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I'm Valarie. I'm 44, I supervise the medical records department at a hospital in Columbus, I'm married to Barry, and our daughter Meagan is fifteen and knows everything. That's the home front.

The other front is my mother. Priscilla is 79, a widow since 1993, and she lives by herself in the house my daddy built in a little town in southern West Virginia. I won't name the town, because everybody in it would know exactly who I mean, and Mom would never speak to me again. She has congestive heart failure and diabetes. She will not leave that house. We'll get to that.

My brother Randy lives outside Houston. He sends checks and calls Mom every Sunday after church. He is a good brother. He is a good brother from twelve hundred miles away. We'll get to that too.

So since the spring of 1997, every other Friday, I leave work at 3:30, point the car south, and drive three hours to Mom's. Sunday afternoon I drive three hours back. This page is everything I've learned doing it, for anybody else with a parent at the far end of a long road.

US 33 southeast out of Columbus, past Lancaster and around Athens, across the Ohio River into West Virginia, and down to I-77. Then 77 south through Charleston and onto the turnpike, with my toll money in the cup holder. Three hours if nobody's doing anything foolish. Three and a half if they are. Four and a half the night it sleeted.

I have the road memorized. I know which gas station has the clean restroom and which one has the good coffee (they are not the same station). I get books on tape from the library every other Thursday. I have listened to more mysteries than any woman in Franklin County.

I'll be honest. Some Fridays the drive is the only two hours of the week when nobody needs anything from me, and I like it. Some Fridays I cry from Lancaster to the river. Both are normal. I asked.

• Time. Every other weekend, plus the emergencies. I've used most of my vacation days on Mom for two years. When she was in the hospital in March, I took a week off under the Family and Medical Leave Act. That's a federal law from 1993. If you work for a big enough employer, it lets you take unpaid leave to care for a seriously ill parent without losing your job. Ask your personnel office about it before you need it.
• Money. Gas, tolls, long-distance phone bills, and the things Medicare doesn't pay for (more on that below). Keep receipts. Ask a tax preparer what you can count.
• A system. You cannot keep it all in your head from two hundred and thirty miles away. Mom has a notebook on her kitchen table that has everything in it, and I have a copy. Here's what's in it, as a checklist you can print.
• Eyes on the ground. You can't be there. So you need people who are. That's the next section, and it's the most important one on this page.
• A sense of humor. Mom told her cardiologist last month that her daughter "drives down from Ohio to boss me around." He laughed. I laughed. She did not think it was funny. She meant it.

Start with the Eldercare Locator. It's a national toll-free service run for the government, and it's the best phone call I ever made. You tell them where your parent lives, and they tell you who to call there. I called from my desk in Columbus on my lunch hour, and ten minutes later I had the number of the Area Agency on Aging for Mom's county. Ask at any senior center or library for the number.

The Area Agency on Aging. Every part of the country has one. They know what's available locally and how to get it: meals, help at home, rides to the doctor, senior centers, and sometimes help paying for things. The lady there walked me through all of it on the phone, twice, because I wrote the first set of notes on a napkin and lost it.

Meals on Wheels. A hot lunch at Mom's door five days a week. The food is fine. The real value is that somebody lays eyes on her every weekday. Her driver is a retired schoolteacher named Bernard who has been known to stay for a cup of coffee, and who called me in July when Mom didn't answer the door. (She was out back in the garden with her hearing aid turned off. Bernard and I have both forgiven her.)

A medical alarm button. A little button on a cord around her neck. If she falls or feels bad, she pushes it, and the company calls her on a speaker, and if she doesn't answer, they call the neighbor and the ambulance. It's a monthly fee. It is worth every penny. She calls it "the dog tag." She wears it. Mostly. I have found it in the sugar bowl.

A neighbor with a key. Leona Kays has lived next door since 1961. She has a key to Mom's back door, and they have a system: if Mom's kitchen curtain isn't open by nine in the morning, Leona calls, and if Mom doesn't answer, Leona goes over. I send Leona flowers on her birthday and a ham at Christmas, and it isn't nearly enough.

Church friends. Marguerite, Shirley and Billie, otherwise known as the Committee. They take Mom to church on Sundays, bring casseroles she shouldn't have so much salt in, and report to me by phone. Billie is 79 too and still drives. Pray for the town.

A geriatric care manager. This was my best discovery of 1999. A care manager is a professional, usually a nurse or a social worker, who knows the services in the area and can check on your parent, set things up, and call you. Mrs. Kinser is a retired nurse who visits Mom on the weekends I'm not there and calls me afterward. Medicare doesn't pay for this. Randy's checks do, and that's how I finally got my brother to be part of the team: I gave him a specific job. (See "You," below.)

Home health care. After Mom's hospital stay in March, a home health nurse came to the house for several weeks to check her heart and her medicines. Medicare paid for that, because she needed skilled nursing care and couldn't easily leave the house. When she got better, it stopped. The doctor has to order it, so ask before your parent leaves the hospital.

