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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@gingerw

@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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@gingerw, Yes! to all you shared. I also completed the fivewishes document along with other POLST, DNR and "Right to Die" documents to have included in my last updated medical and trust plans.

It was surprising and disappointing to learn from my estate atty. that TX does not legally recognize the 5 Wishes documents. He agreed to include them as a "reference" only in my file and my daughter also has a copy. Different states have different rules and I haven't looked into how my daughter's new state of CO regards them. However, I am relieved that hers is one of seven states that now legally recognizes the "right to die" statutes.

Until the recent death of my closest friend, she had always been the "local emergency contact" listed for docs and hospitals and my daughter listed second. Like you, I also also wear a medical alert and I.D. bracelet.

Additionally, because I live alone, I recently posted, along with a list of meds and doctor names, the "Vial of Life " document for Emergency Medical Info for Rescue Squad provided by Am. Medical Alarms, Inc on a credenza in entryway. (no longer have the web site link)

As you shared and as difficult as making end-of-life decisions may be for some, I agree that each of us has the responsibility to make our wishes known and documented to spare added grief for our loved ones in the future. Thanks for your post!

REPLY
@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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@jakedduck1, Like many, I understand and regret the pain you endured in being asked to sign the POLST document.

However, I really like your friend's idea of having a DNR tattoo on her chest. She sounds like my kinda' gal! Does she also like chocolate??? Smiles

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@fiesty76

@gingerw, Yes! to all you shared. I also completed the fivewishes document along with other POLST, DNR and "Right to Die" documents to have included in my last updated medical and trust plans.

It was surprising and disappointing to learn from my estate atty. that TX does not legally recognize the 5 Wishes documents. He agreed to include them as a "reference" only in my file and my daughter also has a copy. Different states have different rules and I haven't looked into how my daughter's new state of CO regards them. However, I am relieved that hers is one of seven states that now legally recognizes the "right to die" statutes.

Until the recent death of my closest friend, she had always been the "local emergency contact" listed for docs and hospitals and my daughter listed second. Like you, I also also wear a medical alert and I.D. bracelet.

Additionally, because I live alone, I recently posted, along with a list of meds and doctor names, the "Vial of Life " document for Emergency Medical Info for Rescue Squad provided by Am. Medical Alarms, Inc on a credenza in entryway. (no longer have the web site link)

As you shared and as difficult as making end-of-life decisions may be for some, I agree that each of us has the responsibility to make our wishes known and documented to spare added grief for our loved ones in the future. Thanks for your post!

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Thank you for the above post. It has information I really need to think about. It is not a pleasant topic to deal with but in discussing these end-of-life matters we know that our wishes will be respected and our loved ones will be spared the added burden of decisions that need to be made due our passing.

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@fiesty76

@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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Well, hello, fiesty 76. It's wonderful reading you message. I've been out of the loop, off-line, out of kilter, elsewhere, fighting alligators as we say and do in sunny Florida…..the last several days. I found my son on the kitchen floor several afternoons ago after finishing appts at Mayo. He was unconscious, couldn't rouse him so called 911, took to Mayo Hospital. He was there in ED for a day, in hospital couple days. Home on Thursday. He had an episode in the car with me getting his meds, so I just drove him to Mayo hospital ED.
I brought him home last night. He's not ok, but with God's help will be soon.

He'll have home health care soon….nurse, PT, OT, and I'm hiring a housekeeper for a couple days weekly at first to help. He's willing to have the medical help now, will be seeing the movement disorder specialist neurologist this week which will begin the help he desperately needs….address the whole person finally! He'll have people in his life for the first time in 19 years!

Dystonia is a horrid illness. It's taken away his life…19 years fully disabled, unable to sit at or type on a computer, everything hurts….serious muscle pain with every muscle contracting all the time!!! Never relaxes…and a ne in nerve firing 24/7 in his shoulder/neck, constant nerve pain and loss of use of his arm w/o screaming pain. He's reached his limit every way, physically and emotionally. He's completely exhausted. But, now he gets some help!!!!

He was an immigration lawyer, good and caring, and hit with this mess as his life was going well, thriving. His life has been taken away.
Now, finally, we have a doc who knows what is happening and hopefully knows what to do. There are now treatments, even to brain surgery, and knowledge which is fairly new about dystonia. He simply needs, has to have now, proper care and treatment.

I'm tired. This has been a long journey down this road of life. I am a mama grizzly bear and I've been fighting fir my cub! I haven't been able to help him like I wanted, just support him and love him and be there. Now, there are people who can help.

To catch up re my health, it's been on hold obviously. I begin this Friday with pelvic dysfunctionality testing….GOODIE! Then digestive and esophogeal tests to get me back to that warm pool and some walks. I did walk in the hospital for my good but also as a relief from the drama and emotions. I

'm working now on focusing on my emotional health, some music, some meditation, some peace. Although, I'm on the way now to Rob's condo, across the street, just to chat. He wants to talk about what the docs said and have lined up. I want to rest! BUT, friends, when do mother's rest? He's 53 year old….a kind, lovely person who is totally alone but for me, his mother. That's pitiful…poor fellow.

