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

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

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I'm on the mend after major surgery for cancer. As I do better, I am working on preparing for the future, getting things in order that need to be faced. I respect that my parents did just that and want to follow their lead, in that I truly want to think about my funeral arrangements, burial arrangements, living will, etc., and try and get things in place ahead of time. I don't know what's coming down the road, though am ok, able to work and care for myself for the time being.

I've approached both my husband (husband and I are estranged, living in the same home) and adult daughter and neither is ready to discuss this. Otherwise, I have an adult son but don't know that he would be open to discussing this; he pretty much keeps boundaries with immediate family and I'm pretty much the only person he communicates with regularly.

I can and will do the prep work myself, make arrangements, and get things in place.

My thoughts are that I just want somebody in my family to know what my plans are and to talk about it with them.

Suggestions will be much appreciated. Thank you.

Care Decisions End of Life Funeral Planning

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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.

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Countrymouse: I am so very grateful that I do have the opportunity to come to this site, re: where you wrote, "talk to us!"

Thank you for your helpful response.

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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.

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Where you wrote, "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." Thank you for making that point. I tend to get a little pushy when I want to address something "right now."

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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

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Geaton777: Thank you for taking the time to share the helpful information and thank you also for the well wishes. You are very kind.

Yes. With my children, I do believe the emotions are raw but know that as time goes on, they seem to be more accepting, less upset.

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Perhaps you can get your arrangements in place, then leave your wishes in an envelope in a drawer, or somewhere that they are sure to be able to find them when the time comes. You could tell them that you have made your arrangements, and that the information is located in xxx

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Thank you. I appreciate your response.

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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!

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Thank you so much for the well wishes. I am doing much better; cancer free at this time.

I appreciate more information from you; also, I didn't realize I'd need to be accompanied when getting the document notarized.

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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).

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Thank you, surprise. I appreciate the information.

Copied from the Atul Gawande website, about the book you suggested, "Riveting, honest, and humane, Being Mortal shows that the ultimate goal is not a good death but a good life – all the way to the very end." I like that description. Celebrate life all the way as much as one can. My family and I try to do so with mom. Our mom is a gem and currently resides in an MC facility.

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The advice to put your wishes in an envelop so your family can find it, I dont believe is the best advice. From what I understand, if you do not want to be resuscitated ,etc... it must be notarized, the legal binding document you want is called a Health Care Directive. Also, unless you have a legal document if the ambulance came to get you, they by law, must resuscitate you, unless you have the legal document filled out. You can get this document from your Primary Care Provider, ask someone in the hospital or call the Customer Service number on the back of your insurance card. If your family does not want to get involved then you can ask a friend to make sure your wishes are followed out towards the end of your life.

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Thank you, Nardini2.

As I replied to someone who had posted earlier, I am hoping for peace of mind and, so, even if I would have to let someone outside my immediate family know of my plans, so be it.

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There is a pamphlet you can get on line called Five Wishes that can help you.
Have you consulted with an Elder Care Attorney? Great place to start when it comes to getting legal things settled properly.
Trusts, Will and all that these are things everyone should have and they should be reviewed these are not just End of Life planning this is Life planning.
Pre plan your Funeral. If the family is resistant to discussing end of life arrangements they will probably not handle well funeral arrangements and this will take a burden off them as well as you knowing you will get what you want.
The next thing is just start talking about what you want, how you feel. These are conversations everyone should have but no one wants.

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Where you wrote, "...they will probably not handle well funeral arrangements and this will take a burden off them as well as you knowing you will get what you want." That is a good point.

I've bookmarked the five wishes website. No, I do not have an elder care attorney; however, my mom and other family members have worked with a good attorney and I am thinking of contacting her.

Thank you for the helpful share.

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My Mum has everything pretty much organized and has tried to talk to my brother about her plans. He says she is focused on death, he refuses to have the conversation. Me, I know her plans and as the POA (everything) and Executrix, I will fulfill them. My brother is second for POA and Executor, but unless I drop dead or an incapacitated, he will not have to do anything.

My brother is POA and Executor for Dad and I am not on any of those documents. Dad has not planned anything, nor has he talked about what he wants, burial, cremation etc.

