Cherish the Days: Inspiration and Insight for Long-Distance Cargivers (Paperback)

Chapter One

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Distance Dilemma Coordinating care from a distance.

Caregiver Connection Family unity bridges the distance between long-distance caregivers.

"All we wanted was to do the very best for Mom and Dad," said Susan Taylor Adams, "especially for Dad, after Mom died."

Doing the right thing for their aging parents turned out to be a challenge for Susan and her brothers, Joe and Alex Taylor. Their father announced early on that he would not move from his house in Columbia, South Carolina, where he had lived most of his life. Joe lived closest, a little over an hour away in Florence, South Carolina. Alex lived in Atlanta, a drive of some three-and-a-half hours. Eleven traffic-crammed hours of interstate highway lay between Susan's work in New York City and her childhood home.

Nobody planned for Ethel Taylor to die first. Albert Taylor, who was five years older than his bride, had assumed for more than fifty years that he would leave her a widow. Until then the two of them would live, as they had for decades, in the sprawling, comfortable, white, clapboard house where they had reared three children.

Neither had anyone believed that the vigorous couple would become physically handicapped; disability was something that happened to other people. But at the age of eighty-three, Albert began to complain of pain in his legs and feet. "At first we all hoped it would go away," says Susan, "but he was diagnosed with a circulatory ailment." Albert Taylor was soon dependent upon a wheelchair. He could no longer drive, a major problem for both him and his family. Ultimately, it was necessary to amputate one of his legs.

Ethel seemed healthier but was facing age-related problems of her own. Six months after the Taylors joyously celebrated their fiftieth wedding anniversary, Susan received a cryptic phone call.

"I was at the convention in Houston," Susan recalls. She had been a delegate to her church's national conference. "I was sitting in my hotel room when the phone rang. It was one of mom's neighbors."

"Did you know that your mother is not driving very well?" the caller asked.

"Um, no ... I guess not," said Susan, her voice rising in concern.

It seems that Mrs. Taylor had left a church committee meeting and, instead of going down the driveway, had driven across the church lawn.

"I just thought you should know," the neighbor said, and hung up.

Susan paced the hotel room, filled with anxiety. Did she think she was being kind by telling me? Susan wondered, guilt and anger now mingling in her mind. What am I supposed to do from a thousand miles away?

The Distance Dilemma

Ever since our ancestors kissed their parents good-bye and rolled westward in covered wagons, Americans have gone where they've seen opportunity. When some of us accepted jobs on the other side of the continent from where our parents lived, it did not occur to us that Mom and Dad might someday need our care.

That realization comes suddenly. On the annual visit home, you notice how much Mom and Dad have changed since last year. They look so old, you think. Dad needs assistance with what were once routine tasks. The housekeeping is not up to Mom's usual standard. You spend an hour on the phone sorting out medical bills with the insurance company. You make one uncomfortable realization-Mom and Dad need my help-followed by another-We live five hundred miles apart. In that moment you enter one of the fastest-growing segments of our society, long-distance caregivers.

Whether it's across the country or just across town, distance creates a significant obstacle to caring for aging loved ones. More than seven million Americans are engaged in this worthy task, one laden with unique challenges.

Distance

Distance itself is the first problem for many caregivers. If your parents live in one place and your career has taken you to another, the miles become an obstacle to meeting your loved ones' needs. It doesn't matter whether the trip requires a transcontinental flight or merely fighting an hour of cross-town traffic; you cannot drop by after work to see how the folks are doing today.

"My parents live in Idaho," says Eleanor, "and I live in Tennessee. Sometimes when I call them, they complain over little things, and I don't know whether to be concerned or not. At other times, they say, 'Oh, we're fine,' but I hear something in their voices that makes me wonder. I want to jump on the first airplane and go."

But she can't. Long-distance caregivers must find ways to keep tabs on Mom and Dad without being physically present all the time.

Immobility

In many cases, there is no way to close the distance gap. To the uninitiated, the solution appears simple. "Just have your parents move closer to you," they blithely offer. "Or maybe you could find a job in their town." Only two things are wrong with those suggestions: most parents won't consider moving, and most children cannot move their careers back home.

The Rollins family is typical. Earnest and Genevieve Rollins, now in their late eighties, lived in several New England states as Earnest's company transferred him from one assignment to another. Since retiring in the late 1970s, they have lived in the same house in Nashua, New Hampshire. To their three children, it is clear that the day-to-day management of the household has become too much, but the Rollinses will not consider moving. "We've moved enough," Earnest puts it bluntly. "It's time for us to stay put."

In fact, there is little alternative. "They can't move by themselves," says their son Jack, "and they won't let us help them." At this stage of life, the Rollins children agree that their parents are incapable of managing the sale of their home and a cross-country move. They have waited too long.

In the meantime, the children have scattered, taking jobs where the best opportunities lay, as Americans have always done. None of the three can conveniently move back to New England to care for their aging parents.

Anxiety

Helplessness and frustration are the initial reactions to the realization that aging parents are in need of care. In shock and disbelief, we grapple with reality. As children, we took our parents for granted. Somehow, we thought they would always be able to care for themselves. But now we have reached the "wonder years."

I wonder how much longer they can live in this house.

I wonder if they will be willing to move closer to us.

I wonder if they can afford the cost of a retirement community.

I wonder if they will have to live with us.

All caregivers face these questions. For many, they are compounded by the distance that brings one more nagging thought: I wonder if I'll be there when they need me.

