The Family Caregiver’s Checklist: What to Do When Mom or Dad Can No Longer Manage Alone

The call that starts this is almost never about care. It is about a late notice on a bill that has been paid automatically for nine years, or a sister saying she does not think Dad has eaten a real meal since Christmas.

I have run Benefits of Home in Johnson County since 2018, and the families who come through this well are not the ones with the most money or the most free time. They are the ones who go in an order that makes sense instead of trying to fix everything on one bad Sunday. That is all this family caregiver’s checklist is: seven steps, in the order I would do them, starting with the one most families skip.

Work it, and forward it to your brother.

1. Open the Conversation Before You Have a Plan

Do not call a family meeting. A parent who walks in and finds three adult children waiting knows she has been outnumbered, and the conversation is over before it starts.

One person, one kitchen table, no agenda on paper. Ask what her goals are for living and care arrangements. Ask what she is finding harder than it used to be. Ask what she is worried about. Then be quiet long enough for her to answer, which is the hard part.

What you want is not agreement. It is one thing she will admit is a problem, because that is where help can start without a fight. Our post on discussing care with aging parents goes deeper on how to open it, and if you are still asking yourself whether it is really time, the ten warning signs families notice first will tell you more than a checklist can.

2. Go to the Next Doctor Appointment With Her

Twenty minutes with her doctor will teach you more than a month of phone calls with your siblings. Go in prepared. The National Institute on Aging advises caregivers to make a list of questions ahead of time, start with the most important ones, and take notes on what the doctor recommends. Let your mother answer her own questions unless she asks you to step in. You are there to remember, not to speak for her.

Before you leave, ask the front desk for the privacy form. Most offices call it a HIPAA release, and without one on file the nurse cannot legally tell you anything when you call on Tuesday with a question. It takes two minutes at the window and it saves months of frustration.

3. Get Every Medicine Onto One Page

Gather every bottle in the house, including the ones in the bathroom cabinet nobody has opened in a year, and write down the name, dose and schedule for each. The National Institute on Aging is specific that the list should cover all medicines, vitamins, herbal remedies, over-the-counter drugs and dietary supplements, not just the prescriptions.

Bring that page to the next appointment and ask the doctor to go down it line by line, marking which ones are still necessary. Leftovers from a hospital stay turn up more often than families expect.

If possible, have all medications filled at one pharmacy, so its system can check for interactions. Beyond the doctor, the pharmacist is an excellent source of information. Additionally, we provide a clinical service to help manage medications. Jan Swarts, our RN and Director of Nursing, sets up a pill organizer for up to two weeks at a time, reconciles the list with your parent’s own doctors, and does a wellness check at every visit. Our non-medical staff can help with medication reminders.

4. Have the Money Conversation, Even If It Goes Badly

This is the step families skip, and skipping it is what turns a manageable situation into a crisis eighteen months later.

You are not asking for a balance. You are asking four things: what money comes in each month, which bills are on autopay and which are not, whether there is a long term care insurance policy in a drawer somewhere, and who would notice if a payment stopped. Our post on talking to your aging loved ones about money is worth reading before you start, because tone decides this one.

If a long term care policy does turn up, do not try to read it alone. We help our families work through that paperwork at no cost, and a surprising number of people are paying privately for care a policy would have covered.

5. Find Out Which Documents Already Exist

Most parents have some of this done and have never mentioned it. Ask what exists and where it is kept before you spend money creating any of it.

Three documents do the work. The National Institute on Aging describes a durable power of attorney for finances as naming someone to make financial decisions when your parent cannot, a durable power of attorney for health care as naming a health care proxy to make medical decisions, and a living will as telling doctors how she wants to be treated if she cannot speak for herself.

If she has a house and savings, or more complex financial matters, we highly recommend a trust so that her beneficiaries avoid probate.

Then ask the question nobody thinks of: who has access. A power of attorney the bank has never seen does not help anyone at 2 AM in an emergency room. An elder law and estate planning attorney in Kansas handles the whole set in an afternoon.

6. Walk the House Like You Have Never Seen It

Falls are why most families call me. The Centers for Disease Control and Prevention reports that more than 14 million older adults, one in four, report falling every year, and that falls are the leading cause of injury for adults 65 and older.

Walk the route she takes from the bed to the bathroom at 2 AM, in the dark, the way she does it. That path is where this happens. Then look at the throw rug at the top of the stairs, the cord crossing the hallway, the burned out bulb over the basement steps, the towel bar she uses to pull herself out of the tub.

Most of that list is free to fix on a Saturday. The grab bar and the raised toilet seat are not free, but together they cost less than one night in a hospital.

7. Decide What Help to Bring In, and When

Now you can answer the question you started with. Write out one ordinary week as it really is, including every hour you and your siblings already cover, then mark the hours that are hard to keep covering.

That total is what decides your bill, not the hourly rate. Our rate is $34 an hour with a three hour minimum visit. That one rate covers every level of care we provide, with no weekend rate, no overnight rate and no higher rate for dementia. There is no weekly hour minimum and no long term contract, so care can go up after a hospital stay and come back down when your mother is steady again.

Our paying for in-home care page covers how families pay for it. For a real number on your own week, call us at 913-422-1591. There is no charge for that conversation, and we will even come out for a free assessment.

You Do Not Have to Finish This in One Weekend

Every family I meet wants the whole thing settled by Sunday night, and no family has ever managed it. The National Institute on Aging puts it plainly for new caregivers: tackle one task at a time.

So pick the first one. Have the conversation this week, before the doctor visit, before the documents, before you price anything. Everything else on this family caregiver’s checklist gets easier once your mother is on the inside of the decision instead of on the receiving end of it.

We have been doing this in Johnson County since 2007. When you get to step seven, we will be here.

Common Questions About the Family Caregiver’s Checklist

What should be on a family caregiver’s checklist?

Seven things, in this order: the first honest conversation with your parent, the next doctor appointment with you in the room, one page listing every medicine, the money conversation, the legal documents and who has access to them, a walk through the house looking for hazards, and a decision about what help to bring in. Working them in that order matters, because each step is easier when your parent has been part of the one before it.

How do I start the conversation with a parent who does not want help?

One person, not the whole family, and no plan on paper the first time. Ask what has gotten harder and what she is worried about, then stop talking. You are not trying to win agreement on care. You are looking for the one thing she will admit is a problem, because help that starts there feels like a favor rather than a loss of control.

What documents do I need to help manage a parent’s care?

A durable power of attorney for finances, a durable power of attorney for health care, and a living will or advance directive. Ask first whether your parent already has them, since many do and have never mentioned it. Call an elder law attorney and get it done. Then confirm that the bank and the doctor’s office have copies on file, and sign the privacy release at the doctor’s office so the staff can talk to you when you call.

How many hours of in-home care does a family usually start with?

It depends entirely on which hours are hard, which is why we ask families to write out one real week before talking about price. Our minimum is three hours per visit, not per week, so some families start with three visits a week and nothing more. There is no weekly minimum and no long term contract, so the schedule can grow after a hospital stay and shrink again when your parent is steady.

Does Benefits of Home charge more for weekends, overnights or dementia care?

No. One rate of $34 an hour covers every level of care and every service we provide. More than 80 of the people we help each week are living with dementia, and their families pay the same rate as everyone else. Our caregivers are trained in Teepa Snow’s Positive Approach to Care, where the guiding principle is that the client’s reality becomes the care reality. We also provide dementia training for families at no charge.