Long-Distance Caregiving: Rough Road for Rural Families
The National Institute on Aging considers anyone who lives an hour or more away from a person who needs care a “long-distance caregiver.” In rural areas, distance affects both caregivers and those who need their help.
Remember the 1999 movie The Straight Story? It’s about an Iowa man who made a 6-week trip on a lawnmower to see his ailing brother in Wisconsin. Not many of us have to go to such lengths to be with family members who need our care and company. But sometimes it feels like it.
There are more than 3 million long-distance caregivers in the U.S. This winter, I became one of them. For many of those on both sides of the care equation, one of the hardest problems to solve is transportation.
Driving, Dementia & Dice
My parents moved from rural Indiana to urban southwest Florida when my dad retired. By that time, they had had their fill of 45-minute trips on two-lane roads to an increasing number of doctor appointments. They wanted to live somewhere warm and somewhere with services nearby.
Back then, my mom told all her friends, “If you ever hear I’ve moved to Wisconsin, you’ll know I’ve lost my mind.” In the ultimate irony, she now has dementia. In many ways it would be a lot easier to move her closer to where I live. But a suitable memory care facility near me would have me driving more than an hour each way to see her. And in my home, I can’t provide the scope of activities she gets now to keep her mentally and socially engaged.
Social isolation is a common problem among the rural elderly, who may see no one but the mail carrier some days — and that’s only if the Post Office is asked to classify the individual as a hardship case so mail is brought closer to the door. Out here where you don’t find much in the way of sidewalks or public transportation, social isolation is a tough problem for long-distance caregivers to fix.
Years ago we had an elderly neighbor whose poor eyesight forced his nephew, who lives almost an hour away, to disable his uncle’s car. When the car didn’t work, the uncle started driving his tractor past our place on the way to the tavern up the road. In Wisconsin, and especially for that generation, the tavern is a social gathering place.
One day a semi driver making a delivery at our place asked if we knew the guy on the tractor — who had just pulled out of the bar right in front of that truck. The driver’s training was “never swerve,” particularly on a curve like the one by that tavern. He swerved anyway that day, to avoid rear-ending the tractor. But the driver told us in no uncertain terms to do what we could to get our neighbor off the road. We called friends who called our neighbor’s nephew and he took the tractor away. And I’m ashamed to say, we never once thought to call and offer our neighbor a ride to the tavern just to hang out, play dice, and listen to some nonsense.
Until December, my parents lived in their own home in a populated area where they knew many Hoosier snowbirds and had made many friends. But Mom’s dementia and aphasia made her behavior more unpredictable and her speech difficult to understand. So while my dad could still drive, my sister and I saw our parents becoming almost as socially isolated as if they were still living on the farm. Moving into assisted living came with many benefits, not least of which was having more people to talk to.
Now that Mom has moved into a memory care unit, she has a new social circle. Those people probably won’t remember if Mom repeats herself or care if she replaces most of her nouns with “the deal” or “the whatever.” I’m relieved when she cuts me off on the phone so she can get to Bingo. It probably wouldn’t be much different if she lived nearby, because she truly does not understand the distance between Florida and Wisconsin.
Star Trek, Sisters & Services
There are times I wish for a Star Trek-style transporter so I could just beam down to help Mom wash her hair (although I can’t set the rollers to suit her). Until we get the physics of that worked out, I fly. A trip to the airport begins with an hour on two-lane roads to reach the interstate. That hour stretches in winter, so I leave home much earlier if it’s snowing (and it always is). And I never know if, when I reach the airport, the flight will be canceled or delayed because of weather, or if I’ll miss my connecting flight. If I don’t leave that early, I risk missing the flight if it’s on time. But I can’t complain (much), because my sister has a much longer journey. She lives in a rural area overseas. In December, after she came back to help move our folks and empty the house, she and her husband traveled 39 hours to get home.
And still, many rural caregivers have even longer journeys. The adult children of aging parents live an average of 480 miles away. You go anyway, because family is counting on you. But it’s often hard both mentally and physically, or at least it is at my age. It’s expensive, whether you fly or drive. And for many of us, it means taking time off work.
I’m self-employed with a husband who understands, because we’ve been down this road before with his parents. My in-laws moved up north to live near us (only 25 miles away) when Bill’s stepfather retired. When he got sick, we made the two-hour round trip to the hospital and later the rehab center frequently. Then his kidneys shut down. At that time, the only option we had for dialysis was a 6 p.m. time slot for a three to four hour treatment. Bill’s mom could no longer drive at night, and with winter coming on we were concerned about driving on country roads late at night in bad weather.
So we moved Bill’s parents back downstate. They lived with Bill’s sister until we could find an apartment, pack up their home here and get their things moved. Bill’s sister and her husband handled the lion’s share of caregiver activities, putting on many miles between their small-town home and the city. My husband made the four-hour trip down for scheduled things like doctor appointments so his sister could save her vacation days for emergencies.
