Caregiving

Frequently Asked Questions About Caregiving

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I’m new to caregiving. Where do I start?

 

Caregiving can be overwhelming, especially when you’re starting out. Take a deep breath! Then tackle one task at a time.

First, assess your loved one’s needs. What types of help are needed? Ask family members and friends to share tasks. Look for resources in your community, such as home health care or adult day care centers. The Eldercare Locator can help you find in-home help; transportation; resources to install ramps, grab bars, or other home modifications; and other resources in your area. It can also help you learn about options for paying for care.

Learn more about getting started with caregiving.

How do I help organize important paperwork and get affairs in order?

My mother was recently diagnosed with Alzheimer’s. Her doctor recommended we make plans now for her future while she is still well enough to tell us what she prefers. My sister and I agree, but how do we start?

It can be helpful to know where your loved one’s important papers are stored so you can find them when you need them. Getting Your Affairs in Order has a list of legal, financial, and personal records you’ll want to locate and organize.

Another tip: Get formal permission from your loved one to talk with his or her lawyer, bank, and healthcare providers in advance. Many of these institutions have their own forms that must be signed with your loved one’s consent.

Learn more about advance care planning and legal and financial planning for people with Alzheimer’s.

How can I help my older parents from afar?

If you live an hour or more away from a person who needs care, you are a long-distance caregiver. There are a number of jobs you can take on even if you live far away. You can arrange and coordinate care in the person’s home or long-term care facility, help with finances, organize legal and financial paperwork, or help make the home safer. You can also research local resources and learn how to make the most of your limited time when you visit an older relative far away.

You can also hire a geriatric care manager—a specially trained professional who can help your family identify needs and make a plan to meet those needs.

Get more tips about long-distance caregiving.

How can I find caregiving resources in my area?

My husband of 40 years fell and broke his hip. Now he is very weak and needs a lot of help around the house. I have congestive heart failure and can’t help him as much as he would like. My neighbor has been a great help with meals and groceries, but neither of us can drive. How can I get help with transportation and in-home care?

Whatever kind of help your loved one needs—for example, with personal care, transportation, or meal preparation—it may be available in your community. You can get more information from your local Area Agency on Aging, local and State offices on aging or social services, tribal organization, or nearby senior center.

Here are some places to start looking for help:

Find more caregiving resources at NIA’s Caregiving Portal.

How do I choose a long-term care facility?

Sometimes, an older person you care for can no longer live safely in his or her own home. Some may move in with family or friends. People who require lots of help might move to a residential facility, such as an assisted living facility, nursing home, or continuing care retirement community. But how can you find a place that will take good care of the older person you love and meet his or her needs? If possible, it’s best to plan ahead for long-term care.

Learn about different types of long-term care. Then, visit facilities and ask questions. Note how comfortable and content the residents seem and how they interact with the staff.

Learn more about choosing a nursing home.

How can we pay for long-term care?

Many caregivers and older adults worry about the cost of long-term care. These expenses can use up a significant part of monthly income, even for families who thought they had saved enough. How people pay for long-term care depends on their financial situation and the kinds of services they use. Often, they rely on a variety of payment sources, including personal funds, Federal and State government programs, and private financing options. Veterans may also be eligible for assistance through the U.S. Department of Veterans Affairs.

Learn more about paying for long-term care.

Can I get paid to take care of a family member?

Family caregivers make a lot of sacrifices to care for older or sick relatives. Some even quit their jobs to care for a loved one full-time. Your state may offer help to certain caregivers. Programs vary, so contact your local Area Agency on Aging to find out what programs are available in your neighborhood. VeteransMedicaid recipients, and people living with certain diseases may also be eligible for financial assistance through Federal, State, and private organizations.

How do I make an older person’s home safer?

My dad is 72 and had a stroke 3 months ago. He’s just about ready to be released from rehab and will come home. How do I make my dad’s house more accessible for his new condition?

Talk with the person’s doctors and social workers about how his or her health might make it harder to get around and take care of themselves at home. Local and State offices on aging and social service agencies may be able to provide or tell you about services to make the home easier and safer to live in. Think about things like ramps at the front and back doors, grab bars in the shower and next to the toilet, and handles on doors and faucets that are easier to use.

