Caregiving

This is the start of a new series of articles on caregiving. New pages will be added as new articles are written. An overview of caregiving is presented here. More specific information will be presented on further pages.

Page 2: Caregiving

Facing the Final Mystery, a New Series of Articles

by Laura Larsen, RN

The article below, written by Laura Larsen, RN, is the first in a series of articles based on her book, Facing the Final Mystery, A Guide to Discussing End-of-Life Issues (Second Edition).

Laura is a graduate of the UCLA School of Nursing and has been a healthcare provider for over thirty years, during which time she has come to view our culture's avoidance of dying and death as a critical stumbling block to our ability to live life fully. Her book endeavors to bring into our consciousness the pertinent questions and issues surrounding the end of our lives, to explore the feelings that keep us from talking, and to provide useful information and suggestions for having conversations now, before a crisis occurs.

Many of us, our families and friends, are not prepared to face suddenly the very important medical, and even practical, decisions for ourselves or a loved one when faced with a terminal illness. Facing the Final Mystery provides answers to many end-of-life issues, as well as practical information and resources, including books, websites and organizations to help us learn about the many options and opportunities for facing the final mystery.

The book is divided into four sections, each covering a specific problem or issue. There is an index for easy reference, and an extensive bibliography of reference books and other media, and a section of organizations. Part I gives a brief background and history of the denial of death in America, a subject many Americans do not think about until they, or a loved one, become terminally ill.  Part II gives information, points of view, and personal experiences gleaned over Laura's decades of experience in the healthcare profession and as a sought-after lecturer in the field. She answers questions about technological innovations, practical end-of-life tasks, and spiritual beliefs.The book is not a religious book, nor does it present a particular point of view. Rather, presented are many points of view, quotations from known and lesser-known individuals on living and dying, and personal experiences.  Part II helps to integrate the information and points of view through exercises on new ways to communicate with our families and communities in order to bring the changes and knowledge learned into every aspect of our lives.

Visit Laura's website, http://www.lauralarsen.com for more information about her and her work. Facing the Final Mystery can be ordered from Amazon.com, or directly from the website, where reviews from readers and letters of appreciation are also available.  

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CAREGIVING

by Laura Larsen RN

THE CAREGIVNG DILEMMA

Caregiving at the end of life is one of the most important issues before us in the twenty-first century. The population over sixty-five is expected to almost double by 2040. In practical terms, this means:

·         The number of elders is increasing as the percentage of younger family members is decreasing.

·         Everyone is likely to provide care to a loved one, and possibly for a long time.

·         Everyone is likely to need care, and possibly for a long time.

·         More that 70% of Alzheimer's suffers live at home, because most insurance policies do not cover custodial care. This can continue for many years.

·         Retiring at age sixty-five and living to be ninety-five leads to thirty years of slowing down physically and developing chronic diseases that do not kill but require care.

·         One in three women over sixty-five will develop cancer, requiring care during long courses of treatment.

 

The following further complicates the caregiving dilemma:

·         Many family members have moved to faraway cities, states, or even to other countries, leaving their parents or siblings without a core support system nearby.

·         Many families require both partners to work full-time and cannot personally give needed care without jeopardizing their own financial needs.

·         Geographical separation can also mask the need for care, as when distant loved ones say on the phone, "Everything is just fine," even when it is not.

·         Medical insurance companies, including Medicare, pay for surgeries, treatments, and hospitalization, but seldom cover care at home, or in nursing homes. Medicare does not cover Americans living abroad, or those living in the US who do not qualify for Social Security.

·         The cost of round-the-clock caregiving is affordable to very few.

·         Long-term care insurance, which does pay for care in nursing homes, can be costly, especially if it is not purchased early. Some companies have policies that cover US citizens living abroad.

·         If we wait until the crisis occurs, parents are often elderly and may cling to their familiar homes and belongings.

·         If mental deterioration has begun, it is often impossible to engage in conversations that would enable caregiving decisions to be made.

·         The resistance to talking about illness, dying, and death prevents families from exploring options ahead of time.

·         Emotional separations within families can prevent even the desire to care for a loved one in need.

·         Guilt over placing a loved one in a nursing home can lead to emotional distress.

·         Not placing a relative in a nursing home can create upheaval for the rest of the caregiver's family.

Discussing the implications of our inevitable need for receiving and giving care now can lead to new attitudes, the knowledge of available resources, and the possibility of developing community involvements to benefit all of us.

A NEW ATTITUDE ABOUT CARING

Many of us have heard a parent say, "I will do anything to avoid being in a nursing home," or "I don't want to be a burden to my children." Three questions underlie these pressing concerns:

1.       What can we do to help our parents deal with their fear of incapacitation?

2.       How will we help our children care for us when we are in need?

3.       What are the alternatives to the extremes of nursing home care and the feeling of being a burden?

These lead to a fourth:

4.       How can we see caregiving in a new light?

Henri Nouwen writes in Our Greatest Gift: A Meditation on Dying and Caring, "Caring is the privilege of every person and is at the heart of being human.

