Sensitive – Ideas for leaving legacy and tips/love for family and kids
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Rick,
I agree with Pam…..your posts on this site about how you feel about your family and what you want to leave them with are tremendously wonderful!! You might make copies of them for them so they will know your thoughts at this time in your fight. Put them away in a “Book of Remembrance” for them for later. (MUCH MUCH later because you’re going to be around for a long while right?) Can’t hurt get started though.
Linda Z.
Rick,
I lost my Mom April 3, 2009. She lived almost exactly one year from diagnosis. Mom was Stage IV with mets to the lungs when diagnosed. She too developed the acites about a month before she died. When she was admitted to the hospital to try and drain it, we discovered it was loculated (in small pockets) and it was not able to be drained. The tumor had spread to the abdominal cavity. I also believe she had some brain mets as well.
You can search my screen name (Cherbourg) and read my posts. I posted on here the night she was dying.
That said, I share what hopeandgrace says above. I would give anything to have something with Mom’s thoughts or her voice talking to me. I discovered by accident that her answering machine at work had her voice mail on it for the longest time after she died. I was hitting speed dial on my cell phone one night to tell Daddy I was almost back to New Bern. It’s a miracle I didn’t wreck my car when I heard my Mom answer the phone! I’d mistakenly hit her office number instead of their home! I can’t tell you the times I called it in the middle of the night just to hear her voice. I had a friend try to get the message taped but it’s hard to hear and now it has been removed.
By the time we were finished with actively fighting the tumor and released into the care of hospice I was so drained and scared and tired that I feel I may have missed chances to really talk with Mom.
I treasure the notes she wrote in her bible. I also have the emails from her computer that she wrote to friends and office staff about her illness.
I guess what I’m saying is write, hug, make memories and leave your family with letters, a video – anything will do. Believe me, it will help with their grieving process.
You are an amazing man, husband and father. Listen to your gut, you can’t help but do the right thing.
Hugs, love and many prayers are coming your way,
Pam
PS….Just reading your posts on this site will be a wonderful legacy.
Rick,
I am going to say again what a brave, sincere man you are. You are asking for candor, and I know this is sensitive, but for us, there were certainly signs of the fight coming to an end. Around Thanksgiving, my mom developed the ascites that a lot of others on this site have spoken of. I know this is not always a sign, but for my mom and from what her doctors told us, it was a symptom of the progression of the disease. We lost her a little over three months later. She was functioning quite well even when the ascites set in, though. We didn’t necessarily think it meant we’d lose her in only 14 weeks – she was cooking, working, cleaning… going on with life. About two months after the ascites set in, she began vomiting blood. She developed something called esophogeal varices. She was hospitalized and made a turn for the worse. We could talk to her, but, it wasn’t the same after that.
I really believe your faith and your fight will be tremendous legacies to your children should you WIN this battle and find your victory if your body succumbs to this disease. If I were you, I wouldn’t wait until you see “signs” that things are turning. When you have a thought about your children, or life, or anything, write it down for them. One thing I wish my mom would have done would be help me through the mourning. I wish she had written me a letter that said something like, “Honey, I know you miss me, I know you love me, but I’m not so far away. Everything is going to be fine. I love you. Try not to cry, hug your boys and smile. Don’t waste your time crying looking at pictures of me. Just go on with your day and praise God! I’ll see you soon!!” I know that’s what she’d say, I just wish I had her on video or in writing talking me through this. I had no idea how gut wrenching the mourning process is and she is the one person who could help me through it.
Your children are so blessed to have you as their dad. Praying for you, your kids and your wife.Rick,
First of all, your family will never forget you – and there’s no such thing as “softening the blow” by doing less than more. My husband Gary passed away almost 6 months ago, and he gave me the special gift of repeatedly assuring me that he wanted my life to go on and that he would be disappointed if I allowed his death to hold me back from doing things. I can’t tell you how many times in these past months I would have had guilt feelings about laughing or having fun (or taking that last minute cruise with my brother and sister-in-law) if he had not reassured me that those were the things he wanted me to do.
One extraordinary thing Gary did do, in secret, was to ask a close friend to call our immediate family members(me, his mother, brother, children) 2 months after his death to remind all of us that he felt we had grieved enough and it was time to go on. Many, many tears were shed the day we got that phone call, but the experience was priceless.
I must say I treasure Gary’s last handwritten words to me, as difficult as it is to even look at them somedays. At the time we didn’t know his death was so close, so I thank God I held onto them.
I will add you to my prayers that you continue to remain with your family.
Take care and bless you for doing whatever you can to make this easier on your family. It’s not fair, but we don’t get to make those decisions.
ElaineThis is such a hard question to ask in followup, but I’m wondering if any of you caretakers can identify when you knew that the end was near? Did you have much warning?
There is so much to do and so much to be said I don’t want to run out of time before I get to do it all – and I don’t want to wear myself out trying to do too much, either. This is so hard!
