Caring for Aging Loved Ones by Focus on the Family Physicians Resource (Manufactured by) and Focus (Created by)

Chapter 1 Chapter One

And let us not grow weary while doing good, for in due season we shall reap if we do not lose heart. Therefore, as we have opportunity, let us do good to all, especially to those who are of the household of faith.

Galatians 6:9-10 NKJV

Facing a New Role

Becoming Your Loved One's Caregiver

During a career change, Karen moved in with her parents as a single adult. She planned to stay six months but never moved out. Instead, she eventually purchased the house and became her parents' primary caregiver as their health began to fail. "For the first 15 years I was footloose and fancy free, but as time went on, I had to learn to be a lot less selfish," says Karen, now 63. "It was quite a shift because they had always taken care of my needs and I'd been so involved outside of the home-at work and at church-but now it was my turn to care."

Her new role as caregiver developed gradually-from helping her arthritic mother climb the five steps to get to the bathroom and preparing meals for her parents to eat while she was at work to driving her blind father to organ concerts and cleaning up after her mother when she was incontinent.

Karen's help wasn't always immediately appreciated. When she brought home a commode to put on the first floor, her mother got angry. "She didn't want a `potty chair' where others could see it, so she made me put it in the basement," says Karen, who respectfully complied. A couple weeks later, Karen gently raised the issue again. This time her mother agreed to put it next to her bed. "As a caregiver," says Karen, "I learned not to impose or go any faster than what my parents were willing to accept, but I didn't ignore things either."

After working all day, Karen had to consciously slow her pace to half speed or less in order to avoid getting impatient with her parents or frustrating them. "If I talked too fast or moved too fast or expected decisions too fast, they would get upset. It could be a simple question, such as, `Do you want coffee, tea, or milk for dinner?' Mentally they were okay, but it just took longer for them to decide."

Despite the challenges, Karen was devoted to caring for her aging parents. "My attitude is summed up in a motto I clipped out of a magazine years ago: `The elderly need so little, but they need that little so much.'"

* * *

Is your mother, father, spouse, grandparent, aunt, uncle, or friend growing frail, becoming forgetful, or otherwise feeling the effects of aging? Have you taken on major responsibilities for an older loved one? Or do you fear that you may have to at some unexpected moment in the not-too-distant future? Do you feel perplexed or overwhelmed by decisions you must make, by information you do not have, or by feelings you do not understand? Do you wonder how God, faith, or the Christian community can be integrated into the life of your aging loved ones as they journey through their final years, or into your own life as you travel along this unknown path with them? If you answered yes to any of these questions, this book should assist you. It was designed to take a Christian approach in mapping and traversing the unfamiliar, complex, and sometimes overwhelming territory of caregiving for elderly loved ones.

Changing Roles & Responsibilities

Most people begin to experience the consequences of aging gradually. Since you are aging too, you may observe yourself having certain difficulties even as you attempt to help a loved one who may be further along in years. For example, you may need bifocals, just as your elderly loved one may need cataract surgery. We are all on the same journey toward our final destination. We just have different roles at different times. If your loved one is ahead of you in years or is growing frail more quickly, one of your roles for a while will be that of a caregiver.

Your loved one's difficulties may have increased slowly, making you a caregiver by degrees. Perhaps you first started driving Mom to her home after dinner at your place; then you had to write down important events on a calendar for her; now she needs daily visits so you can be sure she has taken her heart pills. As people live longer, many develop chronic ailments that require more hands-on assistance over a longer period of time. You may have become a caregiver precipitously, after your husband's stroke. Elders often take an abrupt downturn in health after an illness or accident that requires medical intervention and hospitalization.

Either way, you are finding that you must become a caregiver. The role means far more than caring about others or feeling concerned for their welfare. Most likely, you have always felt appreciative of and devoted to your parents, grandparents, aunts, uncles, spouse, or older friends. But now they need more than your time and tender feelings. They need help with concrete tasks-paying bills, grocery shopping, deciding when it is time to see a medical specialist, or even changing soiled bed linen at 3 A.M. You may need to arrange for professional services and transport your loved one to appointments and social activities. As your elder's health deteriorates, you might be called upon to supervise financial affairs and medical treatments while working with professionals such as physicians, attorneys, CPAs, and insurance agents. When you assume such tasks and accept major responsibilities for the well-being of elderly adults, you become a caregiver.

Caregiver Profiles

The Spouse

When spouses are present as elderly people fall ill, they almost invariably become the principal caregivers. Elderly spouses are often enormously loyal to each other. But this arrangement can be tenuous. If you are a caregiving spouse-unless you happen to be a young one-you probably feel the effects of your own aging. What if you are asked to help your wife learn to walk again after her stroke, but you do not feel all that steady on your own feet? One devoted husband needed to help his wife to the bathroom several times during the night, even though he needed to take pills for his own difficulty sleeping at night. If you are such a caregiver, you might think privately, We could both use help. But since I haven't had a heart attack in 10 years, nobody seems to notice my needs.

The Female Relative

When elderly people become ill but do not have a spouse, most often the primary caregiver will be a female relative-usually a daughter or daughter-in-law. Female caregivers usually fill many additional roles in relationships, family, and career.

The largest group of caregivers is made up of employed women in their forties and fifties. But you may well be younger or older, married or single, not employed outside the home or working part-time. In any case, you have many demands competing for your time. You may have delayed your own professional aspirations until your children were grown. Perhaps now was the time you had hoped to go back to school or to devote time and attention to your career. You did not expect to become a new kind of caregiver, at least not so soon. Your employer might offer time off for maternity leave or crises with child care, but not for elder care.

