How do I get my parents to take end of life care seriously?
August 22, 2014 3:28 PM   Subscribe

Have you been successful at having the End of Life discussion with your parents? Would you please give tips on helping me to convince my parents to take it seriously?

I have read enough horror stories now of people's end of life experiences--medical, financial, the whole shebang--that I've approached my parents about their end of life wishes. Initiating the conversation is not a problem. The problem is getting them to take it seriously. They see no need for long-term care insurance. They have been demurring on prepping a living will for years now. Their actual will hasn't been updated since I was a teenager. Even their financial planner says this stuff is important, but my dad's response is "We have enough money" and my mom's response is "Just take me out back and shoot me!" Neither of them were directly involved in the end-of-life care of their own parents, so I wonder if that's clouded their ability to see how aging is a long-term process of gradually needing more and more help, not going from 100% independent to a swift, gentle end.

If they were to need constant care, I want them to be able to have it at home, with a live-in nurse if possible, and I know that is not something they'd be able to financially support long-term. My siblings and I are less financially stable, to put it mildly, and would certainly not be able to do it ourselves. If they have to end up in a nursing home, I want it to be a very good one, not whatever Medicare pays for after they've sold their home and stuff to pay healthcare bills. I don't want to end up arguing with my brothers about all of these things because our parents never discussed it with us. They're in their 60s and still think of themselves as young and healthy, so that's probably a big contributing factor to their reluctance to have this discussion. But my SO does inpatient and outpatient physical therapy in a nursing home, so I am all too aware of the number of active people in their 60s and 70s who go spiraling from an unanticipated stroke or a broken leg.

Everything I've read is either admonitions about the importance of doing this for one's loved ones or the importance of initiating the talk with one's parents. Nobody seems to be giving advice on what to do if you [i]do[/i] initiate the talk and hit a brick wall.

What else can I do? Should I give up and hope they change their minds? I'm not even 30 yet and I've gone so far as to start getting my [i]own[/i] affairs in order in hopes they'll follow suit.
posted by schroedinger to Human Relations (17 answers total) 17 users marked this as a favorite
"Mom, Dad, I love you guys. I need you to take this conversation seriously and I don't understand why you make it into a joke whenever I bring it up. What's making you so uncomfortable that you won't even engage in a frank conversation about it with me?"

Then you get really serious.

"I need to have us set up a plan now so that when the time comes I can focus on making sure that the two of you are really well taken care of instead of being in a total mess. This is not something I want to screw up. It is important to me. Will you help me take care of this by taking this seriously? Here's what I want to accomplish for you..."
posted by Hermione Granger at 3:42 PM on August 22, 2014

Oh, yeah. I know that position. And you're not alone.

This page might give you a place to start, it has some suggestions.

Keep in mind that there may be reasons not obvious to you why they resist talking about this; for me it was that my mother was so terrified of dying she couldn't even acknowledge the possibility or plan for it. By the time they admitted they needed help, it was almost too late to provide it.

One thing you might consider is to express your concern this way: that you need them to plan so that You will be prepared. "Mom, if something happens, I'm going to need a medical power of attorney in order to be able to talk to the doctors."

"Did you see how long it took Joe Smith's son to sell the house after he died? That's because they had to go through probate. That's a real burden to put on your children."
posted by suelac at 3:49 PM on August 22, 2014

Get them to read this article by Dr. Peter Saul, a doctor who talks and writes extensively about end of life care.

He uses a metaphor about ordering from a menu at a restaurant to point out how important it is to know what someone wants in advance, instead of blindly guessing in their absence. You might accidentally manage to honor their wishes, but it's better to know what they want to ensure they get what they want. This article convinced me of the importance of EoLC. Hopefully it'll do the same for your parents.
posted by Effigy2000 at 4:01 PM on August 22, 2014

My dad used to do the "Just take me out back and shoot me!" thing until I started replying "When? Now?"
posted by roger ackroyd at 4:58 PM on August 22, 2014 [6 favorites]

I have initiated multiple conversations emphasizing how important the subject is to me, how I want them to be taken care of, etc, and I get the "Don't worry about it, it's too early, just take me out and shoot me, etc". So it is not for lack of emphasizing how emotionally tied I am to the issue. I have sent them multiple articles and they're either not reading them or dismissing them entirely.
posted by schroedinger at 6:28 PM on August 22, 2014

You can't do it, kid. They don't want to, and they won't. Maybe after one of them dies and the other is swamped, you'll be able to help, but maybe there'll be other issues (dementia, overwhelming grief) that will prevent it then. Absolutely all you can do is prepare yourself for what YOU'RE going to do. You won't have the authority when one of them is gone, but when the second one goes you'll get copies of the death certificate, know what is involved when someone dies intestate in your state, what you intend to do with the body, and whether you intend to either go through their belongings or hire a firm to come in and take everything away. You can show them this list; it's just barely possible that they'll want a say in some of it, but probably not. "Just take me out back and shoot me" is pretty far out in denial.

In terms of planning for before death care, you really can't force them into anything. Nor should you. Long term insurance has proved a very bad choice, expensive and ultimately useless, for two elderly friends of mine. A living will is one thing when you're healthy and thinking about it, and something very different as you age, especially if you have multiple health issues. The one thing YOU can do is find out what options for hospice help there are near your parents, so when the end is approaching, you don't have to start from scratch to get help that can make all the difference in end-of-life situations.

And don't think it's just your parents. I have an adult son, with no children or significant other, and he won't even write a will. I presented it as "If you go before me, don't make me deal with my ex-husband (his dad) about all your stuff!" And he has a lot. He just says "Meh -- you'll work it out." Sigh.....

Above all, remember: Life can turn on a dime. God forbid, your parents might be looking for long term care for you after an accident. Or you could have caught that train to Glory long before them. Since you're so hyper-aware of the end of their lives, use that anxiety to appreciate what you've got right now. There's many of us, now orphans, who wish we could.
posted by kestralwing at 6:52 PM on August 22, 2014 [3 favorites]

As far as it being "too early" ... physically they may be fine for quite some time, but the mental decline might set in sooner, and then you'd be finagling conservatorship and guardianship because they can't tell their behind from channel two.

My father is going through this right now, with daily calls from his mother asking "Why are these people in my house?" These people are the home care nurses we've hired to ensure that she eats and takes her medication. Because she flat out forgets to do it if somebody doesn't sit her down at the table with food and meds. Forget about a nursing home, she threw a fit and called her other son when she had to go to a rehab facility after a hospital stay. He took her home, cancelled home care because she asked him to, and she was back in the hospital within a week. And my father STILL says "just let me live in my hunting cabin when I'm that old." No concrete plans as of yet, but after grandma is gone I'm going to sit him down and make him deal with it.

My stepmom dealt with the same thing with her mom a few years ago. As in, THE SAME GD THING. And neither of them have any kind of plan yet for when they get old. I feel your pain.
posted by checkitnice at 7:14 PM on August 22, 2014

Do they have a regular primary care doctor? If so, maybe before their next appointment, you can call their doctor and ask him/her to talk with your folks about it and/or find out more about their wishes. The doctor won't be able to tell you anything but maybe can initiate the conversation.

Or maybe a family attorney is an option? Or do they go to church? I'm just thinking it would be easier for them to talk with a someone with whom they have less of an emotional connection. My parents have always said they don't want to be a burden to any of us kids (half serious, half joking) and have made arrangements accordingly.

And maybe they are thinking about those issues, they are envisioning you taking on their personal care, bathing and stuff and they don't want to think of you being responsible for that. (Awwkwaard.)

Good luck.
posted by Beti at 8:13 PM on August 22, 2014

A strategy that's been successful for me is to point out how much more awkward and uncomfortable these conversations will be when the end actually is near. Talking about your parents' death when they've probably got a decade or two to live is hard but bearable. Doing it when they've got 5-7 years is much harder.
posted by matildatakesovertheworld at 9:04 PM on August 22, 2014

Send them this and ask them to fill it out between them, for you.
posted by lalochezia at 9:08 PM on August 22, 2014

Focus on what is do-able. I think your best bet is try to get a living will/health care power of attorney. When your folks say, "Just take me out back and shoot me", reply "I'd be delighted but I can't do it unless you put it in writing. Seriously, if you don't want some doctor deciding that they are going to keep your lifeless body alive on a respirator, you need to check the box here and sign it." It is easy to find the forms on-line for each state. Read it ahead of time and figure out what is the minimum - usually there are lots of questions that can be skipped if your parents don't have a strong opinion. Focus them on the few things that are obvious. Just be sure to read the directions and especially check out the rules for having it signed and witnessed.

On another day, ask your parents what their will says. If your family is simple and they leave everything to each other and then split between the kids, there may not be anything that urgently needs updating. Or maybe start by just asking "if you die, where do I find a copy of your will?"

