Assisted Living and DNR (Do Not Resuscitate)

Posted by fatherscaregiver @fatherscaregiver, Jan 27, 2021

Hi! My dad moved into an assisted living facility about six months ago. At the time of admission they asked if he had a DNR. He asked to be a full code and worked. He is fully aware of his medical conditions and fully understands his choice between being a full code or a DNR. I respect his decision as it is his life and he is fully capable of making the decision. He does have medical problems, he has had a heart transplant and now has Parkinson’s. He moved into the assisted living for safety reasons. He had several falls leading up to the move. One of the nurses on staff called me today about a minor issue, no big deal. They call about everything! I do understand they need to keep the family informed. However after calling me about his hemorrhoids (they call about everything) she told me I should consider changing his advance directives to a DNR. I was a little taken back by this for a couple of reasons. I feel like this might be overstepping on her part? Is she somebody that should be saying this to me? Should this be coming from somebody in administration, social worker, nursing director? The other thing is my dad is of sound mind, involved in his health care and he wants be a full code. So, I go back to why is she asking me to change his directive to a DNR? I should add I don’t necessarily disagree, if I was my dad I would be a DNR, but that is not what he wants. Looking for what others might think, am I just being overly sensitive?

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@fiesty76

@ess77, I cannot imagine a more valiant warrior fighting the many alligators you and your son have faced, Elizabeth. It is both heartwrenching that you both have struggled so long without receiving the treatments that would enhance your son's life and heartwarming that you finally have hope from Mayo Clinic!

You have to be exhausted from your efforts, the grief for your son from his loss of career and chronic pain. The physical and emotional toll for you both deeply touches all of us who have served as primary caregivers. I am celebrating that he will begin receiving in-home help that is so needed and will give you some relief as well. "Just being there" for him is sometimes the best gift one can give another. I'd say he was a very lucky fella indeed to have you at his side!

Please keep us posted on how treatments go for both of you. May hope, peace and less stress in each day find you giving yourself more time for restorative healing as well. It will take you time to relax from the hypervigilence required over such a long period of time so be very good to yourself and liberal with self-care now that more assistance is on the way.

Eager to hear how the new bed works for you!

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Hello, fiesty76. You are such a joy. Your thoughts and prayers have buoyed me and given me comfort in the knowledge that I'm really not alone. We're really not alone. I cannot explain to you what a remarkable difference you and the others from Connect have made in my life. This last 6 months or so have been troubling, frightening, challenging. I was running out of hope for Rob's future. I am indeed exhausted from these years, it's taken it's toll, but as I've found Mayo and Mayo has brought so much healing within my body and spirit, I've found new strength from within. I have hope. We are seeing the beginning of a breakthrough in his hell…..

He saw the Mayo dystonia specialist, a leader in this field…..and is now officially his patient. He is scheduling Rob with other departments and specialties for diagnoses, treatment plan. He will take over his botox injections, the one treatment that gives him some relief. Now he will get the treatment from the best!

How wonderful is this!

I was watching my son withdraw into himself and fearful I was losing him. I've spent several days with him helping him understand the doctors with whom he'll be working are special, care and tops in the fields. They can be trusted. Today, I began to actually believe this is happening. Hope has arrived.

Thank you for giving your gifts to me. The support I felt from you and the others has given me strength to stay strong and calm. I can almost breath. Almost hope.
Blessings to you, from me.
And, thank you.
elizabeth

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@ess77

Hello, fiesty76. You are such a joy. Your thoughts and prayers have buoyed me and given me comfort in the knowledge that I'm really not alone. We're really not alone. I cannot explain to you what a remarkable difference you and the others from Connect have made in my life. This last 6 months or so have been troubling, frightening, challenging. I was running out of hope for Rob's future. I am indeed exhausted from these years, it's taken it's toll, but as I've found Mayo and Mayo has brought so much healing within my body and spirit, I've found new strength from within. I have hope. We are seeing the beginning of a breakthrough in his hell…..

He saw the Mayo dystonia specialist, a leader in this field…..and is now officially his patient. He is scheduling Rob with other departments and specialties for diagnoses, treatment plan. He will take over his botox injections, the one treatment that gives him some relief. Now he will get the treatment from the best!