I work in medical records. I have watched families stand at a hospital desk at three in the morning without one of these papers, and I promised myself it would never be us. Get them done while your parent is well enough to decide. A lawyer who works with older people can help, and so can the hospital social worker.

• A health care power of attorney. It names someone to make medical decisions if your parent can't. For Mom, that's me, and Randy is the backup.
• A living will. It says what kind of treatment your parent would and wouldn't want at the end of life. Mom's says what she wants, and she and I have talked it through, out loud, at her kitchen table. That was a hard Saturday. I'm glad we had it.
• A list of all her medicines, with the doses and the times, kept up to date. One copy on her refrigerator, one in her notebook, one in my purse.
• A financial power of attorney, so someone can pay bills and talk to the bank if she can't.
• Copies of her insurance cards, front and back.
• Where everything is: the will, the deed, the bank accounts, the safe deposit key, the cemetery plot (next to Daddy). Not the papers themselves, just where they are.

All of it is on the notebook checklist.

This surprises almost everybody, so I'll put it in plain words. This is the general picture. The rules have details, so call Medicare or a counselor at the Area Agency on Aging about your own parent.

Medicare generally pays for: hospital stays, doctor visits, tests, a limited stay in a nursing facility for rehab after a hospital stay, home health care when the person needs skilled care and is homebound, and hospice.

Medicare does NOT pay for:

• Long-term custodial care. That's help with everyday living: bathing, dressing, cooking, getting around, someone to stay with her. At home or in a nursing home, Medicare doesn't pay for it. This is the big one. This is what most of us end up needing.
• Most prescription medicines that you take at home. Mom's pills cost her more every month than her electric bill. She has a supplemental policy that helps some.
• Routine eye exams, glasses, hearing aids, and most dental care.

Medicaid can pay for nursing home care, but only after most of a person's own money is gone, and the rules are complicated. If that day might come, talk to an elder law attorney early. Don't move money around on your own.

Everyone asks why I don't just move her up to Columbus. Here is the honest answer: I've tried. Three times.

Try one, 1997: "Mom, come live with us." Her answer: "I'm not dying in Ohio." End of discussion.

Try two, 1998: A very nice assisted living place ten minutes from my house. I brought the brochure. She read the whole thing, folded it in half, and used it to level the kitchen table.

Try three, May 1999: A senior apartment in her own town, on one floor, with a call button and a dining room. Closer to her friends than she is now. I thought for sure. She said, "Your daddy built the back porch on this house with his own hands. I'll leave it when they carry me out." I drove home in silence all the way to Charleston, and then I cried until Athens.

Here's where we've landed for now. It's her life and her house, and she's a grown woman with a sound mind. What I've learned from the care manager and from my own heart is that I can't make her move, and pushing just makes her dig in. So we've made an agreement instead, written in her notebook in her own handwriting: If I fall again, or if I can't do the stairs, we will talk about it again, and I will listen. That's not a yes. But it's a door.

And in September, she agreed to let an aide come in two mornings a week to help with her bath. That was a bigger step for my mother than any apartment.

The guilt. When I'm at Mom's, I feel guilty that I'm not home with Barry and Meagan. When I'm home, I feel guilty that I'm not at Mom's. When I'm at work, I feel guilty about both. A woman in my caregivers' group at the hospital calls it "the triple shift." Here's what I've decided: guilt is just love with nowhere to go. I acknowledge it, and then I make the drive or I don't, and either way I let it ride in the back seat instead of driving.

Sibling politics. For two years I was furious with Randy. I did the driving, the doctors, the insurance calls, the pill organizer, and he did a phone call on Sunday and a check. Then the care manager asked me a good question: "Have you asked him for anything specific?" I hadn't. I'd just been mad. So I asked. Now Randy handles all of Mom's insurance and Medicare paperwork by phone from Texas, pays the care manager, and calls the pharmacy. He's good at it. Better than me. Give your brother a job. A specific one.

Skip a weekend sometimes. Twice this year I didn't go, once because of snow and once on purpose. Mom was fine. Leona and Mrs. Kinser had it covered. The world did not end, and I got to see Meagan's band play at the football game.

Your own doctor. Go. Get your checkups. I'm no good to my mother if I'm sick.

Your marriage. Barry has driven down with me, mowed Mom's grass, fixed her porch rail, and eaten more of her pinto beans than any Ohio man should. Thank your spouse. Out loud. Often.

Another caregiver's page I'd recommend: Glen Teigen's Taking Care of Mom. He's a rural mail carrier in Nebraska, and his mother, who has Alzheimer's disease, lives with him and his wife. Our situations are different. The heart of it is the same.

If you're making a long drive of your own, write me. I'll trade you road tips for caregiving tips any day.

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Mom's Notebook (printable checklist) · My 1999 Road Log

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Fellow travelers since January 1999:


Last updated Thursday, September 23, 1999. Next trip: Friday, October 1.
I work in medical records, not medicine or law. Ask the professionals about your own family.