Yes, in modern times, we have relegated caring to professionals who have been trained to care. While so many of us fear the lessening of our physical and mental capacities as we age or become ill, Nouwen suggests that we see these decreasing abilities as "gateways to God's grace." If we can create communities of caring, both the caregivers and those cared for begin to feel the same. Our greatest fears diminish. Fears of being found a burden or nuisance are allayed when heartfelt and loving people care for us. In addition, when we can give care to others from our hearts, we diminish those same fears in ourselves. Nouwen also encourages us to seek help and community in giving care and not to make it an endurance test. "When we care together, the boundaries between receiving and giving vanish, and true community can start to exist."

CARING FOR LOVED ONES CANNOT BE DONE ALONE

The nuclear family can cope with flu season and broken arms. But what happens when cancer is diagnosed, resulting in a year of treatments; dementia takes over the mind of a once bright parent; or one of many diseases relegates an active family member to a wheelchair? The larger community must be included in order to:

·         Find the right place for our loved ones to live if we cannot care for them at home;

·         Find specific kinds of caregivers to assist us at home;

·         Obtain financial assistance;

·         Rejuvenate ourselves so we can continue giving care;

·         Discover and locate special equipment or medicines that we may not even know exist;

·         Deal with the guilt and fear that can surround a long-term caregiving situation.

There are hundreds of thousands of people in our country giving and receiving excellent care. But it cannot be done in isolation. When a loved one is in a medical crisis, family members can't clearly make all the decisions needed. Sometimes disagreements between family members may increase the problems. When illness continues over long periods of time, fatigue sets in, no matter how deep the love. Without help, both the patient and the caregiver are subjected to extreme stress, guilt, anger, and depression. At the same time, turning complete care over to strangers deprives family member the experience of deep intimacy and growth that caregiving brings. Help for the helpers is available, and the potential for new kinds of assistance is on the horizon.

SOURCES OF CAREGIVING HELP

Following are categories of places and people to turn to when we need more help than our own household can supply.

Agencies: Some are run by the government, some by churches, some by people who have gone through difficult and rewarding caregiving situations. There are agencies that will help in understanding specific illness, obtain financial assistance, provide equipment, and select residential or day-care centers.

Case managers or case workers: One of the most valuable resources available to families giving or receiving care. Often social workers or nurses, they can be located through hospital discharge departments, local community centers, a care-manager organization, or senior resource guide. A care manager can help find places to live, part-time care, equipment, and other services.

Clergy: Religious organizations can offer many sources of caregiving. In addition to spiritual guidance and prayers, churches may also provide volunteer help and support groups.

Friends and the larger family: When illness and hardship strike, it is often difficult for those outside the immediate family to know what to do. Asking friends and other family members to help give care, run errands, or rub shoulders can provide help as well as offering the opportunity to participate.

Home health care: Nursing care can be provided at home a certain number of days per week as needed. Medicare covers some of these services in the United States.

Hospice: Even if a loved one is not near death and ready for hospice care, a local hospice can provide guidance to other areas of support, as well as help determine when that care will be needed.

Other caregivers: Talk to those who have cared for their loved ones to learn what helped them and what made it difficult.

Resource guides: Many communities have gathered all of the known services into a publication that is distributed through senior centers, churches, and doctors' offices. Your FAWCO club may have such a publication. If not, volunteer to compile one.

Support groups: There is a support group for almost every illness, as well as for those who have aging parents, sick children, suffered the loss of a child, or loss of a spouse. Knowing that others specifically understand your situation can help keep one's emotional life intact-especially if care must continue over a long period of time.

REMODELING CAREGIVING

It is time to put on our thinking caps and create new ways to provide care for one another in our near futures. Nursing homes, board and care facilities, 24-hour home care, retirement communities, three-tiered or not, are surely not the only solutions. What most of these existing models provide is isolation from what was once known, whether it is removal from one's home, neighborhood, or circle of friends.

Cost for a residential setting with some type of care provided is at least $3500 per month for one person. How could that amount of money be used in a different way to provide good care, a homey environment, and people with whom we are happy to live near or with? Following is a list of ideas.

 

·         Communal sharing of caregiving: As we let go of our larger homes, can we consider moving to apartment houses or neighborhoods near friends or family where one nurse, one housekeeper, one driver could also live and help meet needs?

·         Providing homes and income to caregivers: Can we match the needs of those capable of giving care to those who need it, given that many people are living alone and without purpose, while still physically capable of providing care to others.

·         Matching caregivers with those needing care: Are there new ways to connect the givers and receivers together in local communities, without agencies, and still be safe?

·         Planned board and care for friends: Instead of living with strangers, can we think ahead about the people with whom we might like to share a home and resources?

·         New business opportunities: Are there hidden opportunities and solutions to Caregiving dilemmas that can lead to new businesses of providing care? Could those be funded partially by grants or donations?