healthy life and this thought never enters my mind. I worry about my parents and grandparents and what I will do after they are gone.
Train, say your prayers and take your vitamins(meds). I know that is what Hulk Hogan says but it is true. You can have a say in when you go.
I was just wondering what you guys did to make your end of life wishes known. WHo you told what you wanted etc? I know their are health care proxy's and living wills to basically tell the doctor what you want as far as health goes.. But who did you tell specifically what you want and don't want done?
What about funeral arrangements.. or what you wanted done with your body.. such as open casket, closed casket.. or cremation etc? Even so much as if you were cremated, where you do and don't want your ashes.... OR what type of funeral you want.. as far as who to speak, who NOT to speak.. and the things you want said.. music played etc....
I know what I want exactly... up to and including where I want my ashes..(somewhere by my chuch) but I don't have any idea who to tell this to..I don't want to overwhelm someone, and Lord knows no one wants to talk about it with you...
I have tried to tell my doctors to please make me a DNR meaning do nothing to help me live..except medicate the heck out of me for pain and comfort but my doctor said they wont even hear something like that and that the only time a DNR Is good for is if you are very end stage in a disease or you are old and have no chance of a good quality of life....It kind of pisses me off because I should have the say in what I want like if I was to have a heart attack or something.... they would bring me back or whatever.
Anyway.. Just wondering where you put what you want or who you tell etc....
Jennifer</end quote></div>
I am too young to think of this. I am living a happy and healthy life and this thought never enters my mind. I worry about my parents and grandparents and what I will do after they are gone.
Train, say your prayers and take your vitamins(meds). I know that is what Hulk Hogan says but it is true. You can have a say in when you go.
Rutgersnyy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>
I was just wondering what you guys did to make your end of life wishes known. WHo you told what you wanted etc? I know their are health care proxy's and living wills to basically tell the doctor what you want as far as health goes.. But who did you tell specifically what you want and don't want done?
What about funeral arrangements.. or what you wanted done with your body.. such as open casket, closed casket.. or cremation etc? Even so much as if you were cremated, where you do and don't want your ashes.... OR what type of funeral you want.. as far as who to speak, who NOT to speak.. and the things you want said.. music played etc....
I know what I want exactly... up to and including where I want my ashes..(somewhere by my chuch) but I don't have any idea who to tell this to..I don't want to overwhelm someone, and Lord knows no one wants to talk about it with you...
I have tried to tell my doctors to please make me a DNR meaning do nothing to help me live..except medicate the heck out of me for pain and comfort but my doctor said they wont even hear something like that and that the only time a DNR Is good for is if you are very end stage in a disease or you are old and have no chance of a good quality of life....It kind of pisses me off because I should have the say in what I want like if I was to have a heart attack or something.... they would bring me back or whatever.
Anyway.. Just wondering where you put what you want or who you tell etc....
Jennifer</end quote></div>
I am too young to think of this. I am living a happy and healthy life and this thought never enters my mind. I worry about my parents and grandparents and what I will do after they are gone.
Train, say your prayers and take your vitamins(meds). I know that is what Hulk Hogan says but it is true. You can have a say in when you go.
I was just wondering what you guys did to make your end of life wishes known. WHo you told what you wanted etc? I know their are health care proxy's and living wills to basically tell the doctor what you want as far as health goes.. But who did you tell specifically what you want and don't want done?
What about funeral arrangements.. or what you wanted done with your body.. such as open casket, closed casket.. or cremation etc? Even so much as if you were cremated, where you do and don't want your ashes.... OR what type of funeral you want.. as far as who to speak, who NOT to speak.. and the things you want said.. music played etc....
I know what I want exactly... up to and including where I want my ashes..(somewhere by my chuch) but I don't have any idea who to tell this to..I don't want to overwhelm someone, and Lord knows no one wants to talk about it with you...
I have tried to tell my doctors to please make me a DNR meaning do nothing to help me live..except medicate the heck out of me for pain and comfort but my doctor said they wont even hear something like that and that the only time a DNR Is good for is if you are very end stage in a disease or you are old and have no chance of a good quality of life....It kind of pisses me off because I should have the say in what I want like if I was to have a heart attack or something.... they would bring me back or whatever.
Anyway.. Just wondering where you put what you want or who you tell etc....
Jennifer</end quote></div>
I am too young to think of this. I am living a happy and healthy life and this thought never enters my mind. I worry about my parents and grandparents and what I will do after they are gone.
Train, say your prayers and take your vitamins(meds). I know that is what Hulk Hogan says but it is true. You can have a say in when you go.
