As “baby boomers” begin to reach age 65, more and more families are facing the difficult task of caring for older, chronically ill or disabled family members. According to the National Alliance for Caregiving, 48.9 million caregivers (21.2 percent of the adult population) provide unpaid care to an adult family member or friend. And because the majority of caregivers are female, this issue is a particularly important one for women.
The term “caregiving” is most often linked with elderly parents and in-laws, and about 70 percent of adults who require care are indeed over age 50. The rest are younger than 50 and include children with special needs and adults with serious chronic or mental illnesses.
Who Are the Caregivers?
The National Alliance for Caregiving (NAC) estimates that family members provide 86 percent of all care received by older adults. Over one-third (36 percent) take care of a parent. The average caregiver is just over 49 years old, and most caregivers are women. However, an increasing number of caregivers—34 percent—are men, so care giving is not purely a women’s issue.
The NAC reports that seven out of 10 caregivers are employed on top of the 20.4 hours a week they spend giving care, and 46 percent of them work full-time. As a result, two-thirds report going in late, leaving early or taking time off during the day to deal with caregiving issues, and 20 percent have taken a leave of absence.
Still, keeping a sick or disabled spouse, relative or friend at home is the first choice for many family members—even those who can afford other options, such as a nursing home.
Getting Started by Finding Help
If you are tackling the caregiving role for the first time, you may be surprised to learn that a great deal of help is available. A good starting point is the Eldercare Locator, a service of the Administration on Aging at the U.S. Department of Health and Human Services. The Eldercare Locator, can connect you with a broad range of services in your community, such as transportation, home-delivered meals, legal services, social opportunities and respite care. All you need is the zip code of the person needing care or call 800-677-1116.
Another source of referrals is the social worker or geriatric care manager employed by the aging services, hospital, nursing home or hospice organization involved in the caregiving. For private help, contact the Aging Life Care Association at 520-881-8008. It’s also important to communicate with the appropriate health care professionals. And be sure to contact the local chapter of an advocacy group representing people who have the condition you’re dealing with—for example, the Alzheimer’s Association, the Multiple Sclerosis Association of America, the American Cancer Society, the American Heart Association or other advocacy group.
There are many excellent legal, financial and geriatric care management services available free online. Some places to start include the Family Caregiver Alliance,Caring.com and the Alzheimer’s Association. The more educated you are, the easier your job will be.
As you gather information and assume more responsibility, try to include your family member or friend in the decision-making process whenever possible. Does your mother want to remain in her home as long as possible? If relocation is necessary, does she have a preference as to where—or with whom—to live? You’ll need to factor in your relative’s condition. Is she in a wheelchair? Does he require a walker? The choice of residence—your home, her home, an assisted living facility, a skilled nursing or rehabilitation facility—may be dictated by such mobility concerns.
States are starting to provide more caregiving services and support. They receive funding for these services from the National Family Caregiver Support Program. Contact your state Division of Aging office, your area Agency on Aging office or your state Elder Affairs office for more information.
Legal and Financial Issues
You may want to consult an attorney, who specializes in powers of attorney, estate planning, Medicare and Medicaid issues, insurance disputes and related concerns. But remember: These aren’t just concerns for the elderly; you need to handle these issues even if your family member is a young adult. Among other things, the attorney can help you execute two important legal documents:
Durable power of attorney. At some point, your family member or friend may be unable to make his or her own decisions. Durable power of attorney appoints a trustee to make financial and legal decisions on his or her behalf. One caveat: The person must be competent to assign power of attorney. So, if your relative or friend already suffers from serious dementia, it’s too late. Then it is necessary to seek guardianship or other ways to legally make decisions for the person.Powers of attorney may not necessarily prevent your relative from using bad judgment and acting on their own, but it does permit a surrogate to act in their behalf.
Durable power of attorney for health care. Also called a health care proxy ormedical power of attorney, this process enables your relative or friend to select someone to make health care decisions on his or her behalf. The proxy goes into effect only when the patient can no longer make such decisions; until then, he or she must give consent for medical treatment.