Rick
All I can say is I think you are all totally amazing. I only wish things hadn’t gone so quickly that we never had a chance to think or do some of the things you are doing. –Darla
Rick,
You certainly have it all together here! I think you “get it” in that what you may decide to leave your family is not to hold them back, or to be a constant reminder of sadness, but to uplift them, to reaffirm your love for them and not wanting to leave them without important things that may not have been said. I thought a long time about what I would do and again what I would say to you in reply. Ultimately it is your decision, but hearing people on both sides of this issue express how they would have loved to receive something from their loved ones, makes me even more determined that this is right for me.
You are a young parent and your thoughts are going to be a little different since your wife is young. I am 53 with a 5 year old son. I knew that when I had fertility treatments to conceive him, that I may not be around when he was my age. I am also the family historian, so after my son was born, I began writing notes about what I wanted to tell him. This was before I was diagnosed with this awful illness, so it was more an uplifting thing to pass on my “history”. I remembered the movie “Time in a Bottle” where a woman was very ill and began leaving her child audio tapes of things she wanted to “be there for” and might not be. I also remembered an “Eight is Enough” episode (I’m showing my age here!) where the mother has passed away and the step-mother (or one of the children) had found a Christmas present purchased and hidden away by the mother some time before.
I have a friend who’s mother created a video for a granddaughter for school talking about her growing up and a little about her life. It was created as a school project. But when the mother died, my girlfriend gained great solice in being able to hear her mother’s voice again, and felt that she was still with her. My father-in-law passed away in suddenly in Oct 2008, and the family created a video with many, many pictures of him throughout the years (and some we had never seen before when he was young) and set it to music. My husband has used that video over and over to be able to get past his father’s passing. Now it is a source of happiness when he watches it to see how his father lived and the things that were important to him.
All this still doesn’t say that I want to give up. When I beat this cancer, I fully intend to still give my son what I have created. Whether that be in trips that we take together, times that we spend together, and scrapbooks, cards that I can given him, or videos I’ve made. I know what it is like as a genealogist to find one small incling of your ancestors left behind. Even if that is only a signature. It brings you even closer.
My huband,Joel did pretty well considering the very limited time we had.He wrote a series of poems about his experiences and feelings from the time he was diagnosed.He was a journalist and poet.He lined up his best friend and brother to publish these in a book after he was gone.He planned to write 12 but managed 6.
It was great for us to read them and it must have been wonderful for him working on them.He also had a special talk with each of his sons to try to prepare them and to give them a chance to tell him how much they loved him and have a bit of a cry together.
I think it all helped us.We were sad but we didnt have anything left unsaid
JanetRick,
I am so inspired and touched by your message and your courage to fight this disease. I am on the other side of your issue. I lost my mom to this disease last March and I can tell you as her child, I truly wish she had left me more of her. I know I will see her again; but for now, I long to hear her voice, I long to see her face, I jump for joy inside every single time I see her handwriting. She is more alive now than ever, I know that, but while we’re separated, I just wish I had some pieces of her here. I lost my mom on my 29th birthday and as I was walking to my mailbox this year, on my birthday I started crying. I was in my mind saying, (and I know this is ridiculous), “maybe by some miracle the Lord allowed her to write me a card and an angel put it in the mailbox for me to get.” I started thinking to myself, if I knew I were dying, I would start getting cards together for my boys (we have a 4 year old and 2 year old and am pregnant with #3) and have someone I trust (not my husband so he wouldn’t have to be reminded all the time) mail the cards on the same day every year. I wish my mom had done that. I wish she had written me letters. I wish I would have had the strength to sit down with her and record our conversations knowing we didn’t have much time, but I didn’t want to scare her. We just kept focusing on the fight, even after chemo stopped. But looking back, I really wish I had asked her more questions and documented our time together better. That’s just my two cents. When it gets me down that I didn’t do these things, though, I am reminded that it’s all so very temporary. I am by no means belittling the situation or circumstances and I ache so deeply over the loss of my mom. But the fact is, she still exists. The Lord has her and it really won’t be long until I join her. Any questions I have, any things I wish she knew, they’ll all be revealed in due time. The things going on that are unseen are so much bigger and grander than the circumstances we’re dealing with here. It really stinks, I know that, but, we know that here we’re going to have trouble, but it’s ok because He has overcome the world. I am praying for you and your family (I have seen your posts before and been to your caring bridge site).
In Him
Annie
“In your hearts, set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have.” 1 Peter 3:15
PS – hope this didn’t come off as patronizing at all…Rick:
We’re in a similar situation. I’m 31 with a 4 year old son and a wonderful, wonderful husband. I was really freaked about dying and leaving behind a son that wouldn’t remember me and a husband that had to either raise our son alone, or find another partner. The feeling sucks.
