Who can I share end of life decisions with, when close family members do not want to discuss that with me?

Once you've got your thoughts in order and written down, give them each a copy in an envelope. They may never need to open the envelope but if they ever do...

You can't make them want to talk. If the discussion is important to you, you can:

• talk to us!
• look up patients' groups and counselling resources in your area
• talk to friends or more distant relatives who are perhaps in a comparable situation, opening the conversation by asking them if this is a subject that's been on their minds.

Dear Respect2Honor,
I write from the patients perspective. I was diagnosed with early onset ALZ 4 years ago. My DW and I were in the process of setting up our estate, when was diagnosed. We had been referred to an excellent Law Firm that specialized in Estate Planning. We put all of our property in only the name of my DW, we did Pour Over Wills, Advance Medical Directives, Durable Powers of Attorney for both Financial as well as Medical Proxy.
Our attorney recommended that we sit down with our adult children and have a little coming to Jesus discussion. This involved having each of them read through all of our legal papers and a Q & A session so that they could ask questions, and that we could verbally tell them we both supported the others Estate Plan. After the end of the discussion we told them, we left no areas for second guessing our wishes in terms of end of life treatment, burial wishes as they apply to our Catholic Faith.
I didn't stop with the above issues, I went on to tell them that they should not cause trouble for my DW when she decides maybe she wants to begin to date or remarry. Life is for the living, and we all need to move forward because in the end, we all do die. I would also not hesitate to tell your family members that dealing with these uncomfortable subjects is a big part of adult life. Confront it and take control of it and prepare for what will soon come in the future.
Me, I'm entering the next stage of life, where I have become a dependent again and turning in my keys to the car. Yes, life will be different for everyone else, but I have to do what is right for everyone, especially those, that I don't even know. The good thing is nobody told me it was time to turn the keys in, to their surprise I brought it up last week without anyone telling me to give the keys up. My neurologist says, she's never had a patient that ever gave up their keys of their own volition.
Maybe someone else will read these words and do what is best for them. I hope this has been of some help to you

Same with me, Mom had everything in place. Her Will was up to date. POAs done. Important papers where I could find them easily. Her Medical POA wrote like a living will. What she did and didn't want. She had written out what she wanted for her song at her funeral. Dad passed earlier so the plot and stone were all ready there.
Maybe you could include who u would want to have what.

People are afraid to talk about death because then they have to look at their own mortality. Its scary thinking you could lose a loved one. Maybe u should tell them you need to discuss ur "end of life" decisions for your own peace of mind.

My Grandmother gave us all the greatest gift putting everything in order the way she wanted and then letting everyone know just what her wishes were and plans she had made. She didn’t really consult us or ask us to help her make decisions but she did take some feedback and make a few alterations over the years. Part of my point here is maybe if it doesn’t feel like it’s attached to your Cancer it will be easier for your family to receive. This really is something we all should do and there is no shame in a health scare giving you the nudge you need to make it happen but it doesn’t have to be the reason you are doing it, hope that makes sense. You have to remember that your family went through Cancer too and while it wasn’t the same experience you had it shouldn’t be minimized either and it may very well be that they aren’t as far “through” it as you are. When you say “I want to make sure my affairs are in order for the future” they may hear “I want to be prepared for loosing my battle with Cancer”. Maybe even suggest you and your husband take care of this for each of you but if it’s too much for him to do for you as well as himself that’s fine.

I would go ahead and write you wishes down, see an attorney and make sure all your paperwork is in order, they will also walk you through the considerations for directives, living will, etc and making a healthcare proxy, you can have joint or you can have a succession and the only thing you really might want to ask your daughter and husband about is if they are ok with taking that on, unless of course you have someone else in mind and then you should ask them the same question.

