A place to talk death and dying issues
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Am sorting through my end-of-life documents and found this exercise that worked for me. You too?
much loving kindness for us all, Stephanie
Letting Go Exercise
http://www.considertheconversation.org/sites/default/files/CTC%20Discussion%20Guide.pdf
Instructions: Give each participant a pencil and 12 small, separate pieces of paper. Once materials are distributed, proceed by communicating the following directions:
1. Write the following on 12 small, separate pieces of paper:
• Three people who are dear to you
• Three possessions you value
• Three activities you especially enjoy
• Three personal characteristics of which you are proud
2. Place all 12 pieces of paper face up in front of you.
You haven't been feeling well lately and after putting it off, you finally decide to visit your doctor. After having some tests, the doctor calls you in and says that she is sorry to inform you that you have cancer and that it has spread throughout your body. You can't believe what you are hearing—time seems to stop and it is as though you are watching the scene from outside your body. After a moment, you recover your senses enough to ask, "How long do I have?" She replies, "Probably about a year...
3. Tear up three pieces of paper.
...It is three months later. You are at home and you feel OK. There have been no major symptoms yet, but your whole life has changed. Who are you? Who is with you? Does everyone in your circle know you have cancer? What is it that you want most in your life?...
4. Tear up three pieces of paper.
...It is now six months since your diagnosis. You are definitely ill. You tire easily and daily activities are difficult. Pain is becoming an issue. You need assistance with many things. Who are you? Who is with you? Who do you wish was with you? Is there anyone you still have not told about your prognosis?...
5. Tear up two pieces of paper.
...Cancer is your reality and you barely have enough energy to get through each day. You now spend most of the time in bed. You are sleeping more and need greater amounts of medication to control the pain. You need help with activities of daily living, including bathing, using the bathroom, dressing and undressing—even eating. You are becoming dependent on people and pills and have lost any sense of privacy....
6. Tear up two pieces of paper.
...You now cannot get out of bed—even to go to the bathroom. You have a catheter. Pain medication is being administered through an I.V. pump. You are awake for only brief periods each day; you have stopped eating and are not even strong enough to talk. Who are you now? What is important to you? Who is there? Who do you wish was there?...
7. Turn over the last two pieces of paper.
...Take one piece of paper from each person, leaving them with one...
8. Read the last piece of paper; tear it up.
...You have died.
At the end of the exercise, it is often helpful for participants to have the opportunity to process findings and feelings with others.
Please forgive me. I forgive you. Thank you. I love you. These four simple statements are powerful tools for improving your relationships and your life. As a doctor caring for seriously ill patients for nearly 15 years of emergency medicine practice and more than 25 years in hospice and palliative care, I have taught hundreds of patients who were facing life's end, when suffering can be profound, to say the Four Things. But the Four Things apply at any time. Comprising just 11 words, these four short sentences carry the core wisdom of what people who are dying have taught me about what matters most in life. —Ira Byock, MD, from his book The Four Things That Matter Most
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This too rose to the surface as relevant to this topic...read at your own risk!
healing blessings all, Stephanie
10 Tips for Vigiling and Establishing Sacred Presence
By Megory Anderson
Reclaim Grace and Dignity for Your Dying Loved One
Thoughts at bedside: 10 ideas to engage family and friends in "Spiritual Presence" for your loved-one.
1) De-clutter the bedside area.
Set the space apart using candles, music, etc., to create a calm, peaceful atmosphere. This will be the "sacred space" around your dying loved-one.
2) Within this physical sacred space, keep the focus of any conversation on the dying person.
Allow intentional conversation with or about the person, but no idle chatter among visitors: keep that outside.
3) Take cues from your loved-one regarding practical matters.
If there is no indication that s/he would like to discuss or handle practical things, keep these things well away from the sacred space. If you know the person's wishes regarding privacy, make sure they are respected.
4) Take turns or assign someone as "door keeper" to shepherd the transition from the outside hubbub to the sacred space.
It can often be helpful to establish a daily or weekly schedule with family members.
5) Take cues from your loved-one regarding not only physical needs, but emotional and spiritual as well.
Don't take center stage with your own emotions. While your own needs are certainly valid, if all eyes are on you and the comfort you need, consider stepping outside the sacred space to allow the focus to re-shift to the loved-one.
6) When s/he begins actively dying, the most important element of vigiling is your calm presence. It is a solemn gift.
To hold this quiet space so your loved-one can transition as easily as possible, use tools that you have already gathered in a "vigiling toolkit". Items to include: special objects to hold that have personal or religious meaning (a prayer shawl, a favorite scarf, a rosary), reflective readings or books or prayers, music, candles (flame or battery). Traditional prayers are often used, but other favorite readings can be appropriate, too. The idea is to personalize these items for your loved-one.
7) If you are at home, don't be surprised if family pets want to participate.
If possible, let them behave naturally: on the bed or on your lap, etc.
8) Friends/family who can't physically be there during this time can still be involved from afar.
For example, someone long-distance could be in charge of mass communications, informational emails, etc. There are many online choices such as candle-lighting websites, creating a Facebook page with updates, and other internet options.
9) Ask absent friends/family to vigil with you at a designated time once or twice daily.
They could do this from anywhere in the world, simply taking a few minutes in shared thought/prayer, listening to music, lighting a candle, etc.
10) Don't worry about making practical calls immediately after s/he passes.
Spending some time in silence can be profound and meaningful. Then, consider designating one person to go do practical things while one continues to sit quietly for as long as possible.
© Megory Anderson 2010 www.SacredDying.org
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Mod test
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Stephanie, and everyone else,
Thank you for your offerings here.
Two days ago was my four year anniversary of being diagnosed with stage IV cancer. In July 2015 it had progressed to my organs ("only" bone mets previously) and so I decided to have a memorial before I died. That was in February and it was the most amazing day of my life. Truly....My MO came, and I shared with him on stage that his care of me had an impact on the 250 people here who represented my vast community of loving friends and family. He was blown away.
I've recently stopped chemo. Cancer has progressed in my liver and chest lymph nodes while on it so it obviously was not working. Am now on Faslodex.
My MO informed me that I likely have less than a year to live, so I left my beloved job in software sales, and am creating experiences and memories, mostly involving the beaches at the ocean, with many I will leave behind. I feel pretty good save for the shortness of breath that keeps this Type A personality moving very slowly. Oxygen is being delivered tomorrow.
I have a meeting set up this week with a local crematorium, and have met with my accountant and my executor to make sure everything is in order. I've had my POLST since 2012, plus DPOA, advanced directives and will. Since I live in a state with DWD laws in place, I will be taking that option.
As you can probably tell, I'm pretty pragmatic about all this and I intend to love every minute. I took up a knitting project and got a lesson last Sunday for some advanced stitches I didn't know how to do. Keep the brain learning!
Much love to you all no matter what is going on
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Sending blessings Sattipearl. You are an inspiration. All of us Stage IV ladies MUST inevitably face our "transitions." I'm Stage IV from the gate since April 2016 with mets in liver, pancreas, adrenals, kidney, bladder, spine, pelvic bones, and hip bones. I'm taking a class at the Community Cancer Center in Walnut Creek next Saturday on preparing for death. Still have to turn in my POLST (my doctor is on vacation, so I'll have to do it next month).
Last week, I attended a seminar on the various religious views on death. I'm considering the DWD option. I'm not Catholic or Muslim (these two religions are totally against it). Protestant Christians, according to the Protestant Chaplain in attendance, take a more liberal, progressive view. I spoke with the rabbi afterwards, and most Jewish denominations are more progressive as well. We concurred that even if you take the barbiturate cocktail, God is still in charge. I did research on DWD, as I'm sure you already have, and after swallowing the mixture, one falls asleep within 10-20 minutes, and then it takes anywhere from one hour to six or seven for the body to totally shut down. Here's where I feel God is in control: Some people die quickly, within two hours, and others take the full seven. HE decides how long it's going to take, and that brings me great comfort. Of course, you do have jump thru the hoops to get the DWD ball rolling: Send a verbal request, get two doctors to confirm your terminal status, send a formal written request, be seen by a psychologist, send the final verbal request and that's it. The process takes 2-3 weeks, more or less, depending on how quickly you can get the doctor clearances. If you don't want to wait 2-3 wks, you can always do what my best friend's mom did back in June: Decline all meds except those that will reduce pain, stop eating and stop all fluids. It will then take about a week to go, give or take a day or two. With full hospice, that might not be a bad option, so I'm considering that as well.
Prayers for peace and comfort going out your way. Feel free to PM me as I am in Union City, just north of you.
Lita
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I want to make a real post to this topic in response to Lita and SattiPearl...but I'm still in the reading cycle of my morning routine. Thanks for your patience...hope to return later today...healing regards and loving kindness for all, Stephanie
xxx
Here's something about an earlier topic - turning off pacemakers. This one from the UK.
Is turning off a pacemaker ever the right thing to do? When a life-saving heart implant becomes a painful burden
- After almost 20 years of living with a pacemaker, Nina made a decision
- Ms Adamowicz, 71, no longer wanted the device that was keeping her alive
- After some consideration doctors agreed, and the woman died peacefully
- Thought to be the first case in the UK, their choice has sparked controversy
Read more: http://www.dailymail.co.uk/health/article-3808365/...
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Thanks Longterm, that was very in-depth. I know it says a pacemaker won't start a heart "once it stops" but it's the stopping process that worries me and no articles seem to address it. If my heart rhythm changes, the pacemaker will kick in and put it back to a regular beat. So as I'm dying and my heart becomes part of the process, my pacemaker will keep starting my heartbeat back up to a regular beat. So I'll be brain dead with a nicely pumping heart....no one seems to explain how it would be any different.
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barbe, just a couple of thoughts....
An advance care directive* and/or POLST/POST form can be used to clarify your specific wishes regarding your pacemaker at end of life. For example, you can be clear about the kind of circumstances in which you want your pacemaker to be deactivated, such as if disease is progressing and negatively affecting your quality of life and will ultimately lead to your death. And you can be clear about the kind of circumstances in which you'd like the device to remain activated, for example if you have good quality of life in spite of disease progression and having a regular heartrate is critical to your conception of comfort at end of life.
It may be helpful to know that brain death means both your higher brain structures and your brain stem are no longer functional. (That's why it's also known as whole brain death.) If your brain stem is no longer functional, your heart won't be beating. If you are brain dead, you are indeed dead. If you are in a persistent vegetative state or irreversible coma, your brain stem is still maintaining your basic body functions, like your heart rate. People often confuse "brain death" with "persistent vegetative state." You may specify in your advance directive that you want your PM to be deactivated if you are in PVS or a coma.
Every life is unique and the dying process may vary from one person to the next, so it's important that you clarify what kind of comfort is important to you at end of life and what you want your death to feel like to the extent that you are able to shape it. Have you considered talking to your cardiologist about your specific concerns regarding end of life care and seeking her/his input on how you might best clarify your wishes regarding your PM? If you have done so and not been satisfied with the answers (possible given how often cardiologists don't have good skills in this area), ask again until you get the answers you need to give you peace of mind and clarity to the degree possible. We must challenge our MDs to meet a higher standard of care when the care they provide is inadequate
By the way, are you aware that you can donate your pacemaker so that it may be given to someone unable to afford one in order to improve their quality of life?
*An additional note for those who have completed advance care directive forms or are contemplating doing so. You do not have to limit your directive to the basic choices that are included on most forms. You can create an addendum that includes all the specifics that you wish to include, or you can use the basic form as a template and add sections to clarify where you'd like.
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Brenda thanks for your response. My pacemaker is already 5 years old and I can't get an MRI as it's not the new type that can go through an MRI. I'm looking forward to getting the batteries changed in 5 years so that I can get the new kind of pm. Being stage IV and not being able to have an MRI is very stressful. PET scans are rare in Canada but as my health services have all been free I really can't complain.
I gotta find a new cardiologist.....
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In the reading portion of my morning.
Found this and thought of us. It's autumn in the N. hemisphere and all around me leaves are changing color, falling, tumbling in the wind, being crushed underfoot. So beautiful and a reminder of death's cool breath at my neck:
by Carrie Stearns
The air is taking on that fall feeling. Cool nights filled with cricket song giving way to warm days. My garden is speaking of fall too. Sunflowers bent over heavy with seed and the last of the sweet cherry tomatoes ripening on the vine.
Fall is the season of brilliance. The quality of light holds a particular crisp golden shimmer that I never tire of. In another month the sunflower seeds left behind by the birds and squirrels will be on the ground and the leaves will begin to turn themselves into a blaze of color before they too float to the ground. Fall, in all its brilliance, is the season of death. The earth makes no argument against it. There is no attempt to avoid it or cover it up. Everything simply sheds itself in a rush of beauty.
What if we allowed ourselves to turn toward dying the way the earth does, when our time comes? Might we also discover or taste a kind of brilliance? My story is about the grace of turning toward death with my beloved partner Sarah. I share it in hopes of casting seeds of encouragement to others. Facing into death and the storms of grief have much to teach us about life.
Continued at link in title above.
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Not sure if this is the right place to post this or not, and it may come of badly, but I am hoping that you will all understand. This really is more of a way for me to vent my emotions that I probably wouldn't have an outlet to share anyplace else.
As some of you know (or can see by my signature) I was diagnosed Stage 4 de novo 6 days before my 33rd birthday. At the time, I was extremely fortunate enough to have 3 living grandparents (who were 93 and 91, and 90). All three were very healthy, both mentally and physically, for their ages. My parents and I struggled with how to do we tell them, and to what extent, about my diagnosis. We knew that it would break their hearts knowing that they were all living healthy lives into their 90's and their granddaughter (a teenage leukemia survivor), might not make it past 35. My parents also could not comprehend the thought that their parents might outlive their own daughter by almost 60 years.
In the 2.5 years since my diagnosis, my dad's mother passed away last August at 94 from pancreatic cancer. It was very quick because of her advanced age. Now my maternal grandmother, who turned 92 in April, is in the hospital after having babbling nonsense in Yiddish, followed by a massive seizure. We are now all just waiting to see if she wakes up. We are hoping that she doesn't since she is doesn't appear to be in pain or aware of what is happening. We also think that my grandfather, who turned 93 in February, will not live long without her, and will die of a broken heart after being married for 70!! years.
Here is the part that may come off badly and that I feel like I cannot share with my family. As sad as I am, since I have always been extremely close to all of my grandparents, I feel very relieved that I will most likely outlive all three of them. As horrible as this sounds, it was kind of a bucket list item for me because I knew it would break my family if it was the other way around.
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Becs- You love your Grandparents and they clearly love you. So this is a wonderful thing. That they died maybe not knowing all about your situation is up to you. I suppose I would keep it from them. Your parents know and will support you. It's a stinking jip that you have to endure this at such a young age. It seems so unfair after having been a leukemia survivor as a child. Lots of love and support for you and your parents. Post and vent whenever you feel up to it!
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Hi Becs,
We absolutely support emotional outbursts at this topic - let loose!
I was 34 when diagnosed with bilateral breast cancer and it soon recurred. Neither of my bo-parents dealt well with my diagnosis, so I sheltered them from the worst of it for many years.
Then, irony of ironies, my father was diagnosed with lung cancer and died within 9 months (no, he hadn't smoked in >20 years, though he sat in plenty of smoke-filled AA meetings and faculty staff rooms). He then officially adopted me as his cancer guide and mentor...also as his death coach. Quite an honor for me and shoes worth growing into.
I did ease his way and we became closer in the presence of death than we had in life.My mother struggled and I was so grateful when she got dementia, because she didn't seem to know me any more and I figured she wouldn't miss me when I was gone. While I continued to visit her at her assisted living home, she saw me as a friendly guest, but never acted like she was my mother...wait, she did introduce me as her mother several times - so she did know we were somehow related, though not exactly how. Then, she got pneumonia, went on hospice and died. But in her final two weeks, she recognized me, responded coherently, identified others in person and in her photo slide show.
And mom waited up for me to come on the day of her death. I told her I'd come back on Wednesday morning at 9 AM...she died promptly at 12:05, as I was stroking her hair and singing to her (song below). My youngest sister was there and all felt complete. Mom even left time for us to care for her body and make the cremation arrangements that afternoon.
Life and death are just so much more vast & mysterious than I can even marvel!
Becs, I don't think you're selfish at all to wish to spare your grandparents' suffering. And it sounds like your parents have come to grips with anticipatory grief, though the fact of your death will forever effect them. Your caring kindness is impressive.
May all unfold in due time!
Wishing you as long and healthy a life as you can manage, Stephanie
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Bec I get it. And it's logical how you feel too. There is a kind of flow chart of death and we really shouldn't go before our parents or grandparents. Hugs...
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Becs, you are EXTREMELY fortunate to have had your beloved grandparents for so long. Three of my grandparents had already passed before I was even born. My maternal grandmother and I were close, and she passed when I was in college. Sadly, my mother died six years earlier from cancer, when I was in high school, and it was very hard on my grandmother. [Mom didn't even tell her how sick she was. She wanted to spare Grammy, but I think it would have helped if Grammy knew...well, water under the bridge, as they say.]
In terms of whether you should tell your grandfather is up to you, as Rosevalley said. If it were me, I suppose I'd ask myself, "What am I trying to achieve here? Am I telling him to make myself feel better? It's certainly not going to make HIM feel better since he's already dealing with the impending death my grandmother." Sometimes things are better left unsaid. I'd probably keep it to myself unless he senses that you are not doing very well and specifically brings it up by asking you. Then, you can just break it to him gently. [I am so inspired by the women with MAJOR mets, ascites, etc. who have made it past 5 years...I hope you and I can do the same. You've already made it past 2.5 years, and brain mets are no fun.]
I don't know how spiritual you are, but when one is at odds, it never hurts to seek counsel from a trusted member of the clergy. Is there a local rabbi you can consult?
Don't feel bad about the relief you feel that you will outlive them.
Keep us posted, and know that we send hugs and prayers your way.
Lita
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Thanks everyone for sharing your own stories and support. I was worried that my post would somehow come off as me being happy that my grandparents are slowly dying off. My maternal grandmother is actually doing better! She has been going back and forth between being awake and having to be sedated. She is awake now and the most lucid she has been in a very long-time! My mother is there with her now and we were able to Facetime. She knew exactly who I was and told me that I was her favorite grandchild (although she probably said that to all of us!)
She had led an amazing life, so no matter what happens, we know it was well lived and very accomplished. My grandmother immigrated to NYC from Russia when she was 2, learned English from listening to other people, graduated from college (which is extremely rare for a woman in that time, let alone an immigrant), and started her own very successful antique business, with an amazing celebrity clientele (including Michael Jackson!). She had/has a wonderful and happy marriage, raised 3 children, got to see all 6 of her grandchildren grow into adults (the youngest is now 25), attend 2 of their weddings, and got to meet her great-grandson.
In something very circle of life, my step brother and sister-in-law (my mother's husband son and his wife, who happens to be a rabbi!) had their first child yesterday. So in addition to my brother's son, who is now 17 months, I have a brand new step-nephew! Between the start of one life, and the ending of another, my mother and step-father don't know what to do first!
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Becs you have a wonderful family and a rich legacy! Enjoy those new babies and getting to know them. We support you and are here to listen along the journey. Hope you enjoy this lovely Fall day.
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The circle of life.....
I am expecting my 6th grandchild- a little girl Raylyn in January. I pray I get to meet her.
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Becs-
It's not selfish to wish for you to outlive them. They have had a long life and it is the natural order of them to go before their grandchild. I feel the same way about my Dad. He is only 74, and he takes death of his close loved ones very hard. He was a mess when I had to tell him I was Stage 1 in 2009, and then Stage 4 in 2013. You would've even thought I was dead already, how he reacted. It took him some time to believe I had a few good years in me left. (And it has been three good years, and I got to take a trip to Hawaii with him and my loving step-mom and family). As much as it would pain me, because I love my Dad so much, I would rather him go before me so he doesn't have to experience the deep pain of losing your youngest daughter to cancer in her mid-40's. But, we don't have control of this, and I don't want my Dad (or myself) dying anytime soon. I'm sorry for your loss, but I'm glad the natural order of life played out for you. God bless you in your grief
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AKShelley,
So happy to see you post!
How are you doing now that fall is upon the N. Hemisphere and you're in the far north of the USA?
So happy your son and you made your road trip earlier this year!
warmest wishes, Stephanie
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Hi Stephanie--I love fall. I did have a fairly decent summer after my trip with my son, which was such a blessing. I didn't realize how sick I was on that trip, until I came home and started CMF. My first two rounds were bad--I thought I was losing the battle. The MO reduced the dosing by 20% and that has made it a little bit easier. I did see my TM drop a lot, so I have been doing better, albeit managing dumb s/e. But I had a lot of time in the sun in my back yard, and Wasilla, AK had a good summer. My garden flourished, and I had to learn how to can and put up food. I don't get out every day, but I sure enjoy my "living yard". Sometimes I lay on my deck and listen to the turkeys, geese, ducks, and chickens, and I am thankful for my husband who does all the yard chores. I hope I don't get cabin fever being home so much this winter, but I love winter too. I hope it dumps a ton of snow on us. We haven't had good snow in several years. The East Coast has been robbing us of our snow.
My son is now in college & doing well. My step son has joined the Army and goes to boot camp soon. My husband is going to nursing school in January, and my step-daughter is busy at school. Guess it's time for me to settle in and be happy at home. All these years of wanting to be a stay at home Mom, and I finally am, and everyone's gone. Life is weird.
Stephanie--what part of CA do you live in? What is the weather like now? How are you feeling now?
Shelley
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Hi Shelley,
So glad you continue to fare well into fall!
I came to bco last November to meet Rosevalley and join this community, because I was just a few weeks into home hospice care and here it is autumn again - gray skies and first rain since spring yesterday. Well, it sprinkled a bit in the northern SF Bay Area.
I'm always surprised that I'm still alive and doing as well as I am, though symptoms accumulate (my belly is hugely distended with liver and ascites) and I sleep more than not.
Am glad I can come to BCO and participate as my outer world is pretty small now.
Shelley, nice to see you in your garden in my mind's eye, though it's ironic that you finally get to be a stay at home mom, even though there are no kids at home to mind now.
Thanks for checking in with an update!
Anyone else with personal updates to share?
sleepily, Stephanie
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Some pluck...we're not all 90, but this woman sure chose to do it her way!
Dying woman picks road trip over chemotherapy
3 October 2016
Best, Stephanie0 -
I love the woman who went traveling instead of getting treatment. I'd make the same decision at her age.
I'm hanging in there. Major scanxiety recently which amounted to two very small lesions on my brain and liver. Nothing big enough to biopsy, just something to watch. I've no doubt it's cancer but there's nothing really to be done at this point. I feel quite miserable most of the time but still find so much joy in the world.
Lots of pain and exhaustion. My whole body cramps up when I cough, which happens too many times a day. I got thru my DD's 11th birthday. Her party is this weekend and then we'll have some casually serious chats about hospice and what she thinks.
Think of you ladies often and keeping you in my prayers. Sorry I read more than I post, but I am cheering you all on.
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Becs, I'm late in seeing this, but I understand how you feel. Two of my grandparents died when I was young. My remaining grandfather passed away two years before my initial diagnosis. He had watched my grandmother go through brutal breast cancer treatment back in the 80s (although she ultimately survived it and later died of something else) and after my diagnosis, one thing I have thought was "I'm glad Grandpa doesn't have to see me go through this...it would rip his heart out."
Four days before my mets diagnosis, my grandmother on my other side passed away at 93. She had severe dementia in her last years and my mom and I were able to keep our twin diagnosises from her the whole time. Why distress her if she's going to forget the information in 30 seconds? Although I had to come up with some interesting explanations for the changing hairstyles. Anyway, I'm glad she passed before I couldn't hide it from her anymore. I'm her only grandchild, she would've been devestated...especially if she had ever found out about my mom and I at the same time.
Anyway, this is longer than I expected, but I completely get you and what you are feeling is not selfish at all. Hugs to you
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Interesting excerpt from an interview with my friend Francis Weller, an author, therapist and convener of grief rituals. Highlighting is mine. Link to his book at bottom of this post.
Healing blessings, friends, Stephanie
Weller: People frequently tell me they were not allowed to go to a relative's funeral as a child, and they are still angry over it; they wanted to say goodbye. I've worked with cancer patients who are also young parents, and most try to keep a brave face in front of the children. I'll often ask if they think it might confuse their son or daughter to see Mom smiling but know she isn't OK. The child may start to doubt his or her own experience. I'm not saying the parent should weigh the child down with difficult emotions, but children need to know that what they're sensing is real, that the sadness and concern they're feeling is appropriate.
Funerals are meant to honor our loss and put it back into a communal context, where it belongs. Without a funeral, the child may carry the grief privately, as something shameful that does not belong. Of course, many funerals today don't give mourners enough permission to weep and wail. We deny death so readily.
Francis Weller on Rituals of Renewal
Posted by Tim McKee – September 29, 2016
The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief
Author: Francis Weller
Foreword by: Michael Lerner
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THANK YOU, STEPHANIE!!!
"Funerals are meant to honor our loss and put it back into a communal context, where it belongs. Without a funeral, the child [or adult] may carry the grief privately, as something shameful that does not belong. Of course, many funerals today don't give mourners enough permission to weep and wail. We deny death so readily."
Can I be honest? I am SO SICK AND TIRED of going to these "celebration of life" memorial services, where everybody puts on a brave face, and smiles, and says, "Well, so-and-so is in a better place now..." "At least so-and-so is not suffering..." "You have your memories to comfort you...", etc.
When young people die because they are killed by a drunk driver, should we be celebrating?
Should we be smiling and patting each other on the back when a 38 year old mother dies from "chemo resistant" cancer, leaving three young children behind?
If the deceased was a wage earner and didn't have adequate life insurance, the remaining family may have to sell the house and move. Maybe all the medical bills have put them into bankruptcy...yeah, let's all CELEBRATE!
Death and funerals are not all "happy, happy, joy, joy." People should be allowed to bawl like babies. Their beloved one is GONE! They're never coming back. Co-mourners should be able to put their arms around the family and comfort them AND cry with them.
My death WILL be a tragedy for my husband and daughter. My four brothers are already upset because, I, their only sister, will no longer be around to hold the family together. I'm the one who puts up all the holiday decorations, I'm the one who cooks the old Italian recipes and has big family dinners at my house. I'm the rock, the stable one, the one that didn't abuse her body with alcohol and drugs like they all did. They thought I'd live to be a hundred because I didn't smoke or drink diet soda or eat at fast food joints twice a week. HA HA HA...and now I'm the one [the healthy-living one] who has metastatic cancer. Let's throw a party!
We're all supposed to put on a brave, optimistic, strong face for our families and friends and be "grateful" for each day we have left. I try to do that most days, but I've gotta say that I feel like it's effing bullshirt because I've been gypped! All the books I could have written (already published two in the last 12 years - but with all the pain and fatigue, it's hard enough just to post on these threads nowadays), all the places I could have traveled, the new people I could have met. I've accepted that I will die before my time, but there are still days when I'm NOT at peace with it...I have residual bitterness, as I hobble around on my cane because of all the pain in my spine from compression fractures and lytic lesions eating away at the vertebrae.
And PLEASE don't tell me, "Stay positive. There are so many new treatments now...don't go by the 3-5 year stats on the internet...you could live years longer..." Maybe I will and maybe I won't. What if my cancer becomes "chemo/treatment resistant"? That DOES happen. It could be me, it could be you...no one has a crystal ball. I have friends and co-workers who didn't last the expected 3-5 years (and one wasn't even Stage IV). One died within a year of Dx, one within 4 months, and another in LESS than a month. Yep, gotta celebrate that.
I'm not trying to BUM everyone out - this our SAFE PLACE to protest and rant about the crappy hand we've been dealt. And we have to face the truth whether we like it or not: Some of us won't live 20 years as Stage IV patients. Hopefully, many of us will indeed go past 5 years, but some of us won't even get that far. And PLEASE don't say, "Well, you weren't optimistic enough, you didn't fight hard enough, it was your pessimistic outlook..." Don't blame the victim...Cancer's gonna do what cancer's gonna do! Even the best oncologists aren't miracle workers. They can't just wave a magic wand and POOF! you're instantly NED with ten years ahead of you.
That's my rant for now. I'm consoling myself with the thought of donating my body to science so they can hack whatever's left of me open and medical students can learn something from my cancer. My death won't be a total loss. And my family will at least be able to comfort themselves with that.
Still struggling,
Lita
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Lita,
I understand your struggle. Maybe this is a crazy, and not very comforting, way to reply, but I hope you and each of us gets to plan the type of funeral we want. If some choose a celebration of their life then that's just what they should have. Others may prefer more traditional or somber funerals. I'm going with the celebration because although I know that my passing will be a loss to my family,I want them to remember the good times and how optimistically and happily I lived. I also want good music and food. Of course, I can't tell others how to mourn and I expect there will be tears and sorrow, but I want the funeral to reflect who I was and how I lived. But, everyone should have a chance to to have their wishes honored
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Caryn: Yes, I agree that we should all have a bit of a say in our memorials. I've already picked out the music I want at mine and made sure my daughter and husband can easily find the CDs. They can pretty much use their own judgment putting together the photo collage for my "death reel," (that's what we call those "IN MEMORIAM" film/still photo segments on every Oscar and Emmy telecast). It's too soon to decide who I want to speak, but I told my family I want there to be time for people to get up and share.
Since I'm only six months out from Dx, I still obviously have a bit more resentment to work thru. The hardest thing is that I could not have done anything different to prevent this. I went for a mammo every year, I ate right-mostly organic, I didn't smoke, etc. I want somebody or something to blame, but there isn't anything out there. Yeah, maybe I could have drank a glass or two LESS of chardonnay on the weekends, but for me back then, a life without chardonnay was not a life worth living when one works in such a stressful field as construction. Look at all those women on the TV "Intervention" shows who drank gallons more than I ever did, and they never got cancer. Well, that's all moot now...I don't drink wine anymore because I don't want to tax my liver (and stimulate its mets) anymore than I have to. It has enough to deal with given the pill-form chemo.
For the most part, people see me as pretty upbeat and optimistic about Stage IV, and they can't believe how strong and patient I've been. I try not to be too pissed/negative out in public b/c it's not going to help the situation. What I think and say in the safe environment of these boards is another story, and I'm so GRATEFUL for the opportunity to share it with other Stage IV women who've already been thru the trauma and emotions I now face.
Enjoy the weekend,
Lita
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Lita- you are right there was/is nothing that we did to deserve getting cancer. Cancer hits babies, toddlers, teens, up to old folks and everything in between. The rich get cancer and the poor. It rains on everyone. Not much cause to celebrate that I suppose. At least one need not feel "picked on." Winning the cancer lottery just sucks.
What ever choice in our lives that gives us or our loved ones comfort is justified... well as long as it's legal, not unethical and harmful. No human sacrifices etc.. But whether we need a casket or cremation, memorial or none should be a personal choice. We can die our own way, but die we must, perhaps the only choice is how we "celebrate" our precious lives. Choices help make us feel like we have control when we really have precious little control. So be at peace with what ever feels "right" to your gut. If it's a jazz band and a BBQ or an old fashioned funeral and memorial service. Enjoy what you decide on and you don't need to justify to anyone why it felt right to do it that way.
What feels right for me is none. Ashes tucked under the moss at the base of a giant Doug Fir and the knowledge that my essence continues. My cancer filled body is finished and my essence is free. Sweet. My love lives on in my family. Love is our greatest treasure our lasting legacy. Peace to all.
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