Now I Have to Play God? So Daddy and I visited a lung specialist today who confirmed that there is a mass in his chest. With daddy's advanced age and other conditions, he feels it may be best to just let nature take its course.
The thing is...Daddy didn't make any advanced directives when he was of sound mind, and I'm left with the burden of deciding whether we should keep him alive when this mass rears its ugly head.
I have no support system as many of you know so I feel very alone right now. In a normal world I would discuss with the family but I can't take being railroaded by them right now or being called selfish for a DNR decision.
I'm angry. Why does this fall on me? Why should I suffer because he chose to smoke?
I'm afraid. I don't want this responsibility. I'm sad. I'm essentially left to decide his ultimate fate. I feel like a murderer.
This isn't fair. I don't know what to do.
Daddy never liked to talk about anything death related. He always thought he was invincible - hence his decision to continue smoking despite the doctor's MANY warnings.
I've been a ball of emotions today. Seeing Dad struggle with the oxygen tank really confirmed his frailty to HIM and me. He looks frustrated about the entire thing and I feel so guilty every time I leave him. Then I feel resentful for being placed in a position of having to feel guilty for needing (and wanting) to go to work.
I have decided to simply wait a while. A decision doesn't need to be made TOMORROW, and things are too stressful to even deal with a decision that major right now.
I found comfort in a book "Can We Talk About Something More Pleasant" by Roz Chast. It is a HILARIOUS depiction of the author's experiences while taking care of her aging parents. It literally got me through the day. I needed to laugh. It's an easy read!!!
Having said that, a DNR can be defined as narrow or broad as you wish, at least in NJ. In my mother's case, we decided that we wanted intervention with a bipap if she was struggling to breathe, but if her heart failed and she had no pulse we did not want them intubating, shocking, or even doing compressions. We finally did agree to a meeting with Palliative care, only to learn that medicare and the insuracne companies are very involved in what qualifies as palliative and hospice. No wonder we were being pushed into one of those categories! We said no thanks to those people as well. When she was released from hospital into rehab, we (finally) realized that we could demand the same level of monitoring and preventative care for her that she was getting in the hospital. That was a revelation, as prior to that we were told that rehab and long term care are just "reactive" - i.e., they'll only treat something if it becomes a problem. My advice is to ask a lot of questions. Trust no one whose livelihood depends on the insurance industry. For now at least, they can't legally force you to do anything you don't want to do. So take your time if you have that luxury. When it's time for DNR you'll know, believe me.
We made our decision of DNR and no life extending measures for Mom when she went into the NH. She's 101, and the staff suggested we do so as anything like that would prolong her suffering and CPR would break her bones she is so fragile. As the cancer and dementia progress you will know what will be best for your Dad. God has a way of giving us a message if you leave it in his hands. (((((hugs)))))))
My husband pulled out a feeding tube a week before he passed; he had watched his brother go in spite of a breathing tube and he told me no way for that. About six months earlier, when it was becoming obvious that his lymphoma was no longer responding to treatment, "God gives a lot of choices, but this is not one of them." My pastor tells of one of our people who was begging to go; he told he it was OK, and she slipped away. Her daughter has never forgiven him. I often think at funerals that this is true reality; the question is not if, but when and how.
The first answer I found was in a review of our life as I knew it. There are other beliefs or conversations that will give you a clue to what your father would want. This most important decision needs to be one which you are comfortable he would make. An example would be the conversations you were allowed to hear when a grandparent was in a final illness. Since you might not have been available for those conversations, allow yourself to look back over your life and objectively realize information from other conversations. While you were living at home or upon a visit were there conversations surrounding medical care and how he would approach them at that time.
This decision is not one which can be made in a couple of hours rather it will take some time to find an answer you are comfortable with. You mentioned in your inquire a small piece about 'when this mass rears it's ugly head'. This gives way to is there time for you to have a conversation with him? If so this would be an excellent time for that conversation. This may not be conversation you are comfortable with. A person who can guide you through a conversation and help with the other feelings you are having right now is a Hospice Counselor.
