Caregiving: Roles and Tasks
As a caregiver, you can be expected to help with the physical, practical, and emotional/spiritual needs of a loved one while managing your own life. This article covers what care givers may be asked to do, how to manage these tasks, roles, and setting limits. The caregiver role is fluid. This means as your loved one's needs change, so may your role. It is important to be flexible and to talk with your loved one about their care needs as they change.
Physical Caregiving Needs
While coping with an illness, your loved one may may need physical, medically-focused care.. Many patients are now sent home with medical needs that, not long ago, would have been managed in a hospital. These needs can include:
- Tube feeding.
- Pain management.
- Wound care.
- Help with walking, repositioning, and range of motion exercises.
- Taking medication.
- Bathing, dressing, and eating.
- Staying safe.
There may be tasks you are uncomfortable with providing. It is important to voice your concerns about tasks that you feel you can’t do. For example, you have a bad back, but your loved one needs help moving. This is not a safe nor realistic role for you. The health care team can help you make other plans and find sources of assistance. It is important to voice your own limitations to both the health care team and your loved one as care is being put into place. Talk about your needs, fears, and concerns so that safe care can be set up.
It may feel like you are being asked to become a nurse for your loved one. This can be a scary reality, but you are not alone. These services are always done with and under the supervision of both the healthcare team and a skilled home care agency. Caregivers can be taught (and re-taught) how give their loved one the care they need, how to troubleshoot, as well as when to call for help. Homecare agencies are on call 24 hours a day to provide you with guidance and support. You do not have to do it all on your own. Skilled nursing care, physical therapy, infusion, and wound care services are often covered by insurance. See our article on "mobilizing help" for more information on home care services.
Practical Caregiving Needs
Practical care needs are helping your loved one in the management of their daily life. This can include:
- Paying bills and managing finances.
- Child care, elder care, and pet care.
- Helping to apply for FMLA or disability.
- Shopping and preparing food.
- Cleaning the house.
- Transportation to appointments, church, and other social activities.
- Managing insurance coverage and questions.
- Helping with medical decision making.
Your loved one may need a financial power of attorney. Talk to an attorney for the legal paperwork that protects both you and your loved one. It is important to talk with your loved one about their financial situation, where supplies are located when bills are due, and how you both can work together to manage their personal finances.
You may also want to keep a separate folder for managing financial documents, such as disability applications, insurance paperwork, and medical bills. Talk with your loved one about where they keep important documents including their will, living will, life insurance policies, property deeds, and car titles. If your loved one pays bills online, you may want to inventory user names and passwords as well as talk to them about if you can access these accounts on their behalf. A financial power of attorney helps with this too.
As a caregiver, you may attend medical appointments with your loved one. In this role, you need to be present, take notes, ask questions, and help your loved one make decisions with the care team. Your loved one may want to appoint you as medical power of attorney or health care proxy so that in the event that they are unable to make decisions, you could make them on their behalf. Your social worker can help you with getting these documents.
It is important for you to stay organized. Start a binder or accordion file to keep all the related paperwork. Keeping all paperwork necessary for caregiving in one place is helpful and can help you manage the stress of managing prescriptions, schedules, and legal documents.
Emotional Caregiving Needs
When diagnosed with cancer, your loved one is riding a roller coaster of emotions and you are along for that ride. Your loved one's feelings may change quickly and often. Given your role as caregiver, you may be the one who hears the anger, dries the tears, laughs at a good joke, and hopes with them. All of these emotions can happen in a very short period of time, making it hard for the caregiver to know how to best support your loved one. At the same time, you need to support your own emotional needs.
Communication is key in supporting each other. It is important that you share with your loved one your own feelings and emotions while continuing to be caring and supportive. The rewards of providing this emotional support to your loved one should not be ignored. You are with them on this journey. You are committed to them. You improve their quality of life. You are essential to their physical and emotional well-being. It is important to explore options for social, emotional, and spiritual support for both you and your loved one. It bears repeating; you do not have to do this alone. It is ok to ask for help.