FAQ's of Caregiving

The most frequently asked questions about caregiving--and the answers you need

By Denise M. Brown, Editor and Publisher, Caregiving.com

1. Am I up to this? And, what if I'm not?

Everyone has his or her limits as a caregiver. It's important to respect yours. I often remind family members of their responsibility to an aging relative: You are responsible for providing a safe, healthy living environment--wherever that may be: your home, their home, the nursing home. It's impossible to do it all so look to the community, family, friends, health care professionals and volunteers to fill in the voids. We took a closer look at resiliency in these articles. You also may find it helpful to write your own Caregiving Mission Statement.

2. How much will this cost?

A large misconception exists that the government, through Medicare and/or Medicaid, will pay for care of an aging relative. Medicare, the federal insurance program typically for person's 65 and over, has very limited benefits to cover long-term care needs, either in a home or in a nursing home. Medicaid, a state-funded program typically for low-income persons, pays for the costs of in-home and nursing home care--as long as an aging relative's income is low enough to qualify for benefits. (If you have a concern about your parents--one parent is the family caregiver, the other, the care recipient--then contact you local Area Agency on Aging to learn about your state's Spousal Impoverishment Program. Assets can be protected in order to provide for the caregiving spouse.)

The majority of costs associated with a chronic illness or disability are assumed by the family and/or the care recipient and/or private insurance (including long-term care insurance). According to our latest annual family caregiver survey, about 50% of respondents spent as much as $500 per month on services (home health, medications, supplies).

Many at-home care recipients depend on help from home health aides, trained professionals who assist with personal care, such as bathing and dressing, and provide light housekeeping, prepare meals and sometimes provide transportation. Home health aides can be hired through a home health agency or privately, by the family. According the U.S. Labor Department, home health aides, on average, earn $8.95 per hour. The cost of hiring a home health aide through an agency will be higher, somewhere in the range of $12 to $20 per hour.

Many families prefer to hire a home health aide privately as a way to save costs. If you opt for this, check with your (or your care recipient's) homeowners's insurance agent to ensure adequate coverage of an in-home employee and with the IRS about tax implications. Also, consider a hiring an agency that provides background checks. In addition, be sure you have a back-up plan in case the aide becomes ill, quits or just doesn't work out. For more information, visit Your Contingency Plan.

You can purchase monthly agreements from companies that offer medication reminders and personal emergency response systems. These services can range in cost from $10 to $90 per month or higher, depending on the service plan.

Adult day services may cost from $60 per day and higher; sometimes transportation is included in the cost. Meals on Wheels are available on a sliding fee scale, depending on care recipient's income level. Each community (local or state level) offers myriad services, usually available on sliding fee scales.

The average cost of semi-private room in a nursing home is $183 but much depends on geographic location and care needs. Average length of stay in a nursing home is 2 and 1/2 years. However, many older adults use nursing homes for temporary stays, to recover from a hospitalization (Medicare provides coverage for a short-term rehab stay) or for placement so the family can take a break.

Room and board in an assisted living facility (an aging relative lives in an apartment-like setting but can still receive assistance with personal care) may cost from $20,000 annually and upward. Residents often occur additional costs depending on their level of care.

In addition to the cost of room and board in nursing homes and assisted living facilities, care recipients also assume the costs of medications, supplies and personal care items.

Visit The Caregiving Years section of our site for links to all these resources and more. In addition, check with an eldercare financial planner who can help you explore ways to finance care, through reverse mortgages, living trusts, and other options. Managing The Finances also may help.

3. How long can I expect to do this?

In our most recent survey, family caregivers told us that they expect to be a caregiver for at least five years. You can read more from our latest Family Caregiver Survey Results at this page: 2004 Family Caregiver Survey

  Because this is a long-term commitment, planning for the future is key. Take into account your care recipient's financial resources, your emotional resources and the community's resources. All these connect to make caregiving doable.

4. Who can I contact for help?

The ElderCare Locator can refer you to the Area Agency on Aging in your area (or your care recipient's area): 800-677-1116. In addition, you can contact your house of worship, the local United Way (an organization that funds programs that may help you), your state's department on aging, Easter Seals, National Family Caregivers Association (1-800-896-3650) and Children of Aging Parents (1-800-227-7294). Sometimes, your township (or your care recipient's) will offer services that can help, including telephone check-in, emergency response or transportation. You also can visit BenefitsCheckup to learn about programs and services that can help.

In addition, our site provides hundreds of externals links to web sites and organizations. You can review our links at The Caregiving Years section of our site.

5. How do I know when my family member can no longer live safely at home?

I'm asked this question regularly: How do I know when it's time to make a change?

I urge family caregivers to put systems into place which help to avoid a crisis. Personal emergency response systems, adult day services, home health aides, telephone check-in services, Meals on Wheels, volunteer programs all help keep your care recipient safe.

