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Caregiving at Home for the Elderly, Chronically lll or Disabled
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Are you caring for a family member or friend who is chronically ill, disabled or elderly? If so, you’re not alone. According to the National Family Caregivers Association, 50 million Americans face the enormous financial, personal and health demands of caring for someone other than themselves. This HealthSmart! offers resources to help guide you through successful caregiving for yourself and your loved one.
If your loved one is hospitalized, gain as much information as possible from doctors, nurses, social workers and therapists prior to discharge so you can develop a care plan and strategies for effective home caregiving. Before your loved one leaves the hospital, ask your health care team the following questions:
- How long will the illness or injury last?
- How will the person’s condition improve
or worsen?
- Will the person fully recover from his or her
condition or illness?
- Is physical, occupational or speech therapy
necessary for recovery, and who will
provide the service? If necessary, will
therapists train caregivers how to move/transfer the patient until home health or the
therapist arrives?
- How will any medical emergencies that
might occur be handled?
- What types of care will the person require
and what is the best way to provide them?
- Will any special equipment be needed to
deliver oxygen, monitor health indicators or
provide intravenous feeding? Find out who
will train you to operate it and what type of
maintenance might be required. Be sure to
have a number to call if equipment fails.
- Ask your doctor or pharmacist about
required medications. Find out when and
how long the medication should be taken,
what the possible side effects are and
whether interactions may occur with any
other medications the patient is taking.
Ask what time the next dose of medication
needs to be given after discharge.
In committing to home care, it is important to set priorities and goals with your loved one and to recruit as much support as possible.
- Form a care team that includes health care workers, friends, family, community organizations and volunteers.
- Create a care plan journal to keep track of new developments or changes in your loved one’s needs and track his or her progress.
- Include your loved one in decisions about her care as much as possible.
- Learn as much as you can about your loved one’s condition so you can communicate appropriately with the health care team.
It is important to take precautions when setting up your loved one’s environment. Home modifications can be minor or major depending on the nature of the injury or illness. The following are home modifications that may be necessary, but consult with your health care team to determine other special needs.
- Set up a bedside table to keep important items within reach, such as medications, water and a bell to call for assistance.
- Depending on the person’s mobility, you may need a bedpan, a handheld urinal or a portable commode chair that contains a removable bedpan.
- Improve lighting and visibility by installing
lighted switch plates, using high-wattage
light bulbs in stairways and hazardous areas,
installing a voice- or sound-activated adapter to
turn on lights, or using motion-sensitive lighting.
- Remove loose rugs around the home and install
nonslip surfaces in the bathroom and kitchen.
- Install a shower or tub chair, handrails and
grab bars in the shower and next to the toilet. A
booster seat for the toilet may also be necessary.
- Converting a ground-floor room into a bedroom
may make assisting your loved one easier and
offer better access to the restroom and kitchen.
- Replace round doorknobs with lever handles.
- Install an emergency response system.
It may become too difficult to care for your loved one by yourself. If you determine that professional in-home assistance is needed, options are available. Home health care services range from skilled nursing assistance to transportation and meal assistance.
Home health agencies provide a wide range of services, such as registered nurses, nurses aides, physical and occupational therapists, speech therapists, and nutrition counselors. These services may be appropriate if your loved one needs constant medical supervision and/or assistance with wound care, injections, tube feeding or colostomy care. Your doctor, social worker or discharge planner can recommend services for your situation.
Personal care services provide assistance with bathing, food preparation or transportation. Companions, housekeeping and assistance with daily living are provided by various organizations.
Home health agencies may be able to provide such assistance; friends, neighbors, local volunteer organizations, church groups or senior citizen centers may also be sources of help. Ask your doctor or social worker for recommendations.
Meals on Wheels is a volunteer-based program that provides home delivery of meals. This service is often provided through senior citizen centers, local government agencies, church groups and national associations such as the American Red Cross.
Many community organizations provide transportation services for seniors and the disabled to medical appointments or community locations. Ambulance service may be used as well and is appropriate for people who can’t use other transportation methods. Transportation services may be offered through home health agencies, local volunteer organizations, church groups or senior citizen centers.
