The nursing home calls me to ask if a decision was made on whether my Mom is a code or not. Any advice?

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anonymous999770 Asked September 2020

The nursing home calls me to ask if a decision was made on whether my Mom is a code or not. Any advice?

A few weeks ago the social worker from the nursing home my Mom is a resident in called me. She asked me if a decision was made as to what directives were made for my Mom. Mind you, the entire time my Mom has been a resident at the nursing home she was declared competent to make her own decisions by the psychiatrist and social worker. Now since this phone call the social worker is stating that my Mom isn’t competent. I explained, very calmly, to the social worker that she (the social worker) has said to me in many conversations that she felt my Mom was confused at times but for the most part was competent. I feel that my Mom is beginning to show signs that her health is not where it should be (considering her situation) and they’re covering there asses! It upsets me because I’ve said with frequency that I have great conversations with my Mom and other times my Mom is altered. I get assured that it’s the UTI, or the change of lifestyle, or she was sleeping, etc., etc. If they’d only be truthful with me it would make this situation a bit less difficult. I’ve come to terms with my Mom’s possibly passing. She’s 90 years old and she’s not in the best of health. She lived alone up until she fell in her apartment but she led a relatively active life. She was still going to the grocery store across the street where she lived and visited her friends in her apartment building. When she fell in her apartment she had to be placed into a nursing home. She never wanted to be in a nursing home and she refused help when I wanted to get some for her (home healthcare). I have 2 living siblings who take little to no part in my Mom’s life. I’m left (not because I’m forced to) handling my Mom’s situation and most of her life before she entered her golden years. She was tough on me as a Mom and even though I could have held a grudge it’s not in my being. I love her unconditionally. So this is where I’m left. Trying to get my siblings to take part in the decision as to whether my Mom should be a DNR or not. What if they don’t agree with my choice? I’m the one listed on the emergency contact list and who the facility always calls for anything regarding my Mom. My Mom lives in New Jersey and I live in Florida. I’m in dire need of help. Any advise or words of wisdom please?

Advance Directive Care Decisions Do Not Resuscitate (DNR)

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score 0 · Answer 1

Its not an unreasonable request of NH to want to establish directives as to what the staff does in the event of a cardiac arrest. It’s standard operating procedure.

The staff interact with her daily. Be straight up with the SW and ask her what has changed since you’ve been told your mother essentially had no deficits up until now. Don’t be afraid to get your siblings involved either. She is their mother too. If they bow out at least you know where they stand. Remember they’ll still be there after your mother passes and if you want to keep any relationship with them unity in making the decision will assure this.

The longer you waiver could end up being detrimental to your mother in the sense that if she arrests they will try everything to bring her back.

It sounds to me that your mother vacillates between being aware and being confused (if that’s what you mean by “altered”). This can very well be dementia exhibiting itself.

My advice is discuss it with her in a general conversation. Explain that after all she is getting older but it’s a decision we all inevitably need to face. We all pass away. Ask her to assign POA as well. This can be arranged at the nursing home with an attorney. See how mom reacts.

This is, of course, if you feel she is competent enough to carry on this conversation. I have my doubts.

If she can’t have the above conversation with you because she doesn’t understand then you’ll have to confer with your siblings like it or not.

Someone needs to make the decision because the staff will code her. Yes it’s very hard to discuss death but at her age it’s a very real possibility.

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score 0 · Answer 2

I'm getting to really dislike the terms 'no code' & 'DNR'. I know they are just words... but to me they conjur a concept of *witholding* vital treatment.

At advanced age, as Alvadeer explained, CPR is brutal. I don't see it as adding vital treatment - but actually adding futile treatment.

I much prefer the terms 'advanced care plan' or 'advanced directive'. The focus seems more on what is acceptable & what is not.

Do you want all measures taken to restore/preserve life, despite any pain this may cause? Or would you prefer to be kept as comfortable as possible & avoid painful, invasive options?