In addition, AARP has checklists available to help you make changes in your care recipient's living environment (eliminating throw rugs, improving lighting, modifying the bathroom with grab bars and bath chairs): http://www.aarp.org/universalhome/home.html

Often, a care recipient will resist changes. Usually what's behind the resistance is fear. Respect and recognize that these changes will be difficult for your care recipient. Start slowly, involve your care recipient, when appropriate, in any discussions and decisions, ask for your care recipient's commitment to try any services for a month. Allow your care recipient to vent, without judgments or recriminations. Reassure your care recipient that these services will keep him or her at home, safely-- that you want to work together to achieve this goal.

If your care recipient still refuses, then back off, at least for the time being. However, don't give up. Contact local organizations (such as home health agencies, Meals on Wheels, assisted living facilities, rehab centers) for information about their services, costs and availability. In case a crisis occurs, you'll have the information you need about community services in order to make good decisions about your care recipient's future. We also explored the answer to the question, When is it time for nursing home placement?

6. I don't like the aide (or volunteer or nurse or companion) that the agency sends. Am I stuck?

Nope! Call the agency and speak with the social worker or supervisor. Explain your concerns and ask for suggestions. If you believe the situation cannot be resolved with the current aide, ask for a different aide. Personality conflicts are not uncommon and the supervisor will work with you to find an aide that best meets your needs--and your care recipient's.

  For more information about using a home health aide, visit these weekly tips:
Weekly Tip No. 3, Weekly Tip No. 2 We offer tips on working well with health care professionals in these series of articles.

7. What is respite care?

Respite care refers to services used by a family caregiver in order to take a break. Respite care may be offered through a local organization (Lutheran Social Services, based in suburban Chicago, has a volunteer program structured to give the family caregiver a break) or through a state-funded program (New Jersey and Pennsylvania have respite care programs). Or, respite care could refer to a short-term placement in a nursing home for the care recipient while the family caregiver takes a much-needed vacation.

  For more information about organizations and agencies that offer respite care, visit this weekly tip: Weekly Tip No. 1

  Use respite care regularly, so that when you really need respite care (to take a much needed two-week vacation) you'll be confident in the providers and staff who will care for your care recipient. You'll relax and enjoy your time away when you can trust those caring for your care recipient.

8. This is so depressing! I didn't realize I would feel this way. What can I do?

Often, family caregivers overlook an important part of their experience: the grief they feel at the losses suffered by the care recipient, by the family and by themselves.

  It is depressing, which is why taking regular breaks is important. It's also critical to maintain some hobbies and interests you enjoy. Rejuvenating yourself on a regular basis will help you manage the experience. You may find some helpful insights in this series, "Taking The Edge Off Socializing".

  These weekly tips can help you manage the bad days of caregiving:
Weekly Tip No. 22, Weekly Tip No. 28, Weekly Tip No. 25 We also devoted a series of articles to depression. We also asked family caregivers for their thoughts on this question: Are caregiving and happiness mutually exclusive?

  In addition, finding support will help you unburden yourself, which will lighten your load. You can join a online support group (for more information, visit Join a Support Group!) and/or a group in your community. A member of our one groups told her brother she had joined a support group. He responded: A problem shared is a problem halved. !

  You can also contact your Area Agency on Aging or your house of worship for lists of groups in your area. Or, call Children of Aging Parents, which sponsors a network of groups, at 800-227-7294.

9. How can I get help from other family members?

Often, family caregivers feel abandoned by family members, usually siblings, the very people they expected to help. So, how do you get your five brothers and sisters to help out?

  Recognize that people are caregivers in different ways. Your brother the CPA breaks out into a rash at the idea of visiting your mother in the nursing home. Suggest that he call her every Sunday afternoon, or write letters. Or, ask him to manage her financial affairs. Your sister is conveniently busy every time you ask her to spell you so you can take a break. Suggest that your sister help offset the costs of the companion sitter or home health aide you hire.

  Should you force them to help? No. Be specific in your requests, but never demand that help be given. If your siblings refuse your requests for help, accept it. But, don't accept the idea that you are alone. Look to the community for help and for support.

  You may find that the caregiving experience changes you--and your relationships; we explored these changes in a series of articles. These pages offer ideas on how to work well with other family members:
Weekly Tip No. 14, Weekly Tip No. 19, Ask Denise No. 36 and Ask Denise No. 34

10. What advice can other family caregivers offer?

Read what advice family caregivers would offer new family caregivers.

