When a loved one is diagnosed with mesothelioma, a parent, a close friend, or a spouse usually takes the role of a caregiver. Since they are usually not paid to provide care, they are known as family caregivers or informal caregivers. Generally, some of them have very little or no experience in taking care of mesothelioma patients. If you have taken this responsibility, it’s important to have realistic expectation, knowledge of your responsibilities, tips and resources to help you along the way.
What to expect as a mesothelioma patient’s caregiver
Being a caregiver for a mesothelioma patient has numerous facets. One of them is taking over the responsibilities and duties that the mesothelioma patients cannot attend to without assistance.
Such responsibilities include:
- Dressing, bathing and feeding
- Managing medication
- Monitoring health changes
- Scheduling appointments with the doctor
- Managing insurance
- Providing transportation
- Liaising with legal and financial experts
It’s important to note that roles of a caregiver change as mesothelioma develops. Usually, caregivers have increasing needs to address on daily basis as mesothelioma advances. However, there are cases where the need for support reduces as the health of the patient improves.
Nevertheless, some caregivers may need time off from their work. That’s because mesothelioma patient may need more care as the disease advances. For instance, a caregiver may have to accompany the patient to the hospital for medical procedures. Some of these procedures may take a week depending on the required travel and recovery time.
Common Responsibilities For Caregivers
The responsibilities of a mesothelioma patient caregiver vary depending on issues like the stage of the disease and general health of the patient.
However, common responsibilities of mesothelioma patients’ caregivers include:
- Health monitoring: Caregivers for mesothelioma patients are responsible for managing medications, reporting health changes to the doctor, managing appointment schedules and providing details of the patients to their medical team.
- Supporting the patient emotionally: For mesothelioma patients, companionship is usually very crucial to their well-being. Mesothelioma patients have good days and bad days, ups and downs. Usually, they need someone that will listen to them and that’s their caregiver.
- Decision making: A mesothelioma patient will usually need assistance in making financial decisions, sorting out different treatment options, health insurance and in some cases, legal issues. It’s the responsibility of a caregiver to provide that assistance.
Generally, responsibilities of a mesothelioma patient’s caregiver can be overwhelming. In addition to these responsibilities, a caregiver has to deal with personal fears, uncertainties and emotions. You also have to deal with the realization that your loved one’s ailment has changed your life and that of your family forever. It’s therefore critical to acknowledge the fact that mesothelioma patients’ caregivers feel occasionally lost, burned out and frustrated.
Tips for mesothelioma patients’ caregivers
Frustration, fear and responsibilities of a mesothelioma patient’s caregiver can lead to stress. Sometimes, caregiver stress can cause disagreements and miscommunication between the caregiver and the patient. Although mesothelioma and generally cancer-related stress is not easy to deal with, there are tips that can help in minimizing it.
Here are some of them:
- Acknowledge your differences
Individuals that provide care to mesothelioma patients and mesothelioma patients are all unique. They have different skills, strengths, and personalities. Therefore, don’t tell the patient or another caregiver what to do. Instead, let them provide care on the basis of their strengths and skills. For instance, a family member may prefer doing physical tasks for their loved one instead of accompanying them to a chemotherapy center. Another caregiver may have great accounting skills. Thus, they may prefer keeping track of the insurance paperwork and medical bills on behalf of the patient.
- Involve the patient in care-related discussions
Don’t assume that the patient needs or wants something. Assumptions will cause misunderstandings and stress for you and the patient. For instance, while some patients feel better when someone takes over their responsibilities fully, others love being in control over some aspects of their lives. Some patients prefer being in control over chores like laundry and cooking as long as they have the energy to do them.
- Use technology to communicate and coordinate caregiver duties
Strong and effective communication between a caregiver and a patient is very important. Use online resources to keep in touch with your loved one. For instance, you can use technology to create a to-do list or meal-train. You can also use technology to share health updates with your patient.
- Stay organized
Keep treatment schedules, medical paper work and other crucial documents organized. This will enable you to avoid feeling overwhelmed by your responsibilities as a caregiver. For instance, ensuring that your patient takes medication at the stipulated time and arriving for the appointment early will make your job less overwhelming.
- Know how to manage stress
You must know how to detect stress signals and manage it without interrupting comfort of the patient. Resting, maintaining a balanced diet and exercising will help in reducing stress levels.
- Seek help
If you feel completely overwhelmed, seek assistance. Family members, support groups, and medical professionals can offer you assistance in times of need. When you seek help it does not mean you are a failure. It only enables you to provide the best care to your mesothelioma patient.
Resources for caregivers
There are many obstacles that mesothelioma patients and their caregivers face on daily basis. These include dealing with the reality of mesothelioma diagnosis, facing the effects of mesothelioma treatment and prognosis as well as the impact of the disease on their families.
Here are valuable resources that can ease things up for mesothelioma patients’ caregivers:
- Consultation services
There are consulting services and financial resources that play a crucial role in helping mesothelioma patients and their caregivers deal with financial hardships that accompany mesothelioma treatment. These services are offered by financial planners and accountants that provide support and guidance to mesothelioma patients and caregivers.
- Legal compensation
One of the major responsibilities of caregivers for mesothelioma patients is to make decisions on legal issues. Today, there are law firms that guide caregivers and mesothelioma patients in making sound legal decisions. There are also mesothelioma trust funds for patients whose mesothelioma resulted from asbestos exposure.
- Support organizations
There are nonprofit and private organizations that provide support to mesothelioma patients and caregivers. These organizations cover co-payment expenses, transportation and other assistance that mesothelioma patients and their caregivers need.
- Caregivers groups
Support groups for caregivers provide patients and caregivers an outlet for connecting, sharing feelings, learning tips and coping skills as well as getting important information about the available services. A caregiver can also seek advice from other members of caregivers’ support group.
- Mesothelioma literature
There are many publications and books that provide useful information to mesothelioma caregivers. These provide answers to questions that caregivers may have regarding mesothelioma and how to provide the best care to mesothelioma patients. They are available online and at local stores.
Being a caregiver for a mesothelioma patient is not easy. However, being aware of what to expect, your responsibilities as well as getting tips and resources can ease things up for you.