My wonderful new bed will be delivered, installed and the old mattress and 2 box springs removed….white glove service as Macy's calls it…..please be the comfy bed I think it is!!!!!!! Also hope I made the right decision to get box springs rather than the metal adjustable frame. May have to rethink that in the next 24 hours!

Going to see my boy. Blessings to all of you and your personal journeys. Btw; one thing we're chatting about today….DNR, decisions, living will, health care power of atty….all things we've discussed but never completed. You and this discussion have pushed me on.
Thank you for that and so much more. elizabeth

REPLY

@ess77, What an incredible journey! You are made of strong stuff. Your son is incredible, too. I don't really have the words to express all the feelings you have stirred in me. Please know that you are in my thoughts. May you find some measure of peace. With all good wishes, @joybringer1

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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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@colleenyoung My husband passed away Jan 3rd. FTD APHASIA/ALZHEIMER'S 4 yrs along. Had covid early Dec.. No ventilator. No lung issues. Severely dehydrated malnourished in nursing home. Not eating or drinking. Not able visit since Mar. 2020.as directed by Mich. Governor.Trans to hosp. Dec 18..then Dec 24 to Hospice facility. We did not know how he had digressed with dementia. Window visits were only connection since Mar. 2020.. He was very receptive and seemed to know us. Laughing, etc. But of course not vocal except a few yes, no oh!! Apparently he "was kept comfortable" because of DNR in file. It should have been changed we did not know we could. He was not given IV fluids during his covid since DNR in place at nursing facility. Released from hospital with vitals back to normal. But his aphasia was advanced. So he passed. Might have been better outcome if DNR was Changed. Even tho he got over covid it was listed on death certificate as cause of death. I'm disappointed in myself as POA, etc. Angry at nursing home to say nothing of my shock of his passing..he was eating pureed food and thickened liquids after released from hospital. I am missing him terribly. Bottom line!!! DNR and end of life wishes need to be reviewed on occasion. I wish I knew that. Sorry for my rant. Thankyou.

REPLY

Do not feel you have to apologize for your rant. All of us need to vent at certain times. Your suggestion to review end of life wishes is helpful. You have my condolences for the loss of your husband. I hope you have some loved ones to help you transition to your new circumstances. Yes, life will never be the same. May you think of happier days together. With all good wishes, @joybringer1

REPLY
@dianajane

@colleenyoung My husband passed away Jan 3rd. FTD APHASIA/ALZHEIMER'S 4 yrs along. Had covid early Dec.. No ventilator. No lung issues. Severely dehydrated malnourished in nursing home. Not eating or drinking. Not able visit since Mar. 2020.as directed by Mich. Governor.Trans to hosp. Dec 18..then Dec 24 to Hospice facility. We did not know how he had digressed with dementia. Window visits were only connection since Mar. 2020.. He was very receptive and seemed to know us. Laughing, etc. But of course not vocal except a few yes, no oh!! Apparently he "was kept comfortable" because of DNR in file. It should have been changed we did not know we could. He was not given IV fluids during his covid since DNR in place at nursing facility. Released from hospital with vitals back to normal. But his aphasia was advanced. So he passed. Might have been better outcome if DNR was Changed. Even tho he got over covid it was listed on death certificate as cause of death. I'm disappointed in myself as POA, etc. Angry at nursing home to say nothing of my shock of his passing..he was eating pureed food and thickened liquids after released from hospital. I am missing him terribly. Bottom line!!! DNR and end of life wishes need to be reviewed on occasion. I wish I knew that. Sorry for my rant. Thankyou.

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@dianajane First, my sincere condolences on the loss of your husband. And now to say "thank you" for the very real example of how we need to review our decision making paperwork every so often, to confirm it aligns with our desires and wishes.Please do not continue to beat yourself up. What happened, happened. By sharing your experience with us, you have helped countless others.
Ginger

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@gingerw

@dianajane First, my sincere condolences on the loss of your husband. And now to say "thank you" for the very real example of how we need to review our decision making paperwork every so often, to confirm it aligns with our desires and wishes.Please do not continue to beat yourself up. What happened, happened. By sharing your experience with us, you have helped countless others.
Ginger

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I agree with these remarks and am encouraged to join this discussion board on aging well Thanks to all who share encouraging and in- formative remarks, not just silliness

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@ess77

Well, hello, fiesty 76. It's wonderful reading you message. I've been out of the loop, off-line, out of kilter, elsewhere, fighting alligators as we say and do in sunny Florida…..the last several days. I found my son on the kitchen floor several afternoons ago after finishing appts at Mayo. He was unconscious, couldn't rouse him so called 911, took to Mayo Hospital. He was there in ED for a day, in hospital couple days. Home on Thursday. He had an episode in the car with me getting his meds, so I just drove him to Mayo hospital ED.
I brought him home last night. He's not ok, but with God's help will be soon.

He'll have home health care soon….nurse, PT, OT, and I'm hiring a housekeeper for a couple days weekly at first to help. He's willing to have the medical help now, will be seeing the movement disorder specialist neurologist this week which will begin the help he desperately needs….address the whole person finally! He'll have people in his life for the first time in 19 years!

