How it went for me
My mom knew more about senior communities than I did. She'd toured them with my dad years ago, but they never moved. After he passed and her health started slipping, we put down a deposit, then backed out. She wasn't ready, and I didn't want to push her. In the end, her health made the choice for us.
Knowing the options wasn't the hard part. Deciding was. The more your parent has thought about what they want before a crisis, the more the choice stays theirs.
Jan, founder
Ask them one question:
“If you were in the hospital and couldn't speak for yourself, who would you want making decisions for you?”
That answer is the start of a health care proxy, the single most useful document in this whole guide. And asking it opens the bigger conversation without making it feel like a big conversation.
Why now, before you need it
This conversation is so much easier on a regular Tuesday than in a hospital hallway. When things are calm, your parent gets to decide. In a crisis, everyone is guessing, and you're making calls you're not sure they'd want.
Most families haven't done this. Only about 1 in 3 US adults has an advance directive, and even among people 65 and older it's under half (Health Affairs, 2017). A 2020 University of Michigan poll found fewer than half of adults 50 to 80 had completed one (National Poll on Healthy Aging).
There's also a practical deadline. The legal documents only work if your parent signs them while they can still make their own decisions. If that window closes, the family may need to go to court for a guardianship, which takes time, money and a lawyer (Alzheimer's Association).
What to ask
You don't need to cover all of this in one sitting. Pick one group, start there, and write down their words, not your summary. Those words are what you'll lean on later, when there are five options and no time.
- What matters most to you on an ordinary day?
- What would make you feel like yourself, even if you needed more help?
- How would you feel about someone you don't know helping you at home?
- If you needed more help day to day, would you rather stay home with help coming in, live with family, or move somewhere with care on site?
- Is there a place, a neighborhood or a person you'd want to be near?
- What would make a move feel okay, or not okay?
- If you couldn't speak for yourself, who should speak for you?
- Is there anyone you would not want making decisions for you?
- How much do you want to know about your health, and how much do you want us to handle?
- Are there treatments you would or wouldn't want near the end, like a breathing machine or a feeding tube?
- Where would you want to be, if you had a choice?
- What worries you most about getting older?
The last group is the hardest. It's okay to save it for later, or to come back to it after the easier ones have built some trust.
How to start, and what to do if they shut it down
A lot of parents hear this conversation as "you're getting old." It tends to go better when it's about you wanting to get it right for them.
If something ever happened, I'd want to do exactly what you'd want. Can you help me know what that is?
I've been thinking about doing my own paperwork. Have you ever done yours?
A friend's mom ended up in the hospital and nobody knew what she wanted. I don't want that for us.
Pick a calm moment, like a drive or a walk, when you're side by side instead of across a table. Keep the first one short.
If they shut it down, don't push. Say "okay, can we come back to it?" and actually come back in a week or two. Some other things that help:
One more thing that really helped us: other people. A therapist or nurse practitioner who just listens can open doors you can't. And friends and relatives who check in regularly make the whole thing feel less like a crisis and more like being cared for.
The paperwork that makes their answers count
My dad had his paperwork in order, and after he died we updated my mom's. I still sat down with her to make sure it was what she wanted. Not every family has that. Their wishes only help if the right people can act on them. Five documents do that. The first two matter most while your parent is alive.
Where to get the forms. CaringInfo, a program of the nonprofit National Alliance for Care at Home, has free advance directive forms for every state. Each state has its own rules for witnesses and notarization, so read the instructions for yours.
When to get a lawyer. Many families do the health care forms themselves. If your parent owns a home, has significant savings, or may need Medicaid to pay for long-term care, it's worth talking to an elder law attorney, especially for the financial power of attorney and the will.
After it's signed. Give a copy of the health care proxy to their doctor, keep one where you can find it fast, and save a photo on your phone. Put where everything lives in The Parent File. And if you're the power of attorney, take it to each of their banks now. Every bank has its own process, some want their own forms, and it's slower than you'd think.
Keep it going
This isn't a one-time talk. What they want can change after a hospital stay, a new diagnosis, or losing someone close. Check in once a year, even when nothing has changed, and update the paperwork if their answers do. Update it right away after losing a spouse. If the health care proxy or power of attorney named your other parent, it needs a new name.
And be ready for answers you don't love. Your job here is to understand what they want, not to talk them into what you'd choose.
Get The Parent File
It has a page for exactly this: their wishes, in their words. Free, plus one email a week with one thing to handle.
Parent Mode is general information, not legal, medical, or financial advice. Rules vary by state, so confirm with your state or an attorney.
Where this comes from+
- Penn Medicine study in Health Affairs, 2017 (via ScienceDaily)
- University of Michigan National Poll on Healthy Aging: Advance care planning, 2020
- Alzheimer's Association: Legal documents
- Medicare.gov: Advance care planning
- The Conversation Project: Get started
- National Cancer Institute: Advance directives
- ABA Commission on Law and Aging: Default surrogate laws
- HHS: HIPAA and family members
- CaringInfo: Advance directives by state