Death doula Alua Arthur says life is better if you 'get real' about the end
https://www.npr.org/2024/04/17/1245264129/death-doula-alua-arthur-briefly-perfectly-human
@gemswinc
We are so completely obsessed with youth and avoiding age, that we fail to realize, we all are leaving here. And we are aging every second before we do it.
And once death comes, people don't know how to deal with that either. At least that's my take. Most people don't.
@gemswinc when I worked in dialysis, as a social worker, I had discussions about end of life care with my patients. Some didn't want to discuss it at all, while others welcomed the opportunity to talk about what they wanted and didn't want and to implement their wishes in writing. The ones who refused to discuss it, I always followed up, because sometimes planting the seeds helped to open the door for further discussions.
@Spagesgallo1 Ah, you have been on the front lines, I'm glad you follow up w/ those who might discuss it. My husband, nevertheless, refused.
@gemswinc yes, and it was extremely rewarding to help them have that difficult discussion! Some outright refused to discuss it and sadly, some continued to do so. While others, upon admission, actually provided advance directives, DNR's, etc. I had one patient, on dialysis, on a vent and in a vegetative state. His wife refused to make him a DNR. He coded, was clinically dead for over 1/2 hour. EMS brought him back. He coded 2 more times before his wife finally agreed to make him a DNR.
@gemswinc I'm sorry that your husband refused to talk about it. For some, it is just way too uncomfortable for them to discuss. Fear is also a big factor for people avoiding the topic. Even healthcare workers struggle with it. I have also worked with a doctor who was anti end of life care. People on dialysis, vents and in a vegetative state. He believed in keeping them alive at any cost! 🤦♀️
@Spagesgallo1 @gemswinc
So sad to hear! Because you know he passed that one to patients. I am for euthanasia if people choose. There are definitely worse things than death.
@CinnamonGirlE @gemswinc
It was sad and infuriating! He was actually imposing his religious beliefs upon his patients and their families. He didn't care about quality of life! I am totally with you on euthanasia! Always have been. I always believed in death with dignity. I just feel so honored and privileged to have helped people on that journey. That's where I miss the work that I did!
@Spagesgallo1 @CinnamonGirlE A+ Euthanasia. If that was easily available, I would be much more sanguine about how things could end. If you know there is an escape route if needed, there would be less worry
Oh, I feel you deeply on that as well! It would really help to make it so much easier to face the end if euthanasia were available as a treatment option. People can stop chemo or withdraw from dialysis...those are legal treatment options! It really would help if we had euthanasia as an option as well. There would be much less worry and we would feel more empowered! More control over an inevitable outcome. Thank goodness at least for hospice.
@Spagesgallo1 @gemswinc @CinnamonGirlE
I worked in large Denver hospital. My administrator told me euthanasia happens if you have the right doc.
@LnzyHou @Spagesgallo1 @gemswinc
I would say that's correct.
@LnzyHou @gemswinc @CinnamonGirlE
Agreed! The trick is finding the right doctor! There are organizations that also deal with end of life. Too bad Dr. Kevorkian's vision wasn't embraced as it should have been!
@Spagesgallo1 @gemswinc @CinnamonGirlE
My adult sons have assured me they will handle whatever is necessary. One way or another.
@LnzyHou @Spagesgallo1 @gemswinc
That's good Linds. I don't think mine are comfortable with it.
@CinnamonGirlE @LnzyHou @gemswinc
I'm sorry to hear that Cin. I know my husband wasn't comfortable with certain wishes that I have, but he finally gets it. When appointing people to carry out our wishes, it's so important to ensure that the ones you pick will follow through with carrying out your wishes. I have witnessed some instances where people panicked and then the issue had to go before the ethics committee!
@Spagesgallo1 @LnzyHou @gemswinc
I have a sister who is mirror minded and also a nurse. I have a person. Thankfully, and hopefully never necessary.
@CinnamonGirlE Excellent. Peace of mind @Spagesgallo1 @LnzyHou
@CinnamonGirlE @LnzyHou @gemswinc
Thank goodness! I'm happy that you can have peace of mind! But I am with you, hopefully it will never come to that. 🙏
@LnzyHou @gemswinc @CinnamonGirlE
That is the most important thing of all. I am happy to hear that everyone is on the same page. My husband has assured me of the same and visa versa. We are actually going to make an appointment with a lawyer to update all of our documents.
@Spagesgallo1 @gemswinc @CinnamonGirlE
Of course, it’s legal in a handful of states, one or two don’t have a residency requirement. There’s an organization that works to make it more available and acceptable, Compassion and Choices.
