What do I need to do before dying?

Parent Cafe
21

I have no words of wisdom but I am incredibly touched by your post. You seem very competent and have taken so many important and solid steps. So many good ideas here. I know that I had a child care provider for my older d when a baby. She had lost her mother when she was a teenage and she told me that her mother had written her a letter that she was to read on her wedding day and how special that memory and that experience was for her.

My strongest recommendation would be that all the details regarding your daughter’s legal and financial arrangements be nailed down and spelled out in your will and any other necessary legal documents. I would also make certain that your husband takes the steps to make decisions and plans on his end for his own will and health care, POA, etc.

You will need to find out legally how long your daughter can stay covered under your health insurance and designate someone, either a friend, your lawyer or her future legal guardian to be responsible to investigate her options for health care.

Finally, do take time to stop and smell the roses and enjoy whatever the days ahead will bring you. We wish you and your family well.

22

Remember to keep living your life in the here and now as long as you can- keeping up daily routines. You and other posters seem to have covered a lot. Keep enjoying “the little things” in life.

Also- keep us posted, we do care even if we never meet physically. This is a good place to rant et al- we won’t hold it against you, etc.

Ask your H, S, D and other family members what their expectations are. Some may say nothing, others claim something another wants and so forth. Find out now and put your wishes in writing. So much good advice.

Life isn’t fair. You have a CC support group as of now.

23

Jcc, it took me awhile to feel strong enough to open this thread. Incredible bravery and thoughtfulness.

I think you give your kids as normal a life as possible as long as possible. Are your children aware of your situation?

I love anything handwritten from family members, a favorite recipe from my grandmother, a letter my dad wrote me in college, he told me the dog missed me…lol.

One thing no one else will ever remember is the day they were born, what they were like, what things you loved about them when they were little and any stories. Record them on tape or video. If you remember family stories of previous generations. Give them their history. Let them know you realize they will miss you and how sad that makes you, and give them permission to laugh and love and live a full life.

They will remember you every day of their lives. Let them know about your life when they don’t just see you as their mom. Tell them the story of your life.

I hope your daughter has a few women to snuggle with, talk about you to, prom dress shop, etc.

You are an atheist but I still pray for peace and comfort to you, your family and those who know and love you.

24

I love the idea that you have written down all your favorite recipes for your children. In this day, many people type things on the computer but you might consider hand writing things out. I treasure little bits of my mother’s and grandmother’s handwriting that I have, or accidentally find, and I stupidly love these two wooden clothes hangers I have that my Dad had written his name on.

You may want to take some old photographs and write something about what was happening in the scene. Maybe you can write it all on the back, maybe you might want something longer. If you have a memory of a certain event, it will be wonderful to share with someone else who was there but might have been too young to remember.

Also, with your recipes, you could film yourself making the food and they would get to see you, hear your voice, watch you roll the piecrust or stir the soup and it would be that much richer of an experience. Young people love their Instagram and Vine stories and it could be simple like that.

In all of these things, do what seems easiest and most rewarding for yourself too. Don’t feel obligated, your children and husband wouldn’t want that. Use the time you have left to enjoy your family, even if it is long distance while your son is away.

25

@jcc, I have nothing to add. I just want to say that I’m thinking of you and admiring your courage. I do think that your plan to write letters will go a long way to help your children deal with the waves of grief and depression that come with loss. Stay strong. I think you are amazing.

26

jcc, it takes an amazing amount of courage to write a post like yours. Please do not forget about yourself while taking care of the others.
<<>>

27

I am so sorry you are having to face this, and I admire your courage and compassion.

The one suggestion I might add to all these other wonderful ones is to perhaps seek a professional counselor for your daughter to begin talking to now…and she will continue to have that resource years down the road when she might really need it.

I read somewhere upthread that you are an atheist. I hope you won’t mind that you will be in my prayers.

28

Wow. I woke up this morning to an incredible amount of responses, support and advice. I truly appreciate everyone who took the time to read my absurdly long post, offer some great suggestions, or just emotional support (and yes, prayers are fine!). It was very difficult to write, and I’m relieved it was well received.

You guys have pointed out some things I hadn’t considered, such as putting my estate in trust for my kids so my husband’s kids don’t automatically get it when he dies. I wouldn’t have thought of that and it’s totally necessary in this case. Also, although we have an “understanding” that my daughter will live with my sister should something happen to both my husband and I, I need to formalize that, along with some sort of financial assistance or control for her until she’s through college. I’ll make an appt with the firm who administers my IRAs to see what steps are necessary.

Someone asked if my kids are aware of the situation and yes, they are. I haven’t specifically said “well guys, this looks like it!”, but they’re both aware of the 10% 5-year survival rate and the average survival of 17 months (I’m 18 months from diagnosis right now, so I’m in the Bonus Round already). They know all of that. The reality of the situation will be quite different than an intellectual understanding though, and that’s something they’ll unfortunately just have to live through.