How wonderful is this!

I was watching my son withdraw into himself and fearful I was losing him. I've spent several days with him helping him understand the doctors with whom he'll be working are special, care and tops in the fields. They can be trusted. Today, I began to actually believe this is happening. Hope has arrived.

Thank you for giving your gifts to me. The support I felt from you and the others has given me strength to stay strong and calm. I can almost breath. Almost hope.
Blessings to you, from me.
And, thank you.
elizabeth

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Thank you for letting me squeeze in here. This post sounds a little more positive. Maybe help is truly on its way.
May you be content and at ease.
Chris

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@ess77

Hello, fiesty76. You are such a joy. Your thoughts and prayers have buoyed me and given me comfort in the knowledge that I'm really not alone. We're really not alone. I cannot explain to you what a remarkable difference you and the others from Connect have made in my life. This last 6 months or so have been troubling, frightening, challenging. I was running out of hope for Rob's future. I am indeed exhausted from these years, it's taken it's toll, but as I've found Mayo and Mayo has brought so much healing within my body and spirit, I've found new strength from within. I have hope. We are seeing the beginning of a breakthrough in his hell…..

He saw the Mayo dystonia specialist, a leader in this field…..and is now officially his patient. He is scheduling Rob with other departments and specialties for diagnoses, treatment plan. He will take over his botox injections, the one treatment that gives him some relief. Now he will get the treatment from the best!

How wonderful is this!

I was watching my son withdraw into himself and fearful I was losing him. I've spent several days with him helping him understand the doctors with whom he'll be working are special, care and tops in the fields. They can be trusted. Today, I began to actually believe this is happening. Hope has arrived.

Thank you for giving your gifts to me. The support I felt from you and the others has given me strength to stay strong and calm. I can almost breath. Almost hope.
Blessings to you, from me.
And, thank you.
elizabeth

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@ess77, Just as the saying: "each one help one" can make a true difference, your shares, Elizabeth, have given others who follow your posts courage to continue despite the deep disappointments that come when anticipated hope for professional help is lacking or too long in arriving.

Following my first Moderna vacc, it took several days for me to actually believe that what had happened so quickly and unexpectedly had truly happened: I'd actually received more protection from Covid. You must also be feeling stunned that now you have a professional medical partner who will oversee and coordinate your son's health care. So happy that support and help are on the way for you and your special son. Wishing you both the best going forward.

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@ess77, Just wanting to know if life is going more smoothly for you and your dear son? How is the new bed working out for you? Are the workers coming to your son's home helping and making a difference for both of you? Have new coordinations with the health providers and doc teams made improvements? I've had you both on my mind and wanted you to know.

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@fatherscaregiver

@merpreb I did speak with the social worker and nursing administrator early this week. They did explain the nurses know the residents the best, (in the facility) but also agreed that when calling about a hemorrhoid issue it would be an inappropriate time to bring up DNR status. They did say the nurses will go to them (social worker and administrator) if they feel there is a need and then a care conference will be scheduled to discuss it. They are going to address this with all nurses about when and how DNR status changes are addressed with the family to prevent this from happening again. I am hoping it was a lapse in judgement and will try to give the benefit of doubt but will also keep an eye on it best I can. I do understand that with the ongoing Covid pandemic procedures and normal meetings have not been occurring as they usually would. They were very apologetic and understood my concern.

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@fatherscaregiver, just checking in. How are you and your father doing?

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@colleenyoung

@fatherscaregiver, just checking in. How are you and your father doing?

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@colleenyoung Good Morning and thank you for asking. He is hanging in there. We started palliative care and looking forward to working with the nurse practitioner. We are trying to tackle his depression and basically making him get involved in his life instead of hiding in his room 24/7. Hoping to see some positives.

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My father will be 102 in May. Mom died 2 years ago. He’s mostly deaf and has lost much of his sight. He is in assisted living and adamant about his DNR. Tonight a tech told me his file was marked with what she understood to mean FULL CODE — the OPPOSITE of DNR. I called attention to this with the 2 siblings who are his official medical advocates. Essentially I was told the DNR is in his file and to stop complaining about the facility, as this will only lead to anger and pain. Am I crazy?! Shouldn’t the STAFF understand he has a DNR? If not, then his wishes mean nothing. He could be found unresponsive and they wouldn’t let him go. I thought DNR had to be posted in his living space.

