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I’m in desperate need of advise. My 90 year old Mom is a resident in a nursing home in NJ. I live in Florida. The social worker has been bringing up the subject of the patient’s wishes if she goes into cardiac arrest. My Mom has been declared mentally competent since the day she was admitted by the staff psychiatrist back in March. There is no POA because my Mom was declared competent since day 1 and has been up until now being reevaluated throughout her residency. Now the subject of my Mom being a code patient is being brought to my attention. The social worker I feel is worthless and I’ve caught her lying on several occasions. Today she told me that she spoke to my Mom about what her wishes were if she arrested. She said my Mom understood the conversation but she felt my Mom really wasn’t 100% with what happens during resuscitation. Now the social worker tells me that her doctor needs to sit with my Mom and explain at length what happens during a code. She said it’s the doctor’s responsibility to go over everything so my Mom is fully aware on how to make her decision. The social worker then tells me that I need to call the doctor and demand he visit my Mom and go over everything with her. My honest sentiment is “go to hell” it’s your job not mine to coordinate who meets with my Mom and make sure she is fully aware of everything. I held my tongue because I love my Mom and all I want is what’s best for her. I don’t want to piss anyone off and possibly hinder my Mom’s care. I’m in Florida and my Mom is in NJ and the COVID situation makes the situation that much harder. No visitors in person and everything is done over the phone. I’m crystal clear to the social worker that it’s her responsibility to handle this situation not mine. I have no POA. She needs to get the doctor to come out and talk to my Mom. Am I right? I’m at my wits end and I’m not familiar with the mechanics of nursing homes. My Mom is not one to discuss life and death issues and never has been. It’s like a taboo subject and would rather avoid the subject then speak about it. I’ve had no luck trying to discuss it with her as her daughter. I’m prepared for the worst and have already taken care of funeral arrangements because I know my Mom is not going to leave that nursing home. Can someone please help me?

I think the social worker does not know what else to do to get through to your mom and is hoping that you as daughter can work with the doctor. Not as POA but as family. Is social worker aware of your mom's dislike/fear of end of life discussions? Are they aware that you have tried to have this discussion, your mom refuses to take part and you have in fact needed to wash your hands of the subject, aka "whatever happens, well let it happen." Perhaps after such a candid discussion, social worker will understand that you cannot do anything here. After all, unless your mom has dementia, she has to make the DNR decision and take the consequences.
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Just make sure she knows what really happens with CPR and doesn't believe it is the same way as shown on TV and in the movies.... for someone her age the stress of CPR could easily kill her and it could be a great deal more of a painful way to go than cardiac arrest.

If she's competent, knows the facts, and is willing to take the risk, more power to her imo.
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AlvaDeer Sep 25, 2020
Reality is that she will be dead when the CPR is done. It is the nurse who will live with the feeling of bones shattering under her hands. And live with it forever. Even knowing that there is no feeling of it by her patient. It is, to my mind, a torturous indignity done to the extremely old. It is increasingly more rare due to the good work of Social Workers such as this who attempt to get that POLST or directive in place. Sadly, families are not there to see, hear and feel what it is. You are so right; this is no movie story.
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RosieT................one short question.
Have you ever asked your Mom: "Mom, should you die naturally do you want them to do compressions on your chest to try to bring you back from death, and then would you want them to put you on a machine to breathe for you"?
Now.
Mom will either say:
"Rosie, I don't want to talk about this"
OR
"Oh, no, Rosie. I don't want that."
OR
"Yes Rosie, I want to live no matter what and I want them to do EVERYTHING".
I think you are overthinking all this.
If you don't wish to do ANYTHING then tell the Social Worker "My Mom is competent; call the Doctor. This isn't my business and I won't discuss it now or ever. Don't call me again about the subject of a code."
Then that puts all of this to rest. You can do it in one day. Don't overthink it. This isn't about Mom's whole history; it is about what to do if Mom dies.
It would be negligence on their part if the Nursing home did not address this issue. It has nothing to do with the history of Mom coming to live with you or not or anything else.
This is a simple question of IF YOU DIE should we beat on your chest or NOT. They need an answer to this. They are doing their job.
SOMEONE has to speak with Mom about this. If Mom is judged not to understand any of this then someone has to speak with her next of kin. Mom can make the decision if the Doctor says she is aware and able. You can make it if she is not. And NO ONE can make it if they refuse to make it.
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RosieT Sep 24, 2020
AlvaDeer you are 100% right. I am overthinking it. I think it’s because I felt overwhelmed. Since my siblings aren’t active in my Mom’s life I’m the one who the NH, the SW and anyone from the facility calls when there is uncertainty. I’ve tried to have the conversation with my Mom about what she wants when the time comes. She’s dismissed me every time and changes the conversation. She refuses to talk about it. So when the SW asks me what should be done if the time comes I honestly can’t answer the question. I told her that I’ve tried to speak to my Mom about it but she will not have it. This is why the SW mentioned to me that it would be best if the doctor spoke to my Mom as her doctor and a professional about her wishes. She feels the doctor can explain to her what happens during a code. Why I’m confused is that the SW asked me to call the doctor and ask him to have the conversation with my Mom. I don’t know the doctor. He’s the doctor the NH uses so I found it odd that I was asked to call him. A family friend who is a home healthcare worker and who has dealt with this particular NH during the course of her career had mentioned to me that this facility has been known for trying to pass the buck to the resident’s families when it’s their staff who is supposed to handle certain things. So when the SW called me several times in one day regarding what my Mom’s wishes were I became overwhelmed. I rarely hear from the SW. I mostly speak to the nurses taking care of my Mom or the Physical Therapist when it comes to keeping up to date on my Mom’s medical status. I appreciate your posts and all posts from everyone and the advise I’m given. Now I know thanks to this forum how these things work.
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Respecting a person's wishes means respecting them even when you disagree with them, even when you fear the potential consequences of them, even when you think they are stupid, even when you are convinced that they stem from ignorance, misunderstanding or apathy.

