A caregiver is anyone who provides emotional support or hands-on care to their loved one while they are ill.
When someone is diagnosed with mesothelioma, they may require assistance getting to appointments, walking, taking a shower or dressing. In addition to emotional and practical support, caregivers may assume many other responsibilities:
Typically, a primary caregiver provides the mesothelioma patient the most support. Primary caregivers usually are spouses or an adult child. However, friends, siblings and co-workers also may provide some support at times and be considered caregivers, too. Usually, the primary caregiver is the one who struggles mostly with the burden of additional responsibilities.
Adding responsibilities on a caregiver’s plate can be overwhelming for them, especially when they already are dealing with the emotional impact of watching our loved one battle mesothelioma.
Most caregivers are grateful for the opportunity to do something helpful for the patient. Other family members and friends may feel helpless while physicians and nurses stay busy treating the disease.
Driving their loved one to treatment or cooking for them are tasks that allow the caregiver to feel useful. However, if the primary caregiver has too many of these responsibilities without the ability to share them among others, caregiver stress may set in over time.
Caregivers may miss work or reschedule their commitments to accompany the patient to doctor appointments or diagnostic tests.
The caregiver and patient must learn medical terminology and become familiar with hospitals, cancer treatment centers and their procedures. The primary caregiver may take on the role of communicator for the patient so the patient doesn’t have to repeat their diagnosis story and treatment plan to family members and friends.
When a loved one is in the hospital after surgery, the caregiver may feel obligated to stay in order to keep them company or ensure they get proper care. It’s difficult to see a loved one in pain, short of breath, nauseous or fatigued, and many caregivers become overwhelmed with trying everything they can to help the patient feel better.
The end of treatment is a time when patients and caregivers look forward to returning to a sense of normalcy. Unfortunately, recovery sometimes takes longer than the caregiver or patient expects, leading to frustration because the caregiver must continue to perform the patient’s duties.
There can also be some friction between the patient and caregiver when there isn’t an agreement about how and when to return the responsibilities to the patient.
Perhaps the most challenging phase for patient and the caregiver is when mesothelioma progresses to the terminal phase.
As the patient’s health deteriorates, the emotional strain and physical burden on the caregiver is at its peak. For this reason, hospice organizations provide symptom management for patients, but also practical and emotional support for caregivers in their home.
First and foremost, caregivers should accept and acknowledge their feelings.
Some caregivers have reported they feel guilty when they feel lonely, angry, sad or overwhelmed because they aren’t the ones with cancer. Talking about your thoughts and feelings with a friend or family member can help release some of that stress.
Others have unrealistic expectations of themselves and their ability to manage the stress of caregiving for extended periods of time. It’s helpful for caregivers to have compassion and understanding for themselves as they try to juggle caring for someone and caring for their own responsibilities.
Accept offers of help and ask for it if you need it.
Many people reach out to mesothelioma patients and caregivers by saying, “Let me know if there is anything I can do.” Now is the time to take them up on those offers. Your neighbor can walk your dog. Your best friend can go to the grocery store for you. Your nephew can mow your lawn or rake leaves. Allow the patient’s brother to take him or her to chemotherapy once in a while so the caregiver can have a break.
Even though caregivers provide their loved one with care, the caregivers must strive to make personal time.
We all need to eat, sleep, get our dental and medical checkups and go for walks to stay healthy. It is also important that we do the occasional recreational activity like seeing a movie, eating lunch with a friend and getting a haircut.
Caregivers tend to put their own needs and desires on the backburner when taking care of a patient. However, there comes a time when caregivers need to put their own needs. It’s how we recharge our batteries so that we can continue to be caregivers.
Some caregivers find comfort in sharing their stories and feelings with other caregivers in support groups, online chat rooms or forum for caregivers. Many local hospitals or senior centers offer support programs for caregivers to allow them the opportunity to meet other caregivers in their community.
When caregiver stress becomes so overwhelming that it begins to affect the caregiver’s mental or physical health, it may be time to seek professional guidance from a physician or a mental health professional.
At times, caregivers benefit from medication to treat depression, anxiety or sleep problems. A counselor with expertise in working with caregivers will be able to teach coping strategies so reduce the symptoms of caregiver stress.
When someone is diagnosed with mesothelioma, the treatment and support team often is focused on meeting the needs of the patient. However, it’s important to remember the primary caregiver is walking each step of the cancer journey with the patient and likely carrying a great physical and emotional burden.
That’s why caregivers need to be aware of their own stress levels and take steps to care for themselves.