What would you do if you found out you were dying?

Parent Cafe
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Yes, I know we’re all are dying but, finding out it may be much sooner than expected?

Here’s my list, curious if there’s anything I’ve neglected or anything other folks would do?

Find the best doctors possible for second opinions, and the best treatment to maintain the highest quality of life for as long as possible.

Pre-plan and pre-pay final arrangements (went through the Neptune Society and it was much cheaper and easier than I feared)

Meet with lawyer to make sure will and estate plan is up to date and all paperwork (power of attorney, living will etc.) are complete. Everything goes to DH and we own everything jointly so it’s not completed on my side but we’ll update DH’s paperwork at the same time, which will divided things between the 3 kids evenly when the time comes. This is all so much easier now that the kids are older and will not need guardians.

Gather all vital paperwork, insurance policies, birth and marriage certificates, SS card… and all account user names and passwords and put in one file. Also include a “please notify list”.

On a more personal note - make a list for DH about who should get which family mementos and when (it’s a very short list!)

Write down general ideas about a short church memorial service (things like make donations to xxx charity instead of flowers, hymn suggestions, what photos I want used). I’ve meet with the our pastor and she’s on board with anything I want. Who to contact for ash scattering and where and who to contact to setup lodging since it will be out of town. Another nice thing about being cremated is you can have your ashes scattered at anytime so DH can pick a time that won’t conflict with college schedules;-)

I’m also doing a lot of “reverse nesting” cleaning out closets, labeling tools and supplies in my hobby art studio. Finally making appointments to get all those nagging little repairs around the house done that I know DH will just ignore - I got the master bath repainted, got the broken cords on the blinds fixed, got the carpets and sofa cleaned. I’ve taken in some antique prints to be re-matted and conserved and repaired and some furniture that’s been waiting over a decade to be re-upholstered done… I also ordered DH that crazy expensive incline trainer thing he’s been talking about but wouldn’t spend the money for on himself. Even if things turn out for the best, I can’t tell you how much better taking care of this ancient “to do list” is making me feel!

We’re in “hope for the best but plan for the worst” mode, figuring any effort in planning we do now, even if things turn out for the best as we hope, will make things easier down the road. It should be much simpler to update things than start from scratch. Just wondering if I’m forgetting anything?

All three kids have Spring Break now, today was the first full day they are ALL home, a very rare occurrence!. So of course I end up back in the frickin’ hospital this morning when I was supposed to take DD shopping for clothes to wear for the family portrait on Wednesday and to look for a dress for her rehearsal dinner. Wednesday DD and I are doing an all day mother/daughter Spa Day. Not something she’d normally be willing to do but something I’ve always wanted to do so she’s happy to make me happy:-) The boys and DH are going to the fancy barber for beard trims and hair cuts and then we’ll all meet up for a professional family portrait (something we’ve never done) before heading out to a very nice restaurant and one of the few that can meet my crazy new dietary requirements. I hope to be released Tuesday afternoon or very early Wednesday if not I’m leaving any way! I just don’t think it’s too much to ask to be able to help plan my only daughter’s wedding. Seriously more “observation” isn’t going to do anything at this point, just do the procedures and let me go home. They will either work and give me temporary relief or not but really, there is NOTHING else they can do at this point.

I just got the last of my doctors to give me consent to travel a few weeks ago (before this latest complication came up) so I’m going to FL after Spring Break to visit with my elderly mother and disabled sister who are not able to travel, and attend at least a day of an international art glass conference that I’ve always wanted to go to. Tickets are paid for reservation made and I’m not missing that either.

This whole condition came on suddenly and totally unexpectedly, I was admitted to the hospital late night/early morning of 1/5-1/6 and released the afternoon of the 10th. I had a pre-scheduled appointment with the specialist that had me admitted to the hospital on the morning of the 1/11. He looked like he’d seen a ghost when he opened the door to the exam room and saw me! He then admitted he never thought I’d make it out of the hospital alive, up until that point I had no idea my condition was that grave! My care has been turn over to a transplant team and I’m actually doing much better. This team of doctors are just amazing! (not like the doctors in the hospital I’m currently at that don’t know me at all!) and really, truly understand my condition and how to keep me as healthy as possibly for as long as possible. I’m not officially “on the list” yet, you wouldn’t believe the list of required tests and interviews it takes to get on a transplant list, but I’m well on my way and the surgeon thinks I an excellent candidate for a transplant which is good because it’s been confirmed by multiple doctors that’s my only option. As for now, my numbers continue to improve under the team’s excellent care which will move me to the back of the waitlist when it’s official. That’s one line I’m very happy to keep moving back in! For now I’m just dealing with those pesky “other complications”

My transplant doctors have encouraged me to “plan for the future” so I’ve also started plan for our Fall 2020 two month sabbatical US/Canada train trip. So you guys can look for hearing about our epic train trip and help with suggestions on what to see and where to stay along the way.

Please know this is not a post for sympathy. I’ve lived an interesting and full life, and those who know me know I’ve always lived life on my own terms. I have 3 amazing children who I am incredibly proud of, a husband that loves and cherishes me and that will do anything for me (including taking over all the cooking!), many dear friends and a church family who are standing by my side ready and willing to help with anything I might need (so far there’s really nothing they can do to help - well one’s taking DD shopping for in my place tonight!). I don’t regret any of the decisions I’ve made in my life, even the questionable ones because they made me the person I am today. I am very hopeful I will get a transplant and beat this thing and have started planning for the future again after more than a month of planning for my death. So much has happened so fast, I’m posting this because i want to make sure I not leaving out anything important I should be doing (you guys are the smartest people I know!) and maybe to vent a bit too…

@BingeWatcher I owe you a long PM, it’s not what you think…

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Best of luck as you continue beating the odds. I was told nearly two decades ago that I likely would need an eminent transplant. I’m now way too healthy for a transplant currently and hope to stay that way.

You are doing all the right things—I have done many of them as well. I have a team of top MDs in Denver, another at Stanford, another pair at UCSF and my local specialist.

My hairdresser yesterday says her BIL was supposed to get a transplant but after a lot of haggling, they all opted for him to just gave the “bad” part removed and he’s been doing fine for going on two decades now!

@3scoutsmom — keep doing all these great positive things and who knows what the future brings?

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I’ve been through this with my husband. Pull out every photo ever and go through them with H and family as memories. Then cull them down to only the important ones. Another thing that they won’t have to do. We broke out all the old home movies and watched them together

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OP - I will be keeping you in my prayers and hope for a long life post transplant.

When I did hospice work there was an amazing patient who wrote letters to her children and future grandchildren, to be opened on milestones. She bought small gifts as well. She also recorded herself reading stories to future grandchildren. (I understand that you can actually buy books that you can record your voice over). As a family they also took a lot of family movies.

I hope there will be many more “bests”!

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Wow, I’m sorry to see this! I don’t feel I’d be nearly as organized as you, and I do hope that you are around for a long time. DH does have a paper folder with every password to every account or membership he has so that I can get to it if something happens. His parents died very young and he and all of his siblings have no lived longer than either of them. So it’s something we’ve discussed. I have some difficult relationships with some of my siblings-I want to repair those if possible NOW so that if I were dying that wouldn’t be the last time I spoke to them. Best wishes to you.

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OP-I think your upbeat attitude is going to help you pull through. All the best.

I think I would just want to spend my time with my kids giving them lots of hugs.

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I will try to live my life to the fullest, I won’t let my sickness be a hindrance to do the things that I want before I pass away. Sending you prayers that you need to win this battle.

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Please keep us updated , sending you all best hopes for the future .

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Your positive attitude is remarkable and I think that will serve you well in the future and any and all options for your health. I’m kicking in lots of good thoughts your way.

All I can think about right now is that I would want all my H and I’s stuff in order for the kids and then I would want to spend as much time as possible doing normal, typical things with my kids and closest family members. I always say I really just love “everyday life” - and don’t require a lot of extras - that’s the way I’d like to live any and all days of my life.

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Hmm… I cannot think of anything to add to your very thorough list @3scoutsmom

My brother was in very bad shape indeed and finally went on the lung transplant wait list. He did get his “new parts” and is doing remarkably well, 5 years later.

I wish you good health!

Editing to add:

I forgot. My brother made the interesting choice of NOT sharing how seriously ill he was. He kept it to himself and went to great lengths to hide it. I found out when he had a crisis and ended up in the hospital.

He didn’t let people know how sick he was until he decided to apply for the transplant wait list. Then, he wanted everyone cheering for him.

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@3scoutsmom

You have a great outlook…and your planning is spot on.

And you are taking time to do things you enjoy.

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My husband would need an instruction manual for some odds and ends:

  • dogs' care and routines
  • kids' favorite recipes for food I mail them occasionally, and for when they visit
  • the whole bill pay thing -- I begged our attorneys to stay on top of him so the electricity wouldn't be cut off :)
  • contact list for plumber, snow plow driver, mechanic, landscaper, etc.

My very best to you and yours @3scoutsmom

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My grandmother knitted me a large blanket that my mom gave me at my bridal shower. Then a few years later I received baby clothes that she had crocheted and given my mom to hold onto until I had kids.

My parents are still around but cleaning out there house so they could move after a crisis convinced me to keep my “things” to a minimum, so my survivors would not have to sort thru everything.

Here’s wishing you many more years of organizing time :slight_smile:

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You are just incredible and have done so much already that most would never think of doing. At this point, I would want to think very long term - to when grandchildren are born and even to when my children are older and my age now. My mom died right after I married, so she never knew my children and I missed her child rearing advice and even a positive note from her would have sustained me. She knew that she was dying, so she left a few things for my future children - books and artwork that connect her to them. Leave some tangible evidence for them with a written record. It can be a little note with a bracelet that describes why it is important to you. Or a certain dish that you used all the time with the recipe attached. It really doesn’t matter - just that it’s something important that is a part of you.

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I never thought of leaving letters or notes/recipes/jewelry, much less gifts for wedding or future grandkids. Those are definitely interesting ideas to ponder. Reading books to future grandkids is also another thing I hadn’t thought of.

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Sending prayers♥️

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This is all very interesting to contemplate. I also hope the OP lives long enough for when the master bath needs repainting the next time. A group photo from a good photographer is a good idea. Perhaps recording or writing down your own history would be valuable for future grandchildren to see or read. I remember my own grandmother but I would love to know more about her childhood and have no one to ask.

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3scoutsmom, I am sending positive, strong vibes to Texas. Feel free to use this post to vent. We’re here to listen and understand. Wishing you the very best.

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Your post sounds very calm and organized and positive. Under similar circumstances 16 months ago we could barely breathe, let alone think clearly, for at least a month. I’ll be keeping you in my heart.

Not sure exactly how old your kids are, but we designated our oldest (married, settled) child to be our youngest child’s (20 at the time) guardian and she knows that she wouldn’t inherit her 1/3 of the estate until age 25. Of course the chances of both of us dying before then are slim.

We also changed the ownership of our safety deposit box - from my husband (the one with the diagnosis) and me to my eldest son (our executor) and me, with my husband as a person who can access it. It was done that way at the urging of the bank - something about ownership in case hubs and I both died our son owns the box.

We have tried to.make it very easy for our kids to be able to find all the papers and passwords. As a former teacher my philosophy was always “On any morning anyone should be able to walk into my classroom, look at my desk and easily find fhe directions and materials to take over my class.” I’m trying to set things up in our home the same way.

We set up a private facebook group as a streamlined way to give updates. During several major surgeries and a month in the hospital, and even now with follow up scans and tests, it is easier for all if we are very transparent about how he and our family are doing. (Of course there are other ways to do that. Facebook works for us.) It is exhausting to have to tell multiple people the exact same information every day for months and months.

And we have embraced the “Ring Theory”: (a kvetching order, if you prefer)

The inner ring is the person in crisis. She can say anything at any time to anyone. She can cry and complain and curse. Everyone else can say and do these things, too, but only to people in their own or larger rings.

The ring around her consists of the person’s significant other.
In each larger ring put the next closest people. Usually parents and children amd siblings before more distant relatives. Intimate friends before other friends.

When you talk to a person in a circle closer to the person in crisis your object is only to help. Send your love and help and listening skills IN towards the center circles. Send your grief or complaining OUT, and away from those most affected.

In our case, this meant that for a few months post diagnosis, my husband would only text with his mother because she couldn’t talk to him without sobbing. Her other children handled her grief for awhile. Sending her extreme emotions in towards the patient was not helpful. He was clear with her and she understood why he couldn’t talk to her for awhile.

(My husband is still here, 15 months post surgery, back to work full time and with clear scans and tests so far. Could not care less about the little things that are wrong with the house, but are traveling and living our lives.)

Enjoy that wedding!

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Sending you so much love and wishes for many healthy and happy years to come.