A place to talk death and dying issues
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Oh, Stephanie - I've told you before and I may say it again - thank you, thank you, thank you for all you have done here and everywhere throughout your incredible lifetime.
If anyone wants to read her blog, it's public and the link is http://www.mylifeline.org/StephanieSugars/updates
JJ
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from Stephanie's blog:
Transitioning from this life
Posted by Melody Sugars on November 20, 2016 4:27 pm
Our dear Stephanie Sugars has entered the very beginning of her journey to the other side. As of Saturday morning, she was rapidly declining, unable to rise from her bed, no longer speaking, and being held in deep quiet and tender care by her beloved friends in her Circle of Care on a twenty-four basis. We expect she will be gone within days if not hours. It could be anytime soon. Please hold her in your hearts with all the love she has expressed and given to so many of us for so long…and be with her in spirit as she passes from us. She will be waving to us, to you.
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Sweat dreams, Stephanie. I don't *know* her and haven't been on these boards less than a month, but after she saw one of my posts about an idea about an urn, she sent me a pm to try to hook me up with someone who could make one for me. "I know a guy...". I was - and am - so touched. I'm honored that the comet blazed across my path.
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The blog post was just (at 6:45 pm ET) updated slightly to add the tag:
"Written by Kathleen Kraemer"
Everything else is the same, so she is still transitioning.
Holding you in love and light, dear Stephanie
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Sweet Stephanie (Longtermsurvivor) passed on tonight. She is free from suffering and cancer. Fly free Stephanie to the other shore.
Thank you for all your teachings, musings and observations. She was always helping folks and showing them resources and sharing herself and poetry. I will miss her presence here, but am thankful she wrote and left her legacy. I am happy she is free, sad to see her go. Thank you to her caregivers and sister for telling us.
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Sad news... Our condolences to her family, friends and all who loved her. She will be missed by the BCO community.
Rest in peace.
The Mods
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Thank you, Melody, Kathleen, and Elinor, for keeping us updated on Stephanie's blog during her transition.
Thank you to all the Circle of Care caregivers, and to all on the hospice team who cared for Stephanie.
We all treasured Stephanie deep in our hearts, and will carry forwards Stephanie's spirit in all that we do and be. Peace to all, and blessings to dear Stephanie.
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I will miss you Stephanie, my fellow Jin Shin Jytsu friend. Glad you are pain free.
Thank you everyone for keeping us aware of her final transition
In loving kindness
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All night it was raining and this morning there was a break in the sky. We had a beautiful rainbow and the sun was peeking behind the clouds. Stephanie is letting us all know that she is happy and free.
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I knew it was Stephanie when I saw the angel thread bumped. She is an angel now and we are all still able to keep her near in our thoughts and hearts. Her legacy will never be forgotten. I googled her name and saw contributions she has made other than here. Bless her heart. Fly free Stephanie.
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loving kindness to all. You will be missed, but never never forgotten
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Stephanie you were truly an unbelievable person, so much fun, so much wisdom. You gave me so much support, and advice. Such warmth and caring. I heard about your passing last night, and I am still emotional thinking of you. What an impact you made on so many. Your Circle of friends are lucky to have been with you. Love you forever, thank you!
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Oy this morning has been dreadful. Seven am started with throwing up and then tea and more throwing up. I can keep nothing down. I try and fail. My DD2 is almost done with the semester at college. She's doing so well. I want to take my DWD meds after the semester is done. Dec 10th. It's 2 weeks before Christmas but I can't help it. Stephanie was lucky she is free and had no kids to consider. This would be so much easier if I didn't have kids and pets and a husband. Can't believe I have lived another year since last Christmas... never would have thought that would happen.
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I know Stephanie's and Percy's passings weigh heavily on you. I admire your momness. I hope you can get some fluids this week without any hassle. It is hard to believe you made it another year. I remember how miserable you were this time last year. I wish you peace.
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Yes I feel like I have been this way exactly the same as last year. I am shocked I lived another year. Frankly I don't want to go on much longer. It just hit me so heavily how compassionate and loving Percy cat's death was. Everyone accepted that his health was dramatically declining, extreme weight loss, poor kidney labs, peeing bloody urine, drinking water excessively. It was ok to die and be loved and buried with love. People deserve the same. I feel awful today... puked my guts up every 3 hours. No eating can't hardly keep fluids down. WHo wants to live like this? No one. I know it's Christmas time but enough.
It's funny I don't even care if I am remembered. It would be nice to have loving memories from my kids and DH but if I fade from view that's just fine by me. Back to the great circle of life and nature. I am comforted by that concept. I want the living to LIVE and not dwell in the past. Move happily on; with permission to move on and enjoy everything life has to offer. My goofy personality will inspire an occasional memory over some ornament or recipe or something ridiculous I said. I hope my kids smile and laugh.
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Rosevalley I came to this thread because of Stephanie, I was not aware of it before. The naked truth of these issues is mind opening. You are right about the memories over small stuff, that is how it's best to always remember those we love. I do wish for it not be so hard on you. What are you taking to sustain yourself? Are you on Hospice? Could they help you at all at this time?
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Rosevalley, can you at least vape to help with vomiting? You must be skin and bones with all the barfing. If hospice and palliative care can't help anymore, it's time to call it a day, but I'm afraid you won't be able to keep the DwD meds down. As it is, if you stop eating and drinking entirely, your body will shut down in 7-10 days, but it's a miserable way to go.
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No I am not skin and bones, thank goodness I was fat to start with it has given me energy to live on. I third space fluid into my gut ascites so I gain a liter plus of fluid in my abdomen every day. I drain it off every day. I have a huge hard ridge/ mass in my abdomen that is growing and is hard.I wonder what that weighs.I also have lumps that I am assuming are lymph nodes that are hard. Stephanie and I were so much alike in our miseries except she did not have cancer in her stomach and intestines and I do; it's the narrowing and slowing of the intestines that causes fluids to back up and vomiting. I have taken lots of CBD oil tincture and zofran but have not kept anything down. I am worried about being able to keep the DWD meds down long enough for them to work and not puke them up. My other option is a razor blade but I would rather use the DWD. Maybe my oncologist can try something that will calm the cancer down for a week so I can absorb the seconal. I would like to wait until the 9 or 10th of Dec when the semester is done at DD2's college.
Hospice won't give me anything IV, no fluids to stop the vomiting and I found hospice to be literally useless. The things I need they won't do. The in patient facilities require a 3,000.00 nonrefundable retainer. Insurance does not cover it. DWD meds were 3,0068.00 so I figure I am in a guaranteed position to die. So I bought the seconal. I just need to absorb it. It's not IV barbituates like the compassionate Vets use for our beloved animals. Sucks - we treat our animals better then people.
I did have a brutally blunt conversation with my 15 year old and DH... left everyone in tears. Everyone needs to care enough about Mom to let me go. Dying is natural and in this instance a relief and freedom from suffering and misery.
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Insurance sucks, and it IS reprehensible that our pets are treated with more compassion than we are.
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Rosevalley, I'm so sorry that you are suffering so very much. I look twice a day to see how you are doing. I hope you reach your goal that you have set, realizing you are once again thinking of your family to make your passing easiest on them. It is so sad that Hospice is no help. Wonder what their purpose is. Holding you in loving embrace, my virtual friend
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Rosevalley, we too are so sorry that you are suffering so much -- and your family too. We are sending you also a gentle embrace from all of us here.
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Dearest Rose, words cannot describe how sorry I am that hospice is not of more help, as other patients appear to have benefited a bit more from their ministrations. You may already have considered and dismissed the possibility of assembling another team. I just wish there was something more that could be done to ease your nausea and pain.
I also want you to know that you and your words will always live on in our hearts, just as was the case with Stephanie. You have gone to such lengths to share yourself with us and inspire your friends here, and your spirit, strength and determination will always be with us.
I hope the rest of your day is far gentler...
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Holding you in prayer, dear Rose. We are all here for you. Your candor is an inspiration.
I can't even imagine the pain AND frustration you're going thru. Just know that you are now in the home stretch.
