Whether you have moved into the role of caregiver suddenly or gradually over time, you may feel alone, unprepared, and overwhelmed by what is expected of you. These feelings, as well as other emotions—fear, sadness, anxiety, guilt, frustration, and even anger—are normal, and may come and go throughout your time of providing care.
Although it may not seem possible, you will also experience the unanticipated gifts of caregiving—forgiveness, compassion, courage—that can turn hardship into hope and healing.
Each caregiving family faces unique circumstances, but some general strategies can help you navigate the path ahead. As a traveler in new terrain, it is wise to educate yourself as best you can about the landscape and develop a plan accordingly, with the flexibility to accommodate changes along the way. Below are 10 steps to help you set your course.
Step 1. Lay the foundation. Establishing a baseline of information lays the groundwork for making current and future care decisions. Talk with your loved one, family and friends: What was Mom “normally” like? How has she changed? How long has she been forgetting to take her medicine? When did she stop paying her bills? Answers to questions such as these help create a picture of what is going on and for how long. This basic information not only gives you a realistic view of the situation, but also provides an important foundation for professionals who may be called in to make a more formal assessment.
Step 2. Get a medical assessment and diagnosis. It’s very important for your loved one to get a comprehensive medical exam from a qualified health care team that reviews both physical and mental health. Many medical conditions such as depression and medication interactions can cause dementia-like symptoms. Often these conditions can be reversed if they are caught early enough. Additionally, new drug treatments for diseases such as Alzheimer’s and Parkinson’s diseases may be most effective in the early stages of the disease. A confirmed diagnosis is essential in accurately determining treatment options, identifying risks and planning for the future. Take your loved one to a memory disorder clinic, if one exists in your community, to get an accurate diagnosis.
Step 3. Educate yourself, your loved one, and your family. Information is empowering. Talk to doctors, health and social service professionals, and people going through similar experiences. Read books and brochures. Do research at the library and on the Internet. Learn how the disease progresses, the level of care that will be needed, and what resources may be available to help. Keep a notebook and a file folder of information you collect that you can refer back to when needed. Knowledge will increase your confidence and may reduce the anxiety and fear that many of us feel in the face of the unknown. (See the FCA Fact Sheet on Community Care Options for more information about finding help in your community.)
Step 4. Determine your loved one’s needs. Care assessment tools include a variety of questionnaires and tests designed to determine the level of assistance someone needs and establishes their personal preferences for care (e.g., bathing in the morning rather than the afternoon). Each situation is different. While one person in the beginning stages of Alzheimer’s may need assistance with grocery shopping and bill paying, another in later stages may have problems with dressing, eating and hygiene.
Assessments usually consider at least the following categories:
Some hospitals, Area Agencies on Aging (AAAs), city or county agencies, Caregiver Resource Centers, or other government or private organizations offer consultation and assessments specifically designed for older people (called geriatric or needs assessments) for little, if any, cost. Another option is hiring, for a fee, a geriatric care manager or licensed clinical social worker. (See Resources below for help in locating someone near you.) These professionals can be helpful in guiding you to the best care in your area, advise you on community resources, assist in arranging for services, and provide you and your loved one with continuity and familiarity throughout the illness.
Step 5. Outline a care plan. Once your loved one has received a diagnosis and completed a needs assessment, it will be easier for you, possibly with help from a professional, to formulate a care plan—a strategy to provide the best care for your loved one and yourself. It’s a good idea to take some time to think about both short- and long-term needs.
This plan will always be a “work in progress,” as your loved one’s needs will change over time. To start developing a plan, first list the things you are capable of, have time for, and are willing to do. Then list those things that you would like or need help with, now or in the future. Next, list all your “informal supports”—that is, siblings, other family, friends, neighbors—and think about how each person might be able to provide assistance. List any advantages and disadvantages that might be involved in asking these people to help. Write down ideas for overcoming the disadvantages. Repeat the list for “formal” support (e.g., community services, paid home care workers, day programs).
It is important to set a time frame for any action or activities planned. Also, it is wise to have a back-up plan should something happen to you, both for the short-term and the long-term.
Next, develop a list of financial assets and liabilities: checking and savings accounts, Social Security income, certificates of deposit, stocks and bonds, real estate deeds, insurance policies and annuities, retirement or pension benefits, credit card debts, home mortgages and loans, and so forth. It’s best to keep all these records in one or two places, such as a safety deposit box and a home file cabinet, and regularly update them. Keep a record of when to expect money coming in and when bills are due. You may need to establish a system to pay bills—perhaps you’ll need to open a new checking account or add your name to an existing one.
Step 7. Review legal documents. Like finances, legal matters can also be a delicate, but necessary, subject to discuss. Clear and legally binding documents ensure that your loved one’s wishes and decisions will be carried out. These documents can authorize you or another person to make legal, financial and health care decisions on behalf of someone else. Again, having an attorney bring up the issue and oversee any necessary paperwork can take the pressure off of you, as well as provide assurance that you are legally prepared for what lies ahead. (For more information about types of legal documents, see FCA Fact Sheets Legal Issues in Planning for Incapacity, Durable Powers of Attorney and Revocable Living Trusts,and Advance Health Care Directives.)
Other legal documents that you will want to find and place in an accessible location include Social Security numbers, birth, marriage and death certificates, divorce decrees and property settlements, military records, income tax returns, and wills (including the attorney's name and executor), trust agreements, and burial arrangements.
At some point, you may need to determine eligibility for such public programs as Medicaid. It’s helpful to speak with an elderlaw specialist. Information about low-cost elder legal services may be available through the Area Agency on Aging in your community.
Step 8. Safety-proof your home. Caregivers often learn, through trial and error, the best ways to help an impaired relative maintain routines for eating, hygiene, and other activities at home. You may need special training in the use of assistive equipment and managing difficult behavior. It is also important to follow a safety checklist:
Be aware of potential dangers from:
Be sure to provide:
Step 9. Connect with others. Joining a support group will connect you with other caregivers facing similar circumstances. Support group members provide one another with social and emotional support, as well as practical information and advice about local resources. Support groups also provide a safe and confidential place for caregivers to vent frustrations, share ideas and learn new caregiving strategies. If you can’t get away from the house, online support groups offer opportunities to connect with other caregivers nationwide. (See Resources below to find a support group.) Another way to meet others going through a similar experience is by attending special workshops or meetings sponsored by organizations such as the local chapter of the Alzheimer’s Association or Multiple Sclerosis Society.
Step 10. Take care of yourself. Although this step appears last on this list, it is the most important step. Caregiving is stressful, particularly for those caring for someone with dementia. Caregivers are more likely than their non-caregiving peers to be at risk for depression, heart disease, high blood pressure, and other chronic illnesses, even death. Caregivers of persons with dementia are at even higher risk for poor health. The following simple, basic preventative healthcare and self-care measures can improve your health and your ability to continue providing the best care for your loved one.
Practice daily exercise. Incorporating even a small amount of regular exercise into your daily routine can do wonders—it can improve your night’s sleep, reduce stress and negative emotions, relax muscular tension, and increase your mental alertness and energy levels. The latest research shows health benefits from walking just 20 minutes a day, three times a week. Talk to your doctor about an exercise routine that is best for you.
Eat nutritious meals and snacks. Caregivers often fall into poor eating habits—eating too much or too little, snacking on junk food, skipping meals and so on. Much of eating is habit, so make it a point each week to add a new healthy eating habit. For example, if breakfast is simply a cup of coffee, try adding just one healthy food—a piece of fresh fruit, a glass of juice, whole-grain toast. Small changes add up, and can be realistically incorporated into a daily schedule.
Get adequate sleep. Many caregivers suffer from chronic lack of sleep, resulting in exhaustion, fatigue, and low energy levels. Depleted physical energy in turn affects our emotional outlook, increasing negative feelings such as irritability, sadness, anger, pessimism, and stress. Ideally, most people need six to eight hours of sleep in a 24-hour period. If you are not getting enough sleep at night, try to take catnaps during the day. If possible, make arrangements to get at least one full night’s rest each week or several hours of sleep during the day. If the person you care for is awake at night, make arrangements for substitute care or talk to his or her physician about sleep medication.
Get regular medical check-ups. Even if you have always enjoyed good health, being a caregiver increases your risk for developing a number of health problems. Regular medical (and dental) check-ups are important health maintenance steps. Inform your doctor of your caregiving role and how you are coping. Depression is a common and treatable disease. If you are experiencing symptoms such as a lingering sadness, apathy, and hopelessness tell your doctor. (See the FCA Fact Sheet,Caregiving and Depression.)
Take time for yourself. Recreation is not a luxury; it is a necessary time to “re-create”—to renew yourself. At least once a week for a few hours at a time, you need time just for yourself—to read a book, go out to lunch with a friend, or go for a walk. (See the FCA Fact Sheet, Taking Care of YOU: Self-Care for Family Caregivers for more helpful tips.)
Family Caregiver Alliance
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s disease and other debilitating health conditions that strike adults.
Administration on Aging
Caregiver Resource Room
Children of Aging Parents
Faith in Action
First Gov for Seniors
Well Spouse Foundation