What happens to Mom if I get sick? The one page backup plan every solo caregiver needs on paper before she needs it

What happens to Mom if I get sick? You already know the answer, which is why you have not let yourself ask it. Nothing happens. Nobody comes. The bar above turns the colour of the hours nobody covers, and she sits in it. Solo caregivers run on a plan with one name on it, and the plan has no clause for the day that name has a fever, a broken wrist, or a hospital bed of her own. This page is that clause, on one sheet of paper.

Why does the backup plan have to be on paper?

Because knowledge that lives in one head is not a plan, it is a hostage. The National Institute on Aging lists planning for emergencies among the ordinary duties of a family caregiver, and that includes the emergency where the primary caregiver is the person who is down. The same institute cites a study in which people guessed nearly one out of three end-of-life decisions for their loved one incorrectly. If the people closest to her get a third of the big decisions wrong, imagine a neighbour with a key and no instructions at breakfast.

The five lines on the page

1. Her day, hour by hour

Not a care plan. A timetable. When she wakes, what she eats and will not eat, when the bathroom trips are, what she watches, when she gets anxious, what settles her, when she goes to bed and what happens at 3am. Write it as a briefing for a friend sitting with her for one day, because that is who will read it. Two hundred words, top half of the sheet.

2. Where the medication list lives

You are not writing medical instructions, and you must not. You are writing where the list is: the pharmacy printout on the fridge, the labelled box on the counter, the name of the pharmacy and its phone number. Whoever steps in does what you do, which is remind her that it is time for the tablets already in her own box. The Missouri health department draws the line the same way when it describes private-pay help at home as aide personal care, respite and companion care with no physician order needed, as distinct from home health, which is skilled and ordered by a doctor. If a task on your list needs a nurse, it needs the care team, not the page.

3. The numbers

Her doctor's office. The pharmacy. The person at her insurer you last spoke to. Then the doors that answer when nobody else does: United Way 211, where a trained resource specialist answers 24/7; the Eldercare Locator at 1-800-677-1116, by phone or text message; Aging Ahead's Community Options Specialists at (636) 207-0847 for a county address, or the St. Louis Area Agency on Aging at (314) 612-5918 for the city; and if she lives with a dementia diagnosis, the Alzheimer's Association 24/7 Helpline at 800.272.3900. Write them large.

4. The agency that already knows her

This is the line most solo caregivers leave blank, and the one that turns the bar back from mauve. An agency that has met your mother, has her timetable on file and has sent a caregiver at least once can send one again on a bad morning. One that has never heard of her cannot, not that day. The Family Caregiver Alliance's rule is the reason to set this up before you need it: if you need help right away, always go through an agency, as hiring privately takes time and energy to secure the right person. The way to do that is to book a small standing block now, even two hours a week, so the relationship exists. One such company in the metro is New Plan Care, a paid placement on this site, labelled as one below. Whichever company you choose goes on this line with its number and the words "already has Mom's routine."

5. The person with the key

A sibling, a neighbour, a friend from church: someone who has a key, has read this page, and has agreed out loud to be called. The Family Caregiver Alliance's page on siblings warns that discord most often surfaces from the unequal division of caregiving duties, which is the polite way of saying the brother who "would help if asked" has never been asked in writing. If the family needs a conversation to fill this line, the Alliance's guide to holding a family meeting says to include everyone who is or will be part of the caregiving team, and that if the person receiving care has dementia it may be appropriate to hold the first meeting without them present.

The two documents that let someone else act

The page above lets a person run her day. It does not let them speak to her doctor. That takes a document she signs while she is able to. The state's Durable Power of Attorney for Health Care Act is the law behind it. Missouri Legal Services explains that the most common advance directives here are a Durable Power of Attorney for Health Care, which appoints an agent to make health care decisions when you are unable to, and a Health Care Choices Directive similar to a living will. The Missouri Bar says you do not need a lawyer to complete its free Durable Power of Attorney for Health Care form, though you may want one if the form does not fit. If she has named you, name a backup agent on the same form. Whether she can still sign is a question for her doctor and, in any doubt, a lawyer.

Where does the page live?

On the fridge, in a plastic sleeve. As a photo on your phone and the key holder's phone. In the agency's file. In your glovebox, because the day it is needed may be the day you are driving yourself to urgent care. Paper first: the person who needs it may be standing in your mother's kitchen with no idea of your passcode.

Who has to have read it?

Three people, minimum: the key holder, one other family member, and the agency contact. "I sent it to him" is not read. Read means they looked at line one and asked a question. If nobody asks one, the timetable is not clear enough, and you rewrite it.

If the emergency is tonight

If it has already happened, skip the page and use the numbers. 211 is awake. Aging Ahead serves adults 60 and older in St. Louis, St. Charles, Franklin and Jefferson counties, and its caregiver specialists are the people to tell "I am her only caregiver and I am in the hospital." If the larger question underneath tonight is whether she can go on living in that house at all, our sister desk Keep Her Home is written for that question and nothing else.