Proxy...what to do..dysfunctional family
hey everyone,
i am having APR next week, and am now feeling much better about it (in case you read my previous posts of angst) and they would like a proxy just in case. i was the "person to notify" and the responsible person when my parents passed and needed someone there for them. My older sister, though we have had no big issue, has not even responded to me telling her I have cancer. I wrote her nicely (she is an immature person, like walking on eggshells with her emotions) and she didn't respond. My daughter has addiction issues, but she is going to be there for my surgery. Point is, I love my child, and I am hoping if anything that my being sick turns out to motivate her getting help for herself, but I would not really want to count on her. My older sister did speak with my daughter, and when my daughter reiterated my cancer diagnosis, my older sister started talking about her own car trouble, not even addressing my cancer---so, as you can see she is pretty oblivious.
I do however deeply trust my healthcare team, and I wonder how I can just make my wishes known to them. I have some casual friends, but I think the proxy is so vague, and I would not want to ask them, as even though I am the caretaking type, there are not too many folks I would want that big responsibility put on me for for them.
sorry for the long story, but I wanted to paint a picture...
i am thinking if I fill out the MOLST form with my physician, because there I can say ok, try the intubation, ressuciatation, but you get to define it on the next page as "short term." I have no reason to believe I will have trouble with the surgery, other than just one never knows with the anesthesia and all.
I have cleared up all pain concerns, and it is planned that my surgery be laparoscopic. I now have pallative care and all other services in place, and they are just working really well with me and easing my stress over this. I just trust them to do their best, and if trouble arrises I want them to give me a chance, but to stop if it came down to them seeing it as unlikely a good outcome would result. Anyone else have any thoughts on this? It seems crazy to have to have someone tell them what to do, when I have gone this whole journey so far totally by myself. That is sorta my fault, as I am pretty independent and private. But, again, I am more the caretaker giving type, and apparently my casual friends are not.
Any insights or advise is greatly appreciated. I can put my daughter as proxy, but I would want the other forms which would more clearly define my actual wishes. Proxy itself only has a little space where you say what your proxy cannot decide. I want a paper where it spells out what I want written by ME---makes sense to me!
thanks,
sharron
Comments
-
Sharron, I'm sorry you don't
Sharron, I'm sorry you don't have the family support you deserve, I'm pretty sure you can have a lawyer draw up specific orders regarding your care, but others may have better suggestions. Anyway, you have my best wishes.......................................Dave
0 -
Legal stuff
Legal stuff
Ya'know Sharron, we're probably all in the same boat (no wonder it's sinking, ehh?).
Advanced directives can be made, and most hospitals recommend filing one (I never did), and Dave's advice regarding a Lawyer is good, albeit expensive. But most hospitals also can provide free counseling for the patient if you ask for the service.
I'm assuming you're talking about directives prior to one's demise, right? What happens after we drop off the map is addressed via a Will, and is best via legal counsel.
The funeral home or crematorium you assigned ahead of time handles all the paperwork and notices... and often relates your wishes for your remains to those responsible for tossing your lovely body off the nearest bridge that they will likely do if you don't tell them not to.
"By sweetie - Splash"
Having an advocate is important, but tough to accomplish. I do not have anyone that can fit the need, or wants the responsibility. It does no good if the individual just shrugs shoulders when confronted with a possible life or death decision. (" pull the plug? gee, I dunno' ") I could swear I heard my wife ask every nurse that came in where that "plug" was... and the reason I pack an extension cord in my suitcase.
All the things we have to consider, where most healthy individuals do not. I don't know of anyone in "real life" who knows what it's like and desires to talk about it. And of course, I think that's the reason we find ourselves here on a forum with anonymous people. Having a diagnosis of cancer is an immediate and forever ongoing high anxiety issue. Those closest to us have no idea of all the thoughts and fears that can consume us at times, nor can they understand the deep loneliness we can sink into. I think we all suffer for lack of love during the time we need it most; that missing hug or passionate kiss.... the motivation to continue on... we suffer in ways that most cannot fathom.
Pop a pill and make it go away, is an answer we hear regarding the depression we may have. They don't realize that we are worried about dying; not being depressed about it doesn't solve the problem.
Ask the hospital regarding help with directives. An attorney (and even an insurance agent) is worth the $$ if it can be afforded.
Above all? Keep thinking positive. It'll help you get through the day.
Healthy wishes your way!
