My 98-year-old mother with dementia need

Here's the honest picture first: the pacemaker decision is a clinical decision — but 80% of making it well happens at home, tonight, on paper. What you've already done (writing down her past wishes) is the right work; what's missing is turning those wishes into questions the cardiologist can answer in numbers, and deciding *who* talks so you're not alone in the room.

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1. What you've tried vs. the better alternative

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2. Tonight / today — blocks under 25 minutes

Block A · 15 min — "Her words" sheet. One page. Columns: *what she said (in her words)* · *when (approximate is fine)* · *who heard it* · *how sure am I (certain / probably / I think)*. Include what she said about hospitals, tubes, operations, being a burden, and about her heart. No interpretation column — the clinician helps you apply it.

Block B · 15 min — device + records sweep. Find the pacemaker card/wallet card, the last clinic letter, her medicine list (all bags, including anything bought without a prescription). Note: device type, implant year, last check, and whether anyone ever told you "battery is getting low." Write down questions you can't answer — that list *is* your agenda.

Block C · 15 min — the 7-day log starts. Columns: *date · fell or near-fainted? (Y/N + what happened) · dizzy on standing? · breathless? · chest discomfort? · eating/drinking and urine (as usual or less)? · more confused or calmer than usual? · any new medicine started/stopped?* Facts only, no labels. If she has a home device that displays a heart rate, note the number and the time; don't interpret it.

Block D · 20 min — align with the sibling/other elder. Use the sheet from Block A, and put one question on the table: *"If she can't decide, who do we want to be named as the person who decides with the clinic?"* Bring the sheet; don't bring a verdict. If you can't reach them before the appointment, send Block A as a photo and one line: *"Can you look at this before Sunday so we're not improvising in the room?"*

Block E · 20 min — rehearse the 5 questions out loud. Say them to a mirror, a wall, or the dog. Out loud beats written, especially on a tired day.

Block F · 10 min — pack the bag. Wish sheet · device card & letters · medicine list (in the original containers) · log page · glasses/hearing aids · one adult for the trip and one for the notes.

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3. The 5 questions (screenshot this)

1. "Where is her battery right now, and how much time do we have on this specific device and these settings?" (Ask what ERI/EOL means for her device: how long the battery still works after the alert, and what the clinic considers "not safe to wait.")
2. "Does her own heart rhythm depend on the pacemaker? If the battery ran down, what would happen — and would she show symptoms we could see at home?" (This single answer splits "urgent" from "planned.")
3. "What was the pacemaker treating, and what would we expect to gain if we replace it — for her, specifically, not in general?" (And: *"Would it change her memory or her dementia?"* Expect an honest no. That's information, not bad news.)
4. "What does the procedure involve for a 98-year-old with dementia — fasting, sedation, length of stay, arm restrictions, wound care — and what are the realistic burdens? What would recovery look like in her case?" (In frail older adults, post-procedure delirium and a longer hospital stay are common; infection and pocket bleeding are recognised complications; the operation itself is usually short and done under local anaesthetic with optional sedation. Your clinician should weigh this for *her*.)
5. "If we chose not to replace it, what would we be watching for, what would you do about it, and what would that look like day to day?" (Plus: *"Does she need to be able to understand this decision herself, and who is legally recognised to decide with you if she can't?"* Ask what documentation the clinic wants — her signed wishes, a health-care proxy, or a goals-of-care note in their chart.)

Two add-ons worth saying out loud: *"Please write the plan and the timeline in the chart so the next person we see knows it."* And: *"Is there a palliative-care or goals-of-care service at your clinic we can involve?"*