Then once you have have all of that either set or outlined is the time to share it with them. My grandmother put together a letter that clearly outlined what she had set up, her wishes in the event she couldn’t make decisions for herself and why as well as where all the pertinent documents were and a copy of her health care directives. She sent copies to all of her children, grandchildren, brother and the other relatives in her life she was particularly close to so everyone would know HER wishes and if there were disagreements everyone would be clear. Things can always be changed, adjustments made if people have strong opinions about or don’t like something and you are in agreement to change but remember these are YOUR wishes and it’s your decision not everyone else’s, how you want your medical needs handled, cancer, heart attack, stroke or a major accident and appreciate it now or not should the need arise so much stress and worry, a huge weight, will be lifted off your loved ones if you have layers this all out for them, agree with your wishes or not.

You are taking care of your family as well as yourself and I have so much admiration for you. Good luck and be well. You are doing the loving thing.

I went to a lawyer, had my will and living will prepared. Also prepaid my funeral arrangement. Those where the most important to me. I left a letter about everything else along with the wills and the name of lawyer and crematory. I am glad to hear your are recovery after surgery. Best you can do is live life to its fullest and value every day. Best wishes

I would do as you just said, make your plans, then you can inform them later. They aren’t ready to discuss it. I wouldn’t push the issue. If it is that important to you, then you may want to push it. It doesn’t have to be a verbal conversation.

My kids would tune me out if they did not want to discuss something at that moment but I would leave literature in their room. My daughters told me they always read it.

I don’t force my children to listen to something they aren’t interested in at that time. I tell people when I am not interested in having a discussion with them about a topic, or if I really don’t want to speak to them I simply ignore them.

They may not want to talk about it at this time. It’s not an easy topic for everyone. Respect their feelings for now and you can bring it up later if you wish. You can always discuss it with others who are willing to discuss it if you want another opinion on the topic. Speak to a couple of friends, or bounce the ideas off this forum.

Respect2honor, I have a different opinion than those posted already, but that doesn't make it the correct one, just a different one. Since we never know when our last day on earth is, and since no one gets out of here alive, and since the longer you allow them to avoid this topic the longer they will, you should at least see if your children are willing to be your joint PoAs (assuming you haven't done this already). You need this in place first. They need to understand what it entails, and they need to be willing to do it. Have it done with an attorney so that she/he can moderate any questions and discussions. You also need a Medical Directive, Living Will, and assign your trusted LOs as representatives on Medical Information Release forms which you will need to get at every doctor you are seeing. This is different than the HIPAA form. You can revisit the PoA arrangement every few years if relationships have changed. No doubt your kids' emotions are a little raw from seeing your cancer experience and worrying about you. Nonetheless I insist that my family be realists about life, since avoidance results in only unconstructive and destructive outcomes. You can fill out your will without their input. I wish you peace in your heart and a cancer-free future xxoo

There's a great book about end of life, Being Mortal by Atul Gawande. I'd visit my attorney and draw up an advanced directive, POA, and will - it's usually a package deal. You can talk to your atty about assigning POA, jointly or singularly, and with plenty of backups named in case one can't or won't serve in that capacity. (My husband was named as a relative's POA but his highly regulated industry won't allow him to be POA and have the person as a client - fortunately there was a back up so my husband can advise the POA).

I think that if you are ‘on the mend’, people who care about you will want you to be positive about surviving the cancer. They will be thinking that going through all this is not the frame of mind that will help you. It might help if you think things through yourself, but leave it a while for the talk. It would be easier if you could say ‘I’m feeling so much better now, but the cancer was a bit of a shock to me. Now that I feel sure I am OK, I’d just like to get things in order, so I don’t have to go through that again. It was horrible thinking that there was so much to be done, at a time when I wasn’t feeling good at all’. Best wishes in getting things sorted out.

There is actually a legal, binding document that you can get; its called a "Health Care Directive". It is something that you can fill-out concerning all your wishes that you want followed out in the last stages of your life. If your family does not want to listen, then you can ask a good friend. Who ever you do end up with, they will need to go with you, because the document needs to be notarized. The person you choose will need a copy and you also need to keep a copy in a handy place where it can easily be found at home, along with giving on e to your primary care physician to file it for you. You can get the Health Care Directive by asking your primary care physician, ask someone at the hospital or Call Customer Service on the back of yoru insurance card. I hope this helps. Best wishes on your recovery; feel good!