The best you can do it make your plans, have a lock box and tell the people who need to know where to find the documents and leave it at that. Keep an up to date list of all your accounts, insurance etc in the lock box. Make sure your registered accounts are beneficiaries, so those funds bypass probate. You cannot force the conversation.

I have a copy of my Will and POA documents at home, but the originals are with my lawyer. I have not yet paid for my cremation, but will do that in a few years when I have a better idea of where I will be living when I am older. Likely in the same community, but life happens.

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I appreciate your response. I can go ahead and prepare and at least let family members know where the paperwork is, even if they do not want to discuss my end of life decisions.

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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.

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Thank you very much for the insight. I agree that I am looking for peace of mind when thinking of making family aware.

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Countrymouse: I am so very grateful that I do have the opportunity to come to this site, re: where you wrote, "talk to us!"

The responses have been very helpful throughout, and I feel hopeful that I can get on and face what I need to do, armed with some new info and good ideas.

As it would be for anyone, all this has been a little more than nervewracking since I started the process to address my disease and I know it hasn't been a cakewalk for my family either.

What I am happy and grateful for is that I've had some support from family (first and foremost, my daughter); as well, I have had good healthcare along the way; in addition, I've an employer where FMLA, ST disability and understanding management have been key in getting on with life. It could have turned out so much worse. I am counting my blessings.

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Well if your daughter has been supportive and helpful, then for me its a no brainer that if she is willing she should be the one you choose. Are you thinking the son ( if the DIL was willing) is more able because he is "the son"? I would think she would do a great job, as she has already shown her compassion.

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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.

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Lymie61: Thank you. That information is very helpful. Points taken.

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Hopefully you'll do the basics but have everything finalized with some legal input and you could not only do as others have stated here, put everything in an envelope...but you could add/include the attorney's card and have them have that as a resource. It's concerning to a lot of us who are single, and in the moment, who will follow through on our wishes and respect them. BTW, I've learned more recently about Memorial Societies. Funerals are a dirty little business and that is an understatement...Memorial Societies do price comparisons in an area and educate on what is essential and what isn't, allowing for pre-payment etc. They've been around for decades...

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gdaughter: Thanks for helpful information.

I'm going to do an online search to find out more about memorial societies.

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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.

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MargaretMcKen: Thank you.

That makes sense, " They will be thinking that going through all this is not the frame of mind that will help you."

I'm focused this way, since I am now a senior citizen and feel it's good to be realistic and prepared. Otherwise, in that I've seen other family members, who've died from cancer -- I observed all energy being focused primarily on just getting by each day when dealing with cancer; my thoughts are to be prepared, in case that should happen.

Even if the cancer does not recur and if nothing else serious happens for the time being with my health, I still feel the need to get things in order. I definitely am going on with life, however short or long that will be. I'm back to work, appreciating my job more these days, spending more "quality time" with people I care for and who care for me, and making plans to do some fun things this year. I'm not ready to give up just yet.

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See an elder lawyer and have your wishes written up. Then tell your family where they will find them and that you expect them to follow them not put their choices on you. Good luck.

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TaylorUK: Thank you for the helpful information.

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I would write out what u want, get it notarized and put at hospital and funeral home. Sorry u are having to do this alone but putting it in writing is ur best option. I would send one to your pastor to hold in the event of your death.
Praying u have many healthy happy years remaining.

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Talk with your son and if he isnt open. Call an Attorney and add your wishes with your will.

You make all the decisions and have your Funeral Home picked out and Funeral Pre Paid then I would not only hand write everything but I would also Video it.

I would mail a copy to your husband and daughter as most people will read a letter even tho they may not talk about the subject.

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We found that using “The Five Wishes” was a wonderful way of communicating my father’s final thoughts and wishes. Through the remarkable guidance of the suggested topics posed by the Five Wishes document, it was a constructive, positive and reassuring way of discussing dad’s final wishes as well as touching difficult and sensitive areas we found awkward to talk about generically as a family. We had our pastor there to help guide us through the suggested items but you could easily handle the topics alone. It meant so much for us to be able to have clarity in a gentle and compassionate way before it was too late. It’s worth exploring.

