End-of-Life Planning?

[PF_PVD]

What no one wants to talk about but those of us with cancer surely think about…

I have always been a planner.  When I began recurring, I panicked but once we had a treatment plan, I was fine.  Also, I’ve had good times and I’ve had bad times, and I know you don’t always get warnings about the bad times.  Things can change so fast.  Last month, I went from working full time and enjoying life to being hospitalized, having surgery, major tumor growth, and having to take nourishment through a tube—in less than one week!  Everytime I go into the hospital now, I wonder if I will come out again.  So, I’ve already made some decisions about my death.  I can make them now while I am relatively pain-free and not rushed.  Probably the most important one being unusual these days—I don’t want to die at home.  I have lived in this town for less than two years, and lived here only 9 months when I was diagnosed (my company moved me here for a job).  The move happened so fast, that we sold our house in FL and decided to rent here and look to buy later.  Well, we won’t be buying anytime soon, now with my health issues and work uncertainty.  This place I live is just that and holds no attachment for me.  Fortunately, we have a great oncology floor at my hospital with a very good nursing staff.  My understanding is that you can have hospice in the hospital, too.  My husband is a hoverer because he wants to make everything right, and he would never get (take) a break at home.  I have to force him out of my hospital room.  The burial stuff is easy, as I think it’s a waste of real estate.  

I’ve also been told that ovca will be what “gets” me, and I’ve discovered I’m OK with that.  I actually like knowing this, as I feel somewhat in control.  I also know that I will have warning—that I don’t have to worry about being a frail old lady who drops dead in the supermarket aisle with her droopy breasts bared to the public in an attempt by paramedics to save her life!  I’m sorry to be flip, but I think a terminal diagnosis earns me the right.  

So, have others thought about these end-of-life issues or I am just weird?  Don’t waste your pity on me, as I don’t feel particularly sad thinking about these things, because as I said I like to plan and I do feel some measure of control over my life.  It’s actually very empowering.  Can we please hear from only those who are actually dealing with advanced cancer, as there is very little of that on the forum these days?  Unless you actually have cancer, your perspective on this topic is far different from those of us who do.  I hope you will respect this.  Paula

[ireneo]

I just heard about the "ethical will" during some training at the hospital (my husband and I sit with dying patients that have no friends or family available). What a beautiful idea, to share your feelings with your family. Too often we don't take the time to tell them how proud we are of them, what dreams we still have for them, giving them the freedom to move forward knowing our love will always be with them. Assuming it will be something positive, the written ethical will can be read over and over again providing comfort.

[momofsandj]

I am dealing with recurrences and have all the same feelings you are all discussing  but I am also an attorney -- you all need to have wills -- it will save your families an incredible amount of aggrevation in dealing with the reallyl simple things if you have a will for them to probate and get letters testamentary that will give them the right and ability to handle little things that may slip through the cracks.  You also need a living will or advance heathcare directive that appoints someone to make the decisions at the end if you are not capable of expressing your wishes at that point.  And in the meantime you need a durable power of attorney so if you become incompetent or too ill, your spouse can handle things that may be in your name.  Check all your life insurance and retirement plan account beneficiary designations.  Things may have changed since you first set them up.  If you really want to be a control freak, make a list of things you want read at your memorial services or funeral and have them in a file for your familly, as well as who you would want to speak.....Do an "ethical will" which is just a long letter telling your family what is important for you to know that they will understand when you are gone -- what morals are imprortant to you, what you hope you have passed on to your children, and what your hopes and dreams were and how your family helped you meet them -- it will give everyone some peace.  Finally, get all your financial documents in order and put them in one place along with any online passwords you have to access your accounts or your computer -- otherwise there will be panice when your spouse or other try to start taking care of things.

I hate to be business like, but everyone else has dealt with the emotional side of this and I really have nothing to add but the business end of things.  Doing all this will make you feel that you have taken care of things and are at peace with yourself and have helped your family.  That makes the passing easier --- my mother did all this and it was a blessing to me -- she even drew a picture of the headstone she wanted and put what she wanted read at her funeral in plastic sleeves so I wouldn't ruin it when I cried --- I have not yet been able to do all this, although I have the legal stuff in place (of course)

Momofsandj

[ireneo]

I'd like to add I think it's important to get things in order as you say. That doesn't just mean a will and burial vs. cremation. There are things to do with and for your family. My Mom has been asking my Dad so many questions this past year about everyday items - how to order their medication, how to use the sprinkler system, how to use the DVD player, where's the paperwork for his retirement payments. He just kept saying she didn't need to deal with this right now. Well, "now" is here and he's unable to answer her questions because he's too sick and confused to help. Sure, my husband and I will dig in and try to figure it all out. But my Mom would have been more confident and less worried if she knew how to handle some of these things on her own by now.

I understand he didn't want to face the idea of dying soon. But to help my Mom with some of these things would have been a gift to her.

[marie3B]

Enjoy your friends and Ringo.  I don't have a will done either, but most everything else is done.  I am now a member of the Cremation Society of Mid-Illinois.  It is no country club, but they will spare my husband dealing with the details.  Marie

[bohan54]

Just came across this post by accident so thought I'd add my 2 cents.
I don't have a will yet, should probably contact me cousin Jeff attorney at law and discuss this.  Guess I just figured everything will go to my spouse and son but don't want them to have any complications.  
My biggest fear is a long, drawn out, wasting away like my dad.  I still have nightmares about him, it's hard to recall the jovial, athletic man he was before cancer.  At the hospital, his doctor asked me if they should give him more morphine even tho it could stop his heart.  Dad and I had discussed deliberate OD and I gave them the go ahead.  I do not feel guilty about it one bit.
My husband knows that I want to donate my body to medical research with cremation to follow.  As far as a send off, since I won't be there it really does not matter to me, it's more for his and my family's benefit so they can do whatever is comfortable for them.  
Now to go about enjoying this lovely July day, 2 of my best friends are coming over and tomorrow I get to go see Ringo Starr at Casino Windsor.
Love,
Sharon

[PF_PVD]

What a beautifully-written, thoughtful response.  Thanks for sharing this with us.  Paula