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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 Inter-net. 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 confi-dence 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 assis-tance 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 Alz-heimer'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:
Personal Care: bathing, eating, dressing, toileting, grooming
Household Care: cooking, cleaning, laundry, shopping, finances
Health Care: medication management, physician's appointments, physical therapy
Emotional Care: companionship, meaningful activities, conversation
Supervision: oversight for safety at home and to prevent wandering
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 assess-ments) for little, if any, cost. Another option is hir-ing, for a fee, a geriatric care manager or licensed clinical social worker. (See Resources on page 6 for help in locating someone near you.) These profes-sionals 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.
Step 6. Look at finances. Most people prefer to keep their financial affairs private. In order to best prepare and provide for a loved one's care, however, you will need to gain a full understanding of his or her financial assets and liabilities. This transition can be uncomfortable and difficult. Consider having an attorney or financial planner assist you through the process (see the FCA Fact Sheet, Legal Issues in Planning for Incapacity). Assistance from a trained professional may reduce family tension and, if desired, provide you with a professional financial assessment and advice. Try to include your loved one as much as possible in this process.
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.)
From the Family Caregiver Alliance. Reprinted with permission. All rights reserved. Third-party usage restricted. www.caregiver.org. 800-445-8106.
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