I don't think you need to waste time convincing siblings one way or the other. Just a simple chat to Mother, or if you you prefer, arrange a third party like an experienced pastoral carer or church elder to be present. Yes it can be hard to bring this up, but the benefit is aiming to adhear to your Mother's own wishes. The burden will be lifted from your shoulders.

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DNRs are usually meant for terminal cases. People who have Cancer, CHF, etc, that only have a few months or weeks left. Why resuscitate them just to have them suffer. There comes a time you and they just want to let go. With my Mom, her Dementia had progressed where her body was shutting down. Resuscitation would have been cruel.

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score 2 · Answer 3

RosieT I think you need to be more direct with the nursing home staff, tell them that no one has the legal authority to make that decision and that they need to talk to your mother about it. Frankly if the RN or DON in a nursing home does not know how to bring up this conversation with a resident they are in the wrong profession, it IS part of their job.

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Thank you cwillie. I understand and agree with what you said. It frustrates me because I’m constantly told my Mom is capable of making decisions every time I’ve brought it up. I’ve been told their psychiatrist on staff has evaluated my Mom several times and has declared her competent. Now because the issue of her being a code patient I’m getting asked to make the decision. I felt at a certain point during my Mom’s residency at the nursing home that she was altered during several conversations. I expressed my concerns every single time. Then I’d get told they’d call in the psychiatrist to evaluate her. Those handful of times she had a UTI and that would be the cause for her confusion is what I was told. I would have great conversations with my Mom for the most part but again there were times she just wasn’t herself. This was always my concern and I’d express them every time I had them. Of course this is all done over the phone because I live in Florida and my Mom lives in New Jersey. I’m limited to what I can and can not do. Today I was very stern with the social worker and told her this was no longer acceptable. I needed the psychiatrist to speak to me and tell me all of her findings. No more he said she said. So as of today I’m awaiting a call from the psychiatrist. This whole situation is beyond frustrating and with COVID we aren’t permitted to enter the facility if I even had a proxy or went there personally. I’d have to fly to New Jersey, which air travel now is risky because of COVID and possibly not be able to get anywhere with the situation. I can’t afford to hire an attorney to handle this situation either. It’s just a mess. All I know is that I do not want my Mom to go through aggressive measures if she codes. At 90 years old and in her fragile state it would be too much for her to handle. When the times comes of course I want her to pass in peace.

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score 1 · Answer 4

DNRs are now a big thing in NJ. Used to be a form you filled out saying you did or did not want to be resuscitated. Your Dr. signed off on it. You had a copy available for EMTs. Like this: https://eforms.com/dnr/new-jersey/

Now its green and with a few more questions. For some reason I can't find the updated one. But each facility Mom was in, I had to do a new one and the attending signed off on it.

I would ask what form they are using. Maybe ask to have it emailed.

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JoAnn29 the problem is that I do not have POA. Also I have 2 siblings. While I’m on the emergency contact list and first person the nursing home calls, I still do not have the authority to make the DNR decision. The social worker told me that it has to be a mutual agreement among the 3 of us. I’m not the eldest. My sister is and she hasn’t been an active participant in my Mom’s life. I’m the only one who has made sure my Mom has been taken care of. This is such a difficult situation. I just know I do not want my Mom to suffer. I feel taking drastic measures to resuscitate my Mom if her heart stops will be too brutal for her fragile body. My siblings feel otherwise.

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score 1 · Answer 5

Does anyone have Power of Attorney for healthcare decisions for your mother? This is the legal document she should have done for when she could not make decisions for herself. If this wasn’t done, I’d say time to talk with her, on a day she is most clear, I’d bet she’d tell you she doesn’t want extraordinary measures to attempt to bring her back if they were needed. Few people at her age would as the process is pretty brutal on a person

