End of Life Stuff

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JennifersHope

New member
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
 
J

JennifersHope

New member
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
 
J

JennifersHope

New member
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
 
A

Allie

New member
this stuff is so so so important. Ry and I always had this talked out, about how he wanted to die at home, how he wanted to be buried, etc. We used the 5 wishes document, which I think is the best living will on the market today. Your doctors are being assholes, if you want a DNR, you can get a DNR, just ask for a social worker. Ry had it written that if he was in a car accident or something similar, they could revive him, but if it was CF related at all, let him go.

You have to burden someone with the info, sorry to tell you. But it should be done asap.

Here's the 5 wishes document information: <a target=_blank class=ftalternatingbarlinklarge href="http://www.agingwithdignity.org/5wishes.html">5 Wishes</a>
 
A

Allie

New member
this stuff is so so so important. Ry and I always had this talked out, about how he wanted to die at home, how he wanted to be buried, etc. We used the 5 wishes document, which I think is the best living will on the market today. Your doctors are being assholes, if you want a DNR, you can get a DNR, just ask for a social worker. Ry had it written that if he was in a car accident or something similar, they could revive him, but if it was CF related at all, let him go.

You have to burden someone with the info, sorry to tell you. But it should be done asap.

Here's the 5 wishes document information: <a target=_blank class=ftalternatingbarlinklarge href="http://www.agingwithdignity.org/5wishes.html">5 Wishes</a>
 
A

Allie

New member
this stuff is so so so important. Ry and I always had this talked out, about how he wanted to die at home, how he wanted to be buried, etc. We used the 5 wishes document, which I think is the best living will on the market today. Your doctors are being assholes, if you want a DNR, you can get a DNR, just ask for a social worker. Ry had it written that if he was in a car accident or something similar, they could revive him, but if it was CF related at all, let him go.

You have to burden someone with the info, sorry to tell you. But it should be done asap.

Here's the 5 wishes document information: <a target=_blank class=ftalternatingbarlinklarge href="http://www.agingwithdignity.org/5wishes.html">5 Wishes</a>
 
A

Allisa35

Member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>


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.


Well, I don't have anything done. I have mentioned it to my husband before, but we haven't done anything about it yet. I just wanted to mention about the DNR that I would check with someone else besides your dr. if I were you. My husband is an emt and I know there have been a few instances when they had a patient that had a DNR order and they couldn't touch the patient. Granted, I don't know the age/condition of the patient, but I know they are not allowed to do anything if there are DNR papers on hand. Just thought I'd mention that.
 
A

Allisa35

Member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>


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.


Well, I don't have anything done. I have mentioned it to my husband before, but we haven't done anything about it yet. I just wanted to mention about the DNR that I would check with someone else besides your dr. if I were you. My husband is an emt and I know there have been a few instances when they had a patient that had a DNR order and they couldn't touch the patient. Granted, I don't know the age/condition of the patient, but I know they are not allowed to do anything if there are DNR papers on hand. Just thought I'd mention that.
 
A

Allisa35

Member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>


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.


Well, I don't have anything done. I have mentioned it to my husband before, but we haven't done anything about it yet. I just wanted to mention about the DNR that I would check with someone else besides your dr. if I were you. My husband is an emt and I know there have been a few instances when they had a patient that had a DNR order and they couldn't touch the patient. Granted, I don't know the age/condition of the patient, but I know they are not allowed to do anything if there are DNR papers on hand. Just thought I'd mention that.
 
B

blackchameleon

New member
i dont care what happens when i die, my family can do as they please in their grief, however one thing i want to have organised is a recording of me knocking on a wooden door and saying "let me out you a**holes, ive changed my mind cmon open this lid, i cant breath in here, do you want me to suffocate? dont be stupid--- LET ME OUTTA HERE!!" it is to be placed in my coffin and a loyal friend shall hit play by remote as my coffin is being lowered into the hole in the ground and video the reaction!! of course my close family will know whats happening but no one else! cheers BC
 
B

blackchameleon

New member
i dont care what happens when i die, my family can do as they please in their grief, however one thing i want to have organised is a recording of me knocking on a wooden door and saying "let me out you a**holes, ive changed my mind cmon open this lid, i cant breath in here, do you want me to suffocate? dont be stupid--- LET ME OUTTA HERE!!" it is to be placed in my coffin and a loyal friend shall hit play by remote as my coffin is being lowered into the hole in the ground and video the reaction!! of course my close family will know whats happening but no one else! cheers BC
 
B

blackchameleon

New member
i dont care what happens when i die, my family can do as they please in their grief, however one thing i want to have organised is a recording of me knocking on a wooden door and saying "let me out you a**holes, ive changed my mind cmon open this lid, i cant breath in here, do you want me to suffocate? dont be stupid--- LET ME OUTTA HERE!!" it is to be placed in my coffin and a loyal friend shall hit play by remote as my coffin is being lowered into the hole in the ground and video the reaction!! of course my close family will know whats happening but no one else! cheers BC
 
A

anonymous

New member
If you know what you want, tell the people who will be in charge when you aren't able to be. Write it down too and tell them where the paper is. The more people in your family you tell the better - because that avoids family fights and uncertainty.

