Caregiving

As the U.S. population ages, 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, 44.4 million caregivers (21 percent of the adult population) in 22.9 million (21 percent) households provide unpaid care to an adult family member or friend. Almost 80 percent of adults who require care are over age 50 (average age is 75); the rest are younger than 50 and includes children with special needs. Approximately 65 percent of those receiving care are women, and 42 percent of those women are widows. The National Family Caregivers Association estimates that 43 million Americans are limited in their daily activities.
Who are the Caregivers?
The National Alliance for Caregiving (NAC) estimates that family members provide 83 percent of all care received by older adults. Care is provided both by women (about 60 percent) and men (nearly 40 percent). Caregivers of adults over age 50 are often caring for a close relative such as their mother (34 percent), grandmother (91 percent) or father (10 percent).
Almost every study of caregivers reveals that those who work outside the home are often forced to rearrange work schedules or take unpaid days off to care for their loved ones. A survey commissioned by the U.S. Department of Health and Human Services (HHS) found that 40 percent of caregivers took an average of 17 days off annually without pay-which, on average, translated to $5,393 per year in lost earnings. Another recent study calculated that American businesses lose between $11 billion and $29 billion each year due to employees' need to care for loved ones 50 years of age and older.
Still, keeping a sick or disabled loved one at home is the first choice for many family members-even those who can afford other options, such as a nursing home, the HHS study found.
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 Administration on Aging at the U.S. Department of Health and Human Services. The Eldercare Locator, located at http://www.eldercare.gov/Eldercare/Public/Home.asp, 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. Call 800-677-1116 weekdays between 9 a.m. and 8 p.m. (Eastern).
Another source of referrals is the social worker or geriatric care manager employed by the hospital, nursing home or hospice organization involved in your loved one's care. Contact the National Association of Professional Geriatric Care Managers at 520-881-8008 or visit the website at www.caremanager.org. You can also access numerous private case management organizations via the Web as well. It's also important to communicate with your loved one's health care professionals. And be sure to contact the local chapter of an advocacy group representing people with your loved one's condition-for example, the Alzheimer's Association, the Multiple Sclerosis Association of America, the American Cancer Society, the American Heart Association or other advocacy group that focuses on your loved one's disease or disability. (See Resource section below.) The more educated you are about your loved one's condition and treatment, 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 loved one'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 convalescent home - may be dictated by such mobility concerns.
States are starting to provide more caregiving services and support. They are receiving funding for these services from new legislation, the National Family Caregiver Support Program, which was passed as a part of the Older Americans Act reauthorization and funded in 2001 for the first time. Contact your state Division on Aging office or your area Agency on Aging office for more information.
Knowing your desires and limitations will help you identify resources and choose the best courses of action.
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 loved one 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 in order to assign power of attorney. So, if your loved one 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 or medical power of attorney, this process enables your loved one 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 your loved one's care? What are the sources of regular income? Disability insurance? Long-term care insurance? Pensions? Social Security? Veteran's 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 your loved one's account.
If your loved one 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 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 about their options-because both home care and nursing home care are expensive.
Use direct deposit whenever possible. Some payments-such as Social Security-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 terminal, 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 loved one have an advance directive?
Does your relative wish to be resuscitated if breathing stops or be kept alive by machines?
Where would your loved one prefer to spend his or her final days?
Advance Directives
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 whom to talk to. List the name, title, responsibilities, phone numbers and best time to call for all health care professionals involved in your loved one'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 loved one's next medical visit.
Dealing with Daily Tasks
Dressing, bathing, toileting-tasks we take for granted-may take up a large portion of your day. To cope, try some of these strategies from the Alzheimer's Association and the Family Caregiver Alliance:
Dressing
Take into account your loved one'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. The Geriatric Education Center recommends 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 Alzheimer's Association Safe Return™ program (visit the website at http://www.alz.org/Services/SafeReturn.asp). Also, keep a current photograph along with a heel print on aluminum foil from his/her favorite shoe and a piece of unwashed clothing. This will be very helpful if tracking dogs are called in to locate your family member.
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 clothes closet to items that are appropriate to the season/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 any adverse drug interaction problems.
Let all the healthcare professionals, including the pharmacist, know which medications and doses your family member is taking. Periodically review all medications - including over-the-counter drugs, vitamins and herbs - with them.
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 loved one 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 loved one gets plenty of water-about eight glasses a day. However, if your loved one 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 loved one 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.
Bathing
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.
Toileting
Ask your loved one's health care professional about programs to improve bladder and bowel function. In many cases, incontinence can be successfully treated and prevented. It is not inevitable with old age.
Buy a commode (portable toilet) at a medical supply store and keep it near your loved one's bed. 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).
Preventing Falls
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, 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 loved one's shoes provide secure support. Regular vision checks are also important. If your loved one 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 loved one to walk or wheel into the area to bathe, bathing-related falls also may be prevented. You also need to continue working on keeping your loved one mobile and strong by ensuring they get regular exercise.
Dealing with Dementia
Communication
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 loved one to talk about people, places and events he or she remembers.Don't argue or interrupt.
Daily life
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.
Car safety
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 loved one 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" 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.
To avoid undue upset, substitute the driver's license with another photo ID so that even though the car is inaccessible, the patient still has something approximating a "license."
Getting Organized
Here are some tips from AARP, formerly known as the American Association of Retired Persons, 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 the patient to give you some respite. Get commitments from volunteers and write them down.
Identify tasks that can be done long distance. Out-of-town relatives can help with finances, call your loved one 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, drive your loved one 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. An Ohio State University study found that stress can even weaken the immune system of elderly caregivers.
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 Human Development and the Alzheimer's Association:
Join a support group. This gives you an opportunity to vent, share ideas and learn new caregiving strategies. (Check the resources section for specific links.)
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 loved one for few hours, or consider adult day care services programs. Consider 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 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 patients (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 Disabled and Elderly Waiver, a part of the Medicaid program, is testing paying for some assisted living care and other models of affordable living for people at all income levels. 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 American Association of Homes and Services for the Aging website at http://www.aasha.org.
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 nursing care.
Medicaid may cover the costs of long-term nursing home care if your loved one has no other resources; Medicare coverage is usually limited to the first few weeks of medically necessary care.
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 loved one along. Talk to administrators and staff. Ask about what kind of staff are available and the staff-to-patient 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 urine and feces? It may be a sign that the facility isn't kept as clean as it should be. (And that 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. The office's phone number should be posted in the nursing home; it's also in the phone book. Ask about any complaints filed against the facility. Visit the Medicare website for more information about nursing home inspections. (http://www.medicare.gov/Nursing/AboutInspections.asp).
Find out if the nursing home is a for-profit or non-profit facility. A new study that analyzed data from state inspections of over 13,500 nursing facilities, has found that private nursing homes are more likely to provide poor quality care than are non-profit or public facilities. Results of the study appeared in the September 2001 edition of the American Journal of Public Health. 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.
Consumers can compare quality and performance among all Medicare and Medicaid certified nursing homes in the United States at http://www.Medicare.gov/nhcompare/home.asp.
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 Care
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. About 80 percent 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.