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Thank you Daughterof1930 for your response. There is no POA. Since my Mom has been declared competent on several occasions as evaluated by the facility psychiatrist a POA wasn’t ever needed until now. Honestly there have been no decisions my Mom has made up until now that has been cause for concern. She signed the paperwork to remain in the facility as a resident. That was a major stepping stone because she came to that realization that she needed constant medical care. Now I feel that because the facility sees a change in my Mom’s appetite and the lack thereof they think she may be declining. Since I’m the only one making the secondary decisions after my Mom has made any I’m being asked about her code status. My siblings are in conflict about what needs to be done and I’m the one always handling everything. Their very little of taking part of in my Mom’s life has always been on my lap. Again, I don’t feel obligated because it’s what I do as her daughter. My Mom’s directives were never discussed during the time of her being admitted as a resident. There was a very short time where if she was willing to accept home healthcare she could possibly go home. Then her doctor decided my Mom needed to remain a resident and directives still were never discussed as my Mom was always declared mentality competent. With the COVID the situation is even more difficult. No visitors. I live in Florida and she lives in New Jersey. It’s that much more difficult because travel is not recommended and I still can’t visit my Mom if I was to travel to New Jersey. Her facility has been designated non COVID and that’s been a huge blessing. She’s been tested several times even though she’s never left the facility since she was admitted. Another blessing that she has been negative since day 1. So that facility is very strict with a no visitor policy. I’m beyond overwhelmed.

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score 2 · Answer 6

You say your mother is competent most days. Then speak to her about this. Why is death such a difficult subject for us. I am assuming you know what a no code means. Essentially it means, if your mother dies does she want us to attempt to bring her back. Now, as a retired RN I can tell you what CPR would do to the fragile chest of a deceased elderly woman, because I have been there and done that. It would shatter her fragile chest bones. As she would already be gone, that won't hurt. But it won't help either. That is the awful sad truth.
So you might, leaving off my graphics say "Mom, the facility has called me and they would like us to fill out your advanced directive. That means, if something should happen to you unexpectedly, and you should pass away in the night, or even at the breakfast table laughing at Fran's jokes, do you want them to try to bring you back. Do you want them to pound on your chest or to breathe air into your chest. Would you ever want to be on a ventilator? Or would you like to be allowed to be at peace and at rest?
This is an easy one. Do whatever Mom wishes. IF you are her MPOA and you already KNOW the answers to this, having long discussed such things with your Mom, then you can do the forms yourself. But this is your Mom's decision.
Let me ask you, in all this time, have you no idea what your Mom would wish. Old nurses and their families DO talk of this, and usually do know what family members would want.
My brother died in May. Prior to that he was in assisted living for one year. We often discussed that he had wished he didn't have to go there. He said "It's like when I was in the army. Didn't want to go there, but made the best of it". He didn't wish to go on in any artificial way. I knew exactly what he wanted.
I doubt sincerely that your 90 year old Mom would like to be brought BACK from the peace of death. But occasionally they will surprise you with their answers. ASK HER. NPR recently had a segment with Seniors saying "Why do they not just ASK me".

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AlvaDeer if only it was that easy (so to speak). My Mom was never one to discuss death for any reason whatsoever. Like it was never going to happen. She is the kind of person who buries their head in the sand then deal with certain issues. It’s always been that way. When my older brother was dying of cancer my Mom still believed that he would beat cancer. She believed her faith was stronger then the disease. I’m a religious person but I’m also a realist and know that there are certain things in life that are 100% inevitable. My brother fought cancer for 6 years but he was also blessed with a most of those 6 years enjoying them. He lived! He didn’t let the disease define him. However the last year of his life his health became very bad. The disease was taking over. The last week of his life his doctor said get the family together and have his affairs in order. My Mom still believed my brother would beat cancer. So in this situation my Mom would not be receptive to a conversation about her own passing. It’s very sad and beyond difficult because I know she’s not going to have that conversation with me let alone allow the conversation. I don’t want her to suffer or be put through “brutal” drastic measures if her heart stops beating. She’s fragile and I know she wouldn’t come back from that. Those are my feelings but at this point the facility says it has to be in full agreement with my siblings. Back to square one. I’m in the middle when my siblings have taken little responsibility and haven’t really been participating in my Mom’s life. No POA either. Overwhelmed doesn’t even describe how I feel.

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The nursing home calls me to ask if a decision was made on whether my Mom is a code or not. Any advice?

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