Dementia Takes Decisions Away One at a Time.
5 min read
The first sign is usually small. A bill that got paid twice. A pot left on the burner. A trip to the grocery store that took two hours, and nobody can say where the other ninety minutes went.
Somebody steps in. Takes over the checkbook. Hides the car keys, or has the talk about the car keys, which is worse. From then on, the decisions start moving from your person to you, one at a time.
Most families don't notice it happening. Then one day a doctor asks whether your mother would want a feeding tube, and you realize you have no idea. You've been making her decisions for three years, and you never once asked her.
Most people plan for the house and skip themselves
A 2023 study in PLOS ONE surveyed caregivers of people with dementia. Nearly every person they cared for had a will. Most had named someone to handle their money. Fewer than half had put their medical wishes in writing.
So the dining room set was taken care of. The feeding tube question wasn't.
You have time, so use it
A stroke or a heart attack comes with no warning. Dementia is slower. As hard as that is, it means your person can still talk to you. Maybe they repeat themselves or lose the thread. But on a good morning, over coffee, they can still tell you what they want.
Those mornings get fewer.
If the diagnosis is new, read The Planning Window After a Dementia Diagnosis first. It covers which documents to sign and in what order. This post is about the conversations behind those documents. A health care power of attorney tells everyone who decides. It doesn't tell that person what to decide.
What to ask
You don't need a script. You need a few good mornings and a notebook. Some questions to work in:
- What does a good day look like for you? If the answer is "sitting on the porch with the dog," that tells you more about future care than any form will.
- If living at home stops being safe, where would you want to be?
- If you couldn't eat on your own anymore, would you want a feeding tube, or would you want to be kept comfortable?
- Who do you want making calls for you? Is there anyone you don't want involved?
- What are you afraid of?
That last one is hard to ask. Ask it anyway. You'll probably hear something you didn't expect.
Write the answers down the way they said them, not cleaned up. If they're okay with it, record them on your phone. Years from now, you may need to hear it in their voice.
Keep asking
You don't do this once and file it away. In the middle stages, a lot of people can't follow a conversation about ventilators anymore. But they can still tell you they don't like the new aide, or that a certain radio station calms them down, or that they want their hair done on Fridays. That counts too. Write it down.
Look at the whole plan again every year, and any time something big happens, like a fall, a move, or a hospital stay.
For you, the one doing this
When my husband was in the hospital, a doctor asked me what he'd want. I knew, because we'd talked about it. Saying it out loud was still one of the hardest things I've ever done. I can't imagine having to guess.
So ask the questions now, while your person can still answer them.
When you're ready
I'm not an attorney, and this isn't legal advice. For financial documents and anything involving assets, work with an elder law attorney.
I help families have these conversations and get the answers written down and into the right hands. If you're ready, book a Guided Planning Session. If you're not ready to talk yet, start with the free Emergency Care Kit.
Sources
This article is educational and is not legal advice. For legal questions about your situation, talk with an Arizona attorney.
I'm Jennifer Michaels, CDP®, founder of GuideWyze. I learned most of this the hard way. Now I help families do it with a little less guesswork.