I understand the financial concerns are a big part of this for you but that may be the part where you have least control. Do some research on long-term care - it is very expensive, doesn't always provided what is needed and only makes sense for people in a certain range of assets. If your parents are above or below that range, then you can stop worrying about trying to talk them into it. (You will probably still worry about the finances of aging but that is probably unavoidable)
posted by metahawk at 10:51 PM on August 22, 2014 [1 favorite]

Have you tried showing up with the proper forms for your parents' state? Maybe just working your way through the forms, writing in their answers, and getting them to sign would work. If you have siblings, you might also try telling your parents that you do not want to go through big fights over things they could settle now.
We have a family story about a man who went through his mother's house every now and then and put a sticker with his name on e.g., the back of a painting he hoped to inherit. The last laugh is that he sickened and died at a young age, and his mother survived him.
posted by Cranberry at 11:10 PM on August 22, 2014 [2 favorites]

Maybe they are right. I have lost my step-mother and father to cancer, and both of them lived in their house till the end (though my father was at a hospice the last few weeks). They had help 30-60 minutes a day, and we took turns visiting them, but generally they managed. Same with my grandparents. My mother is 75, and of quite bad health, but still prefers to live in her home and actually does very well there with help from friends and neighbors.
Yes, your parents need to make sure their insurance covers help at home, and perhaps hospice or home-hospice, but don't imagine all people are helpless for ages before they die. Remember, your SO meets the weakest patients, not the many, many people who manage just fine. Maybe your parents are better covered than you think, and just don't want to talk about it?
If they are in their sixties and doing fine, they are most likely beyond the risk of dementia (there are exceptions, but not many), and that in itself is a good thing.
posted by mumimor at 1:10 PM on August 23, 2014

This book by Roz Chast is a must-read in your situation. Give your parents a copy and listen to their thoughts. It could spark some useful conversations. I'm pretty sure it spurred my own parents into action:
Can't We Talk About Something More Pleasant?
posted by oxisos at 4:03 PM on August 23, 2014 [1 favorite]

Viewpoint from a doctor (this is an issue close to my heart): you are being smart. You are being super, super smart and I applaud you - but you still may not be able to make them do what you want them to do. They have to want it, too.

I don't claim to be an expert at behavior/attitude change (which is one of the most difficult things there is), but my approach is to try to come at people at the level they're on. The same approach doesn't work on everyone - some people need to hear "if you don't take care of your diabetes, you're going to end up getting your leg cut off" and other people wouldn't respond to that at all. For example, your mom's response suggests that she's the sort of person who doesn't mind being pretty blunt and to the point. I'd say something in a similar vein, like "Mom, I've been thinking about what you said about end of life decisions. if you get into a car accident or have a sudden serious stroke, it's going to be pretty hard for me to unhook you from all the tubes and the monitors you'll be on in the hospital and drag you anywhere to shoot you. If what you're trying to tell me is that you want me to be able to tell the doctors to pull the plug on you if you're really sick and not going to get better, you need to make me your legal healthcare proxy so I can do that for you. Otherwise, you could end up getting stuck full of feeding tubes, breathing tubes and needles for a very long time, and end up dying with people pounding on your chest and breaking your ribs attempting CPR instead of on your own terms. Think about it. If what you actually want is to have everything done to try to save your life, I won't be able to tell them to do it unless you let me know. I'm ready to sign as soon as you get the form ready with your lawyer!"

If she doesn't respond to a head-on statement like that, she's not going to respond, and you'd probably just have to keep dropping hints whenever the opportunity arises and hope she changes her mind or at least lets you in on what her opinions are about the situation informally, so you'd be able to inform your siblings if it came down to it.

I don't think you have much hope on the long term care insurance front, though. It's certainly a great idea, but if it's not a priority for them, that's going to be a really hard sell. If they don't care about the idea of spending their senior years in a Medicare-level nursing home after selling off all their assets, then they don't care, and that's what may happen to them, and you shouldn't feel like it's your 'fault' if it does happen. And yeah… there are a LOT of people who can't manage on brief daily visits for help, as I'm sure you know, either because their mental faculties are not there or they physically aren't safe (which folks often find out after a broken hip or a head bleed happens - a scenario I literally see in the ER almost every day).

Not sure where the above statement about dementia came from, but I'm afraid that optimism is misplaced. Dementia before age 65 is considered "early onset dementia" and is rare. The vast majority of folks get it later in life.

In closing, keep being awesome and getting your affairs in order. It's never too early and you're setting a great example. Peace of mind is a wonderful thing.
posted by treehorn+bunny at 11:03 PM on August 23, 2014 [1 favorite]

What if you make it a whole family thing? Are your affairs in order? Are your brothers'? This sounds a bit silly, but would everyone respond a bit better if you were all doing it at the same time? Maybe send out email reminders with links and checklists of things to do, and put updates like "Jim's will has been filed this month!! How're Mom and Bob doing on theirs?"
posted by CathyG at 10:16 AM on August 24, 2014

Follow up: I am going to try the "This will only get more awkward" tactic later, but I'll be honest, still nothing has worked. At this point I feel all I can do is hope they take care of themselves.
posted by schroedinger at 3:38 PM on January 10, 2015

« Older Cinematography: What changed on Doctor Who between...   |   Need to restore iPhone NOTES that were not backed... Newer »
This thread is closed to new comments.