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Try writing a letter to your family. Keep it short and heat felt. Wait and pray. You are ready for this discussion. Now give your loved ones times to prepare for that discussion. Good luck to you and your family.

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Now that you have recovered from major surger for cancer you will be getting stronger every day. It is very possible that you may out live all of your Family so there is no real rush to hurry your will and final funeral arrangements. It is understandable that Family do not wish to discuss this topic with you as they can not bare the thought of Life with out you. Live life to the full and enjoy every moment, and remember that you are Blessed.

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Many find having things in order, or planning ahead gives them comfort. We have not only all legal papers done but our prepaid funerals and burial arrangements done and it was not a sad time but it gave us comfort knowing it would not be a burden on our family, financial and otherwise. We felt it was not a good idea to sweep it under the rug or put off. Comfort to us was why wait, get it done, then one can get on with life and enjoy it in comfort. Everyone's thought process and stage in life is different. Each needs to do what they feel is right for them, when they feel the time is right. Enjoy every minute of everyday.

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Tell them you need to discuss this and plan things out. If they refuse, do it without them. Do you need their signed permission to do the planning without them? My mother, who passed away last week, refused to discuss these things. She told me more than once, "When Im dead, Im dead. Do with me what you want." That was the extent of that discussion.

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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

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You may want to put the letter in the hands of the person who needs it. If I left a letter at my house it would be years before anyone found it.

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My medical doctor has been helpful in addition to my minister. Wishing you well.

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Get yourself a basic cassette recorder, tape record your wishes. Let family know your final wishes are on the cassette. You could even have someone transfer your words onto paper as well for a back up.

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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

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Your writing is beautiful. What wonderful steps you have taken for your family. I am sure it has given you great comfort. This disease has really taught me to live in the moment and enjoy the best of those times. Caring thoughts are being sent your way.

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It is a hard conversation that some people just don't want to face. Write it down as you think of something. Or use a recorder to say things as you think of them. There are documents on the computer you can download (such as pdffiller.com/jsfiller-desk17/?projectId=410730592#bf73f237a513436f538b17526233240f ) to record this or jog your mind as to something you may have forgotten. One thing might be passwords and user ID for any of your online accounts. As long as you keep all pertinent documents in one place (perhaps a plastic tub to avoid water or dust damage) your family should have pretty much what they need to carry out your wishes. Go ahead and talk to your son and be honest w/him that you have a need to discuss with someone in the family and no one else wants to have the talk. Maybe he'll step up to the plate. -- I hope he is willing to help you.

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See a pastor. Many larger churches have a pastor that deals with memorials/funerals. They can be a caring ear to listen and a sympathetic, informed person to help you discuss end of life issues,

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An excellent resource for starting the conversation with loved ones is www.theconversationproject.org. It's also important that you consult with an elder law attorney who should be willing to do a deep dive conversation with you on end-of-life issues. It is critical that you have someone who is willing and able to be your health care agent. I am an elder law attorney and when I have these conversations with my clients, I talk in great detail about the characteristics that make a good health care agent. It often is not the spouse or adult child. Sometimes clients don't have anyone that fit the role. In those instances I recommend they establish a relationship with a professional care manager as I know they are capable of carrying out a client's wishes.

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Going through the same thing. Putting written instructions in the hands of those who I've asked to take charge after my death. (I asked their permission first.) Minimizing the conversation until I have the details set up because I know I can't get their attention span for longer than a few minutes. My folks did the same - left me with a booklet they filled out and pre-paid for everything. Made it a lot easier on me.

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You are so brave, and wise to have things prearranged while you’re competent and able. I’d suggest talking to a lawyer and creating a living will and spelling out what sort of procedures you’re ok with in the event of a major health complication. Determining whether you want to be cremated or buried is necessary to know. How you want your estate handled and by whom should also be set up. Check into assigning powers of attorney for health and financial matters when you can no longer handle those responsibilities. It may be uncomfortable to talk about now, but impossible to discuss once you’re gone! Good thinking- way to be responsible😊

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

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