Becoming the primary family caregiver for a spouse, child, aging parent, sibling or friend is not a role that many of us are prepared for. It might come suddenly with the injury or unexpected illness of a loved one, or it might happen over a period of time as a chronic illness worsens leaving the patient less capable of caring for himself. However, whatever the circumstances that require that a family member step up and assume additional responsibilities for helping an ailing loved one, most of us feel woefully unprepared to meet the challenges associated with the wide range of activities that may be necessary. Recognizing that reality is the first step toward getting the help we need as caregivers so that we can provide the best possible care for the patient.
Get Informed. Learn about your loved one’s diagnosis and treatment so you have a sense of what to expect. With your loved one’s permission, speak to the doctor, nurse practitioner and/or nurse who is caring for the patient and go over the patient’s plan of care. Don’t be afraid to ask questions. Make sure you understand all instructions with regard to medications, including potential drug interactions, special diet, recommendations for or restrictions on ADL (activities of daily living) and exercise, follow-up appointments, arrangements for home healthcare, etc. Studies show that the more informed the caregiver is, the better the patient outcomes will be.
Debra F. Allen, President of the Mississippi Nurses’ Association speaks to the important role nurses play in preparing patients and their caregivers for the challenges they face in terms of their care. “Through nurses’ extensive training, we are adept at educating our patients and their caregivers,” says Ms. Allen. “Nurses focus on not only taking care of the patient, but making sure the patient and caregiver understand the disease process and treatment for the patient. This empowers the caregiver to better address the patient’s needs on multiple levels and research indicates that caregivers who feel prepared to deliver care tend to feel less of a burden.”
Having up-to-date medical information can help you, or someone who assists you, manage your loved one’s healthcare and medications, and it is crucial to have in case of an emergency. This information should include things like your loved one’s date of birth, Social Security number, Medicare and health insurance information, physicians/nurse practitioners, pharmacy, allergies, and medications, including daily dosage.
Identify Tasks. In order to best approach the role of family caregiver, it’s important to identify the activities that are needed, decide which you are best prepared to do, and which may require the help of others. Following is a list of common tasks often assumed by the caregiver depending on the abilities and limitations of the patient.
Get Help. Once you have decided which of your loved one’s needs you can meet on your own, you’ll know which ones will require additional help. Ask family members, friends, neighbors, co-workers or professionals to share the care. Just a few extra hands can make a big difference. Learn what help is available. Check with community agencies, religious institutions or a hospital social worker about local resources, such as Meals on Wheels, transportation services, adult daycare, homecare, and volunteers who might sit with the patient when you have errands to run or take a needed break.
Take care of yourself. Take a few moments for yourself each day to do something enjoyable or relaxing, even if it’s just taking a walk around the block. Try to find time for your hobbies and interests. Don’t neglect your own health and wellbeing. The job of caregiver is stressful and studies show it can put you at greater risk of developing your own health problems if you don’t pay attention to the warning signs.
Join a support group for caregivers. It can help you find comfort in your life as you work to balance your loved one’s needs with your own. A group can provide a safe, supportive environment for sharing feelings and discussing the challenges and rewards of being a caregiver. Don’t hesitate to seek individual counseling if you become overwhelmed and need more than friends, family or your support group can offer. Speaking with a counselor or social worker can help you cope with some of the emotions or concerns you may be facing.
“Nurses are acutely aware of the stress and fatigue that caregivers experience, and we also know that caregivers are often hesitant to talk about their own needs,” adds Allen. “We frequently spend time with the caregiver similar to what we do with the patient. Just asking about the health of the caregiver or if the caregiver is taking time for him/herself provides an outlet for the caregiver to discuss challenges and also provides an opportunity for us to offer suggestions or resources.”
The role of family caregiver is certainly not easy. It’s important to know that resources are available to help dedicated caregivers bridge the gap between their limited knowledge and experience in the realm of supportive care and their desire to successfully follow the patient’s plan of care and to achieve the best possible outcomes. Remember it’s not always what you know, but knowing where to turn to enhance your own abilities and when to turn to others for help.