Rutgersnyy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>
I was just wondering what you guys did to make your end of life wishes known. WHo you told what you wanted etc? I know their are health care proxy's and living wills to basically tell the doctor what you want as far as health goes.. But who did you tell specifically what you want and don't want done?
What about funeral arrangements.. or what you wanted done with your body.. such as open casket, closed casket.. or cremation etc? Even so much as if you were cremated, where you do and don't want your ashes.... OR what type of funeral you want.. as far as who to speak, who NOT to speak.. and the things you want said.. music played etc....
I know what I want exactly... up to and including where I want my ashes..(somewhere by my chuch) but I don't have any idea who to tell this to..I don't want to overwhelm someone, and Lord knows no one wants to talk about it with you...
I have tried to tell my doctors to please make me a DNR meaning do nothing to help me live..except medicate the heck out of me for pain and comfort but my doctor said they wont even hear something like that and that the only time a DNR Is good for is if you are very end stage in a disease or you are old and have no chance of a good quality of life....It kind of pisses me off because I should have the say in what I want like if I was to have a heart attack or something.... they would bring me back or whatever.
Anyway.. Just wondering where you put what you want or who you tell etc....
Jennifer</end quote></div>
I am too young to think of this. I am living a happy and healthy life and this thought never enters my mind. I worry about my parents and grandparents and what I will do after they are gone.
Train, say your prayers and take your vitamins(meds). I know that is what Hulk Hogan says but it is true. You can have a say in when you go.
I was just wondering what you guys did to make your end of life wishes known. WHo you told what you wanted etc? I know their are health care proxy's and living wills to basically tell the doctor what you want as far as health goes.. But who did you tell specifically what you want and don't want done?
What about funeral arrangements.. or what you wanted done with your body.. such as open casket, closed casket.. or cremation etc? Even so much as if you were cremated, where you do and don't want your ashes.... OR what type of funeral you want.. as far as who to speak, who NOT to speak.. and the things you want said.. music played etc....
I know what I want exactly... up to and including where I want my ashes..(somewhere by my chuch) but I don't have any idea who to tell this to..I don't want to overwhelm someone, and Lord knows no one wants to talk about it with you...
I have tried to tell my doctors to please make me a DNR meaning do nothing to help me live..except medicate the heck out of me for pain and comfort but my doctor said they wont even hear something like that and that the only time a DNR Is good for is if you are very end stage in a disease or you are old and have no chance of a good quality of life....It kind of pisses me off because I should have the say in what I want like if I was to have a heart attack or something.... they would bring me back or whatever.
Anyway.. Just wondering where you put what you want or who you tell etc....
Jennifer</end quote></div>
I am too young to think of this. I am living a happy and healthy life and this thought never enters my mind. I worry about my parents and grandparents and what I will do after they are gone.
Train, say your prayers and take your vitamins(meds). I know that is what Hulk Hogan says but it is true. You can have a say in when you go.
Emeraldmirror
New member
I always told everyone that i wanted my body donated to science when I die.. I figure it will give them an interesting cadaver (however you spell it) to look at and will really give the new doctors a perspective on CF. That or maybe they'll use it for research i'm not sure.. but either way.. it was either that or donate my organs.. but once i got older i started to realize that.. well not that many userful organs in a cfers body.. though i don't know that for a fact... but anyway.. in the sense of dnr's .. I'm not sure.. but funeral things.. if it makes my family happy then they can have a funeral.. that's fine withme.. as long as my body goes to science
Ashley 22 w/cf
Ashley 22 w/cf
Emeraldmirror
New member
I always told everyone that i wanted my body donated to science when I die.. I figure it will give them an interesting cadaver (however you spell it) to look at and will really give the new doctors a perspective on CF. That or maybe they'll use it for research i'm not sure.. but either way.. it was either that or donate my organs.. but once i got older i started to realize that.. well not that many userful organs in a cfers body.. though i don't know that for a fact... but anyway.. in the sense of dnr's .. I'm not sure.. but funeral things.. if it makes my family happy then they can have a funeral.. that's fine withme.. as long as my body goes to science
Ashley 22 w/cf
Ashley 22 w/cf
Emeraldmirror
New member
I always told everyone that i wanted my body donated to science when I die.. I figure it will give them an interesting cadaver (however you spell it) to look at and will really give the new doctors a perspective on CF. That or maybe they'll use it for research i'm not sure.. but either way.. it was either that or donate my organs.. but once i got older i started to realize that.. well not that many userful organs in a cfers body.. though i don't know that for a fact... but anyway.. in the sense of dnr's .. I'm not sure.. but funeral things.. if it makes my family happy then they can have a funeral.. that's fine withme.. as long as my body goes to science
Ashley 22 w/cf
Ashley 22 w/cf