Get tips on making a home safe and accessible.

How can I talk with an older person’s doctor?

My great-aunt has no problems getting to her doctor’s appointments, but she always seems to forget what the doctor told her to do. How can I help her remember?

Many older adults find it helpful to bring a family member or friend with them to the doctor’s office. Just remember to get formal permission from your relative to speak with his or her healthcare providers. Before the appointment, you can help your relative prepare for the visitwrite down concerns, and go over what to say to the doctor. During the visit, you can take notes. After the appointment, review what the doctor said to help your loved one remember.

Read more about how friends and family can help during a doctor’s visit.

I’m overwhelmed and exhausted. How can I get a break from caregiving?

My uncle is 78 and has dementia with Lewy bodies. My aunt had been taking care of him, but after she died, I’ve had to step up. But it’s been hard to juggle work, my own family, and my uncle’s care. I’m overwhelmed and exhausted. I need help.

Share this infographic and help spread the word about caring for yourself while caring for others.

Taking care of a sick family member is hard work. But taking care of yourself is important too. When you feel overwhelmed and exhausted, you can’t be a good caregiver to your loved one. All caregivers need a break from time to time. Take a walk, talk with friends, or get some sleep. Eating healthy foods and staying physically active will help you stay healthy. Joining a caregiver support group—either in your community or online—can help you feel less alone and gives you a chance to exchange stories and ideas. Don’t be afraid to ask for help from family members or friends. Respite care services may also be an option.

Learn more about respite care.

What do I do if I suspect an older person is being mistreated?

Abuse can happen to anyone, no matter the person’s age, sex, race, religion, or ethnic background. Abuse can be physical, emotional, financial, or sexual, and it can happen at a facility, at a family member’s house, or at home.

Alzheimer’s Caregiving: Caring for Yourself

Taking care of yourself—physically and mentally—is one of the most important things you can do as a caregiver. This could mean asking family members and friends to help out, doing things you enjoy, or getting help from a home health care service. Taking these actions can bring you some relief. It also may help keep you from getting ill or depressed.

Ways to Take Care of Yourself

Here are some ways you can take care of yourself:

Asking for Help

Everyone needs help at times. However, many caregivers find it hard to ask for help. They may feel they should be able to do everything themselves, or that it’s not all right to leave the person in their care with someone else. Or maybe they can’t afford to pay someone to watch the person for an hour or two.

Here are some tips about asking for help:

  • Remind yourself that it’s okay to ask for help from family, friends, and others. You don’t have to do everything yourself.
  • Ask people to help out in specific ways, like making a meal, visiting the person, or taking the person out for a short time.
  • Call for help from home health care or adult day care services when needed. To find providers in your area, contact Eldercare Locator.
  • Use national and local resources to find out how to pay for some of this help or get respite care services.

You may want to join a support group of Alzheimer’s disease caregivers. These groups meet in person or online to share experiences and tips and give each other support. Ask your doctor, check online, or contact the local chapter of the Alzheimer’s Association.

What If Something Happened to You?

It is important to have a plan in case of your own illness, disability, or death.

  • Consult a lawyer about setting up a living trust, durable power of attorney for health care and finances, and other estate planning tools.
  • Consult with family and close friends to decide who will take responsibility for the person with Alzheimer’s. You also may want to seek information about your local public guardian’s office, mental health conservator’s office, adult protective services, or other case management services. These organizations may have programs to assist the person with Alzheimer’s in your absence.
  • Maintain a notebook for the responsible person who will assume caregiving. Such a notebook should contain the following information:

Preview board and care or long-term care facilities in your community and select a few as possibilities. Share this information with the responsible person. If the person with Alzheimer’s disease is no longer able to live at home, the responsible person will be better able to carry out your wishes for long-term care.

Coping with Emotions and Stress

Caring for a person with Alzheimer’s takes a lot of time and effort. Your job can become even harder when the person gets angry with you, hurts your feelings, or forgets who you are. Sometimes, you may feel discouraged, sad, lonely, frustrated, confused, or angry. These feelings are normal.