It's not gruesome or unnatural or unique to CF that folks think about these thngs all the way through and know exactly what they want down to the smallest detail. Those discussion often come up in a family when the first grandparent dies.

My duaghter (age 20 and completely healthy at that time) told me exactly what she wanted for a funeral and all then (and about dnr and vent). She just spontaneously told us - and you could tell she had thought a lot about it.
My late husband gave it lots of thought and told me and his adult kids. (Not his sisters, but then they were in denial anyway. But they did come over en massae the day of his death to help me make decisions and plan his funeral and all. I told them thanks but he had already planned it and I didn't have any decisions to make - that all we had to do was to see that happened his way. LOL. That was interesting!)
 
A

anonymous

New member
If you know what you want, tell the people who will be in charge when you aren't able to be. Write it down too and tell them where the paper is. The more people in your family you tell the better - because that avoids family fights and uncertainty.

It's not gruesome or unnatural or unique to CF that folks think about these thngs all the way through and know exactly what they want down to the smallest detail. Those discussion often come up in a family when the first grandparent dies.

My duaghter (age 20 and completely healthy at that time) told me exactly what she wanted for a funeral and all then (and about dnr and vent). She just spontaneously told us - and you could tell she had thought a lot about it.
My late husband gave it lots of thought and told me and his adult kids. (Not his sisters, but then they were in denial anyway. But they did come over en massae the day of his death to help me make decisions and plan his funeral and all. I told them thanks but he had already planned it and I didn't have any decisions to make - that all we had to do was to see that happened his way. LOL. That was interesting!)
 
A

anonymous

New member
If you know what you want, tell the people who will be in charge when you aren't able to be. Write it down too and tell them where the paper is. The more people in your family you tell the better - because that avoids family fights and uncertainty.

It's not gruesome or unnatural or unique to CF that folks think about these thngs all the way through and know exactly what they want down to the smallest detail. Those discussion often come up in a family when the first grandparent dies.

My duaghter (age 20 and completely healthy at that time) told me exactly what she wanted for a funeral and all then (and about dnr and vent). She just spontaneously told us - and you could tell she had thought a lot about it.
My late husband gave it lots of thought and told me and his adult kids. (Not his sisters, but then they were in denial anyway. But they did come over en massae the day of his death to help me make decisions and plan his funeral and all. I told them thanks but he had already planned it and I didn't have any decisions to make - that all we had to do was to see that happened his way. LOL. That was interesting!)
 
A

anonymous

New member
Jen, that last anon was me, LisaV.
and, hon, it would not be a burden that you would be putting on someone - but an honor. And actually if you did die or get so sick that decisions needed to be made by talking to them and letting them know what you want you would actually be doing them a favor . It is hard enough to have the responsibility to make these decisions for a loved one with the talks and the papers (you've read the posts up here where people agonize about if they are doing what they're loved one would want) , but without the talks and the paper it would be really awful.
 
A

anonymous

New member
Jen, that last anon was me, LisaV.
and, hon, it would not be a burden that you would be putting on someone - but an honor. And actually if you did die or get so sick that decisions needed to be made by talking to them and letting them know what you want you would actually be doing them a favor . It is hard enough to have the responsibility to make these decisions for a loved one with the talks and the papers (you've read the posts up here where people agonize about if they are doing what they're loved one would want) , but without the talks and the paper it would be really awful.
 
A

anonymous

New member
Jen, that last anon was me, LisaV.
and, hon, it would not be a burden that you would be putting on someone - but an honor. And actually if you did die or get so sick that decisions needed to be made by talking to them and letting them know what you want you would actually be doing them a favor . It is hard enough to have the responsibility to make these decisions for a loved one with the talks and the papers (you've read the posts up here where people agonize about if they are doing what they're loved one would want) , but without the talks and the paper it would be really awful.
 
C

CowTown

New member
Jennifer, everytime I go to clinic the social worker always asks me if I have a DNR (or a will, I don't know what they're called right now). Do you have a regular social worker as part of your CF team?
 
C

CowTown

New member
Jennifer, everytime I go to clinic the social worker always asks me if I have a DNR (or a will, I don't know what they're called right now). Do you have a regular social worker as part of your CF team?
 
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