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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@ess77

Hello, fatherscaregiver and all. What a great discussion pertinent to so many of us. I come into this from 2 very different life experiences and viewpoints.

First, I was my precious mother's caregiver for 12+ years during her long, difficult journey through Altzheimers. I was with her every day, as I moved into a condo in the same area……as a normal daughter, we decided it best for me to live near-by, 2 streets apart….within easy walking distance. Perfect set-up for us at the time. As she progressed through this illness, she lived w/me for a few months until I moved her into assisted living so she could live independently but overseen by caring professionals. I was a small business owner at the time and this was our best determination.

I took care of her laundry at first

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Well, friends……I just spent 15 minutes finishing the above note and lost it. Guess I may need to rest from the stress of the last several days, but have to go to Mayo for the rest of the day.
Just know, you are so important in your father's care, his life. I was a 12+ year caregiver. It is a lovely honor and an opportunity you'll cherish forever. Sit with your father, chat about things and family and history and his life and look at pics…identify folks…he may be the last in the family with the knowledge of these people and things. Learn everything you can from him. He's lived a long life and knows so much that may help you. Certainly adds interest to your life and understanding of family members….

Any children around? Be sure they have the chance to visit and get to learn from him….after covid, meet and enjoy his new friends….share. Have meals with him and his friends. Don't lose this precious time!

I was for 15+ years in retirement community administration, several years as an administrator. From behind the desk, it's important to meet and get to know the families of the residents. If you have an issue with something or someone, stop by and share, briefly, the circumstances so he/she will be in the know and can resolve the issue. Remember, too, these facilities are licensed be the state. They have large, thick books full of rules and regs from the state they must follow. They have regular inspections to ck they are indeed following precisely. So, you are helping him have a better community. By helping each other, all win.

Be sure to stick your head in the door and let the secretary know about something good that happened. That's a good thing.

Well, those are some thoughts that i hope help a bit. As we say in the lovely south, "Ya'll take care, now!"

I'm off to Mayo. It a lovely 64 degrees, clear and sunny, after several days of cool rain – in the 50's. Twill be good to get out, drive 15 miles and enjoy the day. Today are tests and a doc appt. Tomorrow is an endoscopy…Barrett's Syndrome, hernia, reflux, nodul????, who knows what else…at least I'll get a good little rest tomorrow! Then, on to fix anything fixable, spend the next week finishing the yucky stuff and hope for a time of rest. Get back to the heated pool and walking….get my new mattress the 16th! From Macy's…goodie! Great mattress clearance and close-out! Tell you more after a few nights sleep!

Blessings, all. elizabeth

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@fatherscaregiver

@sueinmn, Thank you! I didn't want to say anything if it was just me overreacting. I really needed confirmation that she had over stepped her bounds before bringing it to the attention of the Administrator.

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@fatherscaregiver, As the primary caregiver for my mom and sister for years, I used to laugh that I was the CEO, CFO and first line supervisor for a non-profit group of extended family. My mom and sister both had strong desires for "quality of life" vs "quantity of life". I had medical power of atty for both and made certain that all medical providers had copies of their DNR's. Many a time over the years, I had to intervene to assure they were receiving the best care possible.

Although mine was the reverse desire of your dad's desire for full code, I so agree with what @sueinmn responded. The nurse was totally out of line in her call and recommendation to you. I wouldn't blink before calling and reporting her to the administrator.

Thank goodness, your dad has you to stand up for him! It took far longer for me to learn to advocate for myself in questioning docs or treatments but whether for the ones in our care or for ourselves, we have every right to push for best care practices.

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I'd like to take this very valuable discussion in a slightly different direction. When do you review an aging loved one's or you own DNR orders? There's never an optimal time, but when is a good time to talk about the best of endings?

Do Not Resuscitate makes me realize, once again, that words really matter. For many people, the thought of not being resuscitated is unthinkable. Often people equate it with doing everything or doing nothing. But so much more has to be considered. Resuscitation can be a very invasive and rough intervention that may also include broken ribs, intubation and other interventions with additional repercussions. Thus for my father when he had late stage colorectal cancer with only months to live, a DNR was – for him and our family – the right choice.

For my mom, it's not right – yet. She's 81 and in great health. We've talked about the end and her wishes, but we haven't made a clear decision about DNR because there are still so many variables. I do, however, know which consequences she does not want to have to live with as a result of resuscitation. That will hopefully make choices easier if (when?) I may be forced to make them. It's a conversation we revisit every December and I learn a bit more about her every time. You may find this odd, but it has brought us closer together and it's a conversation I look forward to because we talk about the things we cherish about living.