Three mornings running I have come to the check-box marked "falls alarm" on a gentleman client's daily contact sheet. We had a frank exchange of views on this point on Tuesday, which ended with my asking "how is it a *bad* thing to have it there, just in case?" This morning I just looked at him over the top of my glasses and he said "I'll THINK about it." He'll be 92 next month, and lives alone.

You don't want your mother to suffer. It must be a racing certainty that your mother doesn't want your mother to suffer, either; but she's not as concerned about that possibility as she is about not being forced to contemplate her own mortality and the precise mechanism of her death. She literally doesn't want to know. I should leave it be, at least for the time being.

Done your own health care directive, for yourself, have you? Has anyone here? I know I haven't.
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AlvaDeer Sep 24, 2020
Oh, yeah. Old nurses all did their directive. I am pretty specific in mine. Not only no CPR but also no dialysis, no artificially administered nutrition. Etc. You can add a whole SHEET of stuff. Be specific about what you want and what you don't. American's definitely have a problem speaking about death; some other cultures are even worse.
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To clarify the situation, and I sincerely apologize to anyone I may have offended. My concerns from when my Mom was first admitted as a resident into the nursing home was her mental competency to make decisions. I was put on her emergency contact list because my sister (older then me) and my brother (younger then me) aren’t active in my Mom’s life. I was the one seeing that her bills were paid, that she had groceries, a roof over her head and pretty much taken care of. I didn’t or don’t do it out of the feeling of I need to because I’m the only one left. I do it because I love my Mom. I’ve begged her for years to come live with me and my family so she wasn’t living alone in her apartment. She refused. She would tell me I can take care of myself. Truth be told I do not know if it’s an issue of ego or that she felt she didn’t want to impose. What ever it is I never stopped asking her to come live with me so she wasn’t alone and had us to look after her. So now at 90 she had a fall in her apartment and her neighbor happened to knock on her door to check on her. Mind you she lived a relatively active life at 90 still going across the street to the grocery store and visiting her friends who lived in her same apartment building. After her fall she was hospitalized. She was sent to a rehabilitation facility which also was a nursing home. After her 8 week rehab was over the doctor came to the conclusion that my Mom needed 24 hours medical care. She was diagnosed with AFib along with a laundry list of other medical issues. Her mobility was either a wheelchair or being forced to stay in bed. With more physical therapy while being a resident she could be brought to where she could get around with a wheelchair. Since she was quite resistant with even being put into a rehab facility and just wanting to go home I challenged her mental competency with the doctor. My Mom has always been stubborn and did things her way so I was used to that attitude. A psychiatrist was called in to evaluate her. Since the psychiatrist concluded that she explained to my Mom what would happen and she said she understood they declared her competent. All along my Mom would tell me I’m going home after my rehab because I refuse to be put in a nursing home. There were several occasions where I challenged my Mom’s mental competency and again the nursing home would call in a psychiatrist and have my Mom declared competent. The social worker would always say my Mom was ok and could make decisions even though I found the social worker’s stories inconsistent on occasions. Last month my Mom wasn’t doing so well so I feel the issue of my Mom being a code patient came into play. The social worker brought it up to me and I explained to her that I was fully aware of what takes place during a code and I didn’t want my 90 year old frail Mom being subjected to that. It would be too aggressive and my Mom wouldn’t come back from the measures taken as a result of a code. I also explained that my Mom never wanted to discuss that subject with me and I had tried to several times. Since my Mom has always been declared competent to make decisions the times I challenged the subject I had no authority to make second guesses. At this point in time the social worker slipped and tells me that she felt it was best if the doctor discuss my Mom’s wishes since it was never discussed. She also said the doctor hasn’t come by to see my Mom is a few weeks so he needed to see my Mom. I pretty much go by information I find out from staff members caring for my Mom and bits and pieces I get from my Mom when I speak to her. It’s a puzzle at times and from another state (me living in Florida) with the COVID situation I’m about to loose my mind. I apologize in advance if there is a miscommunication in information. I’m trying to explain everything as best as I can under this stressful situation. I do not want my Mom to suffer but I also want to respect her wishes.