Here are some things you can say to yourself that might help you feel better:

  • I’m doing the best I can.
  • What I’m doing would be hard for anyone.
  • I’m not perfect, and that’s okay.
  • I can’t control some things that happen.
  • Sometimes, I just need to do what works for right now.
  • I will enjoy the moments when we can be together in peace.
  • Even when I do everything I can think of, the person with Alzheimer’s disease will still have problem behaviors because of the illness, not because of what I do.
  • I will try to get help from a counselor if caregiving becomes too much for me.

Share this infographic and help spread the word about caring for yourself while caring for others.

Some caregivers find that going to a church, temple, or mosque helps them cope with the daily demands placed on them. For others, simply having a sense that larger forces are at work in the world helps them find a sense of balance and peace.

Getting Professional Help

Mental health professionals and social workers help you deal with any stress you may be feeling. They help you understand feelings, such as anger, sadness, or feeling out of control. They can also help you make plans for unexpected or sudden events.

Mental health professionals charge by the hour. Medicare, Medicaid, and some private health insurance plans may cover some of these costs. Ask your health insurance plan which mental health counselors and services it covers. Then check with your doctor, local family service agencies, and community mental health agencies for referrals to counselors.

More Tips for Self-Care

Here are other things to keep in mind as you take care of yourself:

  • Understand that you may feel powerless and hopeless about what’s happening to the person you care for.
  • Understand that you may feel a sense of loss and sadness.
  • Understand why you’ve chosen to take care of the person with Alzheimer’s disease. Ask yourself if you made this choice out of love, loyalty, a sense of duty, a religious obligation, financial concerns, fear, a habit, or self-punishment.
  • Let yourself feel day-to-day “uplifts.” These might include good feelings about the person you care for, support from other people, or time spent on your own interests.

 

Getting Help with Alzheimer’s Caregiving

Some caregivers need help when the person is in the early stages of Alzheimer’s disease. Other caregivers look for help when the person is in the later stages of Alzheimer’s. It’s okay to seek help whenever you need it.

As the person moves through the stages of Alzheimer’s, he or she will need more care. One reason is that medicines used to treat Alzheimer’s disease can only control symptoms; they cannot cure the disease. Symptoms, such as memory loss and confusion, will get worse over time.

Because of this, you will need more help. You may feel that asking for help shows weakness or a lack of caring, but the opposite is true. Asking for help shows your strength. It means you know your limits and when to seek support.

Build a Support System

Read and share this infographic to learn how to find time for yourself while caregiving.

According to many caregivers, building a local support system is a key way to get help. Your support system might include a caregiver support group, the local chapter of the Alzheimer’s Association, family, friends, and faith groups.

Resources for Alzheimer’s Care

Here are some places that can give you support and advice:

NIA Alzheimer’s and Related Dementias Education and Referral (ADEAR) Center
Email the ADEAR Center
Phone: 1-800-438-4380

The ADEAR Center offers information on diagnosistreatment, patient care, caregiver needslong-term care, and research and clinical trials related to Alzheimer’s disease. Staff can refer you to local and national resources, or you can search for information on the website. The Center is a service of the National Institute on Aging (NIA), part of the Federal Government’s National Institutes of Health. They have information to help you understand Alzheimer’s disease. You can also get hints on other subjects, including:

Alzheimer’s Association
Phone: 1-800-272-3900

The Alzheimer’s Association offers information, a help line, and support services to people with Alzheimer’s and their caregivers. Local chapters across the country offer support groups, including many that help with early-stage Alzheimer’s disease. Call or go online to find out where to get help in your area. The Association also funds Alzheimer’s research.

Alzheimer’s Foundation of America
Phone: 1-866-232-8484

The Alzheimer’s Foundation of America provides information about how to care for people with Alzheimer’s, as well as a list of services for people with the disease. It also offers information for caregivers and their families through member organizations. Services include a toll-free hotline, publications, and other educational materials.

Eldercare Locator
Phone: 1-800-677-1116

Caregivers often need information about community resources, such as home care, adult day care, and nursing homes. Contact the Eldercare Locator to find these resources in your area. The Eldercare Locator is a service of the Administration on Aging. The Federal Government funds this service.