@Smccune55 Thanks for that one. Dignitas, but it is in Switzerland @Spagesgallo1 @CinnamonGirlE
@gemswinc @Smccune55 @Spagesgallo1
I guess that's why I haven't heard of it. 😂
Still intrigues me though.
@Smccune55 @Spagesgallo1 @gemswinc
I don't know that I have heard of it. Thanks for posting.
Yes, that is true! Compassion and Choices is one I have never heard of. The Hemlock Society is another one.
@gemswinc @CinnamonGirlE
@Spagesgallo1 You are honored and privileged! @CinnamonGirlE
Well, given that I am no longer working in the field, I was very grateful for the work that I was able to do. I had a wonderful run of 25 years to be of service to others!
@Spagesgallo1 that is powerful, important work! So grateful that there are people like you willing to step in to it ❤️
Thank you Laurel! I cherish and treasure the patients that I worked with and the difference that I hopefully made. I wished that I had it in me to go back and continue my life purpose, but health-care is untenable in this day and age. I saw the changes over 25 years. I was no longer able to truly serve my patients the way that I had been able to do in the past. It became more about meeting CMS guidelines at the expense of direct patient care.
@gemswinc @CinnamonGirlE
@Spagesgallo1 @gemswinc
Thank you for doing it and being who you are. Thank you for helping patients and offering them support during such difficult times. I miss that portion of it too!
Aww, Cin! Thank you for saying that! You just made me cry! Like you, I really miss that part of the work that I did. Especially the educational piece! Knowledge is power! Since this discussion started, I have been flooded with so many wonderful memories of my patients. I was so blessed, as I am sure you were as well! 💜
@Spagesgallo1 @gemswinc
You are so welcome. I was definitely blessed. Left a career behind in which I cared for many many people. And never with a bad incident. I consider that to be a gift all the way around.
You were obviously exceptional at what you did! I have no doubt that you went above and beyond! Then add the passion that you had for wanting to help your patients! I am not surprised that you had such great outcomes! You served your patients well. I am sure that they miss you very much! Overall, yes, it most certainly was a gift all the way around! You done good girl! 🩷
@Spagesgallo1 @gemswinc
Thank you sweet lady 💗
You are most welcome! I am just speaking the truth! 💗
@Spagesgallo1 I think the loss of self/ego was too much to bear publicly. He had to work on it by himself. I felt left out, an opportunity to connect was lost.
@gemswinc yes, sadly, for some, that is the only way that they can process it. Yet, like you said, it ended up leaving you feeling left out and above all, the loss of that sense of a deeper connection to make that journey together. That hurt runs deep, after sharing your lives together.
@Spagesgallo1 Yes. He point blank said "I'll do this alone". Alzheimer's
@gemswinc oh Cindy! I am truly so very sorry! Alzheimer's...you have my deepest sympathies! It's such a cruel disease. It takes a huge amount of strength to care for someone afflicted with Alzheimers! Not an easy journey at all, especially when they push you away. I commend you for all that you did to care for him, despite his proclamation.
@Spagesgallo1 Thank you, that means a lot ❣️
@Spagesgallo1 However, he haunted me for a year. No, I'm not crazy.
@gemswinc I have no doubt that he haunted you for a year. No, you're definitely not crazy! I just hope that you have made some peace with how things went. You tried and did your very best! Please give yourself grace.
@Spagesgallo1 Thank you Stephanie, I do believe we have made peace and he has moved on.
@gemswinc I am happy to hear that! He definitely made the full transition once you both made peace!
@Spagesgallo1 I'm trying.. the grace. Work-in-progress. Thank you for your interaction!
@gemswinc That's all you can do! It definitely takes time! Be patient and gentle with yourself! 💜
@Spagesgallo1 Anyway, nice to meet you and learn more about you!
@gemswinc it's a pleasure to meet you as well Cindy. Despite the sensitive nature of the topic of our conversation, I appreciate learning more about you as well!
@gemswinc We have a death doula who lives in our household. They are currently working in hospice in a more or less regular corporate version of the job.
The things families just don't deal with, or even know how to deal with, and the often terrible and lonely ways people die under our current way of doing things are heartbreaking.
Death is both frightening and inevitable. It is one of the more difficult changes we face. We need better, more human ways of making that passage in love and peace.
@AskTheDevil First hand experience, lucky to have that resource
@AskTheDevil @gemswinc I cannot recommend enough the book Being Mortal by Atul Guwande.
@AI78 I have read it, it's on the shelf 🙂@AskTheDevil
I think one of the great failures of Western Society is the apparent taboo about talking or thinking of death. We pretend that the next pill or potion will help us live forever, fueling our consumer society.
I feel that death is a passage as birth is a passage, and that we should acknowledge and plan for it. Life and death are intimately intertwined and one cannot exist without the other.