John
0 -
I'm sorry, I have nothing
I'm sorry, I have nothing helpful to offer. I just wanted to say that I'm so sorry you're going through this. It's very sad. I can't imagine having to go through all of this basically alone and without good support. One thing this cancer journey has shown me is how much support I have and who really cares. My husband and daughter, who is 27, have been wonderful. They had to make a decision last year when I had the blood clot and one doctor wanted them to consider not continuing to revive me. They both said no to that and here I am today. I know that they both have my back. And I have a few very close friends that would do what you need in a heartbeat. I can't imagine what I'd do without these people.
Hugs,
Jan
0 -
Hi Sharon:
A medical directive is an excellent idea. Someone to make medical decisions when you cannot do so is necessary. George had one and so do I. When George was admitted to the hospital a few days before his death I gave them the directive. How ours read was when he could not make a decision for himself, it was up to me. These are not easy decisions one has to make. As an example, they did not even give him morphine unless I said ok. The morphine was not given for pain but to ease his breathing so of course I said yes. He was in total renal failure. They offered dialysis. I asked it it could possible reverse things and was told no, not likely, so my answer to dialysis was no. The doctor then informed me that his thoughts were that I had made the right decision but they were "legally bound" to offer everything. If your daughter is somewhat unstable she is not the person to ask important questions and make the decisions. If you sister is not strong, she is not the one. You are in a tough spot but you do need to name someone if possible. I am fortunate in that my nephew is an ER doc and said yes when asked if we could add him to the directive. He came to the hospital, looked over George's medical records, and advised me yes, I had been making the right decisions. If you have a brother-in-law, nephew, niece, perhaps you could talk to them. Whoever you name has the final decision, no matter what anyone else says about it. Talk to the people at the hospital if you do not have someone and they will insure they conform to your wishes.
Hopefully you can get things worked out. This is just food for thought for the future.
Take care and hope your surgery is successful.
Tina
0 -
Thanks everyone!!!...superb support!!..John, funny as usual...logeotina said:Hi Sharon:
A medical directive is an excellent idea. Someone to make medical decisions when you cannot do so is necessary. George had one and so do I. When George was admitted to the hospital a few days before his death I gave them the directive. How ours read was when he could not make a decision for himself, it was up to me. These are not easy decisions one has to make. As an example, they did not even give him morphine unless I said ok. The morphine was not given for pain but to ease his breathing so of course I said yes. He was in total renal failure. They offered dialysis. I asked it it could possible reverse things and was told no, not likely, so my answer to dialysis was no. The doctor then informed me that his thoughts were that I had made the right decision but they were "legally bound" to offer everything. If your daughter is somewhat unstable she is not the person to ask important questions and make the decisions. If you sister is not strong, she is not the one. You are in a tough spot but you do need to name someone if possible. I am fortunate in that my nephew is an ER doc and said yes when asked if we could add him to the directive. He came to the hospital, looked over George's medical records, and advised me yes, I had been making the right decisions. If you have a brother-in-law, nephew, niece, perhaps you could talk to them. Whoever you name has the final decision, no matter what anyone else says about it. Talk to the people at the hospital if you do not have someone and they will insure they conform to your wishes.
Hopefully you can get things worked out. This is just food for thought for the future.
Take care and hope your surgery is successful.
Tina
hey everyone,
I thnk my best bet is to make all my wishes know to the medical team. They have seen me go through this whole thing alone, and trusting in their care. I know that they would have to go "all out" if not told otherwise. I will put all that in writing, and in the MOLST form. I had to decide for my mom, but the doctors told me she was brain dead, so that was clear.
As a very faithful person, I really don't fear passing. But, I do not want to be on machines if there is no chance of my reviving. Sadly, I am alone because nobody steps up. Though, I am pretty sure I would not want to be the proxy for casual friends...it is just a lot to ask. For instance, I might have made the wrong choice in Jan's situation...so, you don't want me in charge...lol...But, I am now rethnking that, as if they were saying you would come back without serious brain damage...well, keep going. So, I have now rethought ya....
But, spiritually speaking, if we are supposed to go, don't we go? Do we really have that much control over our "time?" This question puzzled me even when choosing to treat this. I mean, unless one is to intentionally take their lives, do we really control our time? If I am supposed to,live, and they stop the paddle a moment too soon, would I come back because I am supposed too? I don't think we control our death as much as we think...
Also, it is scary to put my daughter, but, she is my family, and I think this is bringing her back around to wanting more of a life outside of her struggles. That said, she would have only the permission to act upon the advisement of the medical team. I really have no other choice...I think it is too much to ask of people who aren't that close...I would not want that responsibiltiy for others.
But, all the above said, it is supposed to be OUR wishes that the proxy carries out, and not their own. It is funny how doctors have a great outlook for our care, and then they toss in the "death" card. I first experienced that before having knee surgery....and I was thinking how I could live nicely with a bum knee.
Thanks again everyone. I will keep posting, and I will surely post on Friday if I am not in line at the pearly gates...
geez....the rest of the world doesn't know what they are missing!
0 -
Life's not all peaches and cream....Sharronoffaith said:Thanks everyone!!!...superb support!!..John, funny as usual...lo
hey everyone,
I thnk my best bet is to make all my wishes know to the medical team. They have seen me go through this whole thing alone, and trusting in their care. I know that they would have to go "all out" if not told otherwise. I will put all that in writing, and in the MOLST form. I had to decide for my mom, but the doctors told me she was brain dead, so that was clear.
As a very faithful person, I really don't fear passing. But, I do not want to be on machines if there is no chance of my reviving. Sadly, I am alone because nobody steps up. Though, I am pretty sure I would not want to be the proxy for casual friends...it is just a lot to ask. For instance, I might have made the wrong choice in Jan's situation...so, you don't want me in charge...lol...But, I am now rethnking that, as if they were saying you would come back without serious brain damage...well, keep going. So, I have now rethought ya....
But, spiritually speaking, if we are supposed to go, don't we go? Do we really have that much control over our "time?" This question puzzled me even when choosing to treat this. I mean, unless one is to intentionally take their lives, do we really control our time? If I am supposed to,live, and they stop the paddle a moment too soon, would I come back because I am supposed too? I don't think we control our death as much as we think...
Also, it is scary to put my daughter, but, she is my family, and I think this is bringing her back around to wanting more of a life outside of her struggles. That said, she would have only the permission to act upon the advisement of the medical team. I really have no other choice...I think it is too much to ask of people who aren't that close...I would not want that responsibiltiy for others.
But, all the above said, it is supposed to be OUR wishes that the proxy carries out, and not their own. It is funny how doctors have a great outlook for our care, and then they toss in the "death" card. I first experienced that before having knee surgery....and I was thinking how I could live nicely with a bum knee.
Thanks again everyone. I will keep posting, and I will surely post on Friday if I am not in line at the pearly gates...
geez....the rest of the world doesn't know what they are missing!
Life's not all peaches and cream....
Ok... it's let it all out time again...
Our 48yo son came down from the northeast to Florida to "help out". Good deal, right?
My very major operation will be at a hospital 2 hours from where we live. He said he could
transport my wife back and forth, since she can't drive that far by herself. She could be there
before and after surgery, and visit during recovery. Swell!He stayed at rented lodging, since he didn't want to impose too much, and he has a dog.
But he also stayed with us during periods where other lodging was not available, or too
costly. Fine. During the week he decided to stay at our home, he went out one night and
we didn't see him or hear from him for three days. The wife was worried since he always
played on the computer with her, so she would know he was OK, and she didn't have
contact with him; she worried that maybe he had an accident.So I checked the local news for her, and I Googled his full name. And Google returned
a mug shot, and news.... a felony charge for drug possession. Mom never believed me
before when I told her that he had a problem. I printed the data out for her.Son got infuriated that I "went behind his back" to get information, and even more infuriated
that I had told Mom about it. Behind the back? It's Google. I do business on the web and
with any new customer I check phone numbers and names; it's what you do in business.He went into a rage, and screamed out in my face: "I HOPE YOU DIE", over and over,
while appearing to reach for the knife drawer. My attempt to call 911 stopped his actions,
and is now on his way back north.If your daughter has an addiction problem, please do yourself a favor and find someone
else to carry out your directives and wishes. Even some homeless guy living in a fridge box
may be a better choice as long as there isn't an addiction problem involved.YOU are number one. Remember that because others seem to forget. You have to
take care of yourself first; sometimes you get let down when you least expect it, and
during a major operation isn't a great time to experience a failure.Best wishes.
John
0 -
Sharon, sorry you have this problem
I think the written directive after you have let your medical team know your wishes is your best bet under the circumstances. Make sure you use a form that is valid in your state and that you have it witnessed if your state requires that. My state has them available on line so you may be able to find one through a google search if your medical facility doesn't have any available. Also, if you don't make it to the pearly gates and need to change anything on the form, make sure you tear up the existing copy and fill out a new one. I hope your surgery goes smoothly and look forward to getting your updates after the surgery.
