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I've been caring for my grandmother in her home for almost 5 years now. In the past 4 months she's had one thing happen after the other and been in and out of the hospital. She is back at home now. She has a long list of ailments but has had 2 strokes these past few months and is cognitively in and out. Hospice says she's transitioning to death. She sleeps at least 18 hrs a day but when she's up and talks to me her words aren't always all there but she's getting through. She takes her meds and eats well. I'm her medical POA and they keep talking to me about a DNR. I understand the trauma and her chances but I just can't bring myself to even look at their paperwork. I've never talked with my grandma about these things and I'm terrified of making the wrong decision on her behalf. When she's lucid and I ask her she says "well I don't know, what do you think". This is breaking my heart I never knew I could feel pain like this. My mother told me I should sign it but it just doesn't feel right to me. Has anyone ever been in a similar position and what helped you think things through?

One of the good things about making decisions for someone who is close to death is that there is no wrong decision unless it causes pain. The person will die, and your decision can only make the process slower or quicker. Who knows which of the two is better? Or which they would have preferred? The paperwork for Advanced Care Directive is often very long and complex, and not suitable for your answers if you have not had a chance to talk it through. There is usually a simple option to make it simply ‘as directed’ by you, or perhaps by you and your mother. Then you make the best choice you can at the time. This is better than the option the care agency may be forced to follow to avoid litigation etc.

You love your grandmother and have her best interests at heart. She trusts you and says ‘what do you think?’. Clearly she wants you to make the choices for her, and your best guess is her best option. Have courage.
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Reply to MargaretMcKen
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In NJ a DNR is very simple. Its a Do Not Resuscitate order and I am surprised Hospice didn't tell u its needed. When on Hospice a person is being kept comfortable and allowed to go. If Grandma stops breathing, you really want them to bring her back to live like she is? The paperwork just states that no extreme measures will be used to keep the patient alive. CPR is very hard on the body especially with the elderly. A doctor will sign off on the paperwork. Let Grandma go in her time.
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Reply to JoAnn29
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BlueJay, since your grandmother is already on hospice, you have taken the first big step towards helping her through the final part of her life. A gentle question I would pose to you : what is your grandmother's present quality of life? And do you think your younger grandmother would be happy living in her current circumstances?
I had to make similar decisions for a few people. I asked an uninvolved person what CPR was like for people in their circumstances. The answer wasn't very pretty. Injured ribs and additional problems are just a few of the things that can happen ---- and sadly, only to have the person pass just a little more in the future.
I opted to avoid further pain and suffering for my loved ones. It was a personal choice that worked for me and I wish you peace in your decision making as well.
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Judysai422 Sep 11, 2018
Grest response. When my mom's new pulmonologist saw she did not have a DNR, he told me she should. Said it would be very painful for her if she was intubated. That gave us the push we needed to get it done.
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I’ve just finished reading the book “Being Mortal” by Atul Gawande. It has been recommended so often on this site that I decided I’d get it. Worth. Every. Penny. It’s a quick read — started one evening and finished the next. His writing style is comforting. Read the book. I think you will feel more empowered to have these hard conversations with your grandmother’s doctors and hospice. Several times, the author says (paraphrasing) people who have those hard conversations and make decisions before the crisis occurs are much less likely to experience depression in the months following the death of a loved one. Ultimately, you are seeking peace.
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Zdarov Sep 11, 2018
farmjelly, same here, decided to read it based on the recs and it was so worth it! Beautiful writer, great material. I hope bluejay takes your suggestion.
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A year ago, my dad, with advanced stage dementia, was hospitalized with aspiration pneumonia. I have been his primary caregiver and POA since mom died 14 years ago. The hospital social worker asked if he had a DNR; I was horrified. They suggested I contact a hospice company, which I did before he was discharged from the hospital. They (hospice) provided a nurse, a chaplain, and a social worker for me to talk to about this. I understand that he will never get better, never return to the person that I knew before, and that it would be what he would want - for us to let him go to join his family and Mom in heaven, and not be kept alive by machines. That is why we now have a DNR in place for him. This, and taking my mom off the ventilator when she went into a coma after surgery, are the hardest decisions I’ve ever made in my life. But I know this is what they wanted.....
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Reply to tazlady
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You don't have to make this decision alone. Reaching out here was a good first step but we can only offer opinions. If you can, find a Palliative Care or hospice professional to help talk you through this decision. Get as much information as you need. Try not to worry. You love her and you'll make the best decision for her because you love her. You can't stop her from dying. All you can do is try to manage her care as best you can.
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Reply to Marcia7321
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One way to approach care of a declining patient with dementia:
Think in the moment.
Will this treatment make her feel good right now?
If it hurts to swallow pills, don't give pills.
If it hurts to have blood drawn, don't draw blood.
If it is hard to breath, give oxygen.
If her heart stops, don't cause pain trying to re-start it.
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Reply to Lynnnnn
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Your hospice provider probably has a worksheet with questions and answers, I would encourage you to at least read it.
(I'll include a link for one - https://www.health.harvard.edu/media/content/files/health-report-pdfs/Form%202_Health%20decisions%20worksheet.pdf)

If you can't bring yourself to have this discussion then ask the hospice nurse or social worker to go over it with her, they have done it countless times and will be able to answer her questions if she has any.