Money and paperwork
How much money is available for the care of your friend or family member? What are the sources of regular income? Disability insurance? Long-term care insurance? Pensions? Social Security? Veterans’ benefits? You may have to do some detective work to discover where the financial documents are kept. Look for bank and brokerage statements, wills, annuity information, insurance policies, pension information and other income-related records.
Review papers—ideally with a banker, lawyer, accountant, insurance agent or financial planner who knows your family. Even if you opt to handle the finances yourself, it’s important to get a professional’s advice on the best way to proceed. The documents will paint a clearer picture of your relative’s financial situation and determine eligibility for economic assistance. Here are some strategies for handling the financial end:
If you don’t obtain power of attorney, you (or a trusted relative or friend) should at least become a joint signer of your family member’s bank accounts. You may want to talk to the bank about becoming authorized to draw checks on his or her account.
If the person you are caring for doesn’t live with you, ask creditors to notify you if a payment is missed. People with dementia are just as likely to overpay. It’s best to have automatic withdrawals and online bill payment or have key bills sent to another family member.
Ask your insurance provider or financial planner about long-term care insurance. Long-term care insurance, partially and for a limited time, pays for some home care and other alternatives to nursing homes under specific conditions so people can have the care they need, where they want it. Long-term care insurance helps people have more options and choices—because both home care and nursing home care are expensive. By the time the person is over 65, frail or disabled, the premiums are prohibitively expensive, and the benefits won’t be available immediately.
Use direct deposit whenever possible. Some payments—such as Social Security—may already go directly to the bank.
Keep important documents together in a safe and accessible place.
Communication is Key
If your relative is older or their condition is progressive and is expected to get worse over time, you need to bring up some difficult questions. You may want to include a health care professional, other family members or a clergy member in the discussion. Here are some questions you might want to explore:
What type of treatment does your family member want? Are any treatments unacceptable?
Does your relative have an advance directive?
Does your relative wish to be resuscitated if breathing stops or be kept alive by machines?
Where would your relative prefer to spend his or her final days?
The patient’s desires should be spelled out in an advance directive after discussions with the family. It’s advance care planning, not just advance directives, that makes a difference. The advance directive can include a living will, a health care proxy and a do-not-resuscitate (DNR) order. A living will expresses the patient’s wishes regarding end-of-life medical treatment; unlike a health care proxy, however, it may not be legally enforceable. A DNR order instructs medical personnel not to use resuscitative measures, such as cardiopulmonary resuscitation. Federal law requires facilities accepting Medicare or Medicaid to provide information about advance directives.
Every state recognizes advance directives, but laws vary when it comes to how they are carried out. It helps to talk to an attorney about your state’s specific requirements, although you can complete the forms without consulting one.
Talking to Medical Professionals
Designate one person as the primary contact with your family member’s health care professionals. Assuming that you become the point person, consider these strategies from the NAC and other experts:
Know who to talk to. List the name, title, responsibilities, phone numbers and best time to call for all health care professionals involved in your relative’s care. This way you’ll know who to call in a particular situation.
Track the diagnoses. List each medical condition your loved has been diagnosed with, along with the corresponding health care professional and medications.
Ask questions. Don’t leave a conversation with a health care professional with questions in your mind. Keep a running list of questions to ask during your relative’s next medical visit.
Dealing with Daily Tasks
Dressing, bathing, toileting––tasks we take for granted––may take a large portion of your day. To cope, try some of these strategies from the Alzheimer’s Association and the Family Caregiver Alliance:
Take into account your relative’s tastes, even if they seem odd to you. For instance, someone with Alzheimer’s disease may want to wear the same outfit every day. If so, purchase several identical outfits. You should also consider photographing your relative in this clothing, so if he or she wanders away, you can give the police a more precise description. Register with the Medic Alert + Alzheimer’s Association Safe Return program. Always keep a current photograph.
