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12 Frequently Asked Questions About Caregiving

Find ways to become better prepared when your life's focus changes

By Family Caregiver Alliance | June 4, 2012

Your life's focus changes dramatically when the time comes to provide around-the-clock care for a loved one. Here are some frequently asked questions about caregiving.

1. Can I get paid to care for a family member?

Most likely you cannot, but there are some exceptions. Very few programs will pay family members or friends on a regular basis to provide care. Medicare (government health insurance for people age 65 and older) does not pay for community-based long-term care services, like in-home care and adult day services, whether or not such services are provided by a direct care worker or a family member. Sometimes, however, caregiving families may obtain some financial relief for specific purposes, like for respite care or to purchase goods and services.    

For example, the Family Caregiver Support Program (FCSP), a federally supported program, provides services to help ease the financial burden of caregiving to a person 60 years and older. This program is available through your local department on aging. Services include: information and assistance; counseling and support groups; education and training; respite care to give you a break; and supplemental services, including the purchase of consumable supplies, emergency response systems and home modifications.

Also, national disease-specific organizations, such as CancerCare, may offer grants or other financial assistance to people with the disease and their family caregivers. For more information about disease-specific organizations active in your area, click here to select your state.

Another resource for family caregivers is the National Resource Center for Participant-Directed Services, which has created a listing (and interactive map) of Medicaid programs in each state. Your state may offer additional support programs for family caregivers. For example, in some states, the Medicaid program (government health insurance for low-income people – this program may go by a different name in your state), will provide money to pay family members to provide care to Medicaid recipients.

2. How can I find someone to help care for my family member at home?

Many older or disabled adults live at home but need daily assistance with a broad range of activities such as bathing, dressing, eating and taking their medications. They may also need assistance with household chores, such as cooking, cleaning and laundry. As a friend or relative, you may find it difficult to provide all of that help on your own. If you are providing care on a daily, weekly or even monthly basis, you may find that you need help or need a break. A variety of services are available to assist you and your family member.

Generally, two types of care in the home are available: home health care services and in-home care services. If your family member requires regular assistance with health care needs, home health care organizations and skilled nursing agencies may be the best choice for you. They can provide a range of medical services, such as medication assistance, nursing services, physical therapy and medical social services to coordinate care among health care providers. Medicare, Medicaid and a number of private insurance policies pay for some home health care services, with certain restrictions. For example, Medicare will cover limited home health care for homebound beneficiaries who need intermittent skilled nursing or therapy services as prescribed by a physician. Many families, however, have to pay out of pocket for home health care services.

If your family member needs help with daily activities and personal care, such as household chores, meal preparation or bathing, or is just in need of companionship, you likely are seeking in-home care services , rather than home health care. In-home care services offer assistance with everyday activities. The costs for these services and the eligibility requirements vary. Often, you will have to hire someone from an agency or someone you know and pay out of pocket. In some communities volunteer organizations may be able to help.

While Medicare will not pay for these services, Medicaid (government health insurance for low-income people - this program may go by a different name in your state) covers limited in-home care or chore services for those who qualify. If your family member is age 60 or older, he/she may also be eligible for other government programs administered through the local department on aging such as transportation services, meals programs (i.e., Meals on Wheels) and limited in-home personal care and chore services.


3. Help! I need a break! How can I find respite care?

Caring for yourself is one of the most important things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit too. Respite care provides family caregivers with temporary relief from day-to-day caregiving tasks, varying from a few hours to several weeks. Respite services can be provided through in-home care agencies, adult day services, facilities that allow short-term stays, individuals you hire directly or from friends and relatives willing to volunteer.  

Respite assistance is part of many caregiver support programs, including the Family Caregiver Support Program (FCSP) – available from your local department on aging.  In addition, many private or nonprofit organizations offer fee-for-service respite assistance, including in-home assistance, a short-term stay in an assisted living facility or nursing home, or adult day services. Volunteer respite services are also available in many communities to provide companionship, protective supervision and other assistance.

Don't wait until you are overwhelmed and exhausted or your health fails. Respite services, as well as support groups with other caregivers and help from your family and friends, can be invaluable.  Reaching out for help when you need it is an important part of the job.

4. How can I help my family member if I don't live nearby?

If you are helping an older or disabled family member who lives far away, you know that one of the most difficult and time-consuming tasks is coordinating care for that person. Whether you live an hour away, in another state or on separate coasts, finding resources, arranging services and coordinating your own visits and travel plans can be overwhelming. There are many options to be considered, and you'll want to make informed, well thought-out decisions about your family member's care.

