Caregivers: Ways to BITE BACK
Supporting and caring for a loved one with blood cancer can be a very meaningful experience, but it can also be challenging and stressful at times. Depending on your loved one’s needs, you may be offering emotional support, navigating health insurance and financial matters, accompanying your loved one to doctor’s appointments or helping manage paperwork such as health records and test results. You may be a son or a daughter, a husband, partner or a wife, an in-law, or a friend. You may live together, nearby, or far away. If you're helping provide regular care to your loved one, you are filling the role of a caregiver.
Following are some tips and information to help you manage this important role:
Help Your Loved One Maintain Independence: It’s important to recognize that your loved one has the right to make decisions about his or her life (if he/she is an adult). There are so many things that your loved one cannot control right now about the course of his/her illness such as physical changes, prognosis, etc. Respect your loved one’s desire to maintain independence and continue making decisions about their life in the areas he or she is able to control.
Empower Your Loved One: If your loved is well enough to continue certain activities, such as managing bills, cooking, taking care of household needs, offer him or her encouragement to do so. Empowering your loved one to maintain independence will go a long way to helping him or her feel better about some of the activities he or she may have had to give up or ask for help to complete.
Create a System: Caregiving can be overwhelming, particularly when you are incorporating your caregiving tasks into an already busy schedule. To stay organized, keep a calendar and/or list of the caregiving tasks you need to manage and prioritize those that are most time sensitive or important. Sit down with your loved one and map out the needs for the week and the month – doctor’s appointments, shopping needs, medication needs, etc. While there will be times that things come up unexpectedly, mapping out the things you know must get done can decrease your stress load. Don’t be afraid to ask for help if you need it. Review the list and identify tasks that can be delegated to other members of your loved one’s support group such as friends, family members, community organization volunteers, etc.
Managing Medical Care: Keeping track of medical records can be overwhelming, particularly when caring for someone with a serious illness such as blood cancer. You may find it helpful to keep a file or journal to keep track of your loved one’s medical appointments, test results, medication, side effects, new symptoms and questions to ask about at the next doctor’s appointment, important phone numbers, etc.
Knowledge is Power: Taking the time to better understand the type of blood cancer your loved has been diagnosed with, the course of treatment and the prognosis will make you a more effective caregiver. You can learn more about different types of blood cancer in the disease states (link) section of the Cancer Bites website. Ask the doctor about other resources where you can become more informed.
Know Your Boundaries: Being a caregiver can take its toll on your energy and emotions. It’s perfectly natural to feel frustrated and overwhelmed at times. When you are feeling this way, it may be a sign that you need to take a break and find ways to incorporate more time for self-care. Taking the time to address your personal needs, whatever they may be, will make you a better caregiver for your loved one. So make a point to schedule time for what you need – lunch with a friend, exercise, errands, etc. When you need support, turn to other people on your loved one’s caregiving team such as relatives, friends and health care professionals to help you cope.
Ask for Help: There are resources available via Cancer Bites patient advocacy partner to help caregivers who need additional support navigating insurance issues, help with every day activities, transportation, etc. Visit the resources section to learn more.
Planning for the Worst: If your loved one is very ill, it may be time to consider identifying a health care proxy and/or legal documents to communicate your loved one’s wishes when he or she is no longer able to do so. These details should be communicated to your loved one’s medical team.
Accepting Change and Limits: It is important to understand that your loved one may feel different from day to day. Changes in medication or treatment therapies can impact your loved ones energy levels, emotional well-being, and physical abilities etc. For example, your loved one may not be able to enjoy sharing in a meal you have helped prepare because they are feeling ill or loss of taste. Be patient, and do your best not to take things personally.
Laughter is the Best Medicine: Just because your loved one is ill, doesn’t mean that he or she has lost his ability to enjoy some of the activities that he or she has enjoyed in the past such as watching a film, listening to music, creative outlets and hobbies, etc. Try to help your loved one incorporate these activities to maintain a sense of normalcy and connection to their world beyond cancer.
Learn More: Visit the resources section to learn more about caregiver resources and support programs available via the Leukemia &Lymphoma Society, Lymphoma Research Foundation and the Multiple Myeloma Foundation.