A place to talk death and dying issues
Comments
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Beautifully said, Rosevalley.
Lita
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My topic for this sleepless night is grief. Come to think of it, grief has been weaving through all my topics lately.
Talking to Grief
Denise LevertovAh, Grief, I should not treat you
like a homeless dog
who comes to the back door
for a crust, for a meatless bone.
I should trust you.I should coax you
into the house and give you
your own corner,
a worn mat to lie on,
your own water dish.You think I don't know you've been living
under my porch.
You long for your real place to be readied
before winter comes. You need
your name,
your collar and tag. You need
the right to warn off intruders,
to consider
my house your own
and me your person
and yourself
my own dog.0 -
Beautiful words, rosevalley and brendatrue.
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I was so dumb!
20 years ago, I was told again that I'd die of breast cancer soon. My then-partner and I assembled a group to support us through what seemed soon and certain. I began holding "last visits". My living memorial was my 40th birthday bash. And I went on to have many life-threatening and life-altering medical misadventures. A few months ago I turned 60 with no fanfare.
The goal of the care group was to spread around the support and minimize any one person's responsibility and grief. After a decade, my primary relationship dis-integrated and the group fell apart. 4 1/2 years ago the group reassembled with many new members, but including my ex-partner.
I honestly thought that by telling everyone I was dying and shouldering the emotional burdens myself, that I'd somehow live the remainder of my life as a "celebration of life".
Then everyone else started dying - most of the group members lost parents, a few nearly lost partners, our mutual friends died and we cared for them through their dying times and their home funerals. I attended innumerable "celebrations of life" that did nothing to release the accumulating grief I felt around so much suffering and death.
And so many died of the disease we shared. It was harder and harder not to identify their situations as my own. How had I pulled out of nose dives again and again?
Not by hanging on to the past, what I could "still do" or "still had", but working creatively with my group and my circumstances.
Five years ago, I found the work of Francis Weller who I quoted above and within a short time, I joined him and others for a grief ritual. Suddenly, there was a way to release not only the grief I felt for others' deaths, but for my own dying. I'd cared about and for so many of my friends whose grief often overwhelmed them. And those folks were my Circle of Care.
In June 2012, shortly after yet another life-saving, life-altering surgery, I initiated a daylong private ritual with my Circle and Francis to release what held me back from fully showing up with others who I knew through contact and conversations also had un-contexted, unaddressed grief.
The grief ritual helped, but it wasn't a one-stop fix.
Yesterday, some of my current group members met with my hospice social worker again to
exploreexpress their anticipatory grief.I don't know what happened, though I pray it leads to less scripted conversations between us.
This morning, I feel sad about my family members and how much my dying has affected them throughout their lives. Because of my rare genetic condition, I've been dying for longer than any of my sibs have known me. Because of my advanced breast cancer, I've been dying for longer than any of my nieces & nephews have known me (they're in their teens and twenties).
With most I seem to have worn out my "cry wolf" option.
My brother says, "we'll try to get up there after the first of the year". Another never calls and seldom sends email. I'm not on Facebook. I miss the family news, but when I tune in under an alias, I see their lives continue to flow on without me.
I've been dying for so long, in some sense I'm already dead to them.
There's no context for them to hold this in.
Recently, I confirmed with my main carers that they will be there with me through this next spell, no matter how long it lasts.
I'm still dumb and getting dumber.
To think I could spare others' grief and "being a burden" by telling them I'm dying and spreading around the care has only made matters worse. As the level of daily care burdens they carry increases, our lives have become more intimate and connected...not less.
I've no advice to offer here.
It's too late for regrets, but I'm feeling sad this morning and am grateful that I can bring it here and know some of you will hear me.
I now allow others' feelings of all types into their process, even if I can't be burdened with their griefs.
I'm headed to a land called glory and release.
And will continue to live in love as long as possible.
loving kindness for all, Stephanie
Unedited. I just don't have the heart to reread this now.
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SattiPearl's living memorial
Patti Searle Memorial 2_21_2016
I just recently exhumed two news stories about my father's 1998 large living memorial and 35th AA birthday held on a Saturday afternoon. He died at home less than 36 hours later. Such irony. He was a born entertainer and a hard act to follow. I prefer my living memorial to be alive and intimate.
We each get to invent our own dying and memorials.
As our options widen, may we narrow our choices to what's right for us and our chosen families of love, Stephanie
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More on Francis Weller's grief work:
This kind of experience allows the individual and the community to enter five different doorways or as Francis Weller names them, the Five Gates of Grief. At the first gate, one grieves for the loss of someone or something we love. Many are familiar with this kind of loss but know little of the other four.
At the second gate, we grieve for places within us that have been wrapped in shame and banished from our awareness. The "infinite growth" paradigm feeds our shame and causes us to live small. These aspects of ourselves we perceive as defective, yet when we grieve the loss of them, we are able to restore our humanity. Sometimes this grief comes out in the form of anger or outrage as we welcome home exiled parts of ourselves. In any event, the parts of us that we have sent away have almost always served to protect us and keep us alive.
At the third gate we register the losses of the world such as the ones I have mentioned above. At this gate, we open to the great grief of the world and our loss of connection with nature. We allow ourselves to feel with the dying species and the polluted rivers.
At the fourth gate we realize that whether we are aware of it or not, there is much that we expected but did not receive. One of those expectations was the presence and support of community. Or as Francis Weller says, "On some level we are waiting for the village to appear so we can fully acknowledge our sorrows." A grief observance offers a kind of "village" in which we can safely feel our grief and be honored rather than shamed. Related to this gate is a feeling of emptiness many people in our culture feel, as well as a sense of purposelessness—not knowing how to offer our gifts to the community and have them seen and appreciated.
Finally, at the fifth gate, we recognize ancestral grief, that is, the grief we carry in our bodies from sorrows experienced by our ancestors or wounds inflicted by them. These ancestors may not be just our blood relatives or even part of our families. They may be members of tribes or groups of people who once lived on the land where we grew up or now inhabit. The grief of abuses toward Native Americans, African slaves, and the killing fields of some battlegrounds remain in the collective unconscious. As a culture we continue to carry the wounds inflicted on our ancestors and wounds they inflicted on people of color, women, children, and the earth.
It seems that congestive heart failure is one of the leading causes of death in this culture. Speaking metaphorically, I can only wonder if much of the "congestion" of our hearts stems from our inability to grieve. In fact, grief opens our hearts and fills them with compassion. When we grieve, we not only feel more alive, but as the Dagara woman suggested, our tears facilitate palpable joy. What is more, when we grieve with the support of the community, we not only realize that we are not alone, but our connection with the community deepens and grounds us in the soil of trust and resilience. Grief is also powerfully supports our activism, assuring that we act not just from our heads, but from the heart and soul.
(I added the bold type)
Podcast Francis Weller, MFT
Entering the Healing Ground: Grief, Ritual, and the Soul of the World
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Stephanie, let your sadness rise as round and full as it needs to, but also mind when the moment comes to introduce it to the well-heated oven that will turn it into bread. I'll raise a glass of wine with you. This is not a supper you will eat alone, my friend.
Lifting your arms from afar. Poems and music, bread and wine, golden sunshine and plump pumpkins, and much love from many sister sojourners here to lighten your burden of sadness. Feel better just as soon as you are able, friend.
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Stephanie,
Your path has been so long and treacherous, but you are still with us, dear one. You are a shimmering star of hope and endurance for everyone,
Yes, there will be days...weeks...even months of grieving and sadness. It is part of our all too human, mortal existence. Each of us must pass through the Five Gates of Grief in our own time, gaining healing and wisdom.
We thank you for illuminating the way for us with your special, shimmering star light.
Blessings, Lita
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Thank you!
Sometimes sorrow is so sweet.
Though I'm often able to find the pony is a room full of stinky sh*t, sometimes darker feelings come and go.
Feelings are like life and death, transient.
The only feeling I continue to resist is anger and even that is melting me in its heat.
I'm glad you see/understand the feelings and accept me as I am.
Thank you!
Love, the only eternal, Stephanie
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When my soul mate girlfriend died at 42 I was emotionally destroyed at her burial which was a month or so after her death. I sobbed as her urn was put in her grave and ran to touch her one last time. I gently wrapped a quilt over her urn before the hole was filled. I found out afterwards that her mother said I was "a bit much"!! I didn't go to the gathering after the burial as I wanted to be alone in my memories so I am so glad I never heard that.
I don't know of anyone who will be that grief stricken at my funeral. My DH will be stoic and my kids will be surprised as they've never taken my cancer seriously and my daughter once shamed me for "playing the cancer card". I've seen them twice since my stage IV diagnosis in January because we drove up to see them each time. 2 1/2 hour drive which they do twice as far to see their in laws but don't come see us. I don't want then at my deathbed. I want them now. I feel like telling my DH to not even call them as I die. They don't call or come visit now so why do it when I won't I even know it? Bitter? Yep.
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Barb...this is the place to let it all out. Don't have anyone at your deathbed who you don't want there.
I just went to the "Death, Dying and Hope" seminar at the Walnut Creek Community Cancer Center. It was very productive. About nine other ladies were there (unfortunately, there were a few no-shows, but that's understandable when you don't necessarily know how you're going to feel from day to day), and we went thru the emotions and expectations of the "dying process" and had lots of time for sharing. When I'm not feeling so tired, I type up the pertinent notes and post them.
It was a bit of a challenge for me...when I'm mid cycle with my chemo, DH usually drives, but he had to help DD with a photo shoot this afternoon. So I drove the 75 mile round trip myself (thank Heavens, traffic wasn't too bad), and threw a pair of "Depends" in a tote and hoped for the best ;o). Fortunately, I didn't have any emergencies or accidents. If I have any sort of meeting or event to go to on chemo cycle days, I usually eat chicken and rice soup the night before and have something very light on my stomach in the morning (just enough so I can take the Xeloda pills...).
Well, I'm pooped; I'm going to eat the casserole I made and crash out on the La-Z-Boy.
Have a good weekend...it was hot again today, so I'm enjoying the warmth of Indian summer.
Lita
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Here are my notes from the the seminar I attended yesterday.
Death, Dying and Hope Workshop - - - Bre Gentile, M.A., M.S.
Notes from 10/8/16, Cancer Support Center, Walnut Creek, CA
Dying is the process that leads to death.
A process that involves:
Physical processes (body's biological functions that sustain us as a living organism stop, losing our faculties)
Mental or cognitive processes (separation from family and friends, leaving behind unfinished business)
Emotional processes (being unprepared, fear and anxiety over what happens while dying
(pain/suffering) and what happens after death)
Elisabeth Kubler-Ross - 5 Emotional Stages:
Denial – This can't be true; it can't be happening to me
Anger – Our boundaries have been violated, leading to resentment and disappointment
Bargaining – Negotiating the terms and conditions of dying
Depression – Despair and grieving over the life you no longer have
Acceptance – Consenting to receive what has happened (or going to happen)
(Note: Accepting death and wanting death are two different things. You grieve in YOUR time and on YOUR terms.)
How we respond to the anticipation of death depends on:
Stage in our own life cycle (e.g. being in your 40s versus being in your 80s)
Family illness history
Previous losses (who else in your family has died, and how they died, and your reaction)
Coping style and coping mechanisms
Spiritual and/or religious affiliation
Presence or absence of support from family, friends, hospice workers, etc.
Additional stressors (family conflicts, work demands)
Anticipatory grief or mourning – Many doctors pooh pooh this as depression or anxiety, but it is REAL and it is NORMAL
Death anxiety/fear:
Can be emotional – Fear induced by a perceived threat to our existence
Cognitive – Our beliefs about death and the experience of death, and the idea of no longer existing
Experiential – How we experience fear and anxiety
Developmental – How death anxiety is expressed varies according to where we are in our life cycle; have we fulfilled our purpose; did we live the way we wanted; our future has been cut short
4 Dimensions of death anxiety:
Fear of the unknown
Fear of the pain and suffering of DYING, not our actual death
Fear of loneliness and isolation
Fear of personal extinction
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Death Anxiety Scale (developed in 1982) Rate is as 0 = not at all, 1 = somewhat, 2 = very much
(Give yourself a score of 0 to 2 on the following questions and then tally them)
Do you worry about dying?
Does it bother you that you may die before you have done everything you wanted to do?
Do you worry that you may be ill for a long time before you die?
Does it upset you to think others may see you suffering before you die?
Do you worry that dying may be very painful?
Do you worry that the people closest to you won't be with you when you are dying?
Do you worry that you may be alone when you are dying?
Does the thought bother you that you might lose control of your mind before death?
Do you worry that expenses connected with your dying will be a burden to other family members?
Do you worry that your instructions or wishes about your belongings may not be carried out after you die?
Are you afraid that you may be buried/cremated before you are really dead?
Does the thought of leaving loved ones behind when you die disturb you?
Do you worry that those you care about may not remember you after you die?
Do you worry that you may be gone forever after you die?
Are you worried about not knowing what to expect after death?
High Anxiety = 25-30, Moderate Anxiety = 18-24, Low Anxiety = 1-17
(Your score may change from month to month as death becomes more imminent.)
Death Acceptance: "To be prepared for death is to be prepared for living; to die well is to live well."
Life review – brings order and coherence to life
Self-acceptance – connect to the essence of who you are as a person OUTSIDE of cancer
Religious/Spiritual beliefs – your beliefs will help you on your quest for meaning
Embracing your own life – living your life to its fullest (what is my purpose NOW?)
Death (and life) education – when we contemplate our death, we automatically contemplate our own lives
Finding Hope
Shane Lopez, Ph.D. "Hope is a strong and confident expectation that tomorrow will be better than today."
Bre Gentile, M.A., M.S. "Hope is not a destination, it's a strategy or tool that we use to cope with our mortality."
We must identify our source of hope. We must invest in what makes us the most excited now. Use hope to go back to your life purpose.
Helpful websites:
http://www.death-and-dying.org
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Thanks for your update on your workshop, Lita!
I mostly concur, though I do take exception with the five stages of grief - because the process isn't linear or complete in one pass. Kubler-Ross's work was on the dying at the very end-of-life, but this handy chart has been applied to every grief, including bereavement. Ugh, our linear minds seek simple solutions for complex situations.
It's important to understand that our carers undergo their own grief process and need support, often outside what we the patients receive.
We, my carers and I, have found great support through palliative care (began in 2011) and now hospice care.
Here are two resources I created on the topic:
End-of-life resources for people with metastatic cancer and their carers (needs updating!)
I Wish I'd Known Earlier...Palliative Care Is Not a Mandate Not to Treat (includes many links)
Lita, thanks for your update on the Cancer Support Community in Walnut Creek. My East Bay friends have attended it and worked there over many decades! I still think of it as The Wellness Community and it still offers so many wonderful resources to the community it serves.
warmest of healing wishes for all, Stephanie who's still dying after all these months -11 months on hospice and still counting down to the ending line.
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Hi. I am new to this site. Haven't posted much. My mom was diagnosed with Mets in liver and bone in April 2016. She took 3 doses of docetaxel, then 2 doses of vinurelbine, then 2 doses of lipodox. Progression was seen Everytime. Now admitted at the hospital since 6 days. Vitals are okay. But she is unresponsive since 2 days. Doctors have put her on end of life supportive therapy. She is on parental nutrition only. No oral intake. It's killing me see her in this kind of pain. She deserved so much better. She did so much for me for 25 yrs. And I didn't get that chance for even a yr. I don't know wat to do next. She sees me, knows I am there but she can't speak a word to me. I wanted to so many things for her. Just when I was about to get a job and settled, I was given this shock. I have no idea how to deal with it.
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Oh Victor, what a terrible turn of events and so difficult for you to face all at once - your mother's suffering, your own loss of beloved mother, her decline.
You can still be there with her. Those who work with people at the end-of-life say that hearing is the last to go, be sure to love her up good. There are 4 things to say at end-of-life according to hospice physician Ira Byock: "Please forgive me," "I forgive you," "Thank you," and "I love you."
I also like to say good-bye, so my dying loved ones know that I'm not trying to hold on and keep them alive.
As someone at the end-of-life myself, it's wonderful to know that life will continue without my physical presence and I'm released to go onto the next phase of my adventure.
You may also want to visit this bco community:
For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis
Victor, this is so difficult for you. Be sure to reach out to hospice - in the USA federal law requires that they provide bereavemnt counseling for carers, both before and after their loved one's death. And hospice can help with pain control, if you give them a chance to come through for you. Most people with cancer who enroll with hospice live less than 2 weeks - hardly long enough to get good symptom control for a quality of living while dying. They have resources that I hope you'll use!
Victor, all loving kindness during this difficult, yet beautiful time. Life is so precious, treasure it.
warm light surrounding your mother and you, Stephanie
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Viktor, sending prayers and support your way. It really touched me as I was Dx with bone and liver mets too IN APRIL. We never know how many days we have left with this disease. Treasure these last days with your mom.
Lita
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Viktorb- I am joining the circle of support for you and your Mom. May you be there for her and surround her with love. I am sorry the chemos didn't work for her. May you all find peace.
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Victor, I agree with Stephanie for sure about hospice if you have not already requested. They can address any discomfort she may be having.
As far as what to do. Just be there. Talk to her as you can. Say whatever may be on your mind. She can hear you and knows you are there.
I went through similar with my own father's cancer as a teenager. My brothers and I were not always sure what to say to Dad either. Finally, we just told him about school, what was going on at home. Making terrible jokes since he had quite a warped sense of humour. This makes me believe that it was a little less scary for him. His face always relaxed when we were there, even when he could not respond the last couple of times.
I am so sorry you are going through this, my best wishes go with you.
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Thank you Stephanie, Lita, Rosevalley And Mara51506 for all your love and support. Mean's a lot. we don't have a dedicated hospice service here in our country unfortunately. For pain she is having a buprenorphine patch. Severe edema and ascites is causing discomfort. Regular tapping is being done. I keep speaking to her and soothing her. Hope she feels better. Had she passed on without so much suffering, I would have felt better and accepted it. But all her life she has suffered and in the end also more pain. She worked hard and brought up me and my brother as a single mom without us having to feel short of anything. She sacrificed so much. It's ripping me apart ito see her like this.
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Hi Viktor,
While I so wish your mother had better pain control, I applaud your ability/willingness to keep loving her, even while fearing her death and the loss that will mean.
You are necessarily brave to choose this response, rather than running away in fear. This is your once in a lifetime possibility.
Your mum sounds like an amazing person and it sounds like you've inherited her dedication and devotion.
Please keep caring for one another as you've done for so long. Only you can bring your unique Viktor presence to your mother now.
Holding you in caring, healing light during this difficult time, Stephanie
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Viktor, sending prayers of love and peace to you and your Mom. Along with hearing, she can feel the love you have for her. She is fortunate to have a son to be with her and comfort her at this stage. Be blessed.
Shelley
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Viktor, my son is just a few years younger than you. When it's my time, I really want to know my kids will be ok. Please tell your mom you are going to be ok.. then live it. BE ok! It's every mother's wish.
Bless you and your siblings.
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And now, from the "It's Never Too Soon to Prepare Department" . . .
I've had a little time to do some research on full body donations (my oldest brother who has congestive heart failure and COPD wants to donate his body, too), and here's what I've found:
www.mylifewishes.com Very good site. They have a list of places all over the country where you can donate your body.
