Caregiver Resource Guide: Part 1 - Mesothelioma.com (blog)

Part 1: The Impact of Caregiving on the Caregiver

Everyday, thousands of people become caregivers to loved ones diagnosed with cancer. Caregiving can be difficult and uncomfortable, but is a necessary and crucial role taken on by strong individuals. The weight of caregiving can become especially difficult when dealing with a patient with mesothelioma, a cancer that has physical and financial side effects on top of immense legal implications. The MCA has put together a two-part guide to caregiving for one of the most serious and complicated cancers. This part of the guide will cover the often overlooked topic of the impact of caregiving on the caregiver’s life.

Cancer is arguably one of the heaviest burdens a person may come across in life and the greater the struggle on the patient, the tougher the job for the caregiver. Caregiving requires more than just a sacrifice of time, it requires fully giving oneself to the cancer patient and that can have immense impacts on the caregiver’s life.

Physical Impact

Mesothelioma is a serious cancer that requires intense treatment, usually in the form of radiation, chemotherapy or surgery. Throughout the stages of treatment and recovery, patients require varying degrees of assistance, but, especially for caregivers working around the clock, fatigue and burnout are expected no matter what. Some physical tasks that are commonly associated with caregiving for patients are:

• Lifting/moving patient or assisting with movement


• Climbing stairs multiple times per day


• Disruption of sleep patterns


• Standing for multiple hours for day

It is crucial to the health of the caregiver that he or she takes physical breaks throughout the day, as well as taking whole days off at a time, if possible. It becomes habit for a caregiver to continue working even when they are not immediately needed in order to stay on top of tasks. Without necessary downtime, a caregiver may become seriously fatigued, leaving them unable to continue caregiving for their patient completely.

Financial Impact

For many new caregivers, it can be hard to understand the impact that sacrificing so much of their personal time can have on them financially. Finances associated with cancer are usually those regarding treatment and medical costs for the patient, but the financial impact of being a caregiver can also be heavy.

For caregivers working 24/7, taking time off from their full time job may be necessary. If they are an informal caregiver, such as a family or friend, taking time off from work could cost them their income entirely for some time. Other factors that add to the financial burden of caregiving are increased time spent driving to and from appointments and running errands for their patient, picking up small items here and there that might help with patient comfort, and even paying co-payments for their patient. Depending on the severity of the patient’s illness, the financial burden of caregiving will be different for each situation, but it is smart to expect some financial toll.

In order to avoid taking a harder than necessary financial hit, simply be prepared. Here are some steps you can take to ensure that you don't hurt your finances too much:

• Allot a certain budget for “gifts” and other random purchases for your patient and stick to it


• Have a conversation with your patient about possibly coming up with a short-term payment plan for necessities, such as gas money


• Divide the more expensive caregiving roles between other family members and friends

Mental Impact

There is typically a strong correlation between how much distress and struggle a patient is feeling and how much stress his or her caregiver is undergoing. As a caregiver, not only are you dealing with the day-to-day tasks of working with a cancer patient, but you are also witnessing the immense suffering a cancer patient must experience. The mental impact of caregiving is often times the most severe and harrowing side effect.

Caregivers usually report much greater levels of depression and anxiety as compared with non-caregivers. Not many people deal with cancer in such an up close and personal way without actually dealing with a diagnosis themselves and taking on caregiving without strong emotional preparation can be devastating to a person’s mental state. Before beginning caregiving it’s important to genuinely understand the task at hand and the many outcomes that may come from your patient’s situation.

Mesothelioma is an especially hard cancer to work and deal with as it moves quickly and can cause fatality quicker than some other cancers. Although optimism and a positive attitude are absolutely crucial traits in a caregiver, a realistic mind will help during hard times and when coping is necessary. Being able to have honest discussions with your patient about all possible avenues his or her cancer could take will also help alleviate some of your own mental anguish as you begin to better understand their mental struggle as well. As a caregiver, opening up to your patient in a positive, but realistic way will also help establish incredible trust and an understanding that neither of you are in this alone.

In part two of the Caregiver’s Resource Guide, the MCA will cover dealing with financial planning for the patient, staying organized, making long-term care plans, and, most importantly, the positive benefits of caregiving for both the patient and the caregiver.