Gather Information to Start Your Caregiving Journey
Perhaps your mother has fallen and is hospitalized with a broken hip. Or your spouse has wandered off and gotten lost several times. Or a long-time friend and mentor has lost a lot of weight and rarely seems to leave home.
Caregiving descends upon us in all sorts of ways-through sudden crises or a series of small but unsettling mishaps and warning signs. You may be the only person to step in or you may simply be the linchpin of a large network of family members and friends willing to help. Whatever the situation, you're not sure of the next step. Or even the first step.
Each caregiving situation is unique, of course. The senior's medical history, financial resources, personality, relationships with potential caregivers, proximity to services and other factors all determine the best approach to take. Some may have prepared in advance for declining health and have the necessary documents and services in place; others may have delayed taking action because they always believed they had more time.
Whatever the circumstances, the following guidelines should help you get started. Articles in For Caregivers and our Library address many of these issues in greater detail, and the Resource Finder maintains an extensive database of the health care, medical and advocacy services you will need.
Take a deep breath. Which may be the most important advice you receive throughout the caregiving journey. All along the way, remember to pause from time to time and collect your thoughts. Clear your mind and relax. It may be difficult, but it will help sustain your spirits and prevent you from sinking under the weight of caregiving burdens.
Make sure you know the senior's date of birth and social security number. You will need this information to access many services.
Collect information about medical providers. If you haven't already, gather details about your loved one's physicians and health insurance. Here is some of the information you will need:
Names and phone numbers of the senior's doctors.
Copies of health insurance policies and the front and back of all insurance cards
List of medications and instructions for taking them
Date and results of recent medical exams
Complete health history
Name and phone number of the senior's pharmacy
Learn as much as possible about the medical condition afflicting the senior. Talk to the doctors. Conduct research on the Internet. Seek reference books in the library. Contact organizations and associations that provide information about the disorder. Study the symptoms and progression of the disease so you can anticipate what might come next. Find out about available treatments, experimental research protocols and any ongoing clinical trials.
Call a family meeting. Try to get as many people as possible involved from the beginning. Early input from them will facilitate communication and decision-making down the line. Allow all family members a chance to express themselves and their feelings about what should be done. If possible, designate a person to be responsible for each task.
Find out if the senior has the proper legal tools and documents in place. Has someone been appointed to take care of business and make health care decisions in case of temporary or permanent disability? Has the senior made clear their wishes for end-of-life care? If necessary, consult an attorney specializing in elder law. These are some of the documents you should help the senior prepare if they haven't already done so:
Investigate health insurance matters. What kind of coverage does the senior have? Are they eligible for Medicare or Medicaid? If so, are they enrolled properly? Do they have a long-term care policy in place? If so, what exactly does it cover? Do they have any coverage through a private pension plan or retirement package?
Explore other available financial resources. What assets does the person have? Do they own real estate? How much is in savings accounts, IRAs, stocks and bonds and other investments? What is the monthly income from Social Security, other government programs and private pension plans?
Take a crash course in community resources. Find out about senior centers and adult day services in the senior's area. What are the best home health agencies around? What meal delivery and transportation support options are available? Assess the senior's skills and determine the resources you need.
Even if this is an acute crisis likely to pass, start gathering information about assisted living facilities and other long-term care options. When the time comes, you want to be able to offer the senior a range of options to choose from.
Consider hiring a case manager. These professionals are trained to quickly assess the overall situation, make recommendations about needed services and, if necessary, coordinate community resources and hire and manage paid caregivers.
Consult with everybody and anybody. Talk to friends, neighbors, acquaintances - anyone with experience in caring for an elder. In reaching out you will assemble a mosaic of information about how to proceed and what to expect down the line. You will learn that others have been there before and found their way through - though sometimes with great difficulty and sadness.
Talk to the senior. This is not always possible, but it is best to allow the person as much independence as circumstances permit. Remember that the caregiver's role is to help them maintain as much control over their lives as feasible, not take it away. The more you can consult with them and consider their desires, the smoother the transition in your relationship will be.
Make sure everyone on the caregiving team - whether family members, friends or professionals - has the information they need to perform their responsibilities. Make a list of emergency numbers, family contact numbers and other items and distribute it to those who might need it. Family members should know how to locate legal, financial and medical documents like durable powers of attorney, wills, investment account statements and health insurance policies in case of emergency.
If the senior is still living at home, make sure you and others in the inner circle have keys to the residence in case of emergency.
Keep good notes. Whenever you talk to a doctor, lawyer, insurance company, service agency, government office or advocacy organization, write down the name of the person you spoke with, contact information and the substance of the conversation. Maintain separate files for different areas of concern - financial topics, medical affairs and so on.
Acknowledge your own feelings of loss, anger, shock and confusion. Perhaps you realized this moment was coming, perhaps not. In any event, you are likely to find unsettling emotions bubbling through the surface. Allow yourself time to experience them. Write them down in a journal. Take a long bath. Find a quiet corner and close your eyes. Take care of yourself, too.