11. Who can I count on for help?

Family caregivers often find that the health care system, the family system, the social service system AND the care recipient present huge obstacles in finding, keeping, providing and affording quality care. Recognize that caregiving may not be easy and that perfect solutions do not exist. Compromises do, though. Work within the system's limitations. Continue to ask for help. Keep an open mind about which services and organizations may be helpful. Listen to your care recipient's suggestions. And, accept help in whatever form it arrives.

12. What are my obligations?

You are obligated to provide a safe and healthy living environment for your care recipient. And, you are obligated to protect your care recipient from abuse--physical, emotional or financial.

  A durable power of attorney for health care, in addition to a living will, is a powerful legal and health care document. If you do not have this document for an aging relative, consult an eldercare attorney as soon as possible. A durable power of attorney for health care allows a responsible party to make financial and health care decisions on behalf of a family member or friend if that family member or friend is no longer able to make such decisions. Read about making health care decisions on behalf of a care recipient.

13. My care recipient won't cooperate!

Sometimes, uncooperative care recipients are just asserting their opinions. Listening to the gripes and complaints may improve your care recipient's disposition. And, if you listen to their gripes, you may learn some new approaches and solutions.

  For instance, your care recipient gripes that her noon-time meal, delivered by Meals on Wheels, arrives cold every day. You may not want to hear this complaint; knowing that a Meals on Wheels volunteer delivers a noon-time meal to your care recipient lessens your guilt while you're at work. Thinking that your care recipient receives a cold meal just increases the guilt you feel! So, rather than acknowledging that your care recipient may have a justified complaint, you choose to downplay it: "Oh, Mom, you expect too much". Or, "Mom, it only costs $2.50. What do you expect?"

  Instead, try listening and accepting the gripe, then calling the agency to pass along the complaint. The agency probably can make some simple changes (perhaps a new volunteer forgets to include hot packs in the coolers that store the meals) that will greatly improve the experience your care recipient has with Meals on Wheels. What a benefit for both of you!

  These weekly tips offer ideas on how to help your care recipient feel helpful, how to focus on the positives of your relationship and how to accept the relationship for what it is:
Weekly Tip 16, Weekly Tip 21, Weekly Tip 35. We also devoted a series of articles to this topic. And, we delved into determining how a care recipient's past determines the present.

  And, sometimes an uncooperative care recipient is simply displaying symptoms of his or disease, such as a dementia. In these cases, keep in mind that the disease, not the person, is causing problems. Learn about the disease and how to cope with the behaviors associated with it by contacting the local chapter of the Alzheimer's Association.

14. How do I do this (caregiving) and take care of myself?

We often "guilt" family caregivers into self-care with this simple question: If you don't take care of yourself, who will take care of your care recipient?

  The only way you'll effectively manage this experience is if you take time for yourself, daily, weekly, monthly and yearly. When you take regular breaks, you can cope with the stresses, the decisions and the responsibilities. Otherwise, the situation can become unbearable--for you, for your care recipient, for your family.

  You'll find some reminders on how to take care of yourself at this weekly tip:
Weekly Tip No. 26

15. I'm upset with the nursing home. I don't believe the staff provides quality care. What can I do?

Always begin by addressing your concerns with the charge nurse, the Director of Nursing and the Administrator at the facility. Explain your frustrations; ask what they can do to improve the situation. Ask for a timeline: When can you expect to notice changes? Tomorrow? In 36 hours? Next week?

  Follow up with these three persons regularly. If you do not feel the staff adequately addresses your concerns, then contact the nursing home ombudsman in your area. (Your state's department on aging can direct you to the proper department and phone number.) The ombudsman will represent your care recipient in ensuring the nursing home provides quality care.

  In addition, attend the care conference meetings offered quarterly at the nursing home. Family members are encouraged to attend--and this meeting is a great place to communicate concerns with the interdisciplinary team: the charge nurse, the social worker, the activities director.

  Finally, be an active voice and a familiar face to the staff. Become an informed advocate on behalf of your care recipient. Ask questions, share concerns and, whenever possible, offer accolades. The staff will view you as a pleasant and welcome addition to the facility!

16. I feel so guilty--about everything.

Your care recipient will make you feel guilty. Which makes it only worse, as you already carry around enough guilt. How do you keep it at bay?

  Keep your perspective. Consider, whose problem is this? Does your care recipient expect you to make him or her happy? That's not your job. Does your spouse badger you about the time you spend with your care recipient? Try to work out a compromise, so that you have a workable schedule for your spouse, your care recipient and yourself. And, remember, you can only control yourself, your reactions, your words and your feelings. The rest is up to everyone else.

  Asking for, and receiving, help also can help minimize your guilt. The wider you cast your net, the more help you receive, the better your caregiving experience will be for you and your care recipient.

How helpful was this article?

Looking for an article on a particular topic, such as getting along with your care recipient,
managing your guilt and anger, or coping with your uninvolved siblings? You can search our site here: