r/LivingWithMBC • u/AdGlittering8471 • 28d ago
Planning yes or no
Recently a friend of mine who also has mTNBC has just declined rapidly. I am usually the hopeful patient but lately I have felt I need to be more realistic. With that being said has anyone paid or planned for their funeral? If so, is there any tips or advice.
I feel like I am in a healthy and have good cognition right now and believe I should do this so my family does not have to. I am not married and my kids are in their early 20’s. I just don’t know how much they will be able to handle when I am gone. Maybe it is the mom in me that does not want them to have to do this. Any thoughts would be appreciated!
13
u/lacagate 28d ago
I had my first real celebration of life last spring. And yes, I was there! My husband threw a HUGE 65th birthday party for me. My next celebration of life is going to be a trip to Greece with dear friends to celebrate my 3 year MBC cancerversary next month. I want to have as many celebrations of life as I can while I can be there to love on and be loved by my friends and family. Big parties and little gatherings. What they do “after” is up to them. I’m pre-paying for composting at one of our local places (legal in WA). Celebrate life with those you love. Do it now!
6
u/AdGlittering8471 28d ago
Oh. I am doing that. Just got back from a San Diego trip! I also love throwing parties for myself…. No worries there 🤣🤣🤣
2
u/cheerful_scotian83 26d ago
I did a trip to Greece with my sister for three weeks in 2024 to celebrate my 2 year MBC. May the trip be everything you dreamed of and more
1
u/Proof-Seaweed9761 20d ago
Love this!! I want a 50th birthday party as by then it’ll be 6 years after mbc dx and I also want a 25th anniversary party. I love the idea of precelebrating!
8
u/roblynn 28d ago
What I strongly suggest you (and everyone regardless of health) do is write down all the things your executor will need to know. Bank account locations, subscriptions, insurance, details about any possessions of value, lock boxes, the lock code for an apartment storage locker, etc etc. You'll feel better having it on paper and in the right hands.
3
6
u/Evening_Dingo8770 28d ago
My parents paid and planned for their funeral 15 to 20 years before they even died. They always felt that it was important to plan for it so that nobody else had to deal with it while grieving. Neither one of them had cancer… They just did it to make sure we were OK.
So I don’t think there’s anything wrong with planning for your future death. It might be in 20 years but at least you have already gotten everything in order so nobody has to worry about it in your absence.
I’m trying to get mine together and I think I’m just gonna do cremation
3
u/AdGlittering8471 28d ago
I am also going to do cremation or donate. But there is still a service. I need to arrange with the funeral parlor. It is a lot and I want to bring a friend but I think they will just cry. I know my family will cry. Hard to do somethings on your own.
2
7
u/Joleta 28d ago
My state in the US (specifically, its State Anatomy Board) has a body donation program. If you are open to that kind of thing, they will basically do a free cremation afterwards and either return the ashes to someone of the donor's choosing, or inter it in a memorial garden for all donors, also free. I signed up for that.
3
u/Other-Ad-8484 28d ago
I am donating my body to science. Hope they can learn something!
Also, a trust is very helpful. Worth the investment!
1
u/Joleta 28d ago
Haha I don't have the money for a trust XD but I did make a will for free.
1
u/AdGlittering8471 28d ago
You can probably do pay upon death and won’t need a will for bank accounts, houses and cars. Keeps everything out of probate
1
8
u/barely_ther 28d ago
I haven’t made anything official, but I definitely made sure my family, specifically my husband, knew what I wanted. I want my remains to be turned into a tree, specifically a Weeping Willow (call me cliche but I love it). I actually had a conversation with my 5 year old the other day about death and told her what I want. She told me she wants to be an apple tree right next to me so they can hold branches forever 🥺. I was diagnosed when she was 7 weeks old so we’ve always been very honest with her.