Family Stress

"The worst part was leaving the kids," says Susan Taylor Adams. Bona fide members of the sandwich generation, Susan Taylor Adams and her husband, Elliot, were in their late forties when Susan's father became physically incapacitated. About that same time, Susan's mother began to show symptoms of Alzheimer's disease. Susan and Elliot had three children living at home, and now aging parents were also in need of their attention. The Adams kids were good teenagers, and their parents trusted them; but the frequent trips to Columbia were hard on everyone. The children were left alone some, or they stayed with a neighbor.

"Even though our youngest could stay with friends while we were gone," Susan says, "she sometimes cried when we left." But what were the options? "Something was always going on with our parents," Susan recalls. She had little choice but to drive the eleven hours of interstate highway over and over again.

Miscommunication

The process of sharing information with and about aging parents can be like the children's game called Telephone. News is passed from one sibling to another until it becomes lost or distorted. And it's not a given that all members of an extended family will be happy to sit down together and plan for the care of aging loved ones. Sometimes a family meeting can be arranged, the problems discussed, duties divided up, and sometimes it can't. If a family has had trouble communicating in the past, the crisis of caregiving is not likely to improve the situation. Coordinating decisions among people living in different places is a challenge-even before family dynamics come into play.

The Beauty of Unity

"How good and pleasant it is when brothers live together in unity!" says Psalm 133:1. That scripture does not promise that everyone will concur on everything, but it does applaud those who agree to live and work together. The Lord must take quite seriously the matter of family unity because His word likens such accord to sacred anointing oil (Ps. 133:2). God gave to Moses the formula for compounding this holy oil, used in the consecration ceremony for priests. The Lord's instruction was to weigh definite amounts of myrrh, cinnamon, fragrant cane, and cassia, all very fragrant, and combine them in about a gallon of olive oil (see Exod. 30:22-25). The mixture was so hallowed that if it were used for anything other than the consecration of priests, the person who misused it was to be "cut off from his people" (Exod. 30:30-33). That oil and the unity that is likened to it are precious in God's sight.

Family unity not only pleases the Lord but also is beneficial to His people. Dew, the second figure of speech the psalmist uses to illustrate family unity, has long been a symbol of fruitfulness. "It is as if the dew of Hermon were falling on Mount Zion," says the psalmist (Ps. 133:3). Mount Hermon, a name that means sacred mountain, was near the northern boundary of ancient Israel. It is snow covered the year around, and its melting snows are the main source of the Jordan River. Some believe Mount Hermon to be the "high mountain" where Jesus' disciples saw Him transfigured (Matt. 17:1; Mark 9:2; Luke 9:28). Mount Zion refers to Jerusalem, so the psalmist is saying that unity is so beautiful and so important that it, figuratively speaking, refreshes the people of God. The unity of a family is no less precious in God's sight, and no less important for navigating the difficult road that is long-distance caregiving.

How is that unity achieved? Here are some practical steps for brothers and sisters to live together in harmony.

Focus on Those in Need

When aging parents need care, their needs must be primary. The first item for children to agree upon is that "It's our turn"-our turn to give, our turn to be responsible, our turn to sacrifice. Unity on that point is not always easy to achieve, for a number of reasons.

Rivalry. Simmering family rivalries may exist, especially in blended families where "his," "hers," and "our" children may claim differing levels of responsibility for decision making.

Competing Needs. Children in the sandwich generation often believe that the needs of their own children must take precedence over Mom and Dad's.

Confusion. It may be difficult to determine the wishes of aging parents and how best to help them.

Selfishness. Caregiving requires the sacrifice of time and, often, money. Some family members simply may be unwilling to part with either.

It may be necessary to confront the cause of division before unity can be achieved. Even during confrontations, the needs of the ill or aging loved one must be placed first.

Agree to Cooperate

Most often, the relationship between brothers and sisters will survive long after parents are gone. The issues discussed in family meetings will inevitably be emotional ones, and old tensions may come to the fore. But few of them-or none-are worth rupturing the family bond. Be flexible, be open-minded, and remember that the goal is always to care for the ailing loved ones, never to win an argument. Agree at the outset that you will work together and respect one another.

Discuss Finances Openly

Money is often the dominant issue in making caregiving decisions because nearly everything else is contingent upon it. That makes it essential for caregivers to be honest and cooperative in assessing family finances, particularly the finances of aging parents. Here are some of the questions that must be answered.

What kind of health insurance do your parents have? Medicare does not cover all health care costs. Do they have a secondary insurance policy to cover at least part of what Medicare does not provide? Do they have insurance coverage for prescription drugs? Do they have long-term health insurance?

Will your parents consider selling their home and moving to an apartment or condominium to reduce the cost and labor involved in maintaining their residence?

Do your parents have enough income to pay the monthly fee in a retirement community?

Are your parents able to afford the cost of remaining in their home, especially as they grow more dependent on assistance from others? Home care can cost up to three times as much as nursing home care.

Would the sale of your parents' home yield enough for them to pay the entry fee at a retirement community offering the three levels of care: independent living, assisted living, and skilled nursing home care?

If one of your siblings can provide adequate in-home care for the parents, will the others compensate her in some way for doing so? If one child takes a parent into her home, to what extent will your siblings help with expenses?

Amy, a medical professional who works with senior citizens, says, "It is no longer possible to get someone to help out of the goodness of their heart or in return for a small fee. Caring for old folks is hard work, and people want to be paid for it. If you have helpers in the home, be prepared to shell out big bucks." Money is a primary concern in caring for any dependent loved one. Caregivers must be prepared to discuss it early and to discuss it openly.

Be Tolerant

Every family must be prepared for the possibility that one or more members will not cooperate. Selfishness is usually at the root of the reasons family members are unwilling to share the burden of caring for aging parents; they do not wish to share their time or their money, and they leave the burden to others.

Continues...