The first step is to determine what types of services your family member needs. Educate yourself on the resources and services available in the community where your family member lives. Most information gathering can be done by calling the local Area Agency on Aging or by searching the Internet. Although every community is unique, there are similar kinds of services found throughout the U.S., such as adult day services, in-home care, and nursing homes.

If there are no close family members or friends who can help, a care manager can arrange and monitor hands-on services to help your relative. Care managers or social workers may be available through your relative's local department on aging. Another option is to hire privately a care manager or other professional, such as a nurse, to help coordinate services and respond quickly to challenging situations.

Remember to obtain emotional support for yourself. It may be helpful to talk to friends or to find an in-person or online support group where you can talk about your caregiving challenges. Discussing your situation, letting your feelings out and listening to other points of view can provide some relief and help you to refuel.

5. How can I take time off work to care for a family member?

The Family and Medical Leave Act (FMLA), a federal law, provides certain employees in all states up to 12 weeks of unpaid leave per year to care for themselves, a sick family member (limited to a spouse, child or parent), or a new child without losing their jobs or health care insurance. Note that this law applies only to companies with 50 or more employees and that an employee must have worked at least 52 days full-time or 1,250 hours during the previous year before taking FMLA leave.

In addition, some states have laws that expand leave protection. For example, they may include care for relatives who are not covered by FMLA, such as grandparents, siblings and in-laws. Other states have programs that continue to pay workers part of their wages while they take time off to care for an ill family member.

6. How can I deal with my family member's challenging behaviors without losing my patience?

People with cognitive impairment may exhibit a range of frustrating behavioral problems. These might include communication difficulties, becoming fixated on an idea or constantly repeating a question, aggressive or impulsive behaviors, paranoia, lack of motivation, memory problems, incontinence, poor judgment and wandering. Common causes of cognitive impairment include Alzheimer's disease and related dementias, stroke, Parkinson's disease, brain injury, brain tumor or HIV-associated dementia.

Various strategies can help you deal with challenging behaviors. In many communities, the Family Caregiver Support Program or another community organization offers classes and training sessions that teach skills useful in handling troublesome behavior. There you can receive information about your relative's ability to understand and communicate. Joining a support group also can be helpful. A support group is a good place to share your frustrations and discuss coping strategies with people who are in the same situation, caring for their family members or friends. While many support groups meet in person, online and telephone groups also exist.

It's important to remember that it's the disease, not the person, causing the behavior. Anticipating that there will be ups and downs through the illness can provide important perspective to help, maintain your patience. Compassion and a sense of humor also may enable you to cope more effectively with difficult behavior.

7. Where can I get more information on assisted living facilities and nursing homes?

The time may come when you need to consider moving a family member or friend out of his or her home. Figuring out your options and choosing the one that is best for your family member or friend may seem confusing and overwhelming. Understanding the difference between assisted living and nursing home facilities is an important first step.

Assisted living facilities and board and care homes are designed for individuals who have difficulty living alone but do not need daily nursing care. Services offered may include housekeeping, meals, help with daily activities, transportation to appointments, help with medication, and social and recreational activities. Some of these facilities may have units specifically for people with dementia, while others may not have the capacity to admit and care for dementia patients.

Nursing homes, also called skilled nursing facilities, are for individuals who need 24-hour nursing care and help with daily activities. Nursing homes also offer recreation and rehabilitative care. Keep in mind that skilled nursing care also can be provided in the home by health professionals you hire (privately or through an agency). On a long-term basis, this approach may be more costly and complex for you to manage.

All types of residential living facilities - assisted living and nursing homes may be quite expensive. As a general rule, Medicare does not cover housing facilities unless it is for a short-term stay in a nursing home right after a hospital stay. Medicaid only covers nursing home costs (usually not assisted living) for qualified low-income people. Consequently, many people have to pay out-of-pocket for residential care. In some instances private long-term care (LTC) insurance may be available to help with these costs, if the care recipient has purchased such coverage before needing chronic care. LTC insurance may pay for care in a variety of settings, including assisted living facilities. For more information, see Insuring Your Future: What Caregivers Need to Know About Long-Term Care Insurance

8. How can I make a complaint about a family member's care?

Whether your family member lives in a residential care home or a skilled nursing facility, concerns over care issues often arise. It's important to keep these issues in perspective and be reasonable in your expectations. However, if the health and safety of your family member is involved, take prompt action to resolve the problem. For example, you have every right to see that your family member receives doctor-ordered therapy and proper nutrition and to ensure that medications are administered properly.

