Obstacles Faced by the Volunteer Care Givers

An ABC special series on caring for aging Americans indicated that baby boomers donate more time caring for parents than they do raising children. This generation's major challenge is how to assist aging relatives and also hold down full time jobs, take care of their own families and themselves.

In the past, women were often available to care for an aging spouse or parent-now most women work. And, in the 21st century, people are mobile, often living several states away from their hometown and their aging parents. So, these baby boomers often end up reducing work hours or loosing their jobs, to care for the elderly.

Volunteer Caregivers - Some Statistics

The American Association of Retired Persons (AARP) reported in 2007 that services donated to aging loved ones in America translated in dollars of labor to about $375 billion, up from $350 billion the previous year.

Further, about 34 million adults gave around 21 hours a week caring for the aged, typically a parent or spouse, at an hourly rate of around 10.00 an hour in comparable paid services. Even those whose parents have in-home care, or live in assisted or nursing homes have to manage many details for the elder family members.

What are the tasks of care giving?

Activates of daily living are personal care that elders may or may not be able to provide for themselves, referred to as ADLs. A geriatric social worker or other elder care professional should evaluate which ADLs a senior can manage, and which he cannot. It is not that easy to know exactly what kind of assistance is needed, and mom or dad or aging spouse may say they do not need help, because of pride or stubbornness.

The next level of care, which is more involved, is called IADLs - Instrumental activities of daily living. Again, a senior may do some of these without help, and the level of care is determined in part by what a senior can or cannot do.

IADLS may include:

Phone or internet communication to set appointments or locate resources

Arranging or providing transportation to appointments, etc.

Shopping, cooking


Managing medication (dosage, time table). Ordering/refilling prescriptions

Bills, banking and other financial

Caring for the care giver as well as the receiver

Awareness of the psychological and physiological impact of caring for an elder is of paramount importance. To mitigate the toll care giving takes on your mind and body, set aside time to care for yourself. Never dismiss feelings, or feel guilty about meeting your own needs to relax or take a vacation from care giving. As Family Care Giver points out,"...step one is reminding yourself constantly that self-care is a necessity, not a luxury."

If you only do one thing to take care of yourself, exercise or engage in physical recreation such as swimming, walking, hiking, etc. Research shows that volunteer caregivers who relieve stress through physical activity are less depressed, angry and tense, and have lower blood pressure. Going to the gym is not required; you can simply walk around the block to get a 5 minute break several times a day. If you can't get outdoors, try a fun work out video, or power walking around indoors for 5 to 10 minutes.
New Options and The Care Giving Neighbor

Another trend is neighbors who care for the elderly. Stories of a neighbor caring for a senior whose family lives across the country are not that uncommon. In the best case scenario, the neighbor is retired too and has free time, is in their 60s or 70s, in excellent health, and capable of helping the less healthy neighbor.

If you are fortunate enough to have a neighbor like that, be sure to show appreciation and compensate them for any costs incurred in caring for your parent or aging spouse. But what if you don't have the good fortune of such kind neighbors?

The workplace is stepping up and will continue to do so even more in the future, because there is such a big demand for flexibility that allows for care of elders.

Some employers offer extended leaves with partial pay, options to telecommute or cut back hours to care for an elder without forfeiting chances for advancement.

This is not coming fast enough, or in enough workplaces, so some have had an extra hard time financially due to lost hours, cutting back to part time and loosing chances for promotion-added to the stress and even the out of pocket expense, of caring for the aged.

Interested in learning more? Why not take an online Aging and Long Term Care course?

AARP cites literal costs of caring for elders, which may consist of groceries, gas and phone bills to keep in touch, repairs and home upkeep, as well as medications, co-pays, and such. This can run about 5,000 to 9,000 a year depending on the cost of living in your region of the US.

Before you throw your hands up in despair, remember there are plusses to caring for an elder: Saving them from the unhappiness that often comes from moving to nursing homes, and from increased chance of in home injuries without adequate care. Another plus is that with your help, they bounce back faster after hospitalizations, which means less care needed overall.

Volunteer elder care is a wide opened frontier with many challenges. With creativity and a positive attitude, our rich resource of older Americans will surpass the oldsters of old, as a rich cultural resource, into their 80s, 90s and 100s.

Seniors are at risk, similar to children, of rights violations and abuse. Some people may be unaware that seniors have specific rights pertaining to care in nursing homes, their own homes and other living facilities, both by the staff and their own families, or hired in home caregivers.

Laws in place to assure protection of elders began with the Older Americans Act in 1965, or the OAA. It was the first time a federal mandate was set to protect the elderly, and assure funding for social services addressing their needs.

The OAA addresses fairness and rights protection, including the right to a fair retirement income, freedom of abuse, neglect and exploitation, and access to needed mental and physical health care.

Following is only an overview of certain rights of seniors, protected under the Older Americans Act. This information largely pertains to long-term care, but seniors have rights no matter where they are-in public, their own homes and so on.