Buy comfortable, washable, easy-to-remove clothing. Look for clothes with Velcro closures, snaps and elastic waistbands. When helping your relative dress, don’t rush; that only creates stress. If he or she is having trouble dressing, lay out the clothing in the order that it should be put on. Limit choices in the closet to items that are appropriate to the season and weather.
Medication and Treatment
Ask nurses to teach you how to take blood pressure, give injections, treat wounds and bedsores and carry out other nursing tasks you may need to do. Or consider hiring a home nurse or health aide. There are many online skills training programs for families on personal care and medication management. Family Caregiver Support Programs in every state sponsor free classes for family caregivers and so does the Red Cross.
Use one pharmacy to avoid adverse drug interactions.
Let all the health care professionals, including the pharmacist, know which medications and doses your family member is taking. Periodically review all medications with them, including over-the-counter drugs, vitamins and herbs.
Know when and how to administer medication and what side effects to expect.
Food Preparation and Eating
If your relative still prepares his or her own meals, take these steps for added safety:
Replace knobs with levers for door handles and faucets.
Install large, easy-to-grasp handles on cabinet doors.
Place frequently used food and utensils within reach.
Put the fire extinguisher within easy reach of the stove.
Create a work area where he or she can sit to prepare food.
If you are preparing meals:
Ask a health care professional or dietitian for nutritional advice. Should your relative avoid certain foods? Does he or she need a multivitamin or a low-salt diet?
When possible, serve favorite foods. You may need to adjust the seasoning; some medications may affect the sense of taste. In other cases, seasoning may cause stomach upset.
Make sure your relative gets plenty of water––about eight glasses a day. However, if he or she has problems with fluid retention or heart failure, talk to the health care professional about how much water is appropriate.
Refusal to eat could stem from mouth problems, such as irritated gums caused by ill-fitting dentures. If you see signs of irritation or abrasion, consult a dentist.
If dexterity is a problem, provide two-handled cups and tumblers with textured surfaces.
If your relative has vision or cognitive problems, use the same place setting at each meal to help him or her find utensils, glasses and napkins. Use contrasting colors and serve or feed one food at a time if the person has cognitive problems.
Install grab bars for the tub or shower, toilet and near the sink.
Place non-slip adhesive strips on the tub or shower floor.
Set the water heater to about 110 degrees to prevent scalding.
Put a night light in the bathroom.
Remove obstacles and tripping hazards, such as cords and throw rugs.
Have plenty of bath towels within reach.
Install a bathing seat, if necessary, and a hand-held shower nozzle for use while sitting down.
Ask your relative’s health care professional about programs to improve bladder andbowel function. In many cases, incontinence can be successfully treated and prevented. It is not inevitable with old age.
Buy a portable toilet at a medical supply store and keep it near your relative’s bed if needed. These are good if there is a problem with mobility or urgency, but every older person does not automatically need one, and it may even create a greater sense of helplessness.
If your relative has dementia, remove anything from the bedroom or living areas that may be mistaken for a toilet, such as a wastebasket or standing plant.
Establish a toileting routine (take him or her to the bathroom every two hours, for example).
According to the Yale Program on Aging, the rate of falls among those 65 and older is about 30 percent, and among persons 80 or older, approximately 50 percent. About 10 percent of those who fall sustain a serious injury, and such injuries can lead to mental and physical disability.
To minimize the risk of falls, remove or remedy such hazards as slippery showers, loose throw rugs and obstructed pathways. Monitor medications that cause fatigue or dizziness, and ensure that your relative’s shoes provide secure support. Regular vision checks are also important. If your relative uses a cane, a walker or a similar device, make sure he or she has been taught how to use it correctly. If a floor-level shower can be made available, permitting the person to walk or wheel into the area to bathe, bathing-related falls may be prevented. You also need to continue working on keeping your relative mobile and strong by ensuring they get regular exercise.
Dealing with Dementia
Use short, simple sentences, and speak clearly and slowly. Use a reassuring voice, but don’t condescend.
