A place to talk death and dying issues
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Thanks, Julie. I have some D Mannose sitting here. I've probably had it for years. I don't know if I ever took any but the safety thing on the lid is broken so I must have. I may take some soon. I was thinking of waiting until this latest UTI is over first. But the next one usually starts before I have a chance to decide anything. I'm a slow decider.
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I wish NH would get their act together, and pass this law. I don't know if I would ever use it, but if I'm in a lot of pain, that can't be taking care of with anything but opiates that will knock you out, I'd like that option. It sad that terminally ill people can not choose what they want in the end.
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Anarticle in today's SF Chronicle said that 374 terminally ill people took drugs to end their lives in 2017 in California. 577 received drugs, 86 died before taking them, they were unsure what happened to 128. Most were insured, college educated, on hospice and had cancer. Average age 74. ( there had been arguments that decisions would be uninformed, hasty and in people who were misdiagnosed)
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So...I have just received a message from Bluebird's (Diane) niece Shannon nd maybe others here have too. She has given me her email and also Diane's DH contact info. Please PM me and I will forward to you. She said Diane passed away peacefully on May 22nd surrounded by family and friends just as she wanted. So sad for my friend Diane. I did receive the news at the time while on a trip. I think her niece would really appreciate all of our responses. Thanks.
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Just updated my "Death Binder" again.
I had to change a couple of things in my Obituary and also include some family members that I somehow FORGOT to put in the first time. Aahhh, brain mets! Updated the financial stuff, too, b'cuz I've closed out some accts and don't want my DH to have a confusing mess to deal with.
I have no suggestions as to how often one should update/review one's binder/folder. [The important thing is to just get it done.] Update when and if you see fit as things change. I haven't gone over my "stuff" for over EIGHT months, and I've been lucky that things haven't really escalated health-wise.
I think I'm going to put myself on a three-month schedule and consider reviews when my most recent scans come in (my MO orders a PET scan every three months).
Have a great 4th of July week, everyone.
L
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I had forgotten some of that stuff as I had done it so long ago. It feels that it is time to revisit it. I also think I have to get better organized. House is a "mess" as I have been lacking in energy. This weekend will be set aside for figuring out how to leave this world and getting things in order.
One of the "gifts" of cancer is we have time to think and ponder about what we want and how to do it. My friend was killed in a hit and run accident. There were no I love you's or goodbye or this belonged to my grand mother. Or being able to spend one last outing with a Friend.
How do you prioritize what to do first?
Wishing everyone a peaceful weekend.
Therese
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I'm like you, Therese. I've been trying to take this time to be sure keepsakes get to the right people. I'm now focusing on doing some cleaning and disposal so others won't need to. Just cleaning out closets really ( slowly). My DH is my second husband and doesn't always value family “ treasures" so I'm trying be sure things go to my kids that he might throw out- not realizing they mean something to someone else.
Yes, we do get this odd “ gift" of time.
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Question: How have you all handled those who are trying to avoid the reality of our eventual deaths?
DH and I chose not to have children, so it’s just us. He is self employed and drive rock bands on cross country tours. Meanwhile, I work, take of the house, dog and handle the finances. Recently, I asked him to pay a medical bill from his recent surgery, he agreed but didn’t do it, after several weeks I asked again and was told he was too overwhelmed and that bills are “my thing”. It pissed me off because he was being lazy but he’s got to learn this stuff. Also, a few days later he was telling a friend about all the memorabilia I’ll have when he dies. Clearly I’ll likely go first. He’s not stupid but he seems to be burying his head in the sand.
Thoughts?
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My whole family does this. My mother keeps on investing time into showing me family heirlooms and explaining their significance to me, even though it's painful for me to watch her do this and I have gently asked her time and time again to pass all such information along to my daughter instead. I have one daughter who avoids spending time with me at all, like she either thinks she's got all the time in the world with me or else has already factored me out of her life as a self-protection tactic or something. I don't know but I can't change her. My DH lives in denial a lot of the time and doesn't pay enough attention when I try to tell him things he needs to know when I am gone. I can't even get him to deal with buying cemetery plots. It is what it is. They will all have to adjust when the time comes and then it won't be our problem. All we can do is try to love love love them through it. It's awful for them.
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Good advice, Lulubee.