We always appreciated all Bill’s sister did for their parents — not just dialysis and emergency rooms, but showing up every week to take Bill’s mom for groceries and a jaunt through Wal-Mart. For families who don’t have someone near enough to do that, there are other services.
A friend and her sister each live about two hours away from their aging parents, who are still in their own home. The sisters hired someone to help — at first to provide transportation to appointments and grocery shopping, and eventually to check in three times daily and perform other services. I met that person at a social event in 2011, shortly after she launched her business, and asked how she got started. Her answer: By taking care of family members. You learn skills, that’s for sure. That was my first encounter with non-medical senior home care providers, which is a growing business sector.
My own sister suggested we find a geriatric care manager. She had worked with these professionals before she retired as a judicial case manager in family court. She included my parents and me in the hiring decision, but the care manager works for my sister. That way, my mom can’t fire her (dementia, remember?). Ours is a registered nurse with extensive experience in geriatric and long-term care. When our folks were still in their own home, this is who we called to join Dad in the waiting room on Mom’s frequent visits to the emergency room. This is who we called to be a surrogate daughter when Mom was hospitalized with diverticulitis. This is who we called to help choose an assisted living facility, and I believe she negotiated a better price than we would have gotten on our own. This is who fights fires until my sister or I can get to the airport, get on a plane, and get to Florida.
Long Distance Operators
When I can’t be with them in person, I talk with my parents on the phone at least daily. I set the alarm on my cell phone to remind me to call Mom at a time that’s best for her. My sister works around the time difference to call. In many ways, this is not much different than how my parents kept in touch with their aging parents, who lived at opposite ends of the state. Only my grandma always shouted into the phone, and I shout at my phone for the lack of service I get in all the dead spots in rural areas. At least I know when I drive back into range of service, I’ll be able to see if I’ve missed calls.
I may text with the geriatric care manager, but I don’t ask my 83-year-old dad to text on his flip phone. Instead, we use email. A lot. For one thing, it’s searchable: When I couldn’t remember the date of Mom’s last fall, it only took a minute to find. I email to keep Dad and my sister informed about what I’ve done on matters regarding Mom’s care, insurance, real estate, and other financial concerns. Before Mom moved into memory care, Dad could send a quick heads-up via email to let us know when things were especially difficult or sometimes what not to say on the phone.
I bless my dad for deciding he could and would learn to use a tablet. This is a man who, until three years ago, had never used a computer for anything but to play Freecell. Once he decided he would like to Skype with my sister overseas, he set his mind to the task. He has learned to do email (although we avoid nested threads, which still stump him sometimes). He can open PDFs to review billing statements, post his doctor appointments on our Google family calendar, check his bank account, and take pictures to send us. He didn’t learn it all overnight. I made up tutorials for him and spent time with him on the phone giving instructions and troubleshooting. And he worked at it.
Last week when I needed front-and-back copies of Mom’s Medicare card for a new pharmacy provider, Dad took pictures, attached them to an email, and sent them to me so I could attach them to a filled-out PDF service agreement form. It was done in less time than it would have taken me to drive to town and back if my folks lived where Bill’s folks used to. It was done in less time and with less stress than if my dad had to drive to a Post Office to Express Mail copies of that card.
For now, my dad is still able to drive himself to Walgreens to pick up his own prescriptions. When he can’t any more, I can easily arrange to have them delivered by mail. When he can no longer get to Wal-Mart for other supplies, I’ll have them shipped from Amazon. I’m sure many long-distance caregivers do exactly that. For rural caregivers, that would save a lot of miles.
One area where I’ve found no satisfactory digital substitute for transportation is related to Mom’s dementia. Mom is still adjusting to new surroundings and circumstances. I couldn’t hold back my own tears one day while talking with one of her nurses, who said to me, “Hon, you need to get into a dementia support group.” And I’m sure that’s good advice. It might be easier to find one if I didn’t live in a rural area. I did find one that meets monthly that’s only a two-hour round trip from where I live, but so far nothing closer. I tried an online group, but it made me even sadder. So that two-hour drive every month is starting to look good — at least until winter comes again.
In the meantime, Bill and I have had lots of conversations about what happens when it’s our turn to face the transportation challenges that come with aging in rural America. We don’t have children to come to our aid, or the financial resources to hire many services. So we know we should be proactive in making choices and plans for our future.
Right now my greatest fear isn’t being unable to drive. It’s that when the road gets rough (what if I get dementia like my mother?), and we’re so tired, so stressed we can’t see alternatives, we’ll keep driving anyway. Because the common default setting for many in elders is just to get behind the wheel and go.
Donna Kallner is a fiber artist from rural northern Wisconsin. Frequent flights to care for aging parents means she now qualifies for the priority line at TSA checkpoints.