Mom signed an advanced directive DNR and keeps changing it. Any advice?

My 93 year old mother had to underrgo emergency surgery for a preforated bowel before the surgery the doctor spoke with her and told her that she essentially had two choices have the surgery, but understand that it would be a difficult and long period of time of recovery or die with sepsis in a hospice. My mother had a DNR and her biggest fear is that she would be kept alive by a ventilator with a tube down her throat. She decided for the surgery and in the end is connected to a ventilator not to keep her alive but to pump out all the fluids. It is so diificult to see her with all the tubes, all swelled from the fluids, her eyes filling with tears. My question is she had contact with hospice because she also has indolent non hodgkins but at any time should she decide to stop fighting can we advocate for my mother respecting her wishes to ler her go into hospice? I have a feeling that when the tube is removed she is going to say to let her go in peace ... No more life saving measures. Is her DNR completely void? Can her family doctor also advocate for her ?

anamaya - sincere condolences on your loss. I am so glad that your last days, and moments with your mum were so rewarding. ((((((hugs))))) Joan

Anamaya, that was beautiful. Thank you.

Mom passed a few days ago on 1/8/13 at 1:22 am. I had been with her most of this last illness-- especially in the last 3 days of the downslide-- & almost all the last 14 hours of her life. She passed smiling, laughing, joking, hugging, and saying "Thank you" and "I love you" at the beginning of the downslide; near the end she was simply semiconsious & calm (resignation to her "walk" and comfort medications of morphine and ativan), though responsive to touch. I held her hand most of the time in the final weeks, days, hours, and minutes; and would not let her give in to worry or self pity. This was not difficult: my mother could be a smart, reasonable woman and she maintained her best self at the end. For those of you who struggle with and question how one can be compassionate in the case of a formerly abusive parent, my heart goes out to you. I did it through prayer, meditation, & yoga. I recalled my mother's best self, and reminded her of that daily. I forgave myself for the tornado of feelings-- including resentment & hate-- and patted myself on the back when I did what was loving and "right". I concentrated on the mom I knew my mom could be when she was not in the thick of her emotional/mental illness; just as I believe NO ONE truly wants to cause pain and be alienated from people-- especially loved ones.
When mom passed I felt my dad and my late sister there ready to take her home to her parents, departed siblings, & God. I felt Life of a different sort fill the room as I held her hand, heard her final breaths in & out, and then the final expiration. It was Life that is beyond the reaches of suffering-- Life that holds peace, forgiveness, & resolution for all the pain.
I know a bit about the struggle to take care of an aging parent-- tho' my mom lived on her own capably until the last month of her life of 82 years-- I did have to take on ALOT and give up my own life a bit.
What I also know is this: if you pace yourself by taking care of you, trusting in medical and other assistance as well as a force greater than yourself, you will do fine.
And being there at the end, to support and not allow even those who broke your heart the most to die alone-- that will heal much of the sorrow that has accumulated over time.
Forgiveness & Love-- while detached-- is a way I wholeheartedly recommend.
Thanks to All here who gave me strength on my journey.
Best Love,
Anamaya

Mom did much better with the removal of the ventilator than the docs thought, and she is holding her own on half of the meds given to keep her heart going. She is semi-lucid (she uses the wrong words to explain what she is trying to say so one has to decipher to get her meaning), breathing with oxygen & nebulizing, getting insulin shots, as well as a few other meds to keep her in a delicate balance. She does still have a sense of humor, tho' she is expressing depression over my sister's death (a result of her mentally ill son, my nephew, shooting her) and my father's heartbreak over this that eventually led to his decline and inability to fight colon cancer. I have to constantly remember that it is not my job to "fix" it all, but to do what I can to make it easier for my mom. With no help from my remaining sibs or their kids, my daughter living 1,000 miles away, & other friends and family at least 30-45 mins. from the hospital I am desperately seeking ways of keeping my stride.
Think I'll tie on my new athletic shoes and go for a walk-- right after the yoga!
Hope everyone out there has some sun in their sky today, as well.