What discussions do you have (or not) with family members?

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@colleenyoung

I'd like to take this very valuable discussion in a slightly different direction. When do you review an aging loved one's or you own DNR orders? There's never an optimal time, but when is a good time to talk about the best of endings?

Do Not Resuscitate makes me realize, once again, that words really matter. For many people, the thought of not being resuscitated is unthinkable. Often people equate it with doing everything or doing nothing. But so much more has to be considered. Resuscitation can be a very invasive and rough intervention that may also include broken ribs, intubation and other interventions with additional repercussions. Thus for my father when he had late stage colorectal cancer with only months to live, a DNR was – for him and our family – the right choice.

For my mom, it's not right – yet. She's 81 and in great health. We've talked about the end and her wishes, but we haven't made a clear decision about DNR because there are still so many variables. I do, however, know which consequences she does not want to have to live with as a result of resuscitation. That will hopefully make choices easier if (when?) I may be forced to make them. It's a conversation we revisit every December and I learn a bit more about her every time. You may find this odd, but it has brought us closer together and it's a conversation I look forward to because we talk about the things we cherish about living.

What discussions do you have (or not) with family members?

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My wife and I had such conversations and chose place such orders available for our children to make. These have become part of our living trust. We thought it prudent to look ahead and asked "what if" questions which led us to make our decisions regarding DNR.
Additionally, we discussed this with our adult children and continue with an annual review. Not only do we want quality of life but we want to assist in making of hard choices now when we can do so. Once when we are irreversibly unable to chose, we don't want to place such a heavy, very difficult burden on others.
We are very glad someone mentioned the subject of DNR orders. It allowed us to think, to counsel, and to discuss this decision point before a decision had to be faced.

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@victorkach

My wife and I had such conversations and chose place such orders available for our children to make. These have become part of our living trust. We thought it prudent to look ahead and asked "what if" questions which led us to make our decisions regarding DNR.
Additionally, we discussed this with our adult children and continue with an annual review. Not only do we want quality of life but we want to assist in making of hard choices now when we can do so. Once when we are irreversibly unable to chose, we don't want to place such a heavy, very difficult burden on others.
We are very glad someone mentioned the subject of DNR orders. It allowed us to think, to counsel, and to discuss this decision point before a decision had to be faced.

Jump to this post

Such good points @victorkach. While one can't possibly foresee all the "what ifs," talking about preferences and what you and you wife value and what quality of life means for you, will help future decision making. It helps ease burdens and possible difficult choices in the future. Do your adult children find these discussions difficult to have?

REPLY
@colleenyoung

I'd like to take this very valuable discussion in a slightly different direction. When do you review an aging loved one's or you own DNR orders? There's never an optimal time, but when is a good time to talk about the best of endings?

Do Not Resuscitate makes me realize, once again, that words really matter. For many people, the thought of not being resuscitated is unthinkable. Often people equate it with doing everything or doing nothing. But so much more has to be considered. Resuscitation can be a very invasive and rough intervention that may also include broken ribs, intubation and other interventions with additional repercussions. Thus for my father when he had late stage colorectal cancer with only months to live, a DNR was – for him and our family – the right choice.

For my mom, it's not right – yet. She's 81 and in great health. We've talked about the end and her wishes, but we haven't made a clear decision about DNR because there are still so many variables. I do, however, know which consequences she does not want to have to live with as a result of resuscitation. That will hopefully make choices easier if (when?) I may be forced to make them. It's a conversation we revisit every December and I learn a bit more about her every time. You may find this odd, but it has brought us closer together and it's a conversation I look forward to because we talk about the things we cherish about living.

What discussions do you have (or not) with family members?

Jump to this post

@colleenyoung A sensitive subject, at best. End-of-life issues are not a favorite subject for many people. It means a hard look at our own mortality, and those of loved ones.

When I was working in my last career, management asked everyone to fill out emergency information to "have on hand" not in the Human Resources Department. Not only were they upset that my emergency contact was my sister, in another state ["We need someone local." "I am single, and she is the contact I have."], but I included DNR orders, which they said they could not /would not follow if I was to collapse at work.

For my mother, my dad put in place to "keep her comfortable only" as her body shut down after a long journey with Alzheimers and dementia. For my dad, he chose DNR, but that was never called into play, as he passed from the effects of COPD at age 96.

