Hard Decisions

Driving. Moving. Medical lines. The end. Nobody feels ready for these, but there is a compass that works for all of them, and it isn't "what do I want."

The compass: substituted judgment

The question is never "what do I want for them?" That road runs through guilt and ends in paralysis. The question is "what would they have chosen, back when they could choose?" Use their own words if you have them (this is why Chapter 8 begs you to have the conversations early). Use their lifetime of values if you don't: what did they say about their own parents' last years? What did they call "no way to live"? You're not deciding for them; you're delivering a decision they already made with their life.

Driving

The first hard decision for most families, and the one with other people's lives in it. The driving card has the day-to-day script (outsource the "no" to the doctor; remove the need before the keys), and the car page has the full playbook: warning signs, decoy keys, the safety ladder, the DMV route, and replacing the rides. The decision rule: one genuinely unsafe event (lost on a known route, pedals confused, a scrape they can't explain) outweighs a hundred smooth trips to church. If your stomach tightens when they pull out of the driveway, your stomach has already decided; catch your policy up to it.

Moving: the guiltiest decision

Chapter 6 covers when; here is the how to live with it. Three true things: a promise made years ago ("never a home") was made to a different situation by people who didn't have this information. Updating it is stewardship, not betrayal. The disease made the move necessary; you're just the one signing the form the disease wrote. And presence is portable: the love continues at the new address, usually with more of you available for it.

Medical lines in late stage

Decide these in daylight, before the 2am phone call asks:

• Hospitalizations: for a person with late-stage dementia, hospitals are disorienting, delirium-inducing places. For each crisis, the honest question becomes: will this treatment give them more good time, or just more time in a bed, frightened? "Treat what's comfortable to treat, where they live" is a legitimate, loving policy.
• Feeding tubes: when swallowing fails at the end of the disease, the medical consensus is quietly firm. Tube feeding in advanced dementia generally doesn't lengthen life or prevent aspiration, but it does take away the taste of food and the ritual of being fed by a loving hand. Careful hand-feeding for comfort ("comfort feeding") is the alternative most clinicians recommend and most people would choose for themselves.
• CPR and directives: make sure the paper (POLST/DNR, per their wishes) exists and travels with them. The default without paper is maximum intervention, regardless of what they'd have wanted.

Hospice is not giving up

Palliative care can run alongside treatment at any stage; hospice enters when comfort becomes the goal. Families' most common sentence afterward: "we wish we'd called them sooner." Hospice brings nurses, equipment, respite, and someone to call at 3am (for months, not days, if you let it). Late-stage dementia qualifies; ask early, requalify as needed.

When the family fights

Distance breeds optimism; proximity breeds exhaustion. That's why the far sibling says "she's fine" and the near one is drowning (send them the showtiming note). For the big decisions: one family meeting, the doctor's assessment on the table, the substituted-judgment question asked out loud (what would Mom have chosen?), and the person doing the daily care gets the deciding weight. If it still deadlocks, a geriatric care manager or the doctor as referee beats a family fracture.