Sadly, we live in a culture that doesn't really want to face death at all. Despite all the books on death and dying, and the "Death Cafes" people are currently attending around the country, we haven't really come that far.
I'm trying my best to "train" my crew, but it's hit and miss. That's the reality of humanity. Most of them DO NOT WANT to consider our eventual demise...which is going to happen way sooner than they think it will.
I've taken the bull by the horns. I bought my niche at the mausoleum last year, also purchased a beautiful urn with a rose on it, and pre-wrote my memorial program notes and my obit. When it comes to these things, DH and DD are absolutely CLUELESS! So I had to do it myself to make sure everything that I wanted was included. I've left them instructions in my "death binder" as far as contacting Social Security after I'm gone and turning all my Notary Public stuff in (if I pass b4 my current commission expires). I've gone thru most of my clothes and sent the ones I no longer use to Goodwill/St. Vincent de Paul, and also purged my book collection. I won't need them where I'm going, and my family won't read the novels/books I like anyway after i'm gone.
I'm writing down recipes and putting them in a box for my DD. That's really hard 4 me because I'm Italian, and we DO NOT write recipes down...we just go by memory and taste. I still haven't written the family lasagna recipe down because my DD helps me make it every Thanksgiving, and if she doesn't have it down now, she never will
). If I'm still alive this Thanksgiving - brain mets are really acting up again :>( , I'll have HER write it down. It takes ALL DAY to make (turkeys are way easier, and less time-consuming), and that's why we only do it once a year. I always make two, and freeze one for Superbowl Sunday. We know our weeks and days are numbered. Let's enjoy the time we have left.
Just made a batch of chocolate chip/almond chunk cannabis cookies...that's how I'm enjoying my time ;o).
L
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Lita57, sorry your brain mets are causing more trouble.
I just started my death binder this week. I got as far as labeling the tabs on the dividers and writing up my funeral wishes. Good reminder to write my obit, too. I'll get to the info in the other sections soon enough, I hope. Our wills and advanced directives are in progress at the lawyer's office. I've started decluttering and I'm making progress. My books are going to be hard but I need to do it since I have a few that are autographed by the author.
Yet, my husband is partly in denial. He knows but...not sure where the disconnect is. He says I'm not going anywhere but we know that likely I will die years and years before he will. He just retired and is more fit than a fiddle, runs in 5k and 10k races, and usually finishes in the top three. He does rely on me for a lot of how-to around the house now that has to do most of the work. How does the cliche go...we thought we'd have a lot more time to get into a retirement groove since we are relatively young. Ah well.
I love the idea of lasagna for Thanksgiving! If I'm able I may adopt that custom.
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I'm going to look in getting a death doula (also called palliative care midwife or death midwife) to help us talk through my end of life. I think having a third party help lead the really tough conversations with my kids, help me write up my death binder and support my husband would take a load off of me. Like a birth doula, they would help us navigate end of life and are there at the end to help the family.
illimae, my husband is like yours. I think the death doula would be able to help him figure things out, it’s not me telling him. When I say something, he shuts down.
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We tried, tried, tried to get my parents to make some final arrangements: funeral wishes, burial plots, etc. We also tried to get another name (one or more of us children) on their documents, since they were the only POA and Medical Proxy for each other. "But we've always been there for each other for more than 60 years" they would tell us. I tried to tell Mom that one of them will die first, and the other will be left alone to make these decisions.
Well, Mom died this February. She was able to tell us that she wanted a funeral Mass and she wanted to be buried near her parents. The rest was up to us children. Dad was too emotionally overwhelmed to do much. Sister helped Dad write the obituary; brother made arrangements with the funeral home, picked out casket, bought a burial plot and a headstone, with a final approval from Dad; and I chose the Mass readings and music selections and played flute for Mom's funeral.
How much planning has Dad done for his funeral? Just "do the same for me."
Dad has always been the cook in our family. Dad did say he might start writing down his favorite recipes....so maybe there's hope!
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Lita, I've been following along with your preparations for a while now, and you have been a helpful example for me. Now I just need to get busy and get a binder going. I do have a pretty substantial document started here on my laptop but nobody will ever find it if I don't put it in a physical binder. I have so much to do and so little energy, especially for these downer projects! I would far rather be reading a good book or playing with my grand babies or baking a cake. And dannngggg girl, speaking of having some fun, I would just about fly to California and buy us a case of good Italian wine to share with you just to have a little bite of your lasagna!! I do love me some good lasagna, and it's hard to come by. Too many people nowadays think Stouffer's lasagna is good. Yuck, right?
Pots, a death doula is an intriguing idea. Hmm.
Mom, that's just amazing that you played the flute at your mother's funeral. What a wonder woman you are.
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Hi All,
Is there a good one-stop resource for putting together a death binder? Lita, you are such an inspiration! All of the utilities (I did add him to the accounts) are in my name and credit cards etc. , so I know my hubby will need account numbers etc. Notify SS. We are poor as hell, no savings left, and deeply in debt, but trying to refinance our house since the property values have gone through the roof. If that goes through successfully, I think I will pre-pay for my cremation. Last year I bought a large beat-up vintage tea tin for my cremains and the rest will be buried discretely under Oakley, a young Oak tree that grew out of our pet cemetery in the back yard.
I'm trying to start getting organized since I developed liver mets this spring after two years of stability and being able to ignore my cancer. My liver mets are tricky - heterogeneous and some have neuroendocrine features. I'm doing fine so far, but still looking for a magic bullet full of "slow this shit down!!!"
Like many of yours, my hubby is in denial. He says he *understands* the prognosis, but his line is always "they are coming up with new treatments every day." He can't really face it, and I get that. I'm not at all morbid, I'm just pragmatic and look at everything through my reality glasses tinted with black humor-tinted lens. I see people all the time who are doing fine one week, then suddenly go downhill. I have to be realistic. He has always been the one with chronic poor health (plus issues with depression and anxiety that are being successfully managed with meds) and I was always robust and took care of everything, including being the breadwinner til I got laid off the same week as my diagnosis three years ago. I still take care of everything, because I'm able, but that won't always be so.
On the bright side, I turn 66 tomorrow! We are going with our family & my BFF to a local Turkish restaurant that serves an incredible breakfast brunch with several types of cheeses, olives, salami, fresh-baked flatbreads, little pots of jam, endless cups of hot tea, and many hot dishes, some that will always be a mystery to us, but are great! The, at night, Alamo Drafthouse (a cinema that serves food and drinks) is having a special showing of "Horsefeathers" with the Marx Brothers. There will be a short with the Three Stooges, too. Big bag of popcorn and drinks! I'm really looking forward to it! Onward through the fog!
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Kattysmith, A few years ago, a member named Bon created several lists to help those of us at BCO.org gather documents needed for a death binder or bag. She put a great deal of effort into compiling them. Her posts were later deleted at her request, but some of us had saved copies. A combinedlist is now found in the link below. Some of the items will not apply to you, but you still should find the list helpful.
https://community.breastcancer.org/forum/102/topics/859838?page=1#post_5081201
Hugs and prayers from, Lynne
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Thank you Lynne! I looked at the list and realized that I was missing a few items! I'm going to print it and check off items that are done and get the rest done! 2018 has been a real eye-opener for us in terms of the randomnessof life!
I am currently researching pod burials. It looks like a good option for me.
Claudia
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Lynne, what a phenomenal resource, thanks so much!!!
Katty
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Bon was a great resource and it was sad when she left the boards.
Wishing all the best for her, and everyone.
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Copied and pasted...I have most of the stuff together, but I have to put together a list of "family" co-morbidities so DD will know of them.
Already bought niche and urn and put DH's name on all accounts.
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I got my paperwork done right off. Now I am waiting...I think we all have good treatments left. When it is time to go i pray I can be gracious. That is all.
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Thanks to 50's Girl and Lita and everyone with info and suggestions. I've gotten a lot of these lists done, I think. I'm sure I'll think of something I forgot but I'm better prepared than a few months ago. We got wills, POA's, and advanced directives finalized at the attorney's office yesterday. I'm working on my binder. It's set up, tabs are labelled, and I'm filling in the sections a little at a time. Funeral wishes and hymns burned to a CD. Wrote my obit. Need to find a photo of myself for the visitation folder. I handed family jewelry and some of mine to my sister Saturday. In Jan. I was sure I was dying within the week. Just wanted time to 'get ready'. I've had it, and I'd better not waste it, all the while hoping for more time. Greedy me.
All this is harder than I thought it would be. I'm trying to be tough.