Almost 10 years ago I put together my medical directives and filled out a POLST form [Physician's Orders for Life Sustaining Treatment]. All costs for handling my death were paid for. I also filled out a 5 Wishes document https://fivewishes.org/ My husband and the person he chose as a partner in the medical directive, know I have a DNR in place, a POLST completed, and 5 Wishes done. I know my husband's wishes and have asked him to document it all, so there will be no stressful situations with his family. We have spoken about timelines, and of course have no clue what our respective expiration dates are! For me, it is important that what I desire is followed through, even if I won't be able to change anyone's mind.

I consider it to be my personal responsibility to have things documented for me, as I have seen how families can be torn apart by differing thought processes. My sister knows my thoughts, but other family members rally to another approach to it all. I use a MedicAlert bracelet, and the information there indicates DNR, also.
Ginger

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@colleenyoung

Such good points @victorkach. While one can't possibly foresee all the "what ifs," talking about preferences and what you and you wife value and what quality of life means for you, will help future decision making. It helps ease burdens and possible difficult choices in the future. Do your adult children find these discussions difficult to have?

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Thanks for your words, Coleen.
We've always tried to have inclusive conversations about our lives with our sons. So, bringing up end-of-life subjects was taken in stride with each of them. They were pleased that we were clear about our decision-making process and the choices we made. They were very at ease with the conversations and understood our intentions regarding the delegatkon of decisions regarding DNR orders. Additionally, they understood and agreed with what our desires were for when to apply DNR orders or when to prolong life (within reason, of course).

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@gingerw
My Mother didn’t have a DNR but her family & doctor were well aware of her wishes, & was in her trust & Health care directive.
Even so, when they asked me to sign a POLST, I believe it was. I knew her wishes but I couldn’t sign it. Eventually my brother convinced me to sign but it was the most difficult thing I’ve ever done in my life.
After they brought her back two or three times and when she woke up the next morning I explained all that happened and she said “just try and die around this place.” Even knowing her wishes, by me signing that document maybe I thought I would
be the one ending her life that I couldn’t bear that.
My friend said she's going to have a DRN tattoo on her chest but I told her they might think it could
stand for something else.
But it's always good to get your ducks in a row.
Take care,
Jake

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@jakedduck1

@gingerw
My Mother didn’t have a DNR but her family & doctor were well aware of her wishes, & was in her trust & Health care directive.
Even so, when they asked me to sign a POLST, I believe it was. I knew her wishes but I couldn’t sign it. Eventually my brother convinced me to sign but it was the most difficult thing I’ve ever done in my life.
After they brought her back two or three times and when she woke up the next morning I explained all that happened and she said “just try and die around this place.” Even knowing her wishes, by me signing that document maybe I thought I would
be the one ending her life that I couldn’t bear that.
My friend said she's going to have a DRN tattoo on her chest but I told her they might think it could
stand for something else.
But it's always good to get your ducks in a row.
Take care,
Jake

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I'm sadden to read your story . I think that was a brilliant idea about the tattoo.

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@victorkach

My wife and I had such conversations and chose place such orders available for our children to make. These have become part of our living trust. We thought it prudent to look ahead and asked "what if" questions which led us to make our decisions regarding DNR.
Additionally, we discussed this with our adult children and continue with an annual review. Not only do we want quality of life but we want to assist in making of hard choices now when we can do so. Once when we are irreversibly unable to chose, we don't want to place such a heavy, very difficult burden on others.
We are very glad someone mentioned the subject of DNR orders. It allowed us to think, to counsel, and to discuss this decision point before a decision had to be faced.

Jump to this post

@victorkach, I salute you and your wife for making decisions now that will make end-of-life decisions so much easier for your children and others later.

How much easier it would have been for me if we had known about and instituted DNR orders many years ago when my elderly dad was hospitalized for the last time following a massive, totally debilitating stroke which left him helpless and unaware the last 5 yrs of his life.

By the time I arrived, life saving equipment had been installed and my mom instructed me to make the decision about its removal. At the time, as emotionally difficult as the decision was, I knew beyond doubt that my beloved dad would not have wanted to continue as he was. Only later did I wonder why my mom shifted the decision to me, a very young adult with a new baby. Was it because she knew how close my dad and I were or was it because her grief made the decision so difficult? Regardless, it was what my dad would have desired.