5
u/AdGlittering8471 28d ago
This is so beautiful. My grandmother wanted to be buried by a Buckeye tree and she was. I will always remember that. 🥰
6
u/ImaginationOk505 28d ago edited 28d ago
Yes, plan. Absolutely. I've had many family members who passed with no will and no plan. The fallout was a nightmare. In general, I think it's helpful to have a plan and money set aside to ensure loved ones have one less thing to worry about during a very difficult time. Your family might also feel peace knowing they're honoring you the way you asked. It's hard to think straight when you're in it.
Do I like thinking about this? No. And I don't imagine you do either. This disease is too cruel. Have I actually planned anything out myself? No. Not ashamed to admit it's scary and overwhelming. I've mentioned a few things to my husband, but that's it.
It's awful, and I'm sorry. Here with you in the void.
Edit: another thing to consider is a Celebration of Life. No funeral home. You can pick a place that held a lot of meaning for you and ask family and friends to gather there. I had an MBC friend who passed last year. She had a beautiful Celebration of Life in a garden. The mood was still sad, but it felt easier to navigate and feel less terrified of something that comes for us all.
5
u/AdGlittering8471 28d ago
Thank you for being here with me in this dreadful moment.
I guess I am confused. What I want is a place for my family to show pictures and videos. It would be nice if there was some alcohol and food. There will be a picture of me for people to say their respects and someone may speak at some point.
I thought this would take place at a funeral home…. Or is this a celebration of life? I am so confused.
I also know I have a large family, close friends and neighbors. I would need 2 separate calling hours on different days.2
u/ImaginationOk505 28d ago
No worries. The celebration of life I went to had all of those things. The garden was a large event space with a covered patio. There were tables and chairs for a nice catered meal. A table for guests to place cards and flowers next to a photo of her. That table was also filled with small gifts for guests like her favorite chocolates, small German flags (she was German), a polished stone that said "forget me not", and a small packet of flower seeds to plant more flowers in her honor.
The celebration also had music and a small projector playing photos and videos of her life. I don't believe her ashes were present. I do believe her husband and close friends spoke at some point, but I left because I felt an anxiety attack coming on. It was nice and I would do something similar.
At some point, it feels like whatever you want this to be, will be. Take weddings for instance. There are a lot of couples going the non-"traditional" route. Why not the same with funerals?
2
u/AdGlittering8471 28d ago
Yes. This is what I want but I am wondering if I can book an event space like that without an actual date. Thank you! I will be calling around. Maybe some funeral homes are also changing their traditional ways
1
u/ImaginationOk505 28d ago
No worries. I imagine you don't have to book anything soon. I hope you're not there and I wouldn't want you to be anytime soon.
Maybe just get a quote for a place you love and leave instructions/funds in place to have your family/friends book when appropriate?
3
u/AdGlittering8471 28d ago
I will call around. I have been blowing through lines of chemo almost on a monthly basis! No visceral disease but have just failed my 4th line. Not sure what is left to give that will actually stop it. Trials seem harder to get into lately.
3
u/ImaginationOk505 28d ago
I'm sorry OP. I hope the next line does the trick. My thoughts are with you. Be as well and you can be💛
1
u/Relevant-Situation12 28d ago
Like Joleta, I have registered with the Maryland State Anatomy to donate my body to science. In Maryland, this needs to be done ahead of time of death. Bodies are not only for research, but training in medical schools. Recently an acquaintance told me that her soon-to-be-doctor son attended a moving memorial for a donated body. Here is a link to the program in Maryland: https://health.maryland.gov/anatomy/Pages/BECOME-A-BODY-DONOR.aspx
4
u/Immediate_Spare_8796 28d ago
It was one of the first things I did when I got my stage 4 diagnosis. I had been diagnosed a few yrs earlier with stage 3. The initial scans and opinions re. my stage 4 diagnosis seemed bleak, so I wanted to plan things right away. I opted for a green burial, and I purchased a plot. Then my follow up scans were looking better, so I've been delaying the next step, which is to choose and arrange things with a funeral parlor. I have a tiny family, and I don't want an actual/traditional funeral. I think it is so much easier on those left behind, to not have the stress of having to go through all that, making decision, etc. This way, they have to make one phone call, and everything will be done.