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AlvaDeer Sep 24, 2020
Rosie, this really isn't about the history of Mom. This is about one question. What should the advance directive for Mom say. Should it say "If Mom dies try to bring her back" or should it say "If Mom dies leave her in peace". That is the only subject or question here. Someone has to make this decision. Either Mom if the Doctor says she is competent to make it, or her next of kin if the doctor feels Mom doesn't understand. Let the Social Worker know that this is now in the hands of Mom and her Doctor.
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Is this about who has to sign a form, your mother, a doctor or a (non-existent) POA? If the social worker can’t sign it, and you can’t sign it, she may be genuinely concerned to find someone who can. It may be outside her authority to organise it herself without some sort of approval. Looking at this the other way around, if the social worker was organising this without getting your OK, you would probably be annoyed about that. See if you can talk (to her or the facility) about the easiest way to do this – perhaps you only need to put in a request.
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I think it is important here that YOU understand what happened in a code. You say you are not POA, but are you listed on the advanced directive? You SHOULD be. It is possible your mother will not be able to answer questions. Who will then act in her behalf? YOU are her next of kin. That means that YOU will have to do so. To leave her without an agent to act on her behalf is not fair to her at all. And it is not right.
Rosie, you say your Mother does not wish to discuss this. OK. That's fine. Do YOU wish to discuss this? Are you aware of what would happen to your poor mother in the event she dies and artificial resuscitation is attempted on her 90 year old body? I am a nurse, so I can tell you. Firstly, she will not be brought back. Secondly, in the miraculous event she IS she will go onto a ventilator and be tied so she cannot remove the apparatus. To be frank it is all quite gruesome.
Now, I am for Mom making this decision, but at 90 it is past time for her to do so. If she will not, then her doctor SHOULD visit her. Who normally calls her doctors for her exams and for her needs? Surely at 90 she has some. THAT person should see to it that the doctor discusses this with Mom and gets her instructions, whatEVER they are.
I don't understand your not being able to discuss this with her, but you seem to be telling me that she doesn't want that and you don't want that.
Worst comes to worst, this is what will happen. At some point, Mom will pass away. That will be witnessed or not witnessed. If she is found very dead and very cold it is unlikely that anyone will begin thumping on her chest. But if it is witnessed, without any other instructions, then it is necessary for staff to begin CPR. I have done this. I know what it is to push on the frail, fragile, birdcage of a senior's chest and to hear the bones snapping away under my hands. It is tragic. Yes, they don't feel it. They are gone, and in my experience they do not come back. But they won't really be breathing well again.
You tell us your mother is perfectly rational. Then the Social Worker can discuss this with her and help her with an advanced directive. However, your attitude leads me to believe she is FRIGHTENED to do that, convinced that you may come back after your Mom's death with "WHO HELPED HER with that" and other threats.
I am truly sorry if this sounds mean or brutal. But the fact is that this is something that should have been taken care of long ago. If you do not wish to address this, then fine. Let them know that you will do NOTHING and that Mom remains a full code blue. And then live with what will happen to your Mom when she peacefully slips away. And that's the end of that. If that is what you want, then that is what will happen. You say you don't want to talk about it. You don't want to call a doctor. Your Mom doesn't want to talk about it. Well, long story short, they cannot MAKE you talk about it. As the old song says "Whatever will be will be."
I wish you and Mom peace. The Social Worker is attempting to do her job as she SHOULD DO IT, as she is OBLIGATED to do it, and she is doing a good job. You have, I think posted about this before? If not, someone has a very similar story. It is time to make your decision and tell the social worker, WHATEVER that decision is. It is simple enough to say "I am very sorry. I know you have Mom's best interest at heart. But Mom is capable of making this decision and will not want me to make it; I will not be making this decision for her. I don't want to hear about this subject again. Unless Mom says differently she remains a full code blue". The end. Full stop.
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NeedHelpWithMom Sep 23, 2020
Wonderful information response. My mom’s doctor insisted that I make a living will for her as soon as I could.