Adult day care includes programs, services and facilities designed to help physically or mentally impaired adults remain in their homes. These programs provide an alternative to placement in a residential institution and give caregivers a break from having to provide constant attention. Some local governments, community organizations, senior citizen centers or church-related groups provide
this service. Your doctor or social worker may recommend an adult day care program in your area.
These stores carry a wide selection of home care equipment and supplies for purchase or rent. Equipment ranges from hospital beds and wheelchairs to urinals and bedpans. Some providers may deliver and set up the equipment in the home and demonstrate how to use it properly. Talk with your social worker, discharge planner or doctor for recommendations.
Hospice services meet the needs of people who are terminally ill. Care can be delivered in the home or hospital. A doctor’s authorization is required for hospice care. Talk to your doctor and health care team to see if hospice is right for your loved one.
A geriatric care manager specializes in issues relating to elder care and can help families navigate the health care system. A geriatric care manager can help develop a care plan, monitor home help services, and assist with legal and medical issues. To learn more, visit the National Association of Geriatric Care Managers Web site at www.caremanager.org, or ask your doctor for a recommendation.
The Elder Care Locator is a public service financed by the U.S. Administration on Aging to help older adults and their caregivers find community resources. For more information, call 1-800-677-1116 or visit http://www.eldercare.gov/Eldercare.NET/Public/Home.aspx.
Choosing a home health care provider requires research. No matter what type of care your loved one needs, ask any potential provider the following questions and be sure to interview several providers before committing to one:
- Is the provider licensed, bonded and registered
with the appropriate regulatory agencies in your
state? Check with your state’s department of
public health or department of social services.
- Is the provider accredited by an appropriate
agency? Accrediting agencies include the
Accreditation Commission for Home Care, the
Community Health Accreditation Program,
The Joint Commission (accredits health care
organizations such as hospitals and other
medical facilities), the National Committee for
Quality Assurance, and the National HomeCaring
Council Division of the Foundation for Hospice
and Homecare.
- How long has the provider been in operation?
- Ask friends, neighbors and your health care team
about the provider’s reputation in the community.
- What are the fees for the services you require?
Will your health insurance cover these fees? What
are the billing procedures?
- Is the provider Medicare-certified?
- How does the provider hire, screen and train staff
members? Are criminal background checks and
drug screenings performed?
- Does the agency provide the required equipment?
- Do staff members train family members to
perform caregiving duties?
- Are staff members available on weekends
and holidays?
- How does the provider handle emergencies?
Does it have 24-hour emergency assistance?
- How does the provider handle questions and
complaints from customers?
While interviewing the provider, outline and explain upfront all the tasks you would like the provider to perform. Make sure both parties have a clear understanding of what is required.
Medicare, Medicaid, state-funded health care, private insurance plans, the Department of Veterans Affairs, Workers’ Compensation and managed care plans are a few providers that offer assistance for home care services. Be sure to talk with your doctor, social worker, hospital discharge planner and insurance agent to determine the benefits for which your loved one qualifies.
If your loved one is 65 or older and needs skilled nursing or rehabilitation care at home, Medicare may cover it. Minimum qualifications in addition to physician orders for care are typically required. Medicare only covers home care provided by a Medicare-certified home health care agency. To find out more, visit Medicare’s Web site at www.medicarebenefits.com or call 1-800-633-4227.
Medicaid is a state program that provides health insurance for low-income or disabled residents. Covered services may include part-time skilled nursing care, home health aides, medications, and medical equipment and supplies. Eligibility varies from state to state, so please check with your local Medicaid office to find out which services are covered for you. To find out more, visit the Center for Medicare and Medicaid’s Web site at www.cms.hhs.gov or call 1-800-633-4227.
The Department of Veterans Affairs covers the cost of home health care for eligible veterans who are at least 50 percent disabled, if the disability is service-related. To be covered, home care must be authorized by a doctor and provided through a VA hospital. Contact your closest Department of Veterans Affairs Regional Office for additional information about benefits and eligibility. Call 1-800-827-1000 or visit their Web site at www.va.gov.
Long-term care insurance is usually available only to people who are in generally good health at the time they purchase the policy. Coverage varies considerably from one policy to another. Check your policy or talk to your insurance representative to determine the benefits for which you qualify.
