Are you taking on the role of caregiver to a patient, family member, or loved one that has been diagnosed with mesothelioma cancer? Take a moment to take a deep breath; you’re in good hands here. Taking on the responsibility of being a caregiver can be stressful but it can also be extremely rewarding. Arming yourself with knowledge of the illness and what you should expect will contribute to your experience as a caregiver. Let’s continue to prepare and guide you to become a mesothelioma caregiver with confidence.
Understanding the Diagnosis
One of the most crucial steps in becoming a confident caregiver is understanding the diagnosis. It can be difficult to grasp the entirety of a disease such as mesothelioma, especially if this is an unexpected diagnosis and role for you to take on. It can be an emotional experience, so remember to give yourself some grace. Hopefully, you feel more empowered in your role as a caregiver after learning more about this illness.
What is Mesothelioma?
Mesothelioma is a type of cancer caused by asbestos. Once inhaled or ingested, asbestos typically works its way into the lining of the lungs, heart, abdomen, or in rare cases, the testicles. The majority of diagnosed malignant mesothelioma cases are in the lungs, which is known as pleural mesothelioma.
While this cancer is rare, it can be devastating. The prognosis for mesothelioma can range from an estimated 18 months to 31 months. However, the type of mesothelioma you have can greatly affect the prognosis. For example, peritoneal mesothelioma (affecting the abdominal lining) has a general prognosis of two years or more, whereas pericardial (affecting the heart) has a very short prognosis of only around six months.
Certain lifestyle factors contribute to your estimated prognosis. Comorbidities such as obesity, smoking, or other chronic illnesses can, unfortunately, lower your chance of surviving mesothelioma. The prognosis determined by your medical team also takes into accounts factors such as the stage of progression at diagnosis and the severity of symptoms.
Symptoms of Mesothelioma
The symptoms of mesothelioma can vary depending on the type, but some of the most common symptoms might include:
- Fever
- Night sweats
- Unexplained weight loss
- Body aches and weakness
- Loss of appetite
- Fatigue
Symptoms that could be specific to pleural mesothelioma include:
- Chest pain
- Persistent coughing (with or without blood)
- Shortness of breath
- Difficulty breathing/swallowing
- Fluid on the lungs
Experiencing any of these symptoms is definitely cause for concern, and you should make an appointment with your doctor to diagnose the issue. Diagnosing mesothelioma is a difficult task and can sometimes require advocating for yourself. The initial symptoms might be diagnosed as a simple viral or bacterial infection like the fly, bronchitis, or pneumonia. Once those options are ruled out, your doctor will probably order bloodwork and advanced imaging to get a proper diagnosis. Once you’ve been diagnosed with mesothelioma, the next step is to discuss treatment options.
Treating Mesothelioma
Like most cancers, the treatment plan for mesothelioma depends on a lot of factors. The location, stage, and progression of your symptoms will all be considered in your course of treatment. Typically patients undergo surgery to remove as much cancerous tissue as possible. In addition to surgery, chemotherapy, radiation, or a combination of the two are usually used.
Treating your symptoms is a top priority as well, so that patients can maintain quality of life. Medication usually helps, and there are also palliative care options, like fluid drainage to relieve some of the uncomfortable symptoms. Once of the biggest responsibilities you’ll likely have as a mesothelioma caregiver is to manage these symptoms and provide comfort.
Preparing for the Role of Caregiver
Decide on Your Availability
Becoming a caregiver is a serious undertaking and is a major time commitment. Before you make that commitment, you need to decide exactly how much time you will be able to dedicate to the person you are caring for. There are a lot of factors to consider as you make this decision.
First, work with your patient or loved one to decide what level of care they actually need. A doctor’s opinion can help anticipate how the patient will be affected by treatment. If they’re anticipating that they will be fully disabled, you’ll likely need to work with a secondary caregiver to provide times of relief for you. If they only need help with daily tasks like cooking, cleaning, and transportation, then you may become the sole caregiver.
Another factor to consider when deciding on your availability is whether you have the financial means to take time off work. Becoming a full-time caregiver is a full-time job, so you need to prepare to be able to support yourself while being a mesothelioma caregiver. You may receive private compensation from a patient or their family if they are specifically hiring you as a caregiver, but this usually isn’t the case if you care for a loved one. If you do need to sacrifice your job, you might qualify for financial assistance as a full-time caregiver.
You’ll also need to make sure your own responsibilities are covered. If you have children or pets, they need to be looked after with proper time and attention. You can coordinate your schedule so that you can still perform things like school pickup and drop-offs, attend sports games, or participate in playtime. The time you set aside for these types of responsibilities can be communicated when you are establishing boundaries with your patient.
Set Boundaries and Priorities
Part of your preparation to be a cancer caregiver needs to include a firm plan for what you will and won’t do as a caregiver. If you go into the process with established boundaries to protect both you and your patient, you will maintain a more effective relationship with one another as time goes on. Communicating each others’ expectations prior to beginning care will also ensure that you are the right fit for the role of caregiver.
An example of something you may need to discuss is whether or not you will be sleeping in the same home as your patient. Your patient may not need it, or you may not feel comfortable being away from your own home all night. If there is not a caregiver present at all hours, consider setting up a personal alarm service for your patient in case of emergencies.
If your background is in healthcare or home aid, you might be able to do more involved tasks like administering medications and taking vitals depending on whether your patient requires a nurse assistant. It is crucial that these tasks are done correctly and tracked accordingly. Therefore, you should reach out to your patient’s medical team for assistance or training if you have any uncertainty regarding this aspect of care.
You should also establish what your priorities are in this caregiver-patient relationship. Maybe you and the patient are very close, and you’d like quality time to be a major part of how you spend your days. Or maybe your patient is focused on rehabilitation, and you need to prioritise activities to facilitate their wish. Having clear expectations will eliminate mental stress and aid in your ability to care for yourself.
Prioritise Self-Care
Whilst fulfilling the role of cancer caregiver, it can be easy to lose track of your own needs and wants. If you’re not at your best, you won’t be able to give your best. Caring for your own needs and prioritising your mental health needs to be an active thought every day.
To make sure that you don’t become too wrapped up in your caregiving responsibilities, you should set time aside for self-care. Plan to do a leisure activity that you feel is relaxing and will make you happy. This could be watching a favourite television show, reading a book, or going for a long walk.
The emotional toll that comes with being a mesothelioma caregiver is something that should be considered for taking on the role. Watching someone deal with the symptoms of this cancer and the side effects of treatment is very difficult, especially if they’re a loved one. Other than providing comfort, there is not much you can do to take the pain and suffering away. This can lead to you experiencing feelings of sadness, guilt, and hopelessness. Knowing this head of time, you can take action to care for your mental health.
One step you can take for your mental well-being is to start a journal. A journal provides you with an outlet to express your feelings. You can also use a journal as a way to measure your mood as time progresses.
Mesothelioma is a dismal diagnosis for anyone to receive. The effects of this cancer are harsh and far-reaching. However, the care that someone receives matters a great deal when it comes to quality and quantity of life. Hopefully, by preparing yourself to be an effective cancer caregiver, you can truly make a difference in the life of your patient or loved one.
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