The most frequently asked questions about caregiving–and the answers you need.
1. Am I up to this? And, what if I’m not?
Everyone has his or her limits as a family 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. 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 a family member. 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 a caree’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 caree–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 caree and/or private insurance (including long-term care insurance). According to a Caring.com report, half of surveyed family caregivers spend more than $5,000 per year on caregiving expenses, .According to Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update from AARP, the average family caregiver for someone 50 years or older spent $5,531 per year on out-of-pocket caregiving expenses in 2007.
Many at-home carees 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 $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 caree’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 caree’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 $222 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 $40,000 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, carees also assume the costs of medications, supplies and personal care items.
A financial planner can help you explore ways to finance care. You’ll also want to get a durable power of attorney for health care and finances for your caree; an elderlaw attorney can help execute this important document.
For the most recent data on costs of care, visit here.
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, with many believing the experience will last 10 years.
Because this is a long-term commitment, planning for the future is key. Take into account your caree’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 caree’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 caree’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.
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 caree safe.
In addition, AARP has checklists available to help you make changes in your caree’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 caree will resist changes. Usually what’s behind the resistance is fear. Respect and recognize that these changes will be difficult for your caree. Start slowly, involve your caree, when appropriate, in any discussions and decisions, ask for your caree’s commitment to try any services for a month. Allow your caree to vent, without judgments or recriminations. Reassure your caree that these services will keep him or her at home, safely–that you want to work together to achieve this goal.
If your caree is not cognitively impaired and 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 caree’s future.
If your caree is cognitively impaired and you worry about his or her safety, then contact ElderCare Locator at 800-677-1116 for a referral your local Area Agency on Aging for help.
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 caree’s.
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 caree while the family caregiver takes a much-needed vacation.
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 caree. You’ll relax and enjoy your time away when you can trust those caring for your caree.
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 caree, 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.
Finding support will help you unburden yourself, which will lighten your load. You can join an online support group and/or a group in your community. 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–another good reason to find support and commraderie among those who will understand.
10. 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 caree 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 caree’s suggestions. And, accept help in whatever form it arrives.
11. What are my obligations?
You are obligated to provide a safe and healthy living environment for your caree. And, you are obligated to protect your caree 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 elder law 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.
12. My caree won’t cooperate!
Sometimes, uncooperative carees are just asserting themselves in order to gain some control in an uncontrollable situation. Listening to the gripes and complaints may improve your caree’s disposition. And, if you listen to their gripes, you may learn some new approaches and solutions.
For instance, your caree 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 caree lessens your guilt while you’re at work. Thinking that your caree receives a cold meal just increases the guilt you feel! So, rather than acknowledging that your caree 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 caree has with Meals on Wheels. What a benefit for both of you!
And, sometimes an uncooperative caree 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.
13. 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 caree?
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 caree, for your family.
Our weekly care plans, just for you and available every Thursday, can help you determine what you want and need each week.
14. I’m upset with the nursing home. 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 caree 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 caree. Ask questions, share concerns and, whenever possible, offer accolades. The staff will view you as a pleasant and welcome addition to the facility.
15. I feel so guilty–about everything.
Your caree 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 caree 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 caree? Try to work out a compromise, so that you have a workable schedule for your spouse, your caree 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 caree. You can listen to podcasts and read tips about managing guilt here.
—The Caregiving Years, Six Stages to a Meaningful Journey, maps out your caregiving experience so you’ll have what you need today and be prepared for tomorrow.
- Step 1: Decide if a Nursing Home Is Necessary (health.usnews.com)
- The New Old Age: Home Health Aides (newoldage.blogs.nytimes.com)