Turn off the TV or radio when you are trying to talk.
Repeat yourself as often as needed, adding encouraging gestures, visual demonstrations or other cues.
Encourage your relative to talk about people, places and events he or she remembers.
Don’t argue or interrupt.
Overestimate the time your relative will need to spend on any task.
Limit choices—offer two acceptable alternatives, but no more. Say, “Let’s go,” rather than “Would you like to go?” or, “If it’s OK with you.…”
Reduce distractions and noise.
Keep clutter to a minimum.
Don’t plan any complicated activities for late in the day or the evening.
Perform regular tasks in the same order each day.
If you think your family member can no longer drive safely, have this ability assessed by a health care professional. If your fears are confirmed, you can keep your relative away from the car while still maintaining his dignity by using some of these strategies from the Alzheimer’s Association:
Ask a health care professional to write a “do not drive” or “retire from driving” prescription.
Keep control of the car keys.
Remove the distributor cap or battery.
Park the car in a different place—for instance, in a neighbor’s driveway.
Here are some tips from AARP and elsewhere for organizing assistance:
Assess your needs. List tasks that need to be done daily, weekly and monthly. If possible, get input from the person you’re taking care of.
Match tasks with volunteers. If someone enjoys cooking, ask her to prepare one meal a month. Someone else might enjoy spending time with your family member to give you some respite. Get commitments from volunteers and write them down. Try CaringBridge or Lotsa Helping Hands to organize family support online.
Identify tasks that can be done long distance. Out-of-town relatives can help with finances, call your relative regularly or deal with insurance companies, hospitals and attorneys.
Include backups. When possible, have a list of people who can fill in when the designated person can’t fulfill his or her assigned role.
Accept one-time offers. If people want to help but don’t have much time, suggest that they pick up groceries while doing their own shopping, drop by for a visit, help with the yard work or drive your relative to a social event––whatever you need done.
Caring for Yourself
Caregiving is, at times, stressful, and many studies show that stress can lead to heart problems, stomach problems, headaches and other physical problems. And research has shown that stress can weaken the immune system, and immune systems of stressed elderly caregivers are certainly no exception.
Here are some strategies for looking out for you. Many have been suggested by such organizations as the Mayo Clinic, NAC, AARP, the Rosalynn Carter Institute for Caregiving and the Alzheimer’s Association:
Join a support group. This gives you an opportunity to vent, share ideas and learn new caregiving strategies.
Keep a journal. Keeping written track of your feelings, emotions and actions helps put them in perspective––and the writing process can be a great release.
Identify your own “hot buttons.” Which tasks create the most anxiety for you? Can you delegate these tasks? If not, develop responses before the situation arises again.
Stay in touch with friends and keep up with your hobbies and other interests. If religious or spiritual practices are part of your life, continue to follow them.
Stay fit. Regular aerobic exercise—even a brisk walk—can energize you, relieve stress and improve your emotional well-being.
Use stress management techniques. Deep breathing, stretching and meditation can help you relax.
Get adequate sleep. If necessary, talk to your health care professional about overcoming insomnia.
Laugh. Keeping a sense of humor helps you maintain perspective and release pent-up tension.
Eat well. If necessary, ask others to assist with the cooking––you could make that one of the regular tasks on your list.
Take breaks. Ask friends or other family members to handle caregiving duties for a few hours, hire someone to care of your charge for a few hours or consider adult day services programs. Think about short-term institutional care if you need a vacation. Ask the Eldercare Locator for referrals. Short-term respite care is also available through Alzheimer’s Association chapters or area agencies on aging.
Long-term Residential Care
Your options include home health care, assisted living facilities, continuing care retirement communities, nursing homes, and, when the time comes, hospice orpalliative care.