The Hospice Counselor is specially trained for this kind of decision making. You will have some insight when the conversation is over that will help with this journey. All of your feeling are valid and require you to work through each one.
This difficult answer possibly the most important for decision you will make is one you will question up to the end. Allow yourself to be human and work through all of the answers you have. It is OK to be angry, hurt, sad and fearful at the same time. Please know that many people are your friends and co-decision makers. All have found a way to understand and more on passed this decision.
My Mom did have advance directives but when she suddenly became gravely ill and was in the hospital it still turned into a chaotic mess where I was pretty much on my own without my siblings and had to make that final decision. I always wonder about the what ifs but I know my Mom was unhappy and ready to be with her other loved ones in heaven and thats what I have to think about during those sad moments when I am missing her.
Nowadays doctors make this decision (and IMHO always should have because they UNDERSTAND and are without the same emotional ties that familial members have, but litigation being what it is made that difficult back in the day)
A DNR is exactly what it says on the tin. It is used when resuscitation is required i.e. you have stopped breathing and it usually covers all events of stopped breathing unlike an advanced directive where you can be selective.
I would love to put away the guilt but after 18 years I suspect it isn't gonna go any time soon
I was about to undergo surgery for a burst appendix and the anesthesiologist invited me to sign a DNR immediately prior to putting me out. Knowing my survival rate was 20% I declined. he then asked how much I wanted him to do. I told him he could shock me a couple of times and if that failed my husband would make the final decision but I did not want to be revived to a vegetive state.
Having a DNR is not murdering someone or signing a death warrant it is just giving others permission to treat or not treat under certain circumstances.
Please everyone educate yourselves about end of life decisions and find out what your loved one would want.
Jude the use of a morphine pump or any other route of administration does not ensure that death will ensue. of course death may follow as the loved one is probably actively dying. It does relieve the pain and being pain free frequently allows the person to slip away at peace rather than staying alive to fight the pain.
I personally would have no problem administering a prescribed dose of a narcotic even though I knew it could accelerate the dying process. Do you want to watch your loved one screaming in agony, writhing round the bed and yelling for help, often pleading to be given more. I think not.
So put away the guilt all of you who made these decisions, loose the "what ifs" and grieve your loss. You owe it to your loved one to grieve completely so you can go forward with your life
I signed it and for 18 long long years there is not a day goes by when I don't berate myself for killing him. I know the alternative was worse..... watching him die in agony as his lungs filled up and were drained with a drip in which rehydrated him enough for the lungs to fill and be drained - you get the picture I am sure. It hasn't altered the utter self disgust I feel for signing a piece of paper that was effectively his death warrant.
Today this choice is removed and you don't have to have a next of kin sign this but in its place has emerged the DNR and who is going to take responsibility for this decision one wonders. If you don't feel comfortable about taking on this decision then don't would be my advice. Some people can handle it some can't and if you're one of the can't s then living with the decision you make could be heart wrenching.
What I will say is that if someone is old and frail and they do conduct CPR then death is a still a possible result...broken ribs, punctured lung, all possible once bones become brittle. I will never make that decision for another person NEVER. I have however an advanced directive for me and have overridden my children's ability to contest it. I don't want to live now, let alone when I am older and frailer for heavens sake.
And let's be honest - look at some of the posts here inquiring whether a medmal claim exists because of events that might have been a normal part of dying but the family just wasn't ready or expected more from the medical community that was reasonable.
And now we have prolonged life, often well past the point of tolerance.
From everything I've read modern medicine almost always errs on the side of more intervention and prolonging life, even overriding advance directives if there is any doubt at all. A DNR is not a death sentence, it merely give docs the chance to stop trying beyond what is reasonable.
As for whether or not to talk it over with the family, why do it if you know it will cause debate or discord? You only have to tell them that his disease is incurable and they will try to keep him comfortable, you don't have to outline every decision and treatment plan. Sometimes ignorance is bliss.