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A Caregiving Journey: How to be a Caregiver and Your Own Case Manager

Life expectancy in America today is higher than ever. Thanks to advances in medical science, illnesses that were once fatal have been transformed into chronic conditions that require some amount of consistent support from a caregiver. Because of this dramatic change, the care once provided by health care professionals is now most likely delivered by someone the patient knows.

"The lifelong process of caregiving is the ultimate link between caregivers of all ages. You and I are not just in a phase we will outgrow. This is life — birth, death, and everything in between....The care continuum is the cycle of life turning full circle in each of our lives. And what we learn when we spoon-feed our babies will echo in our ears as we feed our parents. The point is not to be done. The point is to be ready to do it again." — Paula C. Lowe, Care Pooling, (Berrett-Koehler, 1993)

The numbers are staggering: 44.4 million people nationwide provide unpaid care to another adult, according to a recent study by the National Alliance for Caregiving and the AARP. Most of these individuals help relatives for an average of 4.3 years. Statistically, the "typical" caregiver is a 46-year-old woman, who balances work and more than 20 hours a week caring for her mother, who lives nearby.

Take charge as a caregiver
As a caregiver, much of the responsibility to create the infrastructure upon which your parent's care will be built falls on you. The following six steps will help you along the way:

1) Initiate conversations with family members. The first step to managing the caregiving process is to initiate conversations with your parent and other family members. The focus of the conversations will vary, based on your parent's mental or physical condition, living situation, etc. However, it's essential to build a consensus for how to proceed, to open the lines of communication and define and sort through the issues.

2) Determine your parent's specific physical, medical and emotional needs. Assessing your parent's ability to function in key life skills is important to determining what products, services and living arrangements he or she may need. Some important areas to include in the assessment, are:

  • Personal care: bathing, eating, dressing, toileting, grooming
  • Household care: cooking, cleaning, laundry, shopping, finances
  • Health care: medication management, physicians' appointments, physical therapy
  • Emotional care: companionship, meaningful activities, conversation
  • Supervision: oversight for safety at home and to prevent wandering

3) Consult a geriatric care manager and/or other experts.  Depending on your parent's condition, it may be useful to consult with a geriatric care manager to guide you or do the assessment. A GCM is "a professional with specialized knowledge and expertise in senior care issues," according to the Geriatric Care Managers of New England. The cost for this service varies depending on your location and the services you require.

4) Educate yourself. Nothing empowers like education, so take time to gather information on the issues you are facing. Talk to health care and social services professionals. Conduct research at your local library or on the Internet. Find out what public and/or private resources are available to you and your parent. Get the facts you need to make informed decisions.

5) Formulate a care plan. When you have the information you need, make a plan. When possible, you can make it along with your parent and other family members. It doesn't have to be formal, but it should be reduced to writing and specific enough that the meaning is clear but not overly complicated. Think about your short- and long-term needs, for both you and your parent. List the things you will need help with, where you derive "informal" support (family, friends) and "formal" support (community agencies). Determine if you will require professional support and for what tasks. The Family Caregivers Association suggests a care plan be considered "a work in progress," because to be effective it must be flexible as your parent's needs change over time.

6) Take care of the caregiver (that's you!). The last, but probably most important, aspect of managing a parent's care is taking care of you. Caregiver "burnout" is real and should not be taken lightly. See the "Caring for the Caregiver" checklist for how you can keep yourself healthy during such an emotionally and physically demanding time in your life.