Dystonia is a horrid illness. It's taken away his life…19 years fully disabled, unable to sit at or type on a computer, everything hurts….serious muscle pain with every muscle contracting all the time!!! Never relaxes…and a ne in nerve firing 24/7 in his shoulder/neck, constant nerve pain and loss of use of his arm w/o screaming pain. He's reached his limit every way, physically and emotionally. He's completely exhausted. But, now he gets some help!!!!

He was an immigration lawyer, good and caring, and hit with this mess as his life was going well, thriving. His life has been taken away.
Now, finally, we have a doc who knows what is happening and hopefully knows what to do. There are now treatments, even to brain surgery, and knowledge which is fairly new about dystonia. He simply needs, has to have now, proper care and treatment.

I'm tired. This has been a long journey down this road of life. I am a mama grizzly bear and I've been fighting fir my cub! I haven't been able to help him like I wanted, just support him and love him and be there. Now, there are people who can help.

To catch up re my health, it's been on hold obviously. I begin this Friday with pelvic dysfunctionality testing….GOODIE! Then digestive and esophogeal tests to get me back to that warm pool and some walks. I did walk in the hospital for my good but also as a relief from the drama and emotions. I

'm working now on focusing on my emotional health, some music, some meditation, some peace. Although, I'm on the way now to Rob's condo, across the street, just to chat. He wants to talk about what the docs said and have lined up. I want to rest! BUT, friends, when do mother's rest? He's 53 year old….a kind, lovely person who is totally alone but for me, his mother. That's pitiful…poor fellow.

My wonderful new bed will be delivered, installed and the old mattress and 2 box springs removed….white glove service as Macy's calls it…..please be the comfy bed I think it is!!!!!!! Also hope I made the right decision to get box springs rather than the metal adjustable frame. May have to rethink that in the next 24 hours!

Going to see my boy. Blessings to all of you and your personal journeys. Btw; one thing we're chatting about today….DNR, decisions, living will, health care power of atty….all things we've discussed but never completed. You and this discussion have pushed me on.
Thank you for that and so much more. elizabeth

Jump to this post

@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!

REPLY
@dianajane

@colleenyoung My husband passed away Jan 3rd. FTD APHASIA/ALZHEIMER'S 4 yrs along. Had covid early Dec.. No ventilator. No lung issues. Severely dehydrated malnourished in nursing home. Not eating or drinking. Not able visit since Mar. 2020.as directed by Mich. Governor.Trans to hosp. Dec 18..then Dec 24 to Hospice facility. We did not know how he had digressed with dementia. Window visits were only connection since Mar. 2020.. He was very receptive and seemed to know us. Laughing, etc. But of course not vocal except a few yes, no oh!! Apparently he "was kept comfortable" because of DNR in file. It should have been changed we did not know we could. He was not given IV fluids during his covid since DNR in place at nursing facility. Released from hospital with vitals back to normal. But his aphasia was advanced. So he passed. Might have been better outcome if DNR was Changed. Even tho he got over covid it was listed on death certificate as cause of death. I'm disappointed in myself as POA, etc. Angry at nursing home to say nothing of my shock of his passing..he was eating pureed food and thickened liquids after released from hospital. I am missing him terribly. Bottom line!!! DNR and end of life wishes need to be reviewed on occasion. I wish I knew that. Sorry for my rant. Thankyou.

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@dianajane, You make such a good point of the need to periodically review end-of-life decisions. My deepest condolences on the recent loss of your beloved husband. What a difficult journey you've been on. Please be kind to yourself as you grieve.

It seems to be human nature that following the death of a loved one, we tend to berate ourselves with a lot of "if onlys, and what ifs". It has taken me months to get beyond the anger I felt about what "should have but didn't" take place following my best friend's long illness and recent death.

Your post didn't strike me as a rant at all and served to impressed the importance of periodically reviewing our end-of-life decisions. My hope is that with more time, your thoughts will dwell more on the lovely times you shared. I don't think the "missing" ever stops but time can bring us to a place of more peace and thanksgiving for that very special person's place in our lives. Thank you for your post. Thinking of you, Diana, and wishing you comfort.

REPLY
@fiesty76

@dianajane, You make such a good point of the need to periodically review end-of-life decisions. My deepest condolences on the recent loss of your beloved husband. What a difficult journey you've been on. Please be kind to yourself as you grieve.

It seems to be human nature that following the death of a loved one, we tend to berate ourselves with a lot of "if onlys, and what ifs". It has taken me months to get beyond the anger I felt about what "should have but didn't" take place following my best friend's long illness and recent death.

Your post didn't strike me as a rant at all and served to impressed the importance of periodically reviewing our end-of-life decisions. My hope is that with more time, your thoughts will dwell more on the lovely times you shared. I don't think the "missing" ever stops but time can bring us to a place of more peace and thanksgiving for that very special person's place in our lives. Thank you for your post. Thinking of you, Diana, and wishing you comfort.

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@fiesty76 Thank you for your kind words.

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