A place to talk death and dying issues
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Hello Southern Survivor, and other Sisters on this thread,
Thank you so much all for providing a place where we can be a bit pragmatic and responsible for our own end of life preferences! The University of Washington Medical School has a donation program (forgive me, Cadaver Program). My friend's late Mom's remains were picked up, handled, and used for MD education. It took 6 months, then the UW hosted a joint funeral for all of the donor families. My friend said it was hard to wait for completion, but costed nothing, and good cause. I plan to do this, later.
To Divine, and the pre-purchased plot & stone, my 93 year old mom sure has done this, every detail is already signed, detailed and prepaid, so that (a) her wishes are followed accurately; and (b) so that us kids don't have to deal with it. For me, I view my body as "the vehicle my essence is driving this time around"; my spirit - or whatever one calls it - is being reborn into a new body next time... So my life is now focused on "cleaning up my emotional issues and reactive attachments", so that the next body gets a cleaner essence... These are just my views, from lots of Buddhist readings. A book called "Art of Dying" by Virginia (something) captures testimonies before, during and from family members about "observing the changing body and breath, with equanimity (aware non-attachment; as it is in reality)". These ideas calm any fears I have, so far... Love & Light to all of you and us, my Sisters. --Diane
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Hi Diane, it is very difficult to get into a body donation program in Australia. I didn't think it would appeal to many, but they get so many wanting to do it, they are very fussy about who they take.
I thought about it, but my husband found the idea upsetting.
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Today I started working on my Obituary and the drafting ideas for my memorial, picking out music, who I want to speak, etc.
I had NO EFFING idea that I would be doing all this THIS early in the game. Shiz, I hoped I had at least ONE more year left, but it's not to be. I've started putting the DEATH file together containing important documents, cd's for memorial, etc.
I will probably be starting brain rads in a couple of days. Things may change VERY quickly, so I need to get some "thinking" projects done while I can still read and write. We know what happens to some women when they get brain rads. Won't go into it here. Too depressing. I have to keep my spirits up.
Been off Xeloda for over 2 wks now. Back pain coming back because there's nothing going back there to attack it anymore. I can't even imagine what's going on in my abdomen, pancreas, etc.
I just pray I can get a little sleep tonight, darn steroids! I HATE just lying in the bed with my eyes closed.
Blessings and peace to you all.
Lita
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Oh Lita please continue to fight like hell you have been such an inspiration to me!
Prayers and big gentle hug.
Ronnie
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Oh Lita please continue to fight like hell you have been such an inspiration to me!
Prayers and big gentle hug.
Ronnie
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This topic remains close at heart, and I continue to hold all of you in my daily meditations and reflection. GraceDD, like you I have been grateful for this topic, knowing that it has offered a haven for those who wish to explore dying and death--the end of life "process"--and to have a safe and respectful place for sharing thoughts, feelings, beliefs, values, hopes, experiences, and whatever else seems meaningful regarding that "process." This topic has endured for over 6 years!
Lita, I hope you are surrounded by love and whatever else you need to find meaning as well as nourishment for your mind/body/spirit at the end of your precious life on this earth.
As a person who has been with loved ones at the end of their lives, and as a clinical social worker who accompanied many as they moved through the remaining months, weeks, and days of their lives, I try to recall experiences that might be meaningful to me AND to those of you who show up here. Of course, I also live with my own bundle of potentially life limiting illnesses, and I try to do so mindfully and with compassion toward myself and for those who walk this path with me.
Compassion, kindness, self-awareness, authenticity, acceptance and tolerance for difference seem to be key aspects of both living and dying well. If I am lacking in compassion toward myself, how will I ever understand how to be present for and compassionate toward another? If I am not kind to myself, will I feel empty and depleted when I give all my kindness to others? If I decline opportunities to know myself intimately, running away from those spaces in myself that I fear or that bring unrest (for example), how will I be able to know what is most true and meaningful for me to explore and experience in however much time I have remaining on this earth? When I am authentic, I allow myself to be real and to be open to more meaningful connections with myself and with others. I allow myself to accept that I am imperfect and always will be, but I remain worthy of love and respect even if I walk a path that others might not choose. When I allow myself to accept where I am with regard to any wellness/disease state, I don't have to worry that I am "giving up" or "surrendering" to anything, unless I find myself surrendering to reality and letting go of pretense. If I am tolerant of others with regard to our differences, I recognize that they do not exist to meet my needs and that we can be present with each other while holding different beliefs and values. If I try to be mindful and live mindfully, will I always be "rewarded" with peace of mind or occupy a state of bliss? Not likely, but then that's not what justifies living AND dying mindfully.
And as a little caveat that may be useful for some and not so much for others.... In all the years that I was privileged to work in hospice, I discovered the value of "being versus doing"--not just as a hospice carer but also with regard to the person who was living while dying. Trust me, I don't minimize what might need doing, like clarifying end of life wishes and advocating for comfort, but once the "doing" needs are met, the "being with" is paramount. I cannot tell you how many times people were filled with regret over no allowing themselves to recognize their place at the end of their own lives sooner. I cannot tell you how many times dying people and their families regretted focusing so much on the "busyness" that can surround the end of life that they lost deeper connection with the "just being"--with themselves and with those precious to them. I cannot tell you how many times I found people almost frantic over trying to complete tasks so that their families would not be "burdened" by managing those tasks after their deaths. I cannot tell you how many times family members told me during bereavement how they wished they had focused more on loving and sharing time with the one who died. So, while "lists of things to do before one dies" may be important, they can detract from what gives end of life more meaning.
As always, hold what is meaningful to you, and with the breath of kindness, blow the rest away. In lovingkindness always....
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Very well written, Brenda.
I like what you wrote about just "being," and that's why I'm trying to get all the paperwork in order BEFORE I'm declared "hospice-worthy." I want it done and out of the way so I can just "BE" and enjoy the time I have left, and maybe do a few day trips or weekend trips (to the Mendocino coast, perhaps to Yosemite, but who knows how much of it will still be there after this year's fire season).
I think we should ALL have our trusts, wills, advance directives, etc. up to date way before the long arm of eventual death reaches out for us. Yes, I admit I was a bit frantic a few days ago, but I HAD TO BE. The whole brain radiation will indeed take a toll, and while I can still read and write, I NEEDED to get all that crap out of the way. And it's done. My Advance Directive is now on file in case the radiation causes more bleeding which leads to a stroke, etc. I don't want to be kept alive if I can no longer speak, walk, etc. I have made EXPLICIT instructions for NO feeding tubes, ventilators or even hydration and not to resuscitate.
Just let me go home as quickly as possible. I was instructed to keep a copy of my POLST (Physicians Orders for Life Sustaining Tx) and my Advance Directive with me AT ALL TIMES in case I'm somewhere and stroke out. The paramedics and ER staff will know exactly what to do. Palliative sedation until I pass peacefully away.
I am at peace about this now. Let's hope the brain rads don't leave me a lobotomized zombie vegetable.
Peace, love and light to you all,
Lita
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Love to you, Lita.
Tina
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Hugs and prayers to you, Lita.
Love, Lynne
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Brendatrue- thank you for your post. I wish people got hospice sooner. I know that it was wonderful for my mother- she thought that they were angels. She wanted "more supervision" in her care and having a nurse come and take her BP and see how she was-having a social worker talk to her about end of life and joy of life issues was so wonderfully meaningful for her. Made her last months so much better-not to mention help with pain meds or a wheelchair etc.
When she mentioned it to her oncologist- he was disapproving-even though he knew she was terminal! He said that it was giving up. So misinformed-he had nothing to offer to her-they did. If you have a miraculous recovery you can get back off hospice-it and hospice nurses are such a gift-
thank you
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Agreeing with you, Nkb.
I know of so many people who tell me that their loved one was on hospice, usually for a week or so, as if that was a long time. They all seem to feel that hospice is just for the very, very end, after they've "given up" and been discharged from the hospital.
But most of their loved ones had terminal conditions: cancer or end-stage COPD or CHF. The husband of my neighbor Lori was "still hoping for a miracle" even when he finally signed the papers of hospice late March. Lori was on hospice for only 6 weeks. She really needed hospice services for about 6 months.
I had another friend, Mary, from choir with MBC. She was actively living while on hospice, even from her bedroom. Hospice kept her comfortable. I remember her friend making homemade applesauce for her, and we brought her fresh flowers from our garden, especially lilacs. She was a devoted Aunt to her many nieces and nephews, and had adopted me as well. One of her nieces and I were both pregnant towards the end. She followed our pregnancies and wanted to know the sex of our babies. We told her the US technician was pretty sure our baby was a boy. The niece and husband wanted to be surprised on delivery, so they had the doctor write a note and seal it in an envelop. They gave it to Mary and she smiled. She passed before our babies were born. I played flute for her funeral, which was on my son's due date. He was born a week later. He's 22 now.
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I hope not to go into hospice, but time will tell. I do have palliative care nurses visit and provide support at home. It is a good idea to get them involved sooner than later. They are the experts in pain control and keeping other side effects in check. It also means my husband has support and can call them whenever he needs to.
I think it is the words, hospice and palliative care that frightens some people. It is not admitting defeat or that your death is imminent, it is about making your life more comfortable.
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Freya, I will start palliative care next Wednesday.
This evening I just met with the pastor who will officiate at my memorial service when the time comes. We had a delightful time going over song selections, verses, order of program, etc. He really praised me for the "gift" I have given my family in facing this head on and getting it out of the way. He said he wished MORE people would do this, especially metastatic and terminal people (people with other diseases like Lou Gherig's, etc.), and others. "This is YOUR memorial. You should pick out what you want included..." He'll keep my stuff in a file, and when my time comes, he'll add the date of my transition, print it out and do the mass printing and we're done. So many people just leave it to the family, and some times the family has no clue what to do, and it becomes very stressful.
In my case, one of my brain tumors could hemorrhage at any time, so I have to be prepared.
Peace and love out,
L
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Hi Lita, I think it's a good thing you are getting palliative care involved. I don't know if it's the same where you are, but here they provide so much more than just medical care. I had the pal care head nurse around this morning and she has added a cleaning service to my program. So I get 3 hours a week of house cleaning, and that can be extended if necessary. It will be nice to have someone do the bathroom, toilet, floors etc.
She also asked if I needed any equipment to make life easier. Walkers, wheelchairs, seats that fit over the toilet with arms to help get up, the list seemed endless. They are wonderful and they do everything in their power to make life easier, physically and mentally.
I'm so happy your meeting with the pastor was such a positive experience. I'm not having a service, just being cremated, so that did not need much organising (atheist to the end LOL) It is a great gift you are giving your family, it is so hard to think about these things when you are grieving.
lots of hugs
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Palliative care for me is mostly going to be about pain mgmt, coming neuropathy issues, and future brain deficits.
I already have a toilet booster seat, my wheelchair (which I got used last year to deal with the fact that I couldn't walk because of deep bone and nerve pain), rolling walker, and a bed brace bar so I can grab it and easily roll my self over in bed, so I don't think I'll need anything else until it's time to call in the hospital bed for hospice when the time comes. Basically I want the pal care so my family can have an extra resource to call upon.
Next task: lining up some anticipatory grief counseling so we can start to work thru some emotional issues.
L
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Many blessings, Lita. I haven't posted here for a while, so you don't "know" me, but I read your status and just wanted to reach out.
much love your way,
Lynn
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Lita, the grief counselling is such a good idea. I might look into something like that for my DH. He is struggling and it is breaking my heart.
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Lita- I love your take the bull by the horns, face it head on attitude. One of my kids is like that and I always feel like I am not in the dark about her thoughts or feelings and it is so reassuring.
Freya- Sometimes when I think how hard I have it with the tests, treatments, side effects, I feel like in some ways I actually have more control over this nightmare than DH does. I can't imagine how I would feel if the tables were turned and I could lose him. Lots of men shun the talk therapy but, I think it could be really helpful for him. My DH told his 3 closest friends when I was first diagnosed-with the mets diagnosis he chose not to share it with any of them. When they ask about me he says Im fine-that works for him and as long as he feels that he has enough support it is fine with me also.
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So...first post here. All done with any kind of treatment. Doc says a year (even he admits that he doesnt have a crystal ball!).
Cancer is in bones and lymph system, some other random places, no big organ, though. Doc says disease is moving slowly at this point.
In the last month I am using a cane to walk anywhere outside the house, legs feel weak. Some hip and back pain. Dizzy a lot of the time. So sleepy.
Am I just going to fade away?? I know that sounds kind of goofy...but that is how I feel!
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Artiecat- you are not considering Ibrance or hormone therapy like faslodex or have you done all that already?
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Yes, have done those. I am done with tx.
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Artiecat- my mom had esophageal cancer (caught early and had surgery-then lived 7 more years)She was very tough and by the time she complained again cancer was everywhere. she had a bad reaction to xeloda- so stopped it and went on hospice. I was going through chemo at the time and my lovely older sister moved in with her and took care of her. She got more tired, as time went on, lost some weight, walked less, but was totally mentally sharp until the end. She loved hospice, loved the nurses checking in on her, the social worker taking about end of life and joys of life etc. she had some pain, and some sad days, but, lots of good days. The day she needed help to get to the bathroom-she said goodbye, I'm not sticking around for this, she died that night.
I still miss her-but, she died in her home as she wanted to. I hope mine is like hers was. Hope this helps.
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I suggest ingesting CBD tincture. It has indeed helped people with pain and battling cancer. Hopefully since you live in CA you can find a dispensary. I take 20:1 cbd. Haven't been on chemo for 5 wks because of whole brain radiation, so I do believe it has helped with pain, etc.
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Nkb, Your mom sounded like an awesome person and it's no wonder you miss her. She faced her illness head on and dealt with it. She had spunk! I can only hope that I can live my final days with as much bravery as your mom had.
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Happily I do have a MMJ card and do use some edibles.
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Artiecat....GOOD FOR YOU! The MMJ helps me SO MUCH. I also use the CBD balms to rub into my sore hips and lower back, where I have the most mets.
Wouldn't hurt to do some research on CBD tinctures. LOTS of great anecdotal evidence out there.
Read of one instance where a mother out in the South Eastern US was only given about 6 mos to live, and her son wasn't having ANY of that. He went out and got her, brought her back to Calif, and started giving her CBD tincture, oil, etc. She went from 6 mos to EIGHTEEN MONTHS! And her quality of life was pretty darn good. She was off all chemo (of course....they declared her "end stage," and on hospice) and got by really well just from the CBDs. I can attest to them as well (see previous post).
I'll be starting Taxol on Oct 3, so the CBDs are my LIFE LINE to keeping this beast at bay!
L
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Artiecat, I wish I could answer your question as to whether you will just fade away or what. Btw, I do not think it's a goofy question at all. It is normal to think about it. I personally want to go gently, without suffering, but I realize that some of it is beyond my control. Everyone is unique, and every case of cancer seems to be different. Just as our doctors cannot predict with any precision how quickly our disease will progress, they cannot predict where our disease will spread to. I have read the posts from several people who have documented their final months, weeks, and days, and although there are some similarities, there are also many differences. Their cancers took different paths. Some suffered more than others. Their finals days came to some quickly, and for others it took longer than expected. I do want to say that a surprising number of them were able to continue with many of the normal joys and experiences of life for quite a while.
I respect you for making the decision to stop tx. Only you can determine when it is time to do that. Do you have people close to you to support you? Have you been in touch with any hospice resources? They do provide help, guidance, assistance, and medications to help keep you as comfortable as possible. They also give assistance to your family and/ or close friends. Is there anything you are planning to do or would like to do while you are still strong enough? A trip you want to take? A play you want to see? A course you would like to take like learning to cook a gourmet meal or learning to paint?
Let us know if there is anything we can do for you. There are many people here to support you.
Hugs and prayers from, Lynne
P.S. I love your smile. I cannot imagine that you will just fade away. I think there is so much personality behind thatsmile that your spirit will live in others for a long time.
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Looking into palliative sedation when the time comes.
Meeting a palliative care specialist on Wednesday. I am not yet ready for hospice, but MO wants me to get palliative on board now because of my 20+ brain mets.
Palliative sedation puts you in a coma-like state...no pain...as your body shuts down. You die very peacefully.
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I met with a palliative doc last week and really happy I did. She's a GP specializing in palliative/hospice care and chronic pain. She took the time to explain everything to me from now until my death. She will be my symptom fixer whether it be for nausea/vomiting, pain, whatever. She wants to see me regularly to assess and fix symptoms rather than be in reaction mode. When tx will be stopped, she will direct me in a hospice facility.
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Good to know, Linda.
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