Having the uncomfortable conversation

Ed1937

This is something that we all need to do, especially while we are healthy enough to make rational decisions. We need to let others know exactly what we would want in our darkest hours, if we can't let our wishes be known for medical decisions. My wife and I talked about this several times through the years, and when the decision was up to me for the way she was treated (or not) that made it much easier for me to do what she would have wanted.

But when I was asked what I wanted them to do when she had next to no hope, and I told them to let her go, I felt like I was playing God. It was hard, but it would have been worse if I had no idea what she would have wanted. Have the conversation. You'll be glad you did.

loveskitties

I definitely agree. While my parents did not have that conversation one-on-one, they did make decisions with the help of their lawyer when making the living will for each of them. This document was very detailed and described various medical scenarios and their wishes for actions to be taken/or not taken.

One was actually for dementia situation with other medical conditions.

It is difficult to make those final decisions, but much easier when you have your LO's desires in writing.

harshedbuzz

A good reminder.

My friend is living this right now. Her husband is in the hospital in very bad shape. They've recently discussed his wishes in the 2 weeks between hospitalizations and in the context of his brother-in-law's death during that time. She's still feeling the weight of the world right now.

My husband and I have shared. My mother sticks her fingers in her ears and sings "la-la-la-I-can't-hear-you" when I try to broach the subject. She told me "do whatever it takes if you know I'll be OK after". If only it worked like that.

Her sister, on the other hand, has included "no hand-feeding" in hers. She reminds me of this when we talk. I have tendered the scenario where she falls and breaks both wrists to which she says "let me starve".

HB

Mint

This is most definitely important.

On May 5 of this year I suddenly became quite ill. I remember almost nothing of the next 5 days except for a short space of time when the surgeon came to talk with me. I’m 65 years old and had very little health issues prior to this. He told me I would get worse before I got better. They asked me what I wanted my code status to be. I told them if I get to the point I need intubated, let me go. When I was getting to that point, I was no longer able to make decisions for myself. They called my sister to question her about if she wanted to change my decision. My sister told them them she has worked acute care for years and her and I have had this conversation many times and we will leave her a DNR.

In my job capacity I was the one who often removed a patient from ventilator when that decision was made. I can only tell you why I did not have a problem with this and maybe it will help someone else who finds themselves in this situation. I knew man had done all man knew how to do. For me personally they were now in Gods hands. I believe that if it not their day to die they won’t, if it is their time to go they will. Some died and some didn’t.

When I woke up about 5 days later the intensive care doctor was talking with me. Told her when I use to take care of patients like myself now and then someone i didn’t think would make it did. Told her I would always say it was not their day to die. She said to me it was not your day to die. Hope this may help someone, just my thoughts. I have fully recovered and feel well.

Quilting brings calm

My mom already has a DNR and has made it known to me and her doctor that she doesn’t want to be treated for things like cancer etc. no ventilators, no feeding tubes

My step-father is wishy washy depending on the day. Last year he wanted a DNR and no ventilator no feeding tube. This April he wanted a full resuscitation ‘as long as they can fix the problem’. His doctor also marked the temporary ventilator and temporary feeding tube. Yet he continues to say he doesn’t want to go to his specialists appointments because ‘why bother I’m old and I have things wrong with me’. I know what my decisions for him will be if I am asked.

Jeff86

I recommend that everyone read Dr. Atul Gawande’s book, Being Mortal (subtitle: Medicine and What Matters in the End). It is a profound meditation on what constitutes a good final phase of life as well as a good death. Thoughtful, beautifully written, and totally relevant to those of us who may be called upon to make challenging decisions about end of life for our PWDs, as well as ourselves perhaps.

Ed1937

DNR for me. No tubes or machines keeping me alive. I'm not afraid to die. My best friend is waiting for me. Quality over quantity.

Jo C.

Check out the pdf document, "The Five WIshes."

https://www.fivewishes.org/five-wishes-sample.pdf

This is really an important topic and it is not always a black and white situation; sometimes there are shades of gray so to speak. Going over a form for Advance Directives, I realized how non-detailed it was, and being an experienced RN, I knew from said experience with families over the years that there may still be questions for the family of what to do under certain circumstances and I did not want my Loved Ones to have to labor over an emotional situation second guessing themselves not only in decision making; but also after the fact if it was not a "cut and dried" sort of situation. So I wrote my own Advance Directives combining some of the usual Advance Directive form AND also some of what is in the document, "FIve Wishes," and clarifying it with my own personal input giving a bit more information under a small variety of circumstances..

Whatever one chooses for themselves, it is tremendously important that it be set forth clearly and in writing so our Loved Ones know specifically what our wishes are.

J.

Iris L.

"Hard Choices for Loving People" may give some guidance.

My 91 year old, housebound neighbor, who does not have dementia, wants to die at home. She believes she will die in her sleep. She says she never wants to go to a hospital. Good for her, but not good for those around her, who will discover her.

Iris

sandwichone123

I think this is so important. I bought the "Five Wishes" family pack so everyone in my family (10 copies) could have one. I think mine is the only one filled out and signed, but it did help make sure we'd all had the conversations in the year before my mom died.

I told my kids that reading "Being Mortal" was a prerequisite for being considered as my medical POA.

Battlebuddy

My husband had a fairly good advanced directive. He had told me that when he couldn’t swallow to let him go. He would have times when he couldn’t swallow but it lasted hours , not days.

I would say it’s hard to implement an advanced directive.there is some innate human desire to fight to the end.

There was pressure from the family to put in a feeding tube, when he stopped eating. But I could say, DH has an advanced directive that says no feeding tube. He was already skinny and got skinnier.

Thank God for the advanced directive . I don’t know if I could have let him go without it. Now I tell everyone to get one because it’s hard enough to deal with the last stage of any illness , But with the Advanced directive you can be sure you are doing what your loved one wants