Grace/lizard44
0 -
trial, short term
Hopefully this will be a mute point and you will not require any of the molst directives.
unfortunately the legal world has stepped in on this. there are always gray areas.
a trial of intubation is poor language but we're stuck with it. in the absence of poor
health and poor lung function a lot of respiratory emergencies are potentially reversible.
the easiest to understand is pneumonia. If you're strong enough you can usually fight it off.
short term is the other Poorly defined phrase.
Advise you discuss this with your family doc.
steve
0 -
Thanks everyone...lizard44 said:Sharon, sorry you have this problem
I think the written directive after you have let your medical team know your wishes is your best bet under the circumstances. Make sure you use a form that is valid in your state and that you have it witnessed if your state requires that. My state has them available on line so you may be able to find one through a google search if your medical facility doesn't have any available. Also, if you don't make it to the pearly gates and need to change anything on the form, make sure you tear up the existing copy and fill out a new one. I hope your surgery goes smoothly and look forward to getting your updates after the surgery.
Grace/lizard44
hey Lizard, John, and everyone else...
thanks so much for your feedback. Isn't it awful that we are supposed to be positive, and focus on healing, and then they throw this at us. I am sorry that so many of us go through this bs in our fight against cancer. I literally have done so much in the past few years, helping people, donating my time etc....
And, I am still the same person I was before cancer; I look the same, I'm pretty sure I smell the same, and I still like to have fun and have a great sense of humor. It's just that some people are so selfish, and they don't want to help, so they send an occasional text "let me know if you need anything," instead of actually offering to do something specific to help. One "friend" who went out of her way to ask people for my number, acting like she was being all friend like...well she sends the occasional "be blessed".....ok...helpful. I appreciate people praying for me, and I am happy to have someone say they are, but I am offended at the occasional rubber stamp. As if they are helping? Faith without works is dead...
Thanks also for the feedback on my daughter. I think after all the reality here, and John...sorry to hear your story with your son....but, now I think I basically need to spell out that I trust my medical team to do as they feel necessary to treat me, but to unplug me only if I am eeg gone, or otherwise not likely to recover.
It is hard to not tell people off. People are just so stuck in themselves. But, a lot of folks are in for the same thing, I fear, when they need someone. Everyone is stuck with virtual friends and selfies...
I should not even have to worry about the stuff I am now focused on. But, I have a lot of faith things will turn out well. Maybe this is my way of finally sticking up for myself, and saying the truth. I am just taking my time in finding the words to say to the folks I stuck my neck out for....and now they are just gone.
0 -
Sharron.....Sharronoffaith said:Thanks everyone...
hey Lizard, John, and everyone else...
thanks so much for your feedback. Isn't it awful that we are supposed to be positive, and focus on healing, and then they throw this at us. I am sorry that so many of us go through this bs in our fight against cancer. I literally have done so much in the past few years, helping people, donating my time etc....
And, I am still the same person I was before cancer; I look the same, I'm pretty sure I smell the same, and I still like to have fun and have a great sense of humor. It's just that some people are so selfish, and they don't want to help, so they send an occasional text "let me know if you need anything," instead of actually offering to do something specific to help. One "friend" who went out of her way to ask people for my number, acting like she was being all friend like...well she sends the occasional "be blessed".....ok...helpful. I appreciate people praying for me, and I am happy to have someone say they are, but I am offended at the occasional rubber stamp. As if they are helping? Faith without works is dead...
Thanks also for the feedback on my daughter. I think after all the reality here, and John...sorry to hear your story with your son....but, now I think I basically need to spell out that I trust my medical team to do as they feel necessary to treat me, but to unplug me only if I am eeg gone, or otherwise not likely to recover.
It is hard to not tell people off. People are just so stuck in themselves. But, a lot of folks are in for the same thing, I fear, when they need someone. Everyone is stuck with virtual friends and selfies...
I should not even have to worry about the stuff I am now focused on. But, I have a lot of faith things will turn out well. Maybe this is my way of finally sticking up for myself, and saying the truth. I am just taking my time in finding the words to say to the folks I stuck my neck out for....and now they are just gone.
Sharron.....
Re:
" I am just taking my time in finding the words to say to the folks I stuck my neck out for....and now they are just gone. "It's funny how when someone owes money, they avoid the person they owe it to. Shame perhaps, of letting a friend down?
It's not much different when a friend has a terminal disease; what do you say? How do you say it? Should you show sadness or act like there's a million tomorrows to look forward to? The friend usually finds that avoiding contact is easier than any confrontation. "I'll give a ring and make a quick "HI, how's it goin' call".