Many times, a spouse can be a ready source of emotional support. You have someone to talk to about your parent-care problems; you have another adult in the house who can listen, understand, share decision making, and help out in many other ways. Still, caregiving responsibilities can become a source of conflict even in the best marriages. On the other hand, if you are a single caregiver, you may feel alone and isolated in your role.

Sooner or later most caregivers feel hemmed in by responsibilities on every side. Do you find yourself exhausted trying to balance the needs of your children with those of an elderly family member? If so, you are probably part of what experts call the Sandwich Generation, a term coined to describe caregivers who are assisting relatives on both ends-aging loved ones and their own children. Between 20 and 40 percent of caregivers are sandwiched between the caregiving needs of children at home and those of parents or older family members. If you are a grandparent providing assistance to parents, children, and grandchildren, you are part of the Club Sandwich Generation, a term that refers to the numerous layers of responsibility many grandparents assume in today's complex and multigenerational culture.

Wife, mother, grandmother, homemaker, volunteer, church worker, paid employee at a "real job." You may occupy all of these roles-or more-at the same time. You may fix meals; clean house; wash clothes; provide discipline and structure for youngsters; encourage and support your husband; arrange lessons and extracurricular activities; offer moral support and spiritual training; make peace out of conflict; put out "emotional brushfires"; and transport the young, the old, and yourself seemingly everywhere for everything.

The weight of the load may well be negatively affecting your marriage, your personal health, your career, and your emotional equilibrium. The risk of chronic fatigue, depression, and demoralization is high. Some caregivers decide to quit their jobs or eliminate certain responsibilities in order to restore balance to life. Still, most caregivers try not to complain under such circumstances.

The Male Caregiver

One single dad, raising two children and caring for an elderly mother, was ruthlessly honest about his experience. "We talk about the Sandwich Generation," he said. "But do you know what's in the middle of that sandwich? I'll tell you: chopped meat!" If you are a male caregiver, like that single dad, you face your own unique challenges. You are in the minority; only about one in five caregivers is male. Perhaps this is because women, when available, often automatically assume helping tasks. In general, society presumes caregiving is "women's work"; employers may frown on or penalize you for engaging in caregiving at the expense of your job performance.

Men may prefer tasks that reflect their traditional roles; for example, money management, home repairs, and making major decisions. But just like elderly husbands who are devoted to their aging spouses, sons love their parents and feel a strong sense of responsibility for them. When duty calls, many sons accept responsibility for direct, hands-on care for elderly parents.

What You May Be Feeling

Whether male or female, if you are like most caregivers, you did not plan for your new role. You might accept it with grace, but also with considerable fear and trembling. You probably do not feel prepared to address the myriad issues ahead. You want the best for your aging loved ones, but you recognize your lack of knowledge. You are not sure which symptoms are considered normal aging and which ones mean your elder should see a physician.

You may wonder where you will get the time, strength, and energy to care for your elderly loved one in addition to your job and other roles. You might feel that your own mental and physical health are as much at risk as that of your elder. The more vulnerable your elder becomes, the more vulnerable you feel. In fact, many caregivers do encounter physical illness, psychological stress, spiritual discouragement, or all three.

If your aging loved one has not saved enough of his own money to support himself financially, you may fear that he will become dependent upon you and your resources. This could threaten your family's lifestyle. Your personal dreams may be delayed while medical costs for your aging loved one eat away at your savings-and your peace of mind.

You might feel frustrated, angry, or even resentful. There could be new restrictions on your personal freedom and new demands competing with your personal goals. Tensions may mount, not only within your immediate family, but also between you and your siblings. You may debate or quarrel with them about decisions concerning your elder's health care, living situation, or possessions. If you are a long-distance caregiver, you might feel guilty, anxious, or out of touch as you try to manage the care of your loved one with miles in between. In fact, nearly 7 million Americans travel at least one hour or more to provide assistance to older relatives. This common situation has its own set of fears and challenges, yet with the proper help and resources, long-distance caregiving can be done successfully (see "Honoring a Loved One from Afar" on pages 33-38).

Perhaps becoming a caregiver has coincided with your own retirement. Just when you expected to be free of work obligations, instead of enjoying grandchildren, traveling, and hobbies, you are again facing more work, this time the mundane, practical tasks of caregiving. Or perhaps you are still in the midst of your working years and your children have only recently become independent. You have been looking forward to having time for other things: a delayed vacation, catching up on time with your spouse, reromancing your marriage, starting your own business, catching up on your sleep, or just having time to sit in a chair and do nothing for once in your life.

Experts say it is normal to experience anger at yourself, at your loved one, even at God. But in some communities and in some churches, such feelings are difficult to address and may be shunned. So in addition to your anger and resentment, you might also feel guilty just for having these feelings.

Caring for an elderly loved one is often the emotional opposite of raising children. You celebrated the passing of exciting milestones as you raised your children. But the significant milestones of an elder can be grim, leading to the inevitability of death. Simple tasks, like helping your loved one eat or washing her face, are constant reminders of decline, fraught with corresponding emotional overtones of grief and loss. You may feel deep pain and sadness about the way life is going.

At times, you may feel abandoned by family, friends, or community because they do not do enough to help. Or you may feel betrayed by the medical establishment when it fails to provide the assistance you expect from it. The culture, the community, and the church are often silent about the difficult realities and challenges caregivers face. You may feel invalidated and ignored when social institutions take your efforts for granted or fail to articulate and meet your needs for assistance. Our social institutions affirm young parents and give solace to the bereaved after the death of a loved one. Caregivers often feel left out and left over.

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Chapter One