Christina Bach, MBE, MSW, LCSW, OSW-C
The Abramson Cancer Center of the University of Pennsylvania
Last Modified: September 6, 2013
A caregiver is defined as a "person who attends to the needs of a dependent child or adult." Caregivers manage the physical, emotional, spiritual, and practical needs of another person, all while managing their own life, needs, family, and career.
On the surface this doesn't sound like a particularly glamorous job. Caregiving can be exhausting, frustrating, anxiety provoking, stressful, and nerve wracking. It can test our body, our spirit, our emotions and our patience. It may present us with financial challenges. The needs of our loved one may outweigh our capacity as caregivers and often trump our own needs. The caregiver may be tested, pushed, exhausted, scared and isolated.
Despite all this, caregiving is often a rewarding, bonding, cherished, and important experience between loved ones that few would ever choose not to do again. Caregiving gives us the opportunity to connect, love, show affection, dote upon, reminisce and be compassionate and empathetic towards an individual for whom we care.
Caregivers are typically family members, though not always immediate family members, like a spouse or child. Family caregivers can also be cousins, nieces, uncles, grandparents or even friends. Depending on the needs of the person being cared for, caregiving may take more than one person - or a caregiving team. Members of the team can include family members, professionals (from a homecare agency), community supports (church members, neighbors), and friends.
Caregivers play multiple roles in the care of a patient. The caregiver must be a skilled communicator. The caregiver must be able to multi-task; often juggling the physical, emotional and practical needs of the patient, while continuing to live their own lives. The caregiver will often play the role of advocate - speaking up for the patient when s/he cannot. Caregiving requires a great deal of commitment, flexibility, respect, and empathy from the caregiver. The caregiver can expect to receive gratitude, love and respect from the patient. Care is not provided on a one-way street.
There is also a role for professional assistance in caregiving through skilled nursing agencies. These agencies provide nursing services, physical/occupational/speech therapy, IV therapy, social work support and limited non-skilled home health aide services. Professional agencies can add to your caregiving toolbox by provided needed professional support, medication management, education and connecting you to other potential sources of support. Utilizing professional agencies is especially important for family caregivers who do not live nearby and need to access services through the patient's medical insurance and private pay resources. Your social worker can help identify agencies in your area that can provide professional caregiving services.
The tasks of caregiving are wide-ranging and based on the needs of the individual patient. Different caregivers are capable of and comfortable with different tasks, which is why it is helpful to have more than one caregiver. It is also important for the primary caregiver to be able to delegate tasks to others when they need help. One person cannot do it all! Some common tasks include:
Caregiving isn't for everyone, and it is OK to say "no." Perhaps the demands of your own family and career make it impossible to add another responsibility. This is okay. It is often better to say "I can't do this" then to try to do it and potentially put yourself or your loved one at risk. It is important to remember that you may want to be your loved one's daughter more than you want to be his/her nurse.
This is where the "village" concept of caregiving applies: it takes a village to provide adequate physical, emotional and practical care for another individual. It may be necessary to delegate caregiving tasks and dates to multiple family members. It is important that this happens BEFORE the caregiving actually needs to be provided. Sit down as a group WITH the patient and discuss their needs. The patient may not think they need help because they have family involved, but the family has to be realistic with what they can handle. Discuss the plan with the following considerations:
Caregiving can be a rewarding, rich, meaningful experience. It provides individuals with the opportunity to love, support, bond, share and be together. Shifting a focus from the burdens of caregiving to the benefits of caregiving can help you cope. Remember that you are giving back through providing care. You know that your loved one is getting the best possible treatment and support because you are providing it. The caregiving relationship is a gift given to each other.
A caregiver must also take care of him/herself. Self-care includes, getting sleep, eating regular meals, maintaining relationships with other family members, exercise, engaging in hobbies and reflecting on the caregiving experience. The ability to delegate tasks to others is key. Caregivers who ignore their own needs can be at a higher risk for caregiver burnout as well as physical and mental health problems. Remember to ask for help. Take breaks. Meditate. Get a massage. Play games on your phone. Read a chapter of a book. Watch an episode of your favorite old sitcom. It is okay to disconnect, even for a few moments, to re-charge your batteries. You will be a better caregiver if you are able not only to meet the needs of your loved one, but also your own needs.
Sep 15, 2010 - Terminal cancer patients who die in the hospital have higher distress levels and worse quality of life at the end of life than those who die at home with hospice care, and their bereaved caregivers are more likely to experience psychiatric illness, according to research published online Sept. 13 in the Journal of Clinical Oncology.
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