For me, that's good enough. Maybe too much, even... Animals avoid a dying member, and the dying member goes and hides as they get closer to death. Of course they do that to protect the rest, since a weak member can attract prey. We're animals. We forget that, but that's all we really are. A bit more sophisticated (politicians exempt), but most of us try to do what's right for the rest of the flock (or herd).
So Sharron, try to accept the frustration of friends not knowing what or how to react and who are simply avoiding the confrontation of what they may not be able to handle well enough to show you how much they do care; they probably care more than you will ever realize... they just don't know the correct way to show it.
(Or, they could just be foul pigs running for nomination on a republican ticket?)
(HA.... sorry)
John
0 -
ShareJohn23 said:Sharron.....
Sharron.....
Re:
" I am just taking my time in finding the words to say to the folks I stuck my neck out for....and now they are just gone. "It's funny how when someone owes money, they avoid the person they owe it to. Shame perhaps, of letting a friend down?
It's not much different when a friend has a terminal disease; what do you say? How do you say it? Should you show sadness or act like there's a million tomorrows to look forward to? The friend usually finds that avoiding contact is easier than any confrontation. "I'll give a ring and make a quick "HI, how's it goin' call".
For me, that's good enough. Maybe too much, even... Animals avoid a dying member, and the dying member goes and hides as they get closer to death. Of course they do that to protect the rest, since a weak member can attract prey. We're animals. We forget that, but that's all we really are. A bit more sophisticated (politicians exempt), but most of us try to do what's right for the rest of the flock (or herd).
So Sharron, try to accept the frustration of friends not knowing what or how to react and who are simply avoiding the confrontation of what they may not be able to handle well enough to show you how much they do care; they probably care more than you will ever realize... they just don't know the correct way to show it.
(Or, they could just be foul pigs running for nomination on a republican ticket?)
(HA.... sorry)
John
John, can I share this post?
I have a lingering hurt about how abandoned I felt during the worst part of my journey, but your post clears allot of things up for me.
Sue - Trubrit
0 -
Nice one John!!!John23 said:Sharron.....
Sharron.....
Re:
" I am just taking my time in finding the words to say to the folks I stuck my neck out for....and now they are just gone. "It's funny how when someone owes money, they avoid the person they owe it to. Shame perhaps, of letting a friend down?
It's not much different when a friend has a terminal disease; what do you say? How do you say it? Should you show sadness or act like there's a million tomorrows to look forward to? The friend usually finds that avoiding contact is easier than any confrontation. "I'll give a ring and make a quick "HI, how's it goin' call".
For me, that's good enough. Maybe too much, even... Animals avoid a dying member, and the dying member goes and hides as they get closer to death. Of course they do that to protect the rest, since a weak member can attract prey. We're animals. We forget that, but that's all we really are. A bit more sophisticated (politicians exempt), but most of us try to do what's right for the rest of the flock (or herd).
So Sharron, try to accept the frustration of friends not knowing what or how to react and who are simply avoiding the confrontation of what they may not be able to handle well enough to show you how much they do care; they probably care more than you will ever realize... they just don't know the correct way to show it.
(Or, they could just be foul pigs running for nomination on a republican ticket?)
(HA.... sorry)
John
Yep,
And they are possibly Trump supporters.
i get the awkwardness of talking to someone with cancer, and not knowing what to say. And, I am hibernating a bit myself, and enjoying making progress on my illustrations. See, these folks will miss me. They will miss me when there is an advocacy campaign, or an initiative that needs someone to step up on. Yep, I put myself out there, and would not change that one bit. But, when someone goes from texting you nearly every day, about THEM of course, and then you don't hear from them...well, I think that is very selfish.
i do get the stepping away and not knowing what to say...thanks as that is so true....and you are so right in that.
Sadly, we are in an age of "virtual friends" and "selfies." I hate those selfies, and have made just one in jest in my lifetime.,.I was holding a huge brussel sprout stalk, and looked like the "home improvement" neighbor who was hiding behind the fence. People are really living in a decade of self-importance that does not exist.
i am broken and battered a bit. I think people have forgotten how to stick a stamp on a card, and put it in the mail. The cards still exist...I see them in the CVS...but, the people no longer exist.
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.7K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 308 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 670 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 236 Multiple Myeloma
- 7.1K Ovarian Cancer
- 59 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 537 Sarcoma
- 727 Skin Cancer
- 652 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards