A place to talk death and dying issues
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Oh, then my sisters and I went off on another subject, and I was saying something about how my son always loved making a packing list when he was going somewhere overnight. One sister said to me, "He got that from you, you make lists all the time." The other sister started chuckling and said, "that was another thing on that obituary, it said the guy loved making lists." We were all chuckling then, and one of them said, "We're gonna put on your obituary, too, that you loved making lists." And honestly, it was so completely funny that we were all laughing. It's the very first time since the stage iv dx that they ever found humor in this topic with me, so it was very welcome and I wasn't at all insulted or hurt.
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MrsDivine, what a wonderful time with your sisters! You are right about the obit ... just a tad over the top, I agree! And it IS nice to share a laugh - and our own mortality can be as humorous as the rest of our lives if we just loosen up and look at it through the funny wacky lenses rather than the serious sad wringing of the hands lenses. BTW, I especially appreciate your tag line: Enjoy life MORE because of the uncertainty not LESS.
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mrsdivine--so glad you got to talk and laugh with your sisters! I don't have sisters but my mom and I are close and I can see us doing that same thing. I do feel ...? I'm not sure what the word is. I very much want to talk about death and dying issues with my husband (mostly), but he doesn't want to hear it. He'll say something like "why are you thinking like that? You just had a good report." It's frustrating and also makes me sad. I also want to hear his wishes, his thoughts...I sometimes feel like all we talk about is my health and our world revolves around me and I hate it! I would also like to talk to my parents but they are pretty fragil right now. My poor mother is taking care of her mom, her dad, my dad, and me! I don't know how she hasn't ended up being committed! (her mother and father got divorced seven years ago after 60 years of marriage!!! They hate each other and don't really care if the other one is alive or not...and her dad is mean! She has a lot of stress) I guess I will work on my bag as Bon suggested. I feel like I need to first clean out closets and throw things away. I really want to simplify my life and enjoy.
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Thanks for your comments, ladies. My sisters, who are the strongest women I know and who power through every imaginable thing, completely fell apart when I received the stage iv dx three years ago. I thought they'd be strong for me, but they were emotional blubbery messes. Sometimes I think, with great affection, 'you wimps!' To reach a point where we can be a bit light hearted in talking about obituaries is a switch.
KJones, sometimes timing is everything when it comes to bringing up the subject of death and dying to a spouse. Last summer, DH and I discussed a few things like agreeing to be cremated and have our ashes buried in the cemetery. We selected a plot. It sounds easy, but at the time it was so difficult. I found it better to keep the conversations about this topic short and casual and it helped if we talked about it when we were driving somewhere in the car. I would sandwich the subject between other casual matters like it was no big deal, but it was very deliberate on my part. It may be that your husband doesn't want to hurt your feelings. Also, some people just figure they'll take care of things when then come up rather than ahead of time.
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Bump
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I am starting to think that I will not be gone for a long time cause I still have a lot left to do. I wold like to figure out the whole thing about where to be buried, but DH won't discuss it. I do hope that he wants to be next to me with a modest stone over us. Tried talking about which cemetery and of course he wants a different one than I do. Oh well.
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NYC, try skimming from the beginning of this thread many have discussed similar thoughts. They may help. Dh and I cancer at the same time. He didn't make it. I have his ashes by my bed. Since I now live in a city where no family is, I said to DS he will be the keeper of all ashes. I'd rather all end up in one place. Since his status isn't absolutely permanent. This could go on for along time. Even generations if he feels the same about his kids. Good Luck
sassy0 -
BUMP
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Mzmerz - I love the idea of a being a hologram at the funeral! I'd love to see the video eulogy you show at the funeral. You've got me imagining you standing at a podium in front of your audience saying "I'm sure you're all wondering why I gathered you here...."
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Hi, popping in. I was posting with another member. I thought sharing the below information may be helpful to you
.The link www.needymeds.org is to a web site started by a Social Worker and a doc. It is a tricky site to use. The first page leads to a several hundred resource pages. But I think this first page, does not project the wealth that lies beneath. Be patient when following the links within the site. There are sections that are disease and drug specific. The specific page then links to lists of organizations that provide monetary or other types of assistance.
Register first and do the request for assistances form. Reason: the request for assistance form is filed. If you apply to 1 or 20 organizations/companies, the forms don't need to be repeatedly filled out. The system is designed to pull information from the original form. There may be a few particulars that need to be added to a companies/organizations form.
All the pharmaceutical companies have patient assistance programs. All the drug manufactures are listed there
The other way to reach drug manufactures is 1. call the manufactuer patient assistance number(goolge keywords: drug name and manufacturer, then to webpage>>>patient assistance. Very time consuming.
There is so much more on www.needymeds.org. It took a bit of time to wander through the whole site. I've shared a telephone walk through with many friends and relatives. I even called healthcare facilities to tell them about this link.
For completeness, there are many ways to get financial assistance for whatever you need. There are organizations that will do things for you i.e volunteers that buy groceries, drive, install handrails, build wheelchair ramps.
How to find the info besides from the link above? FIND the SOCIAL WORKER(SW). It's there job to know these things
Talk to all of the following 1. cancer center SW, 2.hospital SW, 3. Insurance companies SW, 4. County SW. 5. church outreach leader.I requested from my insurance carrier, a consult with a SW. That one appointment with the insurance carrier Social Worker, led to grants totaling $10,550. The meeting with the cancer centers SW, led to coverage of neulasta for $4000.00.
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OMG, Surfdream Rotflol. it will likely become a trend over time. The digital picture frames are becoming common. Even 5 years the poster board was the usual. The hologram is viable in a techy world
sassy0 -
This thread is starting to slow down. It is a beautiful thread with much to offer. Threads wax and wane. If you are new here , please, read from the beginning. Members have offered so many helpful suggestions. Bon has put together a synopsis on pgs 25 & 26.This is in the Stage IV forum, but the information is universal.
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One of my most favorite poems Is "Otherwise" by Jane Kenyon (from Otherwise, 1996 Graywolf Press, St. Paul, Minn.)
I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.I discovered this poem in 1996, the year after Jane Kenyon died, the year after I was diagnosed with breast cancer the first time. All these years later, it continues to be poignant and meaningful, reminding me to have gratitude for the many aspects of my life that I might be tempted to take for granted. Today I read "Wild Darkness" by Eva Saulitis, which you can find at http://www.orionmagazine.org/index.php/articles/article/8046. Her essay, written from her perspective as a woman with metastatic breast cancer, includes a quote from "Otherwise" and shares many thoughts and feelings that resonated deeply with me. For example, she writes, "...I know that as long as we inhabit bodies of flesh, blood, and bone, we are wholly inside nature. But under medical duress, we forget this." Writing about her involvement in medical care she notes, "The whole ordeal was a necessary palliation, a stint of suffering to grant me long-term physical freedom. And yet it smacked of the way people too often spend their last days alive, and it really scared me."
She also writes, "Facing death in a death-phobic culture is lonely. But in wild places like Prince William Sound or the woods and sloughs behind my house, it is different. The salmon dying in their stream tell me I am not alone." She goes on to say, "These things tell me death is true, right, graceful; not tragic, not failure, not defeat." She concludes with "In the end—I must believe it—just like a salmon, I will know how to die, and though I die, though I lose my life, nature wins. Nature endures. It is strange, and it is hard, but it’s comfort, and I’ll take it."
I'm still sorting through my reactions--thoughts (I don't want to die in the midst of intensive medical care....My life is meaningful even though it is in many ways insignificant to and within nature), feelings (gratitude, grief, respect, comfort), memories (my scared self in 1995, my experiences related to learning how to live a more authentic life), hopes (that quality of life will always be more important to me than quantity, that my loved ones won't be traumatized by loving me and by losing me)--to the essay, and I wanted to share it with you all, in the event that you might find it interesting or thought-provoking or moving as well. Perhaps someone else might want to share her reactions, too?
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Brenda,
That is a lovely poem and a wonderful post and I will come back to read the essay when I have more time to devote to it. I'm intrigued by the idea of "knowing how to die."
Living with gratitude is what gives me peace
I'm glad to see this thread active again too.
Lisa
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Brendatrue---thank you that was beautiful L&H&P's (love & hugs &prayer's) sassy0 -
Brenda,
I am instantly touched by the poem. It's simplicity belies it's pointed message of the reality of "otherwise." At the same time, because of the gracefulness and beauty of now, otherwise does not seem (in this poem) to be dark and frightening.
I sometimes think from the time we hear the words "Stage IV" we begin fighting for survival. Every new ache or pain and every blurry change on a scan is 'cause for another discussion of what to do to eek out mor days, weeks, or months. As much as we all try to "not let cancer run our lives" at some level it does. It is very easy to be so wrapped up in the fight to stay alive that we forget about living or, if we don't forget about living, we become so afraid of the enemy (dying) that we do forget that it is part of living. Dying is the natural end to life and while we don't want it to happen too soon, it will have its time.
I must admit, I haven't thought of dying as having the potential to be peaceful, graceful and full of love for a very long time!
Lisa, I love your phrase "living with gratitude." I think that is what I do, but I have never had a name for it. Your phrase has inherent in it the reality that life is a gift not a "right" which is ours forever.
I look forward to reading "Wild Darkness" so that I can continue this discussion! Thank you for starting a new conversation!
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I was thinking about where I want to be buried. Dh wants to be cremated and his ashes scattered over a mountain, Carrantouhill, which is near my birth place. This is probably weird but I was kind of hurt that he didn't want to be buried with me. I don't want to be buried alone up here so I thought that I would like to have my ashes buried in my parents grave. My old home was very much part of my ds childhoods so I think they will always have happy associations with the place. I'm afraid to raise the issue with my only sibling in case she refuses (there would be room for her too if she wanted to join us ha ha..). I have told dh my wishes. Of course they could scatter me on Carrantouhill as well... but for some reason I want to have my name and dates as a memorial somewhere and a place ds can visit if they want to. Dh's aunt scattered her dh's ashes in his beloved garden but now she's in her eighties and doesn't want to move to a smaller hse because of leaving him. Just musings really before I go to bed...
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Aoi, I also like the idea of a 'permanent resting place' where my son and other loved ones could visit. Dh and I agreed to both be cremated and have our ashes buried in a local cemetery, they can be buried in the same plot. I prefer that to having my ashes scattered.
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In my family, NOONE has ever been cremated. Read Southern and conservative.. Too bad that is what I want...There has never been any question to me. I want to have my ashes scattered near my favorite Florida beach...In no way do I want anyone having to come to a place and put flowers on a grave. I respect everyone's different opinion. This idea is mine alone. Carolyn
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Aoibheanne, reading your post just gave me an "ahh-ha"- I also don't want my ashes scattered and I realize the reson my dad is still in my linen closet is because I don't want to scatter his either. He also wanted to be scattered in his beloved garden but in the end he needed a lot of care and so we had to rent his house for the income. After his death it sold very quickly and I also didn't like the idea of strangers tramping all over him (or worse if there was a dog) and I want to be able to go to where he was.
Vadre, I'm so glad you like the phrase. I haven't read Wild Darkness yet and Im also looking foreard to having this thread continue.
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I have donated my body to research and have asked for a simple memorial service and mass. Do you think I should tell my children about this?
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bhd, how receptive do you think they'd be to your wishes? I don't know how many children you have, but there might be at least one you could confide in, and maybe ask that child for advice on how you should approach the subject with the others. I would just think that it would be better to know in advance rather than learn what you want later. Yes, I'm sure it will not be an easy subject to tackle, but it may help them to talk about it now.
Dh, ds and I were taking a ride yesterday, beautiful weather here in Ohio this Memorial Day weekend, and went past the cemetery where dh and I will have our ashes buried. It's not a big cemetery, just slightly out of town on a country road with neighborhood houses nearby, located on a low slope of land with a church next to it. The grass was freshly mowed, flags and flowers decorated many of the graves and it was just so well taken care of, which of course I was happy to see.
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I don't normally look at this thread. I am only a couple of months out from my stage IV diagnosis and don't feel I am ready to think to much about the end while I am still feeling positive about the present But I was feeling brave today so thought I would take a look. I am going to have to think about it one day.
I started by reading the most recent post which was about body donation.
I have some experience of this with my mother.
Barb - You must tell your children. If it is your wish to donate your body, it can be a shock for your family to discover this after you have gone and without the opportunity to discuss this with you. Also, it may be too late to donate your body if your wishes are made known in your will, generally read some days after your death. You will need to have completed necessary paperwork beforehand to avoid this situation. Someone should know in advance that this is your wish so your request can be acted on.
Your family may need to action a Plan B, if the medical school does not require your remains. Sometimes medical schools have all they need or cannot accept a donation for other reasons. This means that your family will still have to organise a funeral or memorial service.
Finally, you need to know that your body or cremated remains are returned to your family after 18 months. This means that your loved ones will still have to deal with the disposal of your body at a later date. I personally found this the hardest thing to deal with when my mother made her wishes known. It meant the period of mourning was long and drawn out. I felt unable to move on until everything had been completed many months later.
On a more personal level, I did human dissection about 30 years ago. I am not a doctor but studied human anatomy (together with biochemistry and physiology) and in consequence did the same lectures and laboratory work as the medical students. I am afraid to say the cadavers we worked on were not always treated with the respect they deserved. I would like to think that the passage of time has changed the students approach but my instinct is that their attitudes have not changed. All part of the black humour found amongst medics which is why I doubt things have improved. This is something that would not effect me but I wouldn't want my family thinking about it after I am gone.
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Springwatch, What valuable information! I had already agreed about telling children ahead of time. (The fewer surprises the better after a loved one dies.) Your advice is invaluable! It is so much better to make decisions based on fact rather than based on what we hope will be the situation. Thank you for sharing of your knowledge. I, too, avoided this page for some time after my diagnosis. I just have to say that this group of ladies has provided some wonderful advice & support. Know that you are always welcome!
I have just realized that, as upfront & open as I pride myself on being, I haven't decided what to do about these things. My husband and I have always avoided this decision for some reason- even before my diagnosis when talking estate planning and such. I know how difficult it was when my mother died to have no clue what she wanted... I guess it's time to have the conversation!
It's a beautiful day here in Virginia. Spring weather which I adore! I hope you all are sharing this beautiful reminder of life. I Di wish we could sit together and chat in the sunshine some time!
Virginia
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I have not read this thread in quite some time, thank you to whoever bumped. I have some thoughts on my funeral and need to get them written down. When my uncle passed several years ago, he had given me a manila folder with notes, readings, music etc. It made things so simple, so few in the way of decisions and what he would have wanted. He was also VERY! careful with his money and my parents (he was my dad's brother, just the two of them and my uncle never married) were having a huge fight about what to do after the funeral for folks My father didn't want to spend a lot of money - his brother wouldn't have wanted it he thought. My mother was adamant that there be lunch, open bar etc. People were coming a distance. Note in the file I was given - have a nice lunch for everyone after the funeral. Immeadiately ended the discussion and a good time was had by all.I just want my obit to read She lived, she died, she had a pretty good run. No long courageous battles with cancer etc..UGH. Have to start my manila folder. I have a thing for funky socks - always give them as gifts to men and women. There will be a basketful of socks for people to choose from - when people wear them, remember me. !
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Nel, I LOVE the socks idea! What a great way to be remembered!
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Nel, thanks for some great ideas! I think the manila folder is perfect. Also, thanks to others with the thoughts about scattering vs. burying of ashes.