Sending positive thoughts to you, Anamaya - that does not sound like a very easy thing to go through.

After the cardiologist told me yesterday afternoon that my mom's choices now are "bad and worse" I am heartbroken that her life has come down to this. Her heart is functioning at between 15 and 30% of normal which is not enough to keep her blood pressure up, fight infection, or ease her already limited breathing (from COPD). There are other problems with the limited circulation as well, of course; not the least of which is losing her lower limbs. She is on a special bed to allow as complete blood flow as possible while laying down and she has extra cushion & compression on her feet & legs to assist more. The ventilator she is on is not making her well-- they cause more problems than they solve for someone in her condition (infection, etc.)-- not to mention she can't really talk with it in. Mom is lucid and responsive; she even still has a sense of humor. Right now I am praying to some higher power to help me help her to make this walk to the end. Removing the ventilator could cause her to arrest as the heart condition statistically only gives her a 1 in 10 chance of living three months more (according to the cardio doc). When she was trying to talk last night, I mentioned to her that I could understand her better without the ventilator and asked if she wanted it out as she was very frustrated that we couldn't get what she was saying. I did understand enough to get when she said "Not yet". I assured her we would keep it in as long as she wanted, but I don't know if she understands that it's probably going to cause her pneumonia soon. We are going to help her review her options today and then we will make a decision. I don't really feel up for the job, but I want her to know that she is supported in her walk (so to speak). I am so sad that she is still so afraid and that there isn't anything to be done except make her comfortable and hope for the best. Thanks to all here who have helped me clarify with your posts.

Ana I hope your Mother is doing better and I thank everyone who commented on your question. I pray the day never comes where I have to make a decision knowing it is not what my father wants but as well I also realize what the doctors are saying and I have to step back for a moment and let him be the decider while he is still able to speak and think for himself. I know this can be a hard topic for some of us and it can weigh heavy on someone for sure when the time comes. My father will say at times it is easy to go and other times he wants to be kept alive. I can understand that as a daughter as well. I thought about this if it were me what would I want? Sometimes we do not want to see our loved ones go and they do not want to let us go also. I pray for everyone this year that they have a Happy New Year and I send blessings of love to all of you here. Ana I am thinking of you and hold on to your strength. I am here for you too!

Thanks everyone for the feedback. It really helps. To clarify the situation: I am completely in support of my mom choosing her way as long as she remains able to. She told me a few months back during the last hospitalization that she felt she had "lots to do" in this world still. Interesting, since she sits in the house watching TV 24/7 for the past 5 years: medicated for COPD, diabetes, venous stasis, cholesterol, & blood pressure. She's never done much-- dad and we 5 kids took care of her and the house while she smoked and drank coffee. She did rule the roost, tho'-- with an iron fist, and was abusive to all in many ways. I always thought she was mentally ill and so did not come to hate her as my other sibs did. The 3 others still living do not want a relationship with her, which I understand from experience is very difficult as my mom can say mean things and never apologize. So, though I knew accepting POA and executor would be difficult, I also knew that there is no one else that would respect my mom as a human in spite of her obvious flaws. Additionally, I knew she would probably change the DNR as well as be dramatic about it since that's her usual m.o. My post was meant to help me relieve some pressure. BTW what I really think is going on with my mom is that she has never been satisfied with her life and she is afraid of death. I do hope that in the time she has left that she comes to some peace about it all. In the meantime, I will continue to give her detachment, compassion, & tolerance-- no matter how hard it may be. Right now she is semi-conscious, sedated, & ventilated in ICU again (for the second time in two weeks)-- and she, like all those in need, deserves care; as well as family and friends to support her walk to the end. I pray that I and all in this position have God's help in making any decision given to us to make regarding the welfare of another. Happiest New Year Blessings to All.

