The role of a caregiver for someone with late-stage cancer or a terminal illness is crucial for maintaining normalcy for the patient regarding non-medical routine tasks with which the patient needs assistance such as bathing, meal preparation, and even companionship. While a caregiver-patient relationship typically focuses on personal care and household tasks, companionship is a large responsibility and the most valuable part of the relationship between you and your loved one. Beyond the technical tasks of the job, here are soft skill tips for caregivers of loved ones with cancer or another serious illness.
Caregivers tend to act as an extension of everyone involved to the patient. They are heavily involved with the medical team – going to appointments and treatments, administering medicine, and communicating any issues or concerns, and must be able to relay this information to friends and family as well. Taking on this responsibility lifts a huge weight off the patient so they don’t feel obligated to relay this information constantly to the medical team and their network of close friends and family.
The first part of this is to be present at as many appointments as you can so that the responsibility of remembering the information doesn’t fall on your loved one as they’ll rely on you for coordinating their care at home. When at the appointments, ask questions on behalf of your loved one, take notes, and make sure to let the medical team know that you will be the caregiver and thus, the primary point of contact. When there is more than one medical team involved, it’s important to be meticulous when communicating between teams to update them.
Communication may not always be easy and straightforward. Be prepared for your loved one’s disposition to change. They might withdraw from you and the family, not want to talk in fear of burdening you, become angry and frustrated, or just feeling sad and possibly hopeless. No matter what, comforting your loved one and being their source of strength and hope comes first. As emotional as you may be, always try to be brave for them and let them know that nothing is off limits to discuss and that they are your first priority. However, make sure that you as a caregiver have support in your own network of close ones as self-care is important to maintaining your own mental and emotional health.
Know Your Resources
Most caregivers are not trained professionals and are usually a spouse or son/daughter that chooses to step in. It is not expected for you to be an expert on their illness or know all the answers. Locating resources and finding advice for caregivers from other caregivers can help you navigate through your new role. Many have been in a similar situation and therefore, you should not feel alone.
Reaching out to the medical team for resources is possible and doing your own research to answer big questions about what the disease is and little questions like when should you insist on stepping in when you see your loved one struggle with a daily task such as getting dressed. Alzheimer’s caregivers tend to have many caregiver tips and advice that usually can be applied to other terminal illnesses. Every caregiver-patient relationship is different so keep in mind you’re not held to any fast and hard rules that you must abide by.
Taking the advice of others with experience should supplement what your loved one is communicating to you. Don’t insist to do or talk about things that make them uncomfortable. You’re there to support, not control. A large part of being a great caregiver of a cancer patient is knowing the boundaries between when you should lead and when you should just listen. This is something you’ll have to work through with your loved one. The American Cancer Society is a great resource to start with on getting advice for caregivers of cancer patients.
Ring Theory: Comfort In, Dump Out
One of the toughest things as a caregiver is dealing with the unknown and feelings of frustration are inevitable in this new situation. Your personal life does not stop after your loved one is diagnosed and it can be very difficult to manage the balance between maintaining your quality of life and theirs.
The relationship between you as a caregiver and your loved one should be a positive one. Whatever your relationship before, being a caregiver means growing closer, which enriches your already strong relationship. There will be moments where you find that you become impatient or even just exhausted and this is normal. However, these feelings should not create negativity in the relationship.
Ring Theory is a great concept to help you manage your negative feelings to keep them from hurting your relationship with your loved one. Clinical psychologist, Susan Silk, developed the Ring Theory to help people avoid the mistake of complaining to the wrong people. Picture a bullseye with outer rings. At the center is the person with the illness. On the smallest ring are those who are closest to the trauma (typically being the caregiver and close family), on the next outer ring are those even farther from the trauma such as friends of the family, and so on for as many rings are needed. The rule is simple: “comfort in, dump out.” You can only complain and dump out negative feelings to those who are on larger rings than you and only offer help and support to those on the smaller rings than you. Psychology Today published an op-ed piece, “Ring Theory Helps Us Bring Comfort In” , with a diagram to help you create your own rings.
Does Your Loved One Need Financial Assistance?
As a caregiver, you can also help alleviate the financial burdens your loved one may be faced with after a diagnosis. If the medical costs are disrupting their quality of life and they’re considering selling their life insurance policy, introduce them to a more flexible and tax-free option: the Funds For Living financial assistance program.