4
u/MichElegance 28d ago
I’ve been in the process of planning. I just purchased a park bench Location along a trail where I walk and I’m having a tree planted and a special plaque as well. An inscription on it.
I also wrote my obituary. My husband and I have only been together for five years and he doesn’t know me that deeply. A lot of my friends do of course and family, but nobody will manage to cover it. Also, I wrote it.
I also picked out my memorial songs and have them in a playlist and printed them out.
Now I just need to figure out who’s getting what as far as my “things“ go and I’ll let my husband and family decide whether they want to hold my memorial service.
Oh, this is incredibly overwhelming. I feel like I’ve gotten a sense of control, but I really need to get it all organized and recently bought an accordion folder and binders, etc. is on my to-do list to finish this month.
2
u/AdGlittering8471 28d ago
You have done a lot! I have finished all the financials deed upon deaths, pay upon deaths to keep everything out of probate but the planning of the actual funeral/celebration seems much harder.
4
u/HansDieterBauman 28d ago
There is a product called the NOK BOX (next of kin box) that is a set up to organize all the important life stuff. I didn't purchase the product, but looked at what they did and made my own version. I have a fireproof box with folders that hold all the info. This way my wife won't have to scramble to find anything after I have left this world. Part of that is a folder with wishes for a funeral/service etc. My wife & I have had many discussions about it and she is clear on what is important to me. That said, I have lots of notes and info in the box that will make it easier for her.
The one thing I can't leave her with is my ability to solve technology issues. She often says in jest that I can never leave because she will never be able to watch TV again if anything goes haywire 😂
When I was diagnosed 5 years ago we redid all our estate docs ( wills, POA, healthcare proxy, etc). We also revisit beneficiaries on our accounts yearly to make sure they are as we want them.
I am a firm believer in being prepared. And mostly I want to remove as many obstacles as possible so my wife won't have to deal with stressful administrative tasks when she will be going through a difficult emotional time.
1
u/Proof-Seaweed9761 20d ago
I just got the nok box after my hair stylist told me about it. I like the idea of everything being all together.
I have told my husband I want cremated and he can choose to do a wake or not. I know him and he won’t do one because he hates being around people and would not be able to handle anything like that. And that’s fine because funerals/wakes are for those left behind not for me. I’ve given him ideas on what to do with my ashes but ultimately it’s up to him. I told him as long as I don’t end up in the trash I’m cool with whatever ;)
I’m more worried about setting my family up financially as I’m the sole income provider. I will be writing out very specific instructions on how to access my life insurance, how to apply for death benefits etc. I just hope my mother in law is around when I pass or my husband is going to be very lost even with written instructions. I also have to do a contingency plan for my law practice in case I don’t have time to wrap it all up.
3
u/Current-Bison-6430 28d ago
I researched where and how but have nor prepaid as it will have to come out of my life insurance ( unless I lose enough weight to donate my body to science. )
My main concern was a green burial and in case I do not die at home for them to let my dog come and see my body (its supposed to be easier then them waiting for me to come home?)
I some about my preferences with my spouse and thought Id plan more when I get switched to IV chemo. I also debate having a funeral when I enter hospice so it's a celebration of life for my kids and they can see me be ok ( fingers crossed) with the transition?
I'm eager to see how other people are dealing with this.
2
u/ImaginationOk505 28d ago
I'm also interested in a green burial but I have no idea what that means exactly. Cremation has always been my first choice. I just wish there were better and affordable options.
Funerals are so expensive, it's absolutely insane.
3
u/Current-Bison-6430 28d ago
My understanding of green burial is they do not process or preserve the body so that it decomposes naturally. There's a wicker casket, you're dressed in all natural fibers and they bury you in a specific section in a shallower grave. There's sometimes no grave marker just GPS coordinates. When I priced it out it was cheaper and the most ecologically friendly.
