The job description for a caregiver can be overwhelming. The caregiver can be expected to manage the physical, practical and emotional/spiritual needs of a loved one, while continuing to manage his or her own life. In this article, we will explore a bit more about the roles and tasks of the caregivers, as well as how to strategize managing these tasks and roles and to set limits. The caregiver role is "fluid"; as your loved one's disease changes, so may your role. It important to be flexible and to communicate clearly with your loved one about their care needs as they evolve.
While coping with an illness, acute or chronic, the individual requiring care may require physical, medically based care and management. As medical care has evolved, less care is being given in the hospital. Many patients are now sent home with high tech medical needs that, not long ago, would have been managed in a hospital. These needs can include tube feedings, chemotherapy, pain management, and wound care. There are also less medically intensive needs, including assistance with mobility and ambulation, repositioning, range of motion exercises, medication management, bathing, dressing, feeding and supervision for safety.
Limit setting is extremely important in physical caregiving. There may be tasks that the caregiver feels uncomfortable with providing - it is important to voice your concerns about tasks that you feel you will not be able to perform, for whatever reason. For example, you have a bad back, but your family member requires lifting and repositioning. This is not a safe nor realistic role for the caregiver to play. The health care team can help you strategize for alternative plans and sources of assistance. It is of utmost importance to voice your own limitations to both the health care team and your loved one as care is being put into place. Communicate your needs, fears and concerns so that safe, appropriate care can be arranged.
In many cases, you are being asked to become a nurse for your loved one. This can be a scary reality for the caregiver, but you are not alone. These services are always done in conjunction with and under the supervision of both the physician and a skilled homecare agency. Caregivers can be taught (and re-taught) how to provide services to their loved one, how to trouble shoot, 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 typically covered by insurance. See our article on "mobilizing help"for more information on homecare services.
Practical care needs involve assisting your loved one in the management of their daily life, and can include paying bills, applying for disability, managing insurance claims, going to appointments and assisting with medical decision making.
Overseeing financial tasks may require the appointing of a financial power of attorney. This is not something to be handled lightly. Consult with an attorney to draw up the necessary legal paperwork that affords protections to 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 his or her personal finances.
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 assist your loved one in making 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 he or she is unable to make decisions, you could make them on his or her behalf. Your social worker can help you with creating these documents.
It is important for the caregiver to stay organized. Start a binder or accordion file to keep all the related paperwork. The American Cancer Society offers a free, "Personal Health Manager"with tabs and folders to help organize everything from appointment calendars, to medication lists to survivorship care plans. Keeping all paperwork necessary for caregiving in one place can be extremely helpful and alleviate the stress of looking for prescriptions, schedules and legal documents.
You may also want to keep a separate folder for managing financial documents, such as disability applications and communication, insurance paperwork and medical bills. This can help you and your loved one stay on top of needed paperwork and facilitate claims being paid on time. Discuss with your loved one where s/he keeps 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 discuss with him/her if you can access these accounts on his or her behalf. It is important to spell this out in any financial power of attorney document to protect yourself and your loved one.
When faced diagnosis of cancer, your loved one is riding a roller coaster of emotions. Whether you like it or not, you are along for that ride. Your loved one's feelings may change at the drop of the hat. Given your role as caregiver, you may be the one who hears the anger, dries the tears, laughs at a good joke or hopes with him or her. What can be especially challenging for caregivers is that all of these emotions can happen in a very short period of time, making it hard to anticipate and prepare for 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 are able to share with your loved one your own feelings and emotions about the experience, while continuing to be empathic to the situation. The rewards of providing this emotional support to your loved one should not be ignored. Your loved one is vulnerable, scared and uncertain about the future. You have been asked to accompany them on this journey. You are committed to them. You are improving their quality of life. You are vital to their physical and emotional well-being. Relationships grow while providing care, but only if you can talk with each other about the experience, the stresses, the highs and the lows and maintain a plan of action and support together. It is important to explore other avenues for social, emotional and spiritual support for both you and your loved one. It bears repeating; you do not have to do this alone.