Did you know that November is Family Caregivers Month? There are 42 million family caregivers in the U.S which provide 80% of long term care to chronically ill and disabled older adults. Whether you are taking care of your older adult mother with rheumatoid arthritis, or taking care of your partner or spouse after surgery, you are a caregiver!
Family caregivers coordinate hands-on care for a chronically ill family member or a disabled relative. Most are female spouses or partners and adult daughters, but the number of male caregivers is increasing. As a caregiver, you may be helping someone with their daily activities such as shopping, food preparation and housecleaning as well as medical and nursing tasks.
Most caregivers gain a great deal of satisfaction providing care to their loved one, but it can also take an emotional, physical and financial toll. Navigating complex healthcare systems and advocating for your loved one can be stressful. In addition, balancing work, social and other family responsibilities can feel overwhelming.
Here are some essential tips to help you better manage:
Expect open communication from the healthcare team and know that you have the right to timely information about care and treatment plans, and to voice your concerns. If you feel your concerns are not being heard, there are members of a healthcare team such as your social worker or a patient advocate that can provide support and help you navigate the healthcare system.
Get training for your role
Caregivers are increasingly taking on complex skilled nursing and medical tasks. Be clear about what is being asked of you and discuss with the healthcare team whether it is realistic for you to perform these tasks. Studies show that skill-building interventions can reduce caregivers stress. There are several ways to access formal training for medical tasks you might be called upon to perform. For example, ask a healthcare provider for instruction on how to perform specific tasks. In some cases, it might be appropriate to have a Certified Home Health Agency come to your home for an evaluation to provide in-home training. You can speak to your physician, nurse or social worker about whether you might be eligible for these services.
Seek out support
Participating in a support group can connect you with other people who understand your experience firsthand, and can help you feel less alone. In addition, you can learn about invaluable coping strategies, resources and stress management techniques that others have found helpful. Your hospital and local senior centers are good places to inquire about support groups offered in your local community. If you are feeling high levels of stress or sadness over a prolonged period of time, it might be helpful to speak with a counselor individually to talk through your concerns and find strategies to help you cope.
Take time for yourself
Though it may be challenging at times to find time, it is important to make yourself a priority. Whether calling in another family member or utilizing more formal services such as home health aides, or respite programs, it is essential to take breaks from your role on a regular basis. First, it is essential that you continue to take care of your own health by making sure you attend your own medical appointments, and keep up with recommended screenings, tests and treatments. Carving out time to have coffee with a friend, taking a walk or engaging in an activity that you enjoy will help you reenergize, and gain a fresh perspective. A social worker can help connect you with formal resources, and work with you and your family to help you negotiate some of the decisions about solutions which might work best.
The role of a caregiver can be both meaningful and challenging. With the right support and resources, you can find balance between providing and advocating for the best care for your loved one as well as maintaining your own well-being.
The following are additional helpful resources:
Caregiver Action Network
Family Caregiver Alliance
Next Step in Care
Su Jin Kim, LCSW is the Social Work Manager for the Rheumatology Division, Ambulatory Care Services at Hospital for Special Surgery, with extensive experience in working with Rheumatology patients. Su Jin received a Masters of Social Work degree from Columbia University’s School of Social Work and a post graduate certificate in couples and family therapy from the Ackerman Institute for the Family.
Adena Batterman, LCSW is the Manager for Rheumatoid Arthritis Support and Education Programs at Hospital for Special Surgery. She received her Masters of Social Work degree from Hunter College School of Social Work. Adena has extensive experience in working individually and in groups with people with RA and their families