Workers’ Compensation may cover the cost of home care services needed as a result of a work-related injury or illness and also covers the cost of rehabilitation. If your loved one has a work-related injury or illness, contact his or her employer’s personnel office or human resources department for information on eligibility for benefits and how to file a claim.
Community organizations and local service clubs, such as Rotary, Elks and Kiwanis often offer assistance to those in need. Other helpful resources include national volunteer health organizations such as the American Cancer Society, the Easter Seal Society, the United Way and the Alzheimer’s Association. For more information about services available, contact your local chapter.
As a caregiver, you will most likely be responsible for communicating with the health care team. Being prepared for your visit will help you, the patient and the health care team experience the best possible outcomes.
- Prior to a hospital visit, be sure to have the
patient’s medical records, a list of the patient’s
allergies, current medications and dosages, and
names and phone numbers of the health care
team with you.
- Make a list of your concerns and specific
questions prior to talking with the health care
team.
- Be clear and concise. State clearly and briefly
what your question or concern is, what you need
and what you expect.
- When you hear something you do not understand,
ask for clarification.
- Write down as much as you can when speaking
with the health care team.
- Ask the doctor or other care team members to
put in writing any instructions, explanations,
resources, medications or information that is
important to your loved one’s care.
Medical privacy laws place great protection on
patient information. Having the proper legal
documents will help you advocate for your loved
one. Examples of the following legal documents
may be obtained through your hospital, social
worker, attorney or your state attorney general’s
office. Signed copies should be given to your family
doctor and placed in the hospital chart each time
your loved one is hospitalized.
Also known as a health care agent or proxy, this person can be appointed to make decisions about the person’s medical care if they are unable to speak for themselves.
An advance directive informs doctors and family members what kind of care your loved one wishes to receive in the event that he or she can no longer make their own medical decisions.
A living will is a written document signed by a competent adult that contains the person’s advance directive about medical care in the event that he/she becomes incompetent to make such a decision. Unlike a durable power of attorney for health care, a living will speaks for the person who signed. Laws regarding living wills and advance directives vary by state. The National Hospice and Palliative Care Organization provides a link for caregivers to download state-specific advance directives. For more information: www.nho.org.
Caregiving can place great strain on the caregiver. Remember that caring for yourself is just as important as caring for your loved one.
- Support groups allow caregivers to come
together and discuss information and resources,
share experiences, and receive emotional support
from others who are experiencing the same
thing. Support groups are available in a variety
of forms, including online discussion groups and
personal meeting groups. Many associations have
support groups that deal with specific illnesses.
The UK HealthCare Web site provides links
to a wide variety of support groups available
in or near Lexington. To view this list, visit
UK HealthCare's list of support groups on aging.
- If you are working, be sure to talk with your
employer to let them know about your new
responsibilities. They may be able to work with
you for necessary paid medical leave. Consult
your human resources department for specific
policies and available resources.
- Don’t be afraid to ask for help. It’s natural for you
to need assistance with and breaks from your
caregiving responsibilities.
Family Caregiver Alliance
Provides a wide array of services and publications
based on caregiver needs.
1-800-445-8106
www.caregiver.org
National Family Caregivers Association
Provides information, education and support for
caregivers.
1-800-896-3650
www.nfcacares.org
National Alliance for Caregiving
Offers brochures, education and research for family
caregivers and organizations.
www.caregiving.org
Family Caregiving 101
A Web site offering caregivers education, tips and
resources for family caregivers. Sponsored by
the National Family Caregivers Association and
National Alliance for Caregiving.
www.familycaregiving101.org
American Cancer Society
Offers information, support and community
resources for cancer issues.
1-800-227-2345
www.cancer.org
Alzheimer’s Association
Provides local offices, 24-hour support line
and resources for finding home care.
1-800-272-3900
www.alz.org
American Red Cross
National volunteer association that provides
education and support services.
1-800-733-2767
www.redcross.org
The United Way
Local United Way chapters assist with
funding assistance, education and support.
1-703-836-7112
www.liveunited.org
UK HealthCare
Offers a variety of resources and education
about specific illnesses and injuries along
with a comprehensive list of support groups.
859-257-1000 or 1-800-333-8874 (toll free)
ukhealthcare.uky.edu
9-803 3/09
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