If the person in question has dementia or a life ending problem (meaning they can not get well) the DNR is what you want to discuss with her. What is the point of feeding tubes or catheters and pain if the patient is unable to ever get well. Have a social worker, lawyer, hospice, or doctor talk to her. If she is unable to think for herself, you will have to make the decision. I suggest the DNR in that case. Corinne Sending hugs/

Simply say "do whatever you want, Mom - it's your life and I'll respect your wishes, whatever they are, when the time comes." Let her change it as often as she wants - it's her prerogative - just don't get involved in the drama that goes along with it. My mother has yet to change her status from "full code" to "DNR", even though the dr. has told her that due to her multiple chronic issues should she need CPR and the like that it will do more harm than good (break ribs, cause internal bleeding, etc.) and that he wouldn't wish that on his own mother. Sometimes I believe there is a point where modern medicine needs to take a back seat and just let nature take it's course - especially when a person is miserable just "existing" due to medications, as compared to really "living" a productive and happy life.

Oops -- I meant the decision of life and death is always difficult! There is fear and doubt no matter what you do.

The decision of life and death is never difficult. In my father's case, it was much easier because what he wanted was in line with his directives and my decision. I didn't really have to make the decision, because I knew what his wishes were. In the position where I was unclear what he wanted and I knew that he might be brought back with CPR with broken ribs and a poor quality of life, I would probably sign the DNR and put it all in the hands of a higher power whether to take him or let him stay a bit longer. We have the ability to prolong life, but I often wonder if we should when life has just become torture.

@Jessie you are exactly correct but when the patient can no longer talk or make a decision does that mean the caretaker has to make the decision. I wish my father would come to terms with his health but I totally understand it is his wish and not mine or anyone else's even though the doctors have said his illness is terminal and resuscitation would be too violent for him in his condition. He still holds that one hope and I was told as well they can be revoked at the last minute. It puts the family members in a hard situation should it ever come to make a decision I probably would say do what you can for my father even though I know he has a terminal illness. I would not want to be the one to not sign it and have that guilt on my head for the rest of my life. I told this to the Hospice Social Worker who told me specifically I may have to be the one to sign that paper should my father not be able to. What is your take on that if you will share with me. Thank you. Appreciate you.

Both living wills and DNRs are not binding. If the patient changes their mind, the new wishes take precedent. What the patient is expressing is they are not ready to die just yet. The patient's wish always take precedent from what I've been told. The only thing I believe the others can do is have the legal document in place for the time that it is needed.

I am glad that DNRs and living wills are not completely enforceable. When a person signs them, they are not facing the reality of them in most cases. It would be terrible if someone asked to be resuscitated and the hospital said no, you signed this paper a year ago, so die you shall.

Your mother should be the one to decide about the DNR. It may mean that she does not qualify for certain services, but it is her life and her decision. I am glad that my father had a DNR, because when it came time, his will and the paperwork was in place. My mother was not competent to make a decision, so the hospital asked me. I told them not to try to resuscitate him because he had prayed for death for so long. They didn't ask us to sign any new paperwork. We let him slip away as peacefully as possible. We knew it was time. I hope that anyone faced with the decision will be in the same position where they know that it is time to let go.

I am praying for you in this situation as I have been going back and forth with this DNR paperwork and yes you are correct no one wants to be the one to say sign it or don't sign it. The social worker tells me if my parent can not sign it then I will have to do it and I have no legal orders in place. I told her if my parent did not want this then why would I go against him? I am in between the Va and Hospice and it has did nothing more than give me more stress on top of what I have already. I was also told that the DNR can be changed in a minute so what is the sense of having one is beyond me. One doctor told my father that it would be too violent at this time to try to do the paddle on him in his condition. Anamaya I will pray for you and your Mom as I know this sounds like a runaround and it is nothing funny about it - I totally agree. On my own opinion I think NO ONE wants to be responsible for signing this DNR paper, the patient and caregiver. I am in a mess here trying to get respite care and the VA says the paper has to be signed for him to go to their facility. Our social worker has not been here in over a month because she says my father does not like her. I am calling a meeting somehow with the administrators of both these facilities to see what the heck is going on since I am the sole person tending to my father. I would like to ask you are you willing to sign it against your mothers wishes? I don't like the drama at a time like this as well. Hugs.