Is there any way they can exchange the oral seconal for something that you can inject with a syringe? I don't know how they do stuff up in Oregon...I know that California's DWD is an oral barbiturate as well. That stinks! Did morons design the provisions of this law? Lots of St IV cancer patients simply CAN'T swallow anything and keep it down. So what the heck are we supposed to do? As far as I'm concerned, this law is worthless if we can't take the stuff and keep it down long enuf for it to do the job.
The doctors are no help with this at all. The only thing the nurses do when you're literally on your death bed (like my mom and my friend's parents) is crank up the morphine. Morphine suppresses one's breathing, so the higher they dial up the IV, the less oxygen one takes in, hastening their passing. But unfortunately, you're not there at all. They won't give you anything via IV as you've said.
Gosh, I wish I could be more uplifting, but this is so agonizing for you, and all I can do is just send you strength thru the keys on my keyboard.
Know that you are loved by so many here.
Lita
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Both my parents died in a Palliative ward in a hospital. They were given IV Morphine and it was upped as they indicated more pain. Both their passings were peaceful and we could see they were pain-free. I wish this type of passing for us all.
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My Aunt and Father both passed peacefully as well in hospital. Dad had cancer, and was nauseated. He was given antinausea meds as well as morphine for his pain. He was also under palliative care which is similar to hospice for you. I just can't understand why you cannot get some sort of IV help for all the nausea. It is not like you are trying to cure the cancer with that. You just need some peace from all the vomiting. They should be allowed to take care of symptoms to look after you. I know my additional sympathies don't help with your physical and emotional issues this is having for you, but I hope something can be done, or someone can be found who can arrest some of the nausea since the meds are not able to stay down to give you peace. I am thinking of you and your family.
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I think I have mentioned this before, but you can get anti-nausea medicine delivered through the skin. When my daughter was young and suffered from many ear infections that made her vomit, I was able to go to a compounding drug store, and get anti-nausea medicine in a paste. Then, I applied that paste to her wrists, where it would pass into her system through the skin. Of course, there are also anal suppositories, which I have used for my sons who have autism. Sadly, that is one way to get medicine delivered to the unwilling, but also to those who cannot take medicine orally. I wish you the best, Rosevalley. You have suffered for so long.
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Dear Rosevalley,
I check the website frequently just to see if you have had some relief. It is difficult to hear you are still suffering from symptoms that it seems the doctors should be able to get control of via IV meds. I'm so sorry things are going this direction for you. You have been such an inspiration for many of us (I was a lurker for a very long time) and I just wish peace for you right now. Thank you for your truthful, informative posts and your caring heart that always shined through. Know you and your family are in my thoughts and prayers.
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Rosevalley, Mom died on Hospice, but not with them. She was home. they messed up, no one came to help early morning, when we were calling and her breathing was awful. Apologies later did us no good. They did give us "the" package, but we just did not know if it was time to administer it or not.
Something comic you might appreciate, she had liver mets, was on no treatment towards the end, she used Vagifem, estradiol suppositories that her PCP had recommended so she would be more likely to get less UTI's. It helped tremendously for months. ( it helps keep moist the area, for some people this helps against UTI). Once on Hospice, Hospice docs took over, when we needed Vagifem renewed, they refused to order it, citing estrogen! yep, and it could not be given because she had mets!! And it's not advisable. Dangerous! Yep, she was literally dying, and they were worried about estrogen. She was 95 yrs old! We got a prescription from Primary, we paid out of pocket, (because Insurance would not pay for meds prescribed not from Hospice) and Vagifem she got!
We'll try to walk with you through the 12th!! Hugs!
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Rosevalley, you should not have to suffer - no one should in this day and age - and my heart and thoughts go out to you. I hope you find comfort and peace soon, dear girl.
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Rose, sending you much love and strength. I hope you, DD, and DH are feeling better this morning. Sometimes families are in denial and can't listen.
I pray your oncologist has some options to help you with your DWD, even some relief from the vomiting would be a big help.
It is true, our system of death is unfair. Animals, even prisoners on death row are treated better than terminal patients. I guess the system is designed to "protect" us from being abused or sent to an early death. That really needs to change. We all want to have a peaceful death.
Holding you in my thoughts and prayers, Madelyn
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