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4. Decision tree (use it *after* the cardiologist answers)

```
START
│
├─ Q2 answer: pace-dependent, OR she's had syncope/dizziness/falls since the battery alert?
│ └─ YES → This is a TIMING decision, not an "if".
│ Ask for the earliest safe date, what to watch for at home,
│ and exactly what to do if she collapses before then.
│
├─ NO pace-dependence AND Q1 says battery still has a comfortable window
│ └─ → PLANNED path. Use the weeks to:
│ · finish the wishes sheet with the other adult
│ · ask Q3 + Q4 + Q5 and get the answers in writing
│ · ask "what would change your recommendation?"
│
└─ NO pace-dependence AND battery is near the end
└─ → Put three options on paper, in her name:
A) Replace on a planned date
B) Defer to a defined date with a written symptom-watch plan
C) Comfort-focused plan, with what to do if symptoms appear
For each, ask: "What would we see if this worked? What would we see
if it didn't? What would we do next?"
Then check against her words: does this option match what she said
she wanted? Say the mismatch out loud to the clinic.
If the family can't agree → ask for a goals-of-care/palliative
consult and ask that the decision be documented in her chart.
```

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5. Constraints and the avoid list

Rules for the next week (these come from her own file's home rules and from good practice):

• No medicine started, stopped, or changed at home — including "just for the heart." If a dose is missed or doubled, that's a call to the prescriber or pharmacist, not a home fix.
• No powders, "heart health" supplements, herbal products, or anything bought online without a prescription.
• Don't repeat memory testing at home to see if she's "better."
• Don't say a label out loud to her or to others ("she has dementia," "her battery is dying").
• No one untrained handles the device; no magnets, no electrical stimulation or physiotherapy on that shoulder without telling the pacemaker clinic; no physiotherapy on the implanted arm without asking.

Communication avoid list:

• Don't decide alone, and don't treat family agreement as her consent.
• Don't lead with "she's 98, so..." — lead with *her* goals and let the clinician weigh age and frailty.
• Don't argue with her if she can still take part. One simple question, accept the answer, don't correct it, don't push a second time. (Her capacity for *this* decision is its own question — ask the clinic; dementia alone doesn't settle it.)
• Don't use the sibling as the messenger *to* the clinician; the adult in that line speaks directly.
• Don't let "quality of life" become a ranking you perform on her. Use what she actually said.
• Don't accept "we should just replace it" without asking: *"What benefit do you expect for her specifically, and what would we see if we didn't?"*

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6. Red flags — stop deciding at home, get clinical help

Call your local emergency number now (I don't have your location in this chat — tell me your city/country and I'll pull the exact number, and also the department door): collapse or near-collapse with loss of consciousness; new chest pressure; severe breathlessness at rest; a fall with a head knock or inability to get up; confusion with fever, or suddenly much harder to wake.

Same-day contact with the cardiology clinic or a doctor (not "next visit"): a device battery/alert notice, or the device beeping, or a sudden change in her pulse that comes with symptoms; repeated fainting or near-fainting; new falls; new swelling in one arm or leg; new chest discomfort with exertion; a hole, redness, warmth or discharge at the pacemaker site; new confusion over hours or days, unusual sleepiness, stopping eating or drinking, or passing very little urine; any medicine started or stopped in the last month.

Post-procedure, if she has the replacement done: fever; spreading redness, warmth, swelling, pus or an open wound at the site; bleeding or a bruise that keeps growing; new chest pain, breathlessness or dizziness after the procedure; arm or shoulder pain that isn't settling; she isn't back to her usual self within a few days.

A note on the other elder / the school week: the red flags above are the reason to have a named second adult on call — the sibling nearby, or the other elder who can be with her while you're at school pickup. If it's a real conflict, tell the clinic; some clinics will do the procedure planning around one caregiver's availability, and it changes the "who stays with her after" question.

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7. What "success" looks like in 24 hours

Not "we decided about the pacemaker." That decision belongs to her and the clinician. Success in 24 hours is:

• The one-page *her words* sheet exists, with quotes and who heard them.
• The device facts are on paper (or the list of what nobody knows is written down).
• The 7-day log has its first row filled.
• One other adult has read the sheet, and you have agreed who speaks at the visit.
• The 5 questions are written down and rehearsed out loud once.
• The bag is packed, and the calendar shows the appointment.

Nothing in this guarantees a particular outcome for her heart — but it guarantees that the outcome will be *her* outcome, decided with information instead of alone at midnight.

If you want, tell me your city/country (for the emergency number and the right clinic door) and I can also draft a one-page "her words" template to fill in tonight — in English, Spanish, or whichever language she thinks in.