If you don't want to know much detail about donating a body, don't read the rest of this paragraph, as I am going to describe my experiences. I was the medical director of our non-transplant anatomical bank (technical terms for director of the cadaver lab) several years ago, and I can tell you that the students in MY program, and those in MANY programs (I have met with and talked with many other lab directors) now receive a lot of ethical training regarding respect for the deceased, and those deceased who are now going to be their teachers before they are ever admitted to the lab. We emphasized the fact that these people who have donated their bodies are some of the best teachers they will ever have, and should be treated with the respect that any living teacher should receive, and in addition, even more because they have provided opportunities for them that are not available to others. I can tell you that there were rules regarding how students and faculty talked about these instructors. I am pretty sure there were a few inappropriate jokes made through nervousness, but as time went on, students became more accustomed to the situation. At the end of the year, there was a dedication ceremony that our students attended. We took strict care to not dispose of ANY PART of a body, but kept all parts WITH the body to be included at that final cremation and/or ceremony. So I cannot guarantee that a body will be treated with respect, but I can assure you that there are a group of us who have been very dedicated and active in making sure they are, through education of our students and modeling of that behavior through our own actions and language. I do remember that my first introduction to dissection was quite similar, with our lab director using very similar language regarding our "instructors" and respect. And I remember the woman who taught me more than I could imagine during that year I spent in the lab, daily, working with her, as my colleagues and I learned from this most patient instructor I ever had, and I remain grateful to her 35 years later.
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My, my, my, what an interesting conversation we are having. First I have to say to Nel, I share your passion for funky socks. I wonder if my family remembers the Christmas when I gave each and every person there a pair of expensive socks. I have to tell you: the outcome was similar to that scene in A Christmas Story when the kids get presents they're not interesting in receiving and just toss the gifts over their shoulders! What weird looks I received!
Also, I have to echo Linda's thoughts and report about the advances in care for anatomical/cadaver donations. A few years ago I worked with a couple who decided to donate their bodies for medical research. After the husband died, his wife shared with me how much it meant to her that her husband's long experience with brain and other physical illnesses might benefit someone learning how to care for future patients or about research into particular illnesses. She shared with me a very lovely letter she had received from the representative of the program and described how she had been advised how students were given special training in how to be present with cadavers in a respectful way and opportunities to share their own discomfort about disease, dying and death. If I remember correctly, she also expected to be invited to a memorial service in which family members were thanked for following through on the donation of their loved ones' cadavers. This is not the only positive story that I have heard.
I also would like to share with you my experience with regard to wanting my body to be donated to the "Body Farm," another name for the University of Tennessee Forensic Anthropology Center. (That facility does research on decomposition of cadavers out in nature, sometimes buried in shallow graves or wrapped in plastic, and their research has greatly advanced forensic science. One of their current research projects involves learning about mass graves and how to help human rights investigators all over the world in their efforts to find and document mass graves. For an interesting story on the Body Farm, check out http://mentalfloss.com/article/56640/welcome-body-farm .) Anyway, my dear husband was absolutely horrified at the prospect that my body would rot in nature (my idea of a good after-death), and he implored me not to pursue this idea. I don't know if I will be able to sway his opinion, and I know ultimately I will choose to honor his wishes in this matter. Right now he is comfortable with my wish to be cremated and to have my cremains scattered with his when he dies. (Although I have to mention, I've told him that if he remarries he can choose to skip having my cremains scattered with his if that would strain his relationship. He is adamant that he would not remarry, but I wanted to mention that for his peace of mind in the event that ever happens!)
In thinking about after-death planning, I wonder how best to strike a good balance between respecting my own values and wishes and respecting my beloved husband's wishes and his future bereavement needs. What a challenge!
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I have donated my body and thought it best to tell my family. I wanted them to know this was my wish and my husband wasn't being cheap .... LOL! I wrote letters to my kids with a copy of my donation acceptance card. I let them know I would like a service at my church and a party afterwards but there is no need for a "body" to be there! I feel very comfortable with my decision. They will cremate my body when they are finished and send the ashes to my husband.
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dh knows my wishes and the paper work is done. Thx
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