Assisted living. These facilities are designed for relatively independent people who need assistance, but not necessarily skilled nursing care. The staff can assist with personal hygiene and grooming as well as provide limited care during or immediately after an illness. These facilities may be targeted to a certain population––younger residents (such as those with multiple sclerosis or AIDS), Alzheimer’s patients, the mentally ill or the intellectually disabled. Medicaid, Medicare and most insurance generally won’t cover these facilities. However, the Elderly and Disabled Waiver, a part of the Medicaid program, provides an alternative to nursing home care—including services to help a person continue to live safely in his or her home—to eligible older persons and adults with physical disabilities. Check with your state Medicaid office to see if such a program is available in your area.
Continuing care retirement communities. These communities contain several types of living facilities for seniors. They typically include independent living facilities, assisted living facilities and skilled nursing facilities (nursing homes). Residents can move from one type of living arrangement to another, as their needs change. To learn more about continuing care retirement communities, visit the Leading Age website.
Nursing homes. These facilities offer housing plus skilled 24-hour nursing supervision––the same services that assisted-living facilities offer plus nursing care.
Intermediate-care facilities. Sometimes part of a nursing home, these programs provide health services to individuals who can’t live on their own but don’t need around-the-clock skilled nursing oversight.
Medicaid may cover the costs of long-term nursing home care if your relative has no other resources; Medicare coverage is usually limited to the first few weeks of medically necessary care and does not pay for support services for activities of daily living like dressing, bathing and using the bathroom.
Many nursing homes have waiting lists, so inquiring early is wise. Your state or local Agency on Aging can provide advice and information about nursing-home care. They can also put you in touch with the ombudsman program, which advocates for nursing-home residents. Talk to friends who have been in the same situation and gather suggestions. Ask your health care professional if he or she will continue to see your relative in a specific facility.
Tour the facility, and if possible, bring your relative along. Talk to administrators and staff. Ask about what kind of staff are available and the staff-to-resident ratio. Does the facility accept Medicare and Medicaid (Medicare often covers short nursing home stays after an acute episode or hospitalization)? What types of rehabilitative services do they offer? What social activities are available? Does the facility appear to have sufficient staff? Are they friendly and respectful to the residents? Do you smell urineand feces? That may be a sign that the facility isn’t kept as clean as it should be and may indicate staffing problems.
If you have any doubts, ask to see the latest inspection report. Then visit again, unexpectedly. This gives you a chance to see how well staffed the facility is––and a chance to talk to some of the residents and to the nursing assistants, who generally provide most of the care. (Weekends are a good time for such visits, since most of the administrative staff is gone.) Observe resident-staff interactions. Are they friendly, warm, frequent?
Contact your state office of the long-term care ombudsman. The office investigates residents’ complaints. To find your state’s ombudsman, check out the National Long-Term Care Ombudsman Resource Center. Ask about any complaints filed against the facility.
Visit the Medicare website for more information about nursing home inspections. VisitNursing Home Compare to compare quality and performance among all Medicare and Medicaid certified nursing homes in the United States.
Find out if the nursing home is a for-profit or nonprofit facility. A study published in theAmerican Journal of Public Health analyzed data from state inspections of over 13,500 nursing facilities and found that private nursing homes were more likely to provide poor-quality care than nonprofit or public facilities. The major difference between the for-profit and nonprofit nursing homes, according to the study’s lead researcher, is that for-profit nursing facilities have 31 percent fewer staff than nonprofit facilities and tend to be more deficient in their quality of care, quality of life, administrative procedures and record keeping.
Once you select a facility, read the contract completely before signing, and if there is an agreement to sign, have a lawyer review it first.
Hospice is a concept of care designed to provide comfort and support to individuals (as well as their family and friends) who have a life-limiting illness that no longer responds to curative treatment. Hospice is not intended to prolong life or hasten death, but rather to improve the quality of the patient’s remaining life by offering comfort (control of pain and discomfort) and dignity. Hospice also focuses on the emotional, social and spiritual impact of the illness on the patient as well as his or her family and friends. Hospice offers grief counseling before and after the death. Most of the time, hospice care is provided in the home or nursing home.
Be sure a pain assessment has been conducted and, if appropriate, the person has an individualized pain management plan.