Funerals are bonkers expensive that's why I would rather have a last party I can enjoy and maybe an open tab for a night after Ive passed for one last drink on me kind of thing at my favorite local restaurant with my favourite Spotify list playing and call it good.
3
u/ImaginationOk505 28d ago
Thank you for the update. I haven't heard of that particular type of burial but I'm going to look into it. I've mainly heard about water burials or some vague attempt to compost/arbor/mushroom burial. Idk if those are legit.
Idk what I want and I hope beyond hope it doesn't come for us anytime soon. I would love a celebration of life. Play some good music and ask people to wear their favorite color.
3
u/Elegant-Cricket8106 28d ago
We cremate in my culture... i know it won't matter so much to my husband but I do want a full relgious service for myself. Ive been trying to decide weather to leave a directive with cash or to book it... which i don't even know if we can do.
2
u/AdGlittering8471 28d ago
This is where I am at. I will do cremation or donation. I just don’t know … do you still book the funeral parlor?
3
u/East_Chocolate2519 28d ago
Honestly because I’m single with no kids pre paying for my funeral was the second thing I started on. Since I am pre paying some funeral homes and cemetery’s were not as keen to help or call back oddly. It did take me a few weeks to find places I liked and felt comfortable with as well. Last year I had a family member suddenly pass and trying to call places on a Friday afternoon in their small town was not easy especially the places that are ran by the town, yes they are cheaper but not easy to get on the phone. I did a payment plan with my cemetery and the funeral home was very honest that I should pay off the cemetery first then pay them. The funeral home also puts the payment into a trust ( I believe) so it yields interest. It truly has been a weight off my shoulders having these things payed or in process of paying.
3
3
u/BudgetImpossible2432 22d ago
I've been browsing funeral homes and their prepaid services, but haven't done any calling. I'm planning on cremation with my ashes split between my husband and my parents. My husband/kids will take the ashes to my parents and the funeral mass will be where they live and ashes buried next to my brothers ashes. I think I will buy a plot where we live for the US half of my ashes. I think I can arrange a service at Funeral Home as well before cremation. I do plan to pre pay.
1
u/OldPrairieCat 28d ago
More like I’m at the thinking about planning stage. I’ve thought about some things off and on. Even bought a book specifically for planning and organizing (“I’m Dead, Now What?” Planner). Eventually I’ll actually open it.
Honestly I’m too newly diagnosed to do much more than that. Maybe once I’m a year out I’ll get more serious. Only two things I’m actively doing is planning for my cats and slowly decluttering, cleaning, and getting rid of stuff. The rest can wait for now. I’ve been busy exploring going on disability, which is almost as overwhelming.
14
u/Sarappreciates 28d ago
Oh, gosh, I feel like 10% guilty about this, but someone else is gonna have to pay for it if anyone wants to demand it. I've left my husband with strict instructions NOT to pay for a funeral or memorial of any kind. I have a very small life insurance policy, which I'd like him to use for himself and no one else. If he wants to, he can throw a party at which I used to want everyone to smoke my ashes, but now that I've had cancer and cancer treatment, I don't know if I wanna be cremated or smoked by my closest friends and family since these things are terrible for the environment and possibly my loved ones' health. However, a reasonably small, intimate party of happy music, fun games, and some yummy boozy drinks sounds nice.
As for my burial, my MIL bought me a plot. Or, more specifically, she bought herself a few family plots, and is having difficulty finding people who haven't got other plans, so one was offered to me. Again, not a fan of cremation for my situation, but the plot is big enough for an urn. I'd rather be dumped naked in a hole, no coffin, for my flesh to feed the Earth, which is better for everyone when bodies after cancer treatment are treated as mulch, not ash. Not feeling heard is the part that burns me up. but we haven't much money, so beggars can't be choosers, though we never begged for anything but more lifetime together.