“The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end.”
To Die Well – Sidney Wanzer, M.D.
I swear, my parents at this point are quite convinced they’re my guinea pigs. They run and hide when I walk into the house spouting about end-of-life conversations. They, more often than not, cringe quite outwardly when I start the conversation again……they remind me “all that was done with the attorney and is in the file box in the office”.
I love them though, very much, and hence why we keep pounding our heads against this conversation. I’m learning too, speaking to your own family is quite a different creature, I haven’t figured out the best approach, I try different tactics, I annoy them, I badger and pester them, I leave statistics on mortality and failure to honor end of life wishes on tiny notes attached to mints on their pillow at night. I’m quite convinced at this point they somewhat believe it’s because I wish to hasten their demise….but the truth is quite the opposite.
I want to help my parents to live, every last moment, as they would like to. I watch them trying to do the same for my grandmother as they support her in staying at home at this juncture of her life. I want the chance to do the same for them, but I can only assure my ability to do that by talking to them. While I understand that neither of them wants to live connected to machines without an ability to interact with the outside world, that actually answers very few of that questions that could quite likely arise at the end of life. To be able to securely say I can assist in guiding both their medical care and general quality of life someday, I need more information.
It’s not about how they want to die; the conversation is about how they want to live.
That is what excites me, that is what arouses such a passion in me that I’d change my life’s work to doing this for others. So of course I want my parents to engage and give me these answers. At the same moment I understand their hesitancy. I understand the reason that 90% of the American population says they want to, they understand they need to have the conversations about end of life, and yet only 27% actually have. Contemplation of our mortality, well, it sucks.
So what do we do? Don’t think about it as a conversation about your death, think about it, and approach it from the perspective about how to live.
When confronted with the question of “where do you want to be in 10 years?”, most of us aren’t going to say emaciated and sickly, urinating on myself in my wheelchair in the local nursing home. We talk about the houses we want, the places we dream of traveling, the jobs we’d like to have. We speak of marathons we want to run or time we want to spend with our families. We talk about the things that have value to us. We speak of people, ways of life, independence, goals and dreams.
So Mom and Dad….what are you dreams for the future, for the next 10, 20, 50 years (seriously though, if you two live 50 more years, I’m moving back to Hawaii). You built yourselves a single-level house to retire in, though I still laugh at you that it requires going up at least 2 stairs at any entrance. Hey, we’ll build you a ramp. Do you want to be in Maine? Do you want to be living it up on a beach in Florida until the end; does it have to be Florida? Maybe Costa Rica? If dementia takes over your mind, do you want antibiotics if you should get pneumonia? If the choice to leave you at home and independent is no longer an option due to safety, or medical needs or some other factor, do you want to live with me, would you want me to move in, or would you prefer (really) to go to a home? What should we do when you can’t drive anymore? Would you let me take care of you? Would you hate every moment of it? Do you understand that often for loved ones it’s therapeutic to be able to care for their ailing family members, I mean probably not for me, but you know, for others it is. Would you ever want a feeding tube? When? Why? When would you want it to stop? What items are most important to you if you do ever have to move? What would you want to have in your room, what gives you the most comfort? Who would you want to know about what’s happening to you? What are the lessons you haven’t taught me yet? What are the stories and the experiences you want me to know that we haven’t yet shared? What do you believe about what’s beyond and how do I help honor that through whatever comes? What do you dream of that you haven’t accomplished yet (besides me giving you grand babies…..that’s not currently a negotiable option).
I know, my parents have told me, ideally they will both go from healthy and vital one day to dead in their sleep the next. In some ways, I wish this same kindness to them, though I know the toll that end will take on me someday should it be what comes to pass. Quick death leaves so much unable to be resolved for the ones that remain behind. I will tell you however, knowing what I know about my family history, seeing what I’ve seen in our experiences with slow and agonizing decline, I can’t fault them for wanting this, and I believe, that someday, knowing that is what they wanted, would make it far easier to grieve and move on from losing them. I know to unplug them or stop resuscitation if it’s likely futile. There is, however, so much else I don’t know. Questions my brother and myself could someday stand trying to grapple without their help, without their input, questions about their lives and their willingness to continue living them.
So Mom and Dad, you see it’s out of love that I pester and nag you, that I ask you questions that hurt or bother you, that I drag you from your comfort zone and ask you over and over again to talk to me. I want to help you get everything you want from this life, and I want someday set you free in as peaceful and beautiful a way as we can possibly make it. Oh and I ran out of mints, so there will just be notes from now on, unless you buy some more mints.
For anyone else reading this….if you’re having the same difficulties talking to your family, that’s part of why I’m here. I have tools and tips and tricks (I swear they work on anyone but my parents) and I’ll even come over and have the conversation with your parents, for a nominal fee of course, you have to provide the mints.
If we want the climate of end of life care to change, if we want to assist ourselves and our families in living good lives until the end….we have to talk, we have to grit through it and answer the questions that will empower us to do so. Maybe, just maybe, eventually those questions won’t feel so scary anymore.