When you have a concern, the best approach is to try to work with the facility to resolve any problems. Unless the issue poses a serious threat to the health and well being of your loved one or others, start by talking with the person in charge of the unit or section where your family member resides. Then, if necessary, work your way up the ranks to the administrator. If there still is no resolution, you should contact your state's long-term care Ombudsman office. An Ombudsman is an advocate for residents of nursing homes and other long-term care facilities. This office can provide information on how to find a facility, assess the quality of care, and assist you with complaints. In some situations, you may also wish to seek advice from an elder care lawyer.

If your family member lives at home, and you are concerned that their health or safety is at risk because they are unable to meet their own needs or because you suspect that they are a victim of abuse, neglect or exploitation, then you should all Adult Protective Services (APS). APS agencies investigate reports of abuse of older adults and adults with disabilities and arrange for services such as advocacy, counseling, money management, out-of-home placement or conservatorship.

9. My family members disagree about how to care for our relative. What help is available?

Family dynamics and sibling roles often are intensified when there is a family crisis or stressful situation. Making decisions about the long-term care of an older or disabled relative certainly can present such a situation. It is important to recognize that people may react to stress in many different ways. Many successful caregiving families report that they have divided up the responsibilities according to individual preferences and abilities. That way, everyone feels involved as a contributor and the burden for the primary caregiver is significantly lightened. A family meeting can be the key to accomplishing such an agreement and to making adjustments as the situation changes.

If additional help is needed, you may want to consider the services of a mediator, social worker, geriatric care manager or other professional who can facilitate a family meeting, inform your family about care options, and help you make decisions about the long-term care of your family member.

10. What is long-term care insurance and how can it help me?

Long-term care insurance is one way to pay for a variety of services used by people with disabilities or chronic illnesses, including in-home care, community programs such as adult day services, assisted living, and nursing home care. Ordinary health insurance policies and Medicare usually do not pay for long-term care expenses. Medicaid covers some long-term care costs, such as nursing home care and limited in-home care services, but only for a person who meets income and asset limits, as well as medical criteria. While long-term care insurance may be the right answer for some families, for others it can be unaffordable, inaccessible, or too late to provide assistance. Premium costs vary greatly depending on the age and health status of the purchaser, the benefits covered by the policy, and many other factors.

11. How can I get my family member to accept help?

While many services exist to help older people and adults with disabilities, the person who needs help may see the service as an invasion of privacy, a loss of independence or a waste of money. Many adults resist having strangers come into their home, do not want to think about attending an adult day program or consider moving into a senior housing community, for example.

Here are a few suggestions that others have found helpful in making these transitions easier. The first step is to listen to and acknowledge your family member's fears and reasons for not wanting assistance. Express your understanding of those feelings. If possible, get your family member involved in choosing the in-home aide, adult day program or residential facility. Having a 'say' will help your family member to feel more comfortable with the decision.

Next, introduce the new assistance into your family member's life gradually. For example, begin by having an in-home care aide come only a couple of hours each week, then add hours as your loved one builds a relationship with the worker. Similarly, you can also have your family member visit a day program once or twice or try a short-term or "trial stay" in a residential facility. Involving your family member's primary care physician may be useful. Physicians are often seen as authority figures and your family member may be more willing to accept help that is required or "prescribed" by a doctor.

To help your family member maintain a sense of dignity and independence, express the need as yours, for your own well-being. You can explain that knowing someone else is with your family member when you are not there allows you to not worry. Make it clear that you are not abandoning him or her.

Keep in mind that as long as your family member does not have dementia or other memory loss, he or she has the right to make 'bad' decisions. Exercising this might make your role harder, but you cannot bully a family member into doing things he or she is not ready or willing to do.

12. What should I do to help get my family member's legal and financial affairs in order?

When a family member has dementia or another disabling health condition, it's easy to feel overwhelmed by the many legal and financial questions that can arise. There are questions like: Who gets to make decisions about their financial and personal affairs? When is it time to consult with an attorney? What is the difference between conservatorship, guardianship and durable power of attorney? How are we going to pay for long-term care?

If you are looking for an attorney, you can ask your local Area Agency on Aging for a legal consult, you can call the senior legal hotline in your state, or you can hire an attorney who specializes in eldercare law.

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