Coping Strategies and Resources for Family Caregivers
By Andrew Esch, MD
If you are caring for a loved one living with a serious illness, you are part of the largest workforce in the country. More than 43 million people – that’s almost one in seven Americans – are providing unpaid care for a chronically ill, disabled, or elderly family member or friend. Many of these caregivers are holding down a full-time job at the same time, and many are also raising children.
Caring for a loved one can be rewarding, but it is not easy work. Caregiving can include everything from preparing and providing for meals, bathing, taking your loved one to medical appointments, managing medications, paying bills and handling family conflict. Many people struggle with how to manage all the medical, social and financial problems along the way. Here are three ways to help you find the support you need, and prepare for the future.
Get organized
People living with serious illnesses often have many doctors and medications, and complicated medical bills. One of the most useful steps you can take as a caregiver is to organize all important financial and health documents in one place – including lists of illnesses, medications, important phone numbers and insurance information. You can also keep a journal with questions, resources and ideas, and take it with you to all your loved one’s appointments.
Find out what benefits your loved one qualifies for, either through Medicare, Medicaid, work-related benefits or community agencies. If your loved one has long-term care insurance, find out whether it covers care in the home and/or in a facility, and if the insurance policy places lifetime limits on how much they can spend for care. It can be difficult to make sense of benefits policies, but many insurance companies have social workers or case managers who can help – don’t hesitate to ask.
Get palliative care
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with serious illness. This type of care focuses on relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
A palliative care team can help you and your loved one understand what to expect from their illness and prepare for the future. The palliative care doctor will take the time to ask about your loved one’s goals, and work with their other doctors to match treatment options to those goals. This is so you and your loved one can make informed decisions. Families are invited to every palliative care meeting to make sure everyone is on the same page.
The palliative care team will also take care of you. They will give you tips for taking care of your loved one, connect you with community resources, and make sure that you are able to take care of your own physical and emotional health.
Palliative care is available in most hospitals and it is growing quickly in outpatient clinics. In some areas, palliative care teams are available for home visits. Ask your loved one’s doctor about a palliative care referral. You can also look for palliative care resources here.
Get community resources
Caregivers often experience lost work hours or lost jobs, high stress and struggle with declines in physical and mental health. It is important to recognize when things are becoming too much and to take a break. You may have other family members or friends to call on, but this is not always the case.
A social worker or case manager can help connect you with community resources such as meals, home health, and transport needs. They may also be able to arrange for someone to care for your loved one so you can get away – even for a few hours. Most palliative care teams have social workers who can work on this with you, and you can also ask for this help at the hospital, the doctor’s office, or from your loved one’s health insurance provider. Local hospitals and community agencies may also have caregiver support groups, sometimes with phone sessions for those who cannot leave home.
Dr. Esch is medical education consultant to the Center to Advance Palliative Care. A palliative care specialist, Dr. Esch focuses on improving quality of life for patients and their families as they face serious illness. Dr. Esch earned his medical degree from the University of Buffalo.
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