Rights of residents of long-term care or other elder care facilities

1. The right to be treated with dignity, as respected guests in a nursing home or other residential care

2. The right to information, including knowledge of facility regulations for staff, costs of services provided, and information about their treatment, as well as the right to be involved in decisions about their medical treatment or refuse treatment

3. The right of citizenship. While in long term or other care outside the home, seniors have the same rights as any citizen, which includes voting right, right to participate in any religion they desire, and to associate with anyone or any group of people they choose

4. The right to personal property - They may have and use personal belongings, and mange their own financial matters.

5. The right of privacy, including being with their spouse in private while in residential care, right to privacy of their records - medical, financial and other personal information to be kept private, the right to communicate in private with whom they so desire, the right to be alone at such time as, and as often as they desire.

6. The right to a residence, unless they violate posted rules, and then only if they and their family are given ample notice, can they be discharged from a residence

7. The right to express themselves - including complaining or filing a complaint without fear of recrimination

8. The right to care without being discriminated against - including equality in receiving care, services and treatment

9. The right to freedom - freedom from mental abuse, physical abuse, chemical restraints or physical restraints. Chemical or physical restraints, however, can be used if ordered by their doctor.

In 2000 the OAA added the National Family Caregiver Support Program, providing grant funds for support services aimed at those who donate their time to care for elders. This family support program should help volunteer caregivers to assure rights and protection of seniors, just as in an institutional setting.

Cases of seniors' rights violations are continually in the media across the country any day you happen to read the news. Such violations range from care providers stealing medications and leaving elders in pain, to keeping seniors in closed settings deprived of sensory stimulation.

A study in 2010 found that eleven percent of elders in community residential settings indicated they had suffered violations of their rights, including elder abuse, at some time within the past twelve months.

The government is aware of inadequacies in the government system of protecting the rights of aging Americans, due in part to inconsistent regulations enforcement (see lesson on Quality of Care) and because board & care and assisted living residences are not federally regulated at all.

More elder abuse is predicted in the future simply because there will be more elderly people. Those who suffer the most are people with Alzheimer's and other cognitive disabilities, and those in the frailest condition.

What Is Being Done to Protect Elderly Americans and Curb Rights Abuses?

In March 2010, the Elder Justice Act was set forth to address weaknesses in state and federal programs charged with protecting elders age 60+ from abuse, neglect and exploitation. The EJA exists within the Patient Protection and Affordable care Act of 2010. It provides grant funds to enact effective reporting requirements of abuse in care homes, and to improve Adult Protective Services' ability to respond to reports of rights violations in private homes and small group residential care.

The EJA will provide millions of dollars from 2011 to 2014 to train people in reporting requirements, to establish consistent reporting procedures, to assure available ombudsman services and to train new work force to address shortage of employees in the ALTC field.

Changes in federal regulations include significant fines for failure to report suspected abuse, designating as mandatory reports those in proximity to the elderly, as well as staff in long-term care settings. It also funds agencies such as Adult Protective Services to use quality resources for investigating reports of suspected abuse. Federal funds are being disbursed for an eventual registry of elder care providers. This will enable background checks for elder care providers, just as is the norm for those in contact with children in work environments. This registry is a positive step for elder care, which heretofore has not been as comprehensive as the child protecion systems, systems and support servives. Recent figures on elder abuse by state can be seen here:

Increase in Elder Abuse in 2010

Number of states in the US that had an increase in

abuse reports, by type, listed below:

Financial Exploitation - 25 states

Neglect - 20 states

Physical Abuse - 13 states

Sexual Abuse - 8 states

Data from AARP Public Policy Institute

Despite the legal rights of senior citizens, abuse and rights violations occur frequently. In response to abuse of seniors, the US government began the Ombudsman program.

Ombudsman - A Brief Look

In the 1970s, the Nixon Administration implemented the Ombudsman program. Starting in 1971, several states had pilot programs, and based upon results of the pilot studies the Long-Term Care Ombudsman Program began between 1972 - 1975. Federal funding was provided and the program was under the auspices of the State Areas on Aging, as well as federal control. The program beganwith volunteer ombudsman. Funding was awarded to states based upon number of elderly residents in each state.

The word Ombudsman is a Swedish word meaning: a person whose job it is to investigate complaints by individuals about government officials(s).

At present, the ombudsman's area has been expanded to handle complaints against both government, private and other aging services and facilities. The program has both paid staff & volunteers.

The ombudsman works to protect rights of elders living in nursing homes, assisted living facilities, residential care homes and other types of long-term care. Any senior can contact the ombudsman directly and voice that they think their rights have been violated.

TO CONTACT OMBUDSMAN, refer to http://www.ltcombudsman.org

With the rapid growth of the senior demographic in the United States, federal, state and local governments, private non-profits and businesses, alongside innovators and entrepreneurs, can all work to develop new approaches, technology, tools and care systems to better protect seniors and their right to a high quality of life, no matter their age. Whether you are a senior, a private caregiver or employee working with seniors, it is your responsibility to assure seniors are protected and that they are granted their rights, and to report suspected abuse.