I like the ideas you’ve given me for cards, videos, notes, etc., and will start those now while I still feel good. I made both kids handbound, personalized books that I wrote their favorite recipes in, so they’ll have those as keepsakes as well. I’m unfortunately one of those people who hates to be photographed. I regret that now because there isn’t much of a photographic record of my existence. I’m sucking it up and taking lots of pics now while I still feel and look good. They deserve that.

We are continuing to live life. I returned to work last week basically beause I had to - the company cancelled my life insurance and the only way to get it back was to return to full-time employment. I’m uninsurable otherwise. I was approved for Social Security Disability the first time I applied (apparently that’s a little unusual - sadly, it’s probably more a testament to the gravity of my condition and less to my amazing disability application skills!) so that’s taken care of. I do not have to re-apply when I’m no longer able to work.

We took advantage of my time on short and long term disability to travel as much as possible when I felt up to it. Last year I took each kid individually on their respective spring breaks to a destination of their choice (turned out to be NY and Chicago). We’re planning on a nice family vacation early this summer before my son leaves for Infantry and Ranger school - probably to the Caribbean. I’m trying to make lots of memories without adding the pressure of it being the “LAST” vacation, the “LAST” Christmas, etc., but I’m sure everyone feels it. It’ll still be enjoyable - warm sand, water, sun and piña coladas - can’t go wrong.

Thanks, from the bottom of my heart, for the suggestions and responses. I like having concrete things to do that make me feel like I’m somehow helping the situation. I don’t feel brave or noble. Just sad and more than a little annoyed. Please, if you think of other things, feel free to continue to respond. I’ll keep in touch and let everyone know how things are going.

29

I have to second what churchmusicmom said. My dear friend died two years ago in August. She left behind three children, the oldest was fifteen at the time. The family was so intense in fighting the cancer, all the focus was on the mom. Six months after losing their mom, daughter was admitted to the hospital for extreme depression. Everyone had thought the kids were dealing with it just fine, but really, how could they. I think being proactive on that front with kids so young is an excellent idea. I lost my mom at forty two and I remember going through two years of my life on auto pilot. I can only imagine the impact on a fifteen-year old. <>

30

I don’t have much to add but as someone who lost a dear sister recently, I will say that I agree about handwriting. Every so often I come across a paper with my sister’s handwriting and it is amazing the comfort that brings. I think it is a tangible memory. Perhaps you might like to write a letter to future grandchildren. I must say you sound like an incredible person and I will be keeping you and your family in my thoughts.

31

One strange little thing to add - when you go on your family vacation, bring a doctor’s note that says you are OK to fly. A woman was kicked off a flight recently because she didn’t have one and missed her chemo appointment at home.

32

I also don’t have much to add here, other than I so admire your courage and ability to face this challenge head-on. The one thing I would like to add: my own experience of losing my dad when I was 15 and then my mom 10 years later. They both were gone before I met my husband and I know that I would have treasured having a letter from them on my wedding day, on the birth of my children, etc. So yes - please do write the letters. It may be bittersweet for them, but I really believe that they will treasure them and feel that you are still with them on these milestone occasions. I wish you and your family the best in this awful situation.

33

Odd and interesting, Greenwitch. I’ll do that. I wonder how the airline even knew?

34

Here’s a link to a story about the woman kicked off the plane. She apparently put on a mask to avoid germs which prompted some questions from the flight crew.

I don’t have any practical advice to add, just my best wishes to you as you go through this.

http://www.cbsnews.com/news/woman-with-cancer-booted-off-flight/

35

Hugs to you @Jcc I need to absorb your story - and your courage – before I can come back with advice.

36

It might be nice to video yourself going through photo albums, recording what you say about the pictures. Then your kids can look through the albums while playing the video.

37

I am in awe of you, jcc. There are some great suggestions on this thread. I echo the advice to safeguard your assets from passing to your husband’s children. I agree about the value of handwritten material.

I would consider having professional photos taken, maybe black and white, with your children.

I’m praying for the best possible outcome.

38

After each of my parents died, I went through all of their papers, and I discovered things about them and other family members that I had not known before. Some of these things might have been upsetting to me if I had discovered them when I was very young and had no one with whom to discuss them. For example, I found my grandparents’ marriage certificate, which showed that they got married only a couple of months before their first child was born. They had lied about their anniversary date for the rest of their lives to conceal this. The middle-aged me who learned about this found it interesting but not upsetting. But if I had found out about it as a teenager, I would have reacted differently.

Is there anything like that in your records? Something that you might not want your daughter to see while she’s still very young because you would not be there to put the information in perspective for her? If there is, you might want to make sure that your daughter doesn’t see the documents until later. Perhaps a relative could hold on to them until she’s 30 or thereabouts, along with a note from you explaining the circumstances.

39

Wow, this is rough. A great idea to ask here, where people are one step removed so can be a bit more analytical. You’ve heard some great ideas. One thing I think about is the nostalgic items, who knows what will happen to ‘stuff’ as your DH ages and your kids are too young to be established in one place and cart tsotchkes around?

Can you arrange with some one who loves them and has long term stability, your sister or someone like that, to hold a box for each of them to be given when the have their first real home? You could choose items and prepare that box.

40

Another practical concern may be a conversation with your daughter’s school to let them know what’s going on now.