Stop 01 of 08
You are a long-distance caregiver if you are more than an hour away. The NIA's starter list, annotated for St. Louis.
You wanted a long distance caregiving checklist because the job has been happening to you without a shape. Here is the one the National Institute on Aging publishes, walked line by line, with a St. Louis phone number or a public page next to each task so that every item can be done from a kitchen table in Denver or Dallas or D.C.
Start with the definition, because it settles an argument you may be having with yourself: the NIA says that if you live an hour or more away from a person who needs care, you are a long-distance caregiver. Not "helping out." A caregiver, with a job description. The same page says the care can take many forms, from helping with money management and arranging in-home care to providing respite for a primary caregiver and planning for emergencies. That is the checklist. Everything below is one of those lines with a local address on it.
The seven tasks the NIA says you can do from a distance
On What Is Long-Distance Caregiving?, the NIA lists what a caregiver may take on without being nearby. The list is theirs; the notes are ours, and each names the St. Louis door to knock on.
- Assist with finances, money management, insurance claims, or paying bills. This is the task that travels best, because a bill does not care what state it is paid from. If you are going to touch her money, do it with paper behind you. The Consumer Financial Protection Bureau publishes free guides for people managing money for a loved one, written for four roles: an agent under a power of attorney, a court-appointed guardian, a trustee, and a government-appointed fiduciary for Social Security or VA benefits. Read the one that matches the paper you hold. Stop 08 is the folder that paper lives in.
- Arrange for care management or in-home care by hiring formal caregivers. Missouri's own health department describes three types of care in the home: home health, which is skilled, part-time and mostly paid by Medicare; in-home care under Medicaid, requested through the state call center; and private duty or private pay, which covers aide personal care, respite and companion care, needs no physician order, and for which Missouri issues no license. The third kind is the one you can set up from another state with a phone call. The paid placement on this site, New Plan Care, is that kind of company, in Chesterfield, and it will talk to a daughter in another time zone. Call (314) 405-0887, or read what it does first.
- Order medical equipment, medicines, and other supplies the person needs. You have the credit card and the browser. Her doctor and pharmacist have the list. Do not write it yourself. If something on it is durable medical equipment, Medicare's page explains that after the Part B deductible you pay 20% of the Medicare-approved amount for equipment that is durable, used for a medical reason, used in the home and expected to last at least three years. Ask the doctor's office which supplier they use.
- Serve as an information coordinator. The NIA's phrase for the sibling who knows which doctor said what and when the next appointment is. From far away this means a shared document, not your memory. The NIA suggests you create a list of important phone numbers and email addresses, keep it in a shared document or spreadsheet online, and update it regularly, and set up a shared calendar so everyone helping can see the same week.
- Help with advance care planning, such as choosing a health care proxy and preparing a living will. In Missouri the document that names the proxy is the durable power of attorney for health care, and The Missouri Bar says you do not need a lawyer to complete its free form, though you may want one if the form does not fit. The reason to do it now rather than later is a number the NIA reports: in one study, people guessed nearly one out of three end-of-life decisions for their loved one incorrectly. Ask her. Write it down.
- Help find, organize, and update important paperwork and records. The NIA's Getting Your Affairs in Order checklist says to put important papers and copies of legal documents in one place, whether a file, a drawer or a notebook that lists where everything is, and to tell someone you trust where to find them. You are the someone. Stop 08 walks the list.
- Research long-term care options. This is Stop 06, the move-her-or-bring-help decision. Know one fact before you open a brochure: Medicare does not pay for long-term care, and you pay all costs for non-covered services, including most long-term care. Medicaid may, if she meets Missouri's eligibility rules, and private long-term care insurance is the other route. No page on this site prints a price.
Staying connected when you cannot be in the room
The NIA's second list is about staying in touch, and it is more practical than it sounds. The same page suggests that, with permission, you attend the person's telehealth visits, which are remote appointments often done by video, and that you help the older person learn the features of their phone, such as texting and video calls. A mother who can answer a video call from the kitchen can show you the kitchen, which does more than any gadget in Stop 07.
One line on that page is easy to skip and should not be. Talking about short visits, the NIA says to try to make time for activities unrelated to being a caregiver, such as watching a movie, playing a game, enjoying music, or taking a drive. If every visit is an audit, she will hide things from the auditor. Stop 03 is built on that sentence.
Supporting the person who is there every day
If a sibling, a neighbor or her sister is the one physically present, the checklist has a section for you too. The NIA says that if you are not the primary caregiver you can still ask what you can do that would be most helpful, stay in regular contact by phone or email, travel to stay with the older person for a few days so the primary caregiver can have time off, and arrange for regular respite care in the form of a volunteer, an in-home aide or an adult day program. The NIA defines respite care as short-term relief for primary caregivers that may last from a few hours to several weeks, at home, in a facility or at an adult day center.
The one thing the far-away sibling can always pay for is someone else's afternoon off. If you cannot be the relief, you can arrange it. That is a different job, not a smaller one.
Where the checklist starts if you do not know where to start
Every long-distance page the NIA publishes ends with the same phone number, and so does this one. The Eldercare Locator, 1-800-677-1116, is a public service of the Administration for Community Living that connects you to services for older adults and their families. Give them her ZIP, not yours. For St. Louis County the answer will be Aging Ahead; inside the city limits, the St. Louis Area Agency on Aging. Both are on the home page with the rest of the fridge-door list.
What to do tonight
- Open a shared document titled with her name. Put the Eldercare Locator number at the top.
- Add the seven tasks above as seven headings. Under each, write who is doing it now. Blank is an answer.
- Text one sibling the link. Do not ask for anything yet; let them see the shape.
- If you cannot reach her at all and you are afraid she is hurt, stop reading and call 911 for her address.
When to ask the care team or the doctor
Nothing on this checklist tells you what is wrong with your mother. Item three is the closest it gets, and even there the list of what to order belongs to her doctor and her pharmacist. If the reason you searched for this page is a change you noticed, a fall, weight that has dropped, confusion on the phone, a bruise she cannot explain, the NIA's own guidance is that significant memory problems, changes in thinking ability or personality, or poor decision-making could indicate a serious condition that requires medical attention. Offer to make the appointment. Ask, with her permission, to be on the call. Then let the clinician do the clinical part.
The line about guilt
The checklist does not have a line for the feeling that you should be there, so here it is. A daughter who is doing four of the seven tasks from another state is doing the job the NIA describes. Distance is a fact about geography, not about love, and the monthly flight does not have to be the whole plan. If it has already stopped being sustainable, if the thing breaking is you, the sister desk Burned Out Daughter is written for exactly that, and it is where we send people who have been the one for too long.