Local medical centers for Nor Calif:
UCSF Whole Body Program - 415-476-1981 (no website or email listed for the UCSF Med Ctr)
anatomy@stanford.edu (email directly to Stanford University Medical Center)
Science Care: 800-417-3747 www.medcure.org/body-donation (they are more of a clearing house/facilitator, nationwide, but I'd recommend calling the centers directly; refer to the state listings from mylifewishes.com)
http://www.lifelegacy.org/ This is a national site, too
After reviewing the sites, you basically need to pre-register with the institution at least 30 days before you die (lots of healthy people just sign up years ahead of time so they are already in the institution's registry).
The med school or institution will pick up the body, but make sure next of kin calls within 24 hours after death. After the school picks up the body, they will do with it what they need to and then cremate the remains for free. They will put the remains in a plain, standard urn and either bury them at their site or return the urn to the next of kin/family in approximately six (6) weeks.
This is pretty economical. You don't really need to pay for anything else except interment (headstone) or placement in a mausoleum.
There ARE conditions, however:
You can't have AIDS
You can't have Hepatitis A, B, C, etc.
You can't have died from kidney or liver failure
You can't have excessive edema or liver ascites (lots of water in the body)
You can't have died from any communicable, bacterial disease
You can't be morbidly obese
You can't have died in a car accident or any other accident where your body is seriously mangled
The institution may have other disqualifications, so you need to call them first.
It's okay if:
You died from heart failure
You died from cancer
You died from diabetes
Once again, good idea to call first.
The sites I visited said they actually NEED specimens such as the above for med students to study and so they can continue to do research. This is a way to "give back." I'm seriously thinking of doing this as long as I still qualify. If my liver blows up, I may not be able to do it, depending on which organization I choose, so I'll probably call up the med school when I know I have about six months left. I like the idea that it's very economical. If I don't qualify, my family will have to pay for my cremation/interment or for a "green burial." I need to do a bit of research on that. From what I've heard here and there, they don't embalm the body and just put you in something that will decompose quickly. Cremation, they say, isn't green because of the energy required to burn the remains.
Any other thoughts?
Lita
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Hi Lita,
Thanks for sharing this. Many cancer folks get hung up on not being able to donate organs (except for a portion of the eyes, I think).
But there are many ways to serve science and medicine, including donation of the body to a medical school.
I've read that cadavers are treated with more respect these days and given send-offs by the students they've served.
A far cry when bodies used to be exhumed from graveyards by grave-robbing, body vendors. Yikes! I'm glad those bad old days have passed!
There are now Natural Death Care movements all around the world. Here's a link to find some in the USA - http://homefuneralalliance.org
Green burial sounds good, until you realize that they're expensive to have and maintain and you're full of toxins that will dissolve into the earth and water.
Cremation isn't really green, because those toxins are released by fire into the air and water.
Folks are signing up for the Mushroom Burial Suit, though you and I will probably die before then. https://www.ted.com/talks/jae_rhim_lee
This is a fabulous, free online journal for finding resources around the English-speaking world: Mission: Providing education on conscious, holistic, and green approaches to end of life, including family-directed home-based after-death care also known as "home funerals."
http://www.naturaltransitions.org
So much to share, but I've been watching this movement unfold for many years. Expanding one's after-death options is a stretch - some of it is old wisdom born of many centuries. Other parts seem new and different from the usual way of doing death in the industrialized West.
At this point, I'm anticipating an after-death, at-home vigil and then cremation. I've already devoted a huge portion of my body and energy to medicine and would like to keep what's left together as the main part of me ventures forth on my next healing adventure.
Patiently waiting, Stephanie
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My BIL is a doctor. He told me about his cadaver in med school. He said all the med students treated their cadavers with respect and care, and called them by name. I'm not sure if the med students knew the cadaver's actual name, or if the med students named their cadavers.
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Thanks for adding some new options, Stephanie. I'll check them out.
Lita
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Mom passed away today.
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I am so sorry, Viktorb. I sent you a private message.
Toscaxoxo
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Viktorb- truly the greatest thing you can do to honor your Mother is to live your life and thrive. To love and be loved is the best life offers. That's what all Mom's want, wish and hope for for their children. I am sorry she has passed but she is free from cancer and will live in your heart. May her memory and love sustain you.
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