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This happened to my eighty year old mother, who was in rehab following a heart attack. A nurse asked her to sign a DNR. Mom told her she wanted to pray about it first. When my brother visited later that day (he is an attorney), he told my mother to throw it away. Mom had eight more good years before she died.

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@chadwyck

My father will be 102 in May. Mom died 2 years ago. He’s mostly deaf and has lost much of his sight. He is in assisted living and adamant about his DNR. Tonight a tech told me his file was marked with what she understood to mean FULL CODE — the OPPOSITE of DNR. I called attention to this with the 2 siblings who are his official medical advocates. Essentially I was told the DNR is in his file and to stop complaining about the facility, as this will only lead to anger and pain. Am I crazy?! Shouldn’t the STAFF understand he has a DNR? If not, then his wishes mean nothing. He could be found unresponsive and they wouldn’t let him go. I thought DNR had to be posted in his living space.

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@chadwyck Welcome to Mayo Clinic Connect! You pose an important question, regarding placement of DNR paperwork.

Do your siblings oppose the DNR wishes of your dad? Would that be at the root of causing anger and pain? I wonder if you could discreetly inquire at the facility, how they handle DNR paperwork. From what I was able to look up, this information is ideally placed near the patient. And perhaps the technician you spoke to is misinformed as to the markings on his file.

I will be interested to know what you are able to find out.
Ginger

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@gingerw

@chadwyck Welcome to Mayo Clinic Connect! You pose an important question, regarding placement of DNR paperwork.

Do your siblings oppose the DNR wishes of your dad? Would that be at the root of causing anger and pain? I wonder if you could discreetly inquire at the facility, how they handle DNR paperwork. From what I was able to look up, this information is ideally placed near the patient. And perhaps the technician you spoke to is misinformed as to the markings on his file.

I will be interested to know what you are able to find out.
Ginger

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My 8 siblings have voiced no opposition to the DNR. Dad is not mentally compromised, so makes his own decisions. The facility has responded to say they’ll do better making sure staff understand his wishes. That STILL does not adequately address the issue. So all bets are off if the staff member who finds him one day didn’t have it personally explained to him/her.
The DNR should be POSTED. I don’t understand why that is not done. Even EMS requests that it be posted. This shouldn’t be a fight.

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@chadwyck

My 8 siblings have voiced no opposition to the DNR. Dad is not mentally compromised, so makes his own decisions. The facility has responded to say they’ll do better making sure staff understand his wishes. That STILL does not adequately address the issue. So all bets are off if the staff member who finds him one day didn’t have it personally explained to him/her.
The DNR should be POSTED. I don’t understand why that is not done. Even EMS requests that it be posted. This shouldn’t be a fight.

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@chadwyck In our family, there was a divide between siblings. Those who honored my dad's wishes for DNR, those who would fight it. Our dad kept his mental faculties right to the end, like your dad is. The rebel in me, if in your position, would make a post to be kept near his bed, perhaps decorated to stand out, that states "DNR" , and then hang it where it can be seen!

I applaud your desire that your dad's wishes be understood and followed through!
Ginger

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In our state, we have a MOLST form that tells providers whether my mother, who is in assisted living, wants resuscitation, artificial nutrition, artificial ventilation or even transport to hospital. (I may be missing something else on the form, that is what I remember.) It is bright pink and is posted in her room and a copy is on her desk. She has dementia so I have an invoked proxy and make decisions for her.

She was briefly on hospice and they recommended having the maximum limits on what anyone could to to prolong her life. Because I could then reduce those limitations, but it would be harder to add them in and, for instance, ventilator could be initiated before I could stop it. With the MOLST, the facility always has to call me when they want to send her to the hospital. I have stopped at least two ambulance trips in the last year, one for nosebleed and one for vomiting. But I okayed a trip for inability to breathe due to severe anemia, for which she had infusions. This year, I am not going to do that either.

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