National Institute on Aging Information Center
Email the NIA Information Center
Phone: 1-800-222-2225
TTY: 1-800-222-4225

The NIA Information Center offers free publications about aging. Many of these publications are in both English and Spanish. They can be viewed, printed, and ordered online.

Direct Services: Groups that Help with Everyday Care in the Home

Here is a list of services that can help you care for the person with Alzheimer’s at home. Find out if these services are offered in your area. Also, contact Medicare (or call 1-800-633-4227) to see if they cover the cost of any of these services.

Home Care Services

Home care services—not to be confused with home health care services—send a home care aide to your home to help you care for a person with Alzheimer’s. These aides provide personal care and/or company for the person. They do not provide skilled medical care. Aides are usually not medical professionals. They assist with daily activities such as bathing and dressing and may even help with light housekeeping, transportation, and errands. Home care aides may come for a few hours or stay for 24 hours.

What to know about costs:

  • Home care services generally charge by the hour. Some services charge a flat rate for staying overnight.
  • Medicare and private health insurance may cover some home care costs, though nonmedical care is generally not covered. Check with your health plan.
  • Long-term care insurance may cover personal care and homemaker services.

How to find them:

  • Ask your doctor or other healthcare professional, family, and friends to recommend home care services in your area.
  • Use an online tool such as the Home Care/Hospice Agency Locator tool from the National Association for Home Care and Hospice.

Home Health Care Services

Home health care aides are skilled, licensed medical professionals who come to your home and help you recover from a hospital stay, illness, or injury. Aides provide skilled nursing care, physical, occupational, or speech therapy, and other medical services coordinated by your doctor. You need a doctor’s order for home health care services.

What to know about costs:

How to find them:

  • Your doctor, health care professional, or hospital discharge social worker can give you a list of agencies that serve your area.
  • Use the Home Health Compare tool from Medicare.gov.
  • Contact the Eldercare Locator or call 1-800-677-1116.

Tips for Finding and Hiring In-Home Care Services

Some care services are very good; others are not. You should get as much information as possible about a service before you sign an agreement. Ask providers for references from people who have used their services. If possible, check for any complaints filed against a service. You can also check with community, county, or State agencies that regulate health services or contact the Better Business Bureau in your area.

Here are some questions you might ask before signing a care agreement:

  • Is your service licensed and accredited?
  • What is the cost of your services?
  • What is included and not included in your services?
  • How many days a week and hours a day will an aide come to my home?
  • Is there a minimum number of hours required?
  • How do you check the background and experience of your aides?
  • How do you train your aides?
  • Can I get special help in an emergency?
  • What types of emergency care can you provide?
  • Whom do I contact if there is a problem?

For more information about home-based long-term care, visit What Is Long-Term Care?

Meal Services

Meal services bring hot meals to the person’s home or your home. The delivery staff do not feed the person.

What to know about costs:

  • The person with Alzheimer’s must qualify for the service based on local guidelines.
  • Some groups do not charge for their services. Others may charge a small fee.

How to find them:

Adult Day Care Services

Adult day care services provide a safe environment, activities, and staff who pay attention to the needs of the person with Alzheimer’s in an adult day care facility. They also provide transportation. The facility may pick up the person with Alzheimer’s, take him or her to day care, and then return the person home. Adult day care services provide a much-needed break for you.

What to know about costs:

  • Adult day care services charge by the hour.
  • Most insurance plans don’t cover these costs. You must pay all costs not covered by insurance.

How to find them:

Respite Services

Respite services provide short-term care for the person with Alzheimer’s at home, in a healthcare facility, or at an adult day center. The care may last for as short as a few hours or as long as several weeks. These services allow you to get a break to rest or go on a vacation.

What to know about costs:

  • Respite services charge by the hour or by the number of days or weeks that services are provided.
  • Most insurance plans do not cover these costs. You must pay all costs not covered by insurance or other funding sources.
  • Medicare will cover most of the cost of up to 5 days in a row of respite care in a hospital or skilled nursing facility for a person receiving hospice care.
  • Medicaid also may offer assistance. For more information on Medicare and Medicaid, see Paying for Care.
  • There may be other sources of funding in your State. Visit the ARCH National Respite Locator for more information.