I dunno though – since I’ve been on my chemo and have been achieving such wonderful response, those worries seem less and less. Thinking about leaving a “legacy” for my loved ones now makes me feel sad and questions my strength and the power of God. Your miles may vary, of course. If you’re really worried about your kids knowing what a great father you are, go ahead and leave them video messages or notes or little physical reminders of you. Same thing goes for your wife. If you feel like once you get started and it makes you feel bad, well, maybe that’s a sign to you that you’re not in the right place to create something that revolves around your death. Maybe you could take that time and instead go make a memory WITH your family. Have a great family outing, something that you all enjoy, generates good feelings within (which is a great boost for healing), and then gives your family something to remember when you’re ALL happy.
Everyone is different; you might have to try a bunch of different things to find your right answer, the best thing for you and your family. I wish you nothing but peace no matter what your decision, and on top of that, a nice generous dollop of hope and strength. Keep fighting – you’ve got three very precious reasons to live, and frankly, this crappo disease needs as many happy endings as it can get.
Harm
I have the same thoughts and feelings about leaving Hans as you do with your wife. I dont have children, I am not sure if that is a blessing or not. However, I will share with you what my psychologist shared with me. Studies show that people who have truely loved someone and had them die are highly likely to find someone to love again. I still worry over Hans being alone, but I like to know that statistically, he will find another love later when he is ready.
Kris
Hi Rick. I agree with what you want to do with all my heart. Except for one thing you said….”at one point I was everything to my family”….you still are!! You are their breath and life and whole world. I love the Videos. You will always be the father of your children. I also think a Video can be very cathartic. Why not start with you as a little boy then how you met their mother etc, etc. Insert pictures where you want and put some advise, suggestions and values in. While doing this remember, no one has an expiration date but maybe you would feel better starting the video.
My husband has the CC I have another rare cancer. I will be 70 next month he is 77. We started some years ago giving things to our children and grandchildren that we know they want. This last Holiday Season instead of buying gifts we gave them some “big” things we know they have been wanting. We just tell them we are down sizing. Nothing morbid about it. We want to be able to see them enjoy our things. We do not have end of life dates, but we know the results of CC. So we remain realistically optimistic.
I know you can feel the love around you and never for a second think you are still not “King” of your castle!I read recently a post from Linda in which she is making a video diary for her kids in the event that she passes on. While this is a sad thing to think about, it is something that I’ve thought about often.
I am on 32, have a wife who is 30 and children of 2.5 years and 5 months old. Right now systemic chemotherapy is working for me and I’m optimistic I may beat the odds for awhile, but I also am realistic and listen to the advice of the Dr’s that say it is terminal and I may only have 6 months left. This is a really morbid thought!!! At one point, I was everything to my family – a good husband and father and now after the CC has dragged me down and the side effects of chemotherapy I feel like I’m only half the person I used to be. But my heart is still there. I love them so much it hurts. I want so desperately to be there for them. My wife is my soul mate and we’ve been blessed with a fantastic marriage. I’ve recently gotten closer with my own parents and finally realize the sacrifices that they have made in their own lives for me – and I want to be around to help care for them when they need it. There are so many things that I have both a sense of duty for, but also want to be able to do. It really hurts to realize that I probably will not have that opportunity.
So – what can I do now, even in my sometimes worn down state, to help them for the rest of their lives. That’s my job as the man of the house. I’m not even sure that my youngest son will even be able to remember me. I’m open to suggestions of what some of you may be doing to help show your family how much you care for them even when you are gone. Things that I can write or video message to my kids for important days in their lives (milestone birthdays, baptisms, first dates, graduations, marriages, having their own kids, etc). Or – is it best to allow them to forget about me so they don’t have to live with the pain?
And then there is my wife. She’s so young and beautiful and smart. God truly blessed me when He put us together. It breaks my heart that I will cause her so much grief. I want her to be happy so that almost certainly means she will get remarried when she finds the right person. So, I wonder what to leave for her along the lines of letters or videos. I’m sure she will never forget me, but when she has a new life I wouldn’t want her to be saddened if/when she thinks of me.
There is just so much that I want to say to all of my loved ones and I know that the cancer can advance quickly so I want to get some of this out now while I’m still relatively well and mentally sharp enough. I know I have babbled here as I have also had teary eyes writing this – but I guess I’m really just seeking the ideas that some of you may have from experience. Both from care-givers who have lost their loved ones and from patients who are considering similar things to leave behind little “treasures” for their families and loved ones.
Rick
**EDIT** I realize as I re-read this that it sounds like I have thrown in the towel and given up on treatment. That’s not the impression I want to leave. Because I love my family so much I am fighting with everything I can and doing all of the research and reaching out for care that I can do. I ask God for healing daily, and I know that He can still perform what Dr’s would call a miracle and cure me of this cancer. BUT – I also want to be practical and that includes preparing for what science tells us is happening – and then to prepare for it so I’m not caught blindsided.
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