Shortly after my discussion with mom’s doctor we had an ER visit due to a fall. a lovely, smart nurse explained everything to me about a living will. She prepared all of the paperwork and all I had to do was sign it.

When she went to the nursing home for rehabilitation after leaving the hospital, the social worker had all the necessary paperwork ready for me to sign.

The nurses and social worker made it very clear that resuscitations in 90 plus year old people should not be considered.

Sadly, not everyone feels this way. They don’t listen to the advice of a nurse who has first hand experiences with these situations.

I know a woman who ignored the nurse and asked that her dad be resuscitated. They did it. He suffered horribly through this ordeal and guess how much longer he lived, in pain, only about an hour.

I was so sad that she made that choice. It truly is selfish.

She said that she didn’t want her father to leave her. He was in his late 80’s. He was fine with dying. She wasn’t. So heartbreaking when incidents like that happens.

Thanks, Alva for your clear explanation regarding this matter.
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You are right. The decision to accept end of life resuscitation is very personal. It sounds like the social worker doesn't agree with the decision your mother made and would like the doctor to "inform" her into a different decision.

I think you are right. This is the social worker's job and the social worker's problem. I personally think she should have more respect for your mom's decision. When you are 90 and in a nursing home you lose so much control over your own life- your own body.

I don't agree with your mom's end of life decision for herself. That isn't what I would want for myself or for someone I loved. However, as long as she is competent to make a decision, the social worker should allow her to make her own decision and stop recruiting people to change her mind. I would tell the social worker that she should respect this very personal decision your mom has made.
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rovana Sep 24, 2020
I had the impression that the problem was that mom refused to make a decision, yes or no. Probably the social worker would not be calling if a decision was actually on file for mom. The box would be ticked, so to speak.
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Sit tight. Your mother can also sit tight. Unless you feel strongly that your mother *would* have decided to refuse CPR, all you have to do is nothing and there will be no DNR unless the doctor does meet with your mother, does manage to discuss the issue with her, is satisfied that she understands the matter and has the capacity to make a decision, and does support her in signing a DNR.

This is an emotive issue, but to comfort yourself remember that it's one that probably won't come up in reality. The very worst case scenario that your mother is subjected to a futile and brutal process while dying - God forbid such a thing - isn't actually on the cards.

I'm shaking my head, though, because there seems to be a real policy drive at large in the health and social sector to go h*ll-for-leather in making older people tackle this difficult ethical - and of course deeply personal - decision. On every support plan, and we have up to six in each client's folder, the presence or absence of a DNR form on the client's premises is noted as the very first point. And we might only be there to help her fix her breakfast! The reason I mention this policy question is that it might explain why the social worker is being like a dog with a bone about it; possibly, too, the doctor has resisted her attempts to get him to force the issue with your mother; and meanwhile maybe the social worker is coming under pressure from her seniors to get it done.

I'm curious, just to go back a bit. Your mother is competent. You do not have MPOA. The social worker must therefore be aware that your mother's doctor has no justification for discussing her care or treatment with you? You can make a request to him, sure, but you have zero authority.

If she calls you again, you might ask her why she feels the need to press your mother on this subject seeing as your mother has already made her views clear. Your mother has a right to decline to discuss it further and ought not to be harassed about it.

PS As a general rule, you wouldn't want any frail, ill, elderly lady to be subjected to CPR, of course. If you do know the doctor to speak to, and you think highly of the doctor's communication skills, you might consider asking him if he's prepared to talk it over with her. I remember my mother's GP responded to my agitating about getting a document in place by calmly printing off information for her to read at her leisure (no of course she didn't!). A doctor experienced in elder care is never going to be tactless or a bully about this.
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If your mom goes into cardiac arrest without her wishes being clear, they'll have to do CPR on her and will break every one of her ribs and possibly puncture a lung doing it. That's how violent CPR is when done correctly. You don't want that done to a 90-year-old.

A nurse had that conversation with me 30 years ago when my grandfather was in the hospital, and I was horrified. I had to talk to my grandmother about it and she made the decision to let him go. He died about two hours later -- peacefully.

The social worker is 100% correct -- this needs to be addressed. You also should have a POA, not because you'd immediately take over your mom's affairs, but because it's necessary to have when she can't handle them. If she goes into a coma, she can't make a medical decision and if you don't have a POA, who will make that decision for her? The hospital might not think you're the right person.

I think you and your mother are woefully unprepared for the future and should absolutely take care of these things. She needs a POA, an advance medical directive (living will), and a will and/or trust. Get her with a trust and estate attorney now while she is still competent, because it'll be a nightmare if she becomes incompetent and she doesn't have any of these documents in place.
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