How to find them:

Geriatric Care Managers

Geriatric care managers make a home visit and suggest needed services. They also can help you get needed services.

What to know about costs:

  • Geriatric care managers charge by the hour.
  • Most insurance plans don’t cover these costs.
  • Medicare does not pay for this service.
  • You will probably have to pay for this service.

How to find them:

Counseling from a Mental Health or Social Work Professional

Mental health or social work professionals help you understand your feelings, such as anger, sadness, or feeling out of control and overwhelmed, and help you deal with any stress you may be feeling. They also help develop plans for unexpected or sudden events.

What to know about costs:

  • Professional mental health counselors charge by the hour. There may be big differences in the rates you would be charged from one counselor to another.
  • Some insurance companies will cover some of these costs.
  • Medicare or Medicaid may cover some of these costs.
  • You must pay all costs not covered by Medicare, Medicaid, or insurance.

How to find them:

  • It’s a good idea to ask your health insurance staff which counselors and services, if any, your insurance plan covers. Then check with your doctor, local family service agencies, and community mental health agencies for referrals to counselors.

Hospice Services

Hospice services provide care for a person who is near the end of life and is no longer receiving treatment to cure his or her serious illness. Hospice services keep the person who is dying as comfortable and pain-free as possible in the person’s home or a hospice facility. They also support the family by providing end-of-life care. You can stop hospice services at any time if you wish to receive curative treatments again.

What to know about costs:

  • MedicareMedicaidVeterans Health Administration, or private insurance plans may cover all hospice costs.
  • If you receive hospice services in an assisted living facility or nursing home, you may need to pay room and board. You must pay all costs not covered by Medicare, Medicaid, or other insurance.
  • Some nonprofit organizations and hospice providers help cover hospice costs on a sliding scale for low-income patients.
  • Once you’ve chosen to receive hospice services, any medicines or treatments intended to cure your termina

 

Taking Care of Yourself: Tips for Caregivers

Taking care of yourself is one of the most important things you can do as a caregiver. Make sure you’re eating healthybeing active, and taking time for yourself.

Dealing with Feelings of Frustration and Guilt

Caregiving, especially from a distance, is likely to bring out many different emotions, both positive and negative. Feeling frustrated and angry with everyone, from the care recipient to the doctors, is a common experience. Anger could be a sign that you are overwhelmed or that you are trying to do too much. If you can, give yourself a break: take a walk, talk with your friends, get some sleep—try to do something for yourself.

Although they may not feel as physically exhausted and drained as the primary, hands-on caregiver, long-distance caregivers may still be worried and anxious. Sometimes, long-distance caregivers feel guilty about not being closer, not doing enough, not having enough time with the person, and perhaps even feeling jealous of those who do. Many long-distance caregivers also find that worrying about being able to afford to take time off from work, being away from family, or the cost of travel increases these frustrations. Remember that you are doing the best you can given the circumstances and that you can only do what you can do. It may help to know that these are feelings shared by many other long-distance caregivers—you are not alone in this.

Taking Care of Yourself

Share this infographic and help spread the word about caring for yourself while caring for others.

Taking care of yourself if one of the most important things you can do as a caregiver. Make sure you are making time for yourself, eating healthy foods, and being active. Consider joining a caregiver support group, either in your own community or online. Meeting other caregivers can relieve your sense of isolation and will give you a chance to exchange stories and ideas. If you need help, don’t be afraid to ask for it.

Caregiving is not easy for anyone—not for the caregiver and not for the care recipient. There are sacrifices and adjustments for everyone. When you don’t live where the care is needed, it may be especially hard to feel that what you are doing is enough and that what you are doing is important. It often is.

CINTAA Elder care shares useful information regarding healthcare on weekly basis. The post is only for information purpose only. Please check with your health care professional before using this information. To keep yourself updated with many other health tips, stay with us. We provide certified caregivers for seniors at home. If you need any help regarding eldercare, please feel free to call us today at 561-963-1915.

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