Because it was so long ago and our family physician and close neighbor of decades knew the family well, my decision, along with my mom's agreement, was all required to remove the equipment. Today, without a DNR and documented written medical instructions, a mere vocal request might be handled far differently.

Years later, by the time of my mom's and sister's deaths, I was so grateful that we had discussed and had documents in place for their end-of-life desires. I made my "Right to Die" wishes known to my daughter years ago and those are incorporated in my legal documents. I am especially grateful that Colorado is one of only 7 current states that make assisted suicide legal.

A few years ago, I accompanied a close friend to a series of classes held at one of our large hospitals on "How to Plan Now As We Age". We were shocked at the number of elderly couples who had not discussed nor given thought or plan to their final wishes.

Whatever the individual preference or desire may be, I wish all could read, consider and act upon the importance of your last sentence, Victor. Regarding the subject of DNR orders: "It allowed us to think, to counsel, and to discuss this decision point before a decision had to be faced" . Thank you.

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@tunared

We had similar experience with my mother-in-law. She was in a nursing home and her doctor had her go into the hospice program. The hospice program took over her care in the nursing home. After 5 days, she was so over drugged, she didn’t recognize her daughter or me, so we fired them and the nursing home took great care of her for almost 4 weeks before she passed. We would never want to go into a hospice program.

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@tuneared, I regret that your experience with the hospice group for your mil was so counterproductive. Both my sister and closest friend living in different parts of the state received wonderful, compassionate care from Hospice. Just as not all plumbers are equally skilled, there are professionals and organizations which do not measure up. In my sister's small town, Hospice had to come from 75 miles away; in my friend's city, there were more than one Hospice groups to choose from.

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@ess77

Well, friends……I just spent 15 minutes finishing the above note and lost it. Guess I may need to rest from the stress of the last several days, but have to go to Mayo for the rest of the day.
Just know, you are so important in your father's care, his life. I was a 12+ year caregiver. It is a lovely honor and an opportunity you'll cherish forever. Sit with your father, chat about things and family and history and his life and look at pics…identify folks…he may be the last in the family with the knowledge of these people and things. Learn everything you can from him. He's lived a long life and knows so much that may help you. Certainly adds interest to your life and understanding of family members….

Any children around? Be sure they have the chance to visit and get to learn from him….after covid, meet and enjoy his new friends….share. Have meals with him and his friends. Don't lose this precious time!

I was for 15+ years in retirement community administration, several years as an administrator. From behind the desk, it's important to meet and get to know the families of the residents. If you have an issue with something or someone, stop by and share, briefly, the circumstances so he/she will be in the know and can resolve the issue. Remember, too, these facilities are licensed be the state. They have large, thick books full of rules and regs from the state they must follow. They have regular inspections to ck they are indeed following precisely. So, you are helping him have a better community. By helping each other, all win.

Be sure to stick your head in the door and let the secretary know about something good that happened. That's a good thing.

Well, those are some thoughts that i hope help a bit. As we say in the lovely south, "Ya'll take care, now!"

I'm off to Mayo. It a lovely 64 degrees, clear and sunny, after several days of cool rain – in the 50's. Twill be good to get out, drive 15 miles and enjoy the day. Today are tests and a doc appt. Tomorrow is an endoscopy…Barrett's Syndrome, hernia, reflux, nodul????, who knows what else…at least I'll get a good little rest tomorrow! Then, on to fix anything fixable, spend the next week finishing the yucky stuff and hope for a time of rest. Get back to the heated pool and walking….get my new mattress the 16th! From Macy's…goodie! Great mattress clearance and close-out! Tell you more after a few nights sleep!

Blessings, all. elizabeth

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@ess77, I'm just catching up with posts and want to salute you for your work as a retirement home administrator. Your suggestions and tips are so worthwhile for all of us with loved ones in an off-site facility.

Although my dad lost all ability to reason or help himself physically during his five years in a nursing home, he was long remembered there following his death for his outlandish and persistent humor that could bring all to laughter and tears. Pretty sure my mom was also long remembered for her daily visits and small token gifts of gratitude to the staff. Much later, we hired one of his nurses to be the primary home caregiver for my mom. She shared many stories of how my mom "kept everyone on their toes" while also acknowledging the efforts of facility staff.

Did you have another good weather day for your doc appt. and tests? Hope you'll find more "fixable" treatments and that you've had a few splashes in that wonderful heated pool. If your new mattress helps as much as mine did Elizabeth, you may find it harder to get out of bed to post but do it anyway because we'll be wanting to hear from you. Smiles

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