A very thoughtful book that might be helpful to you is Atul Gawande's Being Mortal - this is not technical or heavy reading but a very good perspective on what is truly important as the end of life nears.

One last thought - when she says "well I don't know, what do you think" it could be that she is watching your reaction and doesn't want to distress YOU, she may be waiting for assurance that YOU are OK.
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Even with advanced directives, a DNR order has to be written with each new admission; otherwise, they are full code by default. Some people carry that yellow piece of paper stating Do Not Resuscitate signed by a doctor and POA but that does not mean they are automatically a DNR. The order still has to be written--you have to show the paper to the admitting physician then he will write the order DNR. Further, a DNR order is *NOT* written in stone. It can be rescinded at any time during a hospital stay. What you need to do NOW is get together with family and discuss the code status because when an emergency happens, it happens fast.
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In this past week, I was just presented with this same, heartbreaking decision for my Dad. My Dad dealt with these decisions when my Mom (his wife)and his Mom were dying from dementia. He doesn't have dementia, but has a lot of health issues that have been just deteriorating his body. He was in ICU and he was of sound mind. On Friday, I gathered the courage to have the talk with him about what he would want. It was heartbreaking because I did not get the chance to get fully into the conversation. I came in, and he looks at me and said, "There has to be something better than this." I told him that I actually wanted to talk about this and was glad he brought it up. But then he started talking about poison in the hospital which was on a piece of cloth on the wall, and how it caused 9-11. The nurse then told me he has been off and on with this and thought he was watching too much news. The doctor then came in and we were discussing his case. He then asked my Dad his name, and he said Ralph, which is nowhere close. He didn't know what state he lived in, nor the president. Delirium had kicked in. We had planned on getting durable power of attorney together at the end of this month, but things declined too quickly. This automatically put me and my brother in this spot of being the ones to make these decisions, and just like you, I am terrified of making the wrong decisions.

The next day, one of the doctors called and asked for me to come up right away because it looked like he wasn't going to make it and suggested I give permission for DNR. I told him I can't decide that yet and wanted to have my brother involved. The next few hours was just pure panic as we both were trying to get up in time (I am an hour away, and he is about 3.5 hours away). We made it. That same doctor came to the bedside and told us the situation in front of my Dad and he is able to understand what people are saying and was in and out of lucidity at that time. The doctor was very direct and to the point. Because of how frail my Dad is right now (75 years old), a CPR attempt would end up pretty much crushing him. His ribs would break and probably puncture his lungs and put him in a horrible and painful spot. We were holding his hands, and he started getting agitated and pulling his hands away from us. We asked to talk in the hallway instead.

After much consideration and talk with my brother and knowing how poor condition he is in (Afib, tachycardia, diabetes, severe malnutrition, dehydration, unable to swallow, unable to hold any sustenance in, Neuroendicrine cancer originating in his small intestine in Stage 3, breathing and kidney problems and now delirium/psychosis, and considering what he would do in this situation, we ended up signing the DNR, together with many tears.

This is something we can retract at any time. On Sunday, the palliative / hospice doctor called and asked to meet yesterday. He is suggesting palliative care at this point, and we still have more difficult decisions to make as far as the risks involved with getting surgery to attempt to fix the stricture in his esophagus, and getting a PEG tube in his stomach. So far he is suggesting to not get the PEG tube because of quality of life, but another doctor in the same team is suggesting it. Everything is now on hold for a brain scan because every day, there is something else.

Just know, you are not alone. I am just trying to make sure my gut, my heart, and my mind are all in agreement and I have been researching everything to be sure we are making well-informed decisions together in the best interest of our Dad. It is finding thar balance between comfort and making sure we have exhausted any possibilities of recovery without completely debilitating him.

I am finding this site to be valuable for information and seeing/learning what others have felt and have done in similar situations.

Wishing you and your family the best.
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robinr Sep 11, 2018
Just wanted to send you a hug...I can only imagine the stress and exhaustion and angst you are experiencing...but know that when decisions are made from a place of love, and avoidance of additional pain and suffering, it won't be a bad one.
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