Facts to Know
Most of those who need a caregiver are older; 70 percent are over 50. And according to The National Alliance for Caregiving, the average age of caregivers is 49.2.
If your relative suffers from dementia, try to plan most of the activities earlier in the day. As the day wears on, dementia patients often become fatigued and may become more difficult, confused and angry. This phenomenon is called the “sundown syndrome.”
The chronic stress of caregiving can affect the caregiver’s health.
Falls are a common cause of injury among older people. Some falls can be prevented by monitoring medication and continuing to help your relative work on muscle strength and balance.
Elder-lawattorneys handle legal issues affecting the elderly, including powers of attorney, estate planning, Medicare and Medicaid issues, insurance disputes, fraud cases and similar issues.
Powers of attorney must be executed while the individual is still competent.
The care recipient should be given as much autonomy as possible.
Adult day services, respite programs and short-term institutionalization offer needed breaks from caregiving responsibilities.
Medicaid may cover the costs of long-term nursing home care if your relative has no other resources; Medicare coverage is usually limited to the first few weeks of medically necessary care and does not pay for support services for activities of daily living like dressing, bathing, and using the bathroom.
Where can I find information about programs in my community to help me with the caregiving task?The Eldercare Locator can connect you with a broad range of services in your community, such as transportation, home-delivered meals, legal services, social opportunities and respite care. Call 800-677-1116, 9 a.m. to 8 p.m. (Eastern), weekdays, or visit www.eldercare.gov. Additionally, your area agency on aging is a good place to start.
We’re thinking about nursing home care, but it may be months—even years—away. Should I start looking now?Yes. Many of the best facilities have long waiting lists. Starting now gives you a head start on research and allows you to involve your relative.
My mother has several health care providers and is on different medications. How do I find out about possible drug interactions?Put all the medications in a sack and take them to your pharmacist or one of the prescribing physicians. Or make a list of each medication to share with these professionals. (In either case, be sure to include nonprescription drugs and herbal or natural remedies.) Provide each health care professional with a list of medications your relative is taking. And use one pharmacy so the pharmacist maintains a complete record of all the prescribed medications.
Should I join a caregiver’s support group?A support group can provide you with an opportunity to talk with other people who are dealing with many of the same caregiving issues. These groups provide a safe place to receive emotional support and can be a good resource for caregiving strategies. You can learn from other people’s successes and mistakes.
My father doesn’t like me to bathe him, but he won’t take a bath on his own. What should I do?Most people don’t need a daily bath. A sponge bath will often suffice. When you do have to bathe him, respect his modesty. Cover him with a towel, and remember to keep the bathroom and water temperatures at a comfortable level.
I don’t see how I can get everything done. What should I do?Don’t be afraid to ask family and friends for help. Ask for ongoing assistance, such as having a friend of your mother’s take her shopping once a month. List all the tasks that need to be done, and ask each volunteer to commit to one task. You can also look into hiring someone to help with caregiving duties. See if there is a support team or care team network in your area or church or through an end-of-life local coalition.
How is hospice care different from care provided in a hospital or nursing home?Hospice is a concept of care designed to provide comfort and support to individuals (as well as their family and friends) who have a life-limiting illness that no longer responds to curative treatment. Hospice is not intended to prolong life or hasten death, but rather to improve the quality of the patient’s remaining life by offering comfort (control of pain and discomfort) and dignity. Hospice also focuses on the emotional, social and spiritual impact of the illness on the patient as well as his or her family and friends. Hospice offers grief counseling before and after the death. Most of the time, hospice care is provided in the home or nursing home.
My mother has become incontinent. Do we just need to live with it?No. About 80 percent of incontinence can be helped with various treatments available for loss of bowel and bladder control. It’s important that you don’t accept incontinence as inevitable. Much depends on the cause and how aware and alert your mother is. Ask your health care professional about which course is appropriate. In the interim, reminding your mother to visit the toilet every couple of hours can minimize the problem.
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