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Muddling through--this disease is a hard haul. I still wonder if I am "ready" after 10 years. Every time I change drugs, every time the TM went up, every time a scan. I would wonder if this was it, or would the side effects get me. I remember early on, I was on the couch or on the commode for 4 months. I went into my onc and told her I was done. I was ready to die. No more. I realized it was quality of life that was important. She said to me, well I have another drug that might work for you. QOL was better following for all my drugs. I decided and learned to accept that one day I would die. But, It was not up to me. They told me 10 years ago, I had 2-4 years to live. My liver mets from 3 years ago-6-12 months. I am still alive. I am here for a reason and so are you. It won't happen till it happens. Prepare for the worst. Get the important things done. Then celebrate each day making it the best day you can make it. I just got out of the hospital Monday with sepsis. Today I walked around my cup-de sac to start getting my energy back. I want to keep celebrating life. I know my time is getting shorter. Because of the sepsis, I now have heart problems, they confirmed my liver cirrhosis, they can't treat my cancer because my platelets are too low. But, I am going to continue until the Lord calls me home. Enjoy things, find things that make you smile, pause and enjoy that one moment. Celebrate Life! And keep on keeping on!
Therese
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Therese,
Thank you for your inspiring words. Congratulations to you and your medical team for surviving for 10 years at stage IV.
Many best wishes to you for all the days ahead until the Lord calls you home.
Madelyn
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Therese, your spirit is so beautiful. L'chaim!
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Therese, congratulations on 10 years of making life work with mbc. You are inspiring!
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Hello. Tho I don't consistently participate here, I still check into this thread on and off.
My feelings about taking care of end of life matters is this: it's great to get things wrapped up so we don't leave a big mess for our loved ones; however, I feel it's okay if we don't tackle every single matter. Yes, a will is definitely a good idea, and I had one years before mbc. Dh and I have a lawyer appt. to update it. He and I got the cemetery plot and headstone and I wrote an obit. None of this was done in a strict, regimented way. I brought up issues in casual conversations and steered us in the right direction and accomplished one thing at a time. I feel if I take care of at least some things, what's left will be less of a burden for my loved ones.
To get action out of family members in denial, I say things gently like, "This might not be comfortable discussing, but it's important to me and I need to take care of this for my own peace of mind." Using the word "need" is the key. I don't say "we have to get this done!" I need to put some things in place to get on with living life.
When it comes to prioritizing, making a list always works for me. Then pick three things from that list you feel are most important to you. Start with one of those. Dh and I visited a few local cemeteries and took casual strolls to see where we wanted to be buried. We realized one of the cemeteries was so well taken care of, something we never noticed before, and thats the one we picked. That was a start and from there we eventually got a plot and a couple years later, a headstone.
See if there are a few things on your priority list that might take just a little time. One of those things for me was an obit. I got the main idea written and made a few updates since then.
I just finished a book called "Confessions of a Funeral Director: How the business of death saved my life." By Caleb Wilde. The guy has a blog, too. It was very interesting and surprisingly inspirational.
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Something I want to mention. Dh is looking to retire in a few years so we met with our financial advisor. I asked him how can we protect our house from being taken by Medicaid if one or both of us end up in a nursing home. The FA said there is something called a Life Estate Deed. You can set it up so your house goes directly to who you want, most often a child or children, upon your passing. You continue to have possession of the house until then, but the deed prevents a nursing home from claiming the house for payment. We have an appointment with a lawyer to update our wills and are thinking we want to get this life estate deed, so we'll discuss with him how it works. I've witnessed far too many people let their houses get sold to pay for the nursing home costs and want to avoid that happening to us. I mention it here in case anyone is thinking along these lines and wants to check in to it.
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Therese, thanks for your wise words. Nowadays I really do my best to live and do what I can. At dx I was literally days from dying according to my onc, and I was so miserable I wanted to die. At the same time I was worried about not having everything done as far as wills and the other things discussed here. So, I'm getting it done.
I'm glad you're out of the hospital and building your strength back. Thanks for sharing your experiences about the ten years. Inspiring! I love your posts on the boards and I'll be watching for your updates.
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DivineMrsM
My parents put their home in "Life Estate" to me It worked just as you say. They did not include my husband (to whom I wass happily married at the time) . Their attorney recommend that they not - if he died before them there was some concern that his siblings could then come after me for a piece of the house when my parents passed Not sure how accurate this piece is, but something to consider
Be well
Nel
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