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As a caregiver caring for a mesothelioma patient, you can find yourself overwhelmed with responsibilities. Caring for a loved one battling mesothelioma can be demanding and straining. The effects of mesothelioma will not only affect the patient but also impact your life as a caregiver. Therefore, you need to balance your responsibilities to live your life normally. Some caregivers find themselves battling anxiety and depression due to the demanding role of caregiving. It is good to seek professional help because caregiving is a new experience that might affect your mental health. As much as you should care for your loved one, it is not selfish to also care for yourself. You shouldn’t devote your entire existence to caregiving when you should be living your life and achieving goals.
When you balance the roles of caregiving and working on your personal goals, you will be in better shape to meet the demands of your new role. You won’t feel like you are missing out and focus on helping the patient battle mesothelioma. You will also find happiness and satisfaction in your life. Caregiving can be very demanding, especially if you do it yourself. However, you must know your limits. You shouldn’t take up too much and commit to doing more than you can comfortably offer. Take care of yourself as much as you take care of the patient. As a family member, understanding the roles and responsibilities of a mesothelioma caregiver will allow you to prepare for the task ahead. You should come together as a family and discuss the varying tasks and responsibilities. This is helpful because it helps everyone involved to understand the depth of what is coming and what is expected of them.
In the early stages of mesothelioma, the patient is strong and can rely on himself or herself for basic chores. However, the patient might become weaker and needier as the condition advances. This explains why mesothelioma caregiving responsibilities start out as minor duties but transition into more demanding tasks. Remember that most mesothelioma patients are over 60 years old, meaning they will need caregiving services even in the early stages of the condition. Therefore, creating a caregiving plan that helps you balance your responsibilities is essential. The plan will help the family decide how to divide and handle various caregiving responsibilities.
Creating a Caregiving Plan for a Mesothelioma Patient
A caregiving plan outlines the patient’s treatment plan, medical needs, and daily routine necessary to improve their health. As a caregiver, you are encouraged to create a care plan because it tells you what to do and when. Ensure that the doctor and other family members are involved in the plan for better coordination. Besides sharing responsibilities, a care plan is a form of communication between family members to keep them updated on the patient’s changing needs and overall health. For instance, when there are changes in any aspect of care, the care plan is updated to capture it. A good example is when there are changes in the time medication is taken — the care plan should be updated and redistributed to everyone involved in caregiving. If you are unsure of the level of caregiving required, you can contact a professional to help you straighten things out.
Being thorough in your care plan is vital for its success. Ensure that you capture all areas of concern and bring all family members on board. Caring for someone with mesothelioma isn’t a one-size-fits-all role. Every mesothelioma patient has unique needs before, during, and after treatment. This means that caregivers have different roles that keep changing as time progresses. Knowing some of the roles of a mesothelioma caregiver will give you an idea of what is expected of you.
Here are a few examples:
- Managing Day-To-Day Chores
As a mesothelioma caregiver, you are tasked with managing the day-to-day roles of the patient. For instance, you may handle the patient’s grocery shopping or laundry. This is the case when the patient is in critical condition and can’t perform such tasks. While caregiving, you should also find time for yourself. Take some time off and focus on your personal activities.
- Coordination of the Patient’s Care
Mesothelioma caregivers are also tasked with coordinating the patient’s care. You may have to administer medication or communicate with the doctor. If the patient cannot communicate efficiently, you can be their link to the doctor. Let the doctor know how they feel and what can be done to ease the discomfort. If you share caregiving responsibilities, every member must have the doctor’s contacts. Home-based care is effective only if the patient is adhering to medication guidelines. As caregivers, you must ensure that is the case.
- Planning and Decision-Making
In some cases, caregivers have to make decisions on behalf of the mesothelioma patient. As close family members, you understand the patient’s wishes and can help them make decisions whenever necessary. For instance, you can choose between chemotherapy and another method of treatment.
- Informing Other Family Members
If the patient is being treated away from home, a caregiver is tasked with informing other family members of the patient’s progress. This helps them know what is going on and what is expected of them when it is their turn to care for the patient.
From these roles, you can tell that mesothelioma caregiving can be challenging. According to the American Cancer Society, caregiving responsibilities can cause a wide range of emotions. Nonetheless, most caregivers find the role rewarding and meaningful as they help a loved one through a difficult time. Caregiving duties may also give you a feeling of accomplishment and help you form new relationships with the patient. On the other hand, you might feel sad, frustrated, and tired from your responsibility. Besides, it can be overwhelming and emotionally draining to see a family member go through an illness. This is why you should find the balance between managing your emotions and executing your caregiving responsibilities. Doing so will help you give the best services. As mentioned earlier, advanced stages of mesothelioma cause severe symptoms. This means that caregiving responsibilities will be more challenging. Besides, life expectancy at such advanced stages is minimal. This can take a toll on your mental health and affect your ability to care for a loved one. Therefore, you must find a way to balance all the activities and responsibilities.
Things You Should Know About Caring for Someone with Mesothelioma
Caring for a loved one battling mesothelioma can be tedious. However, experts say it doesn’t have to be overwhelming and depressing. To help your loved one manage the disease while being cautious of your mental health, you must understand the disease itself. Understanding mesothelioma will give you an idea of managing the patient and providing good caregiving services.
Mesothelioma is a rare type of cancer that starts in the layer of the pleura (tissues covering the lungs). This condition is commonly referred to as pleural mesothelioma. In some rare cases, mesothelioma can start in the layer of tissues found in the abdomen and surrounds vital digestive organs. This type of mesothelioma is referred to as peritoneal mesothelioma. In the early stages of the condition, the patient is stable and doesn’t need expansive caregiving services. However, as mesothelioma advances, the patients become weaker. This means you will have more caregiving responsibilities.
Other than the physical needs, mesothelioma patients need support on many things. This section discusses everything you need to know.
Provide Emotional Support
Mesothelioma affects not only the patient’s physical health but also their mental health. This means mesothelioma patients need emotional support more than you can imagine. As a caregiver, you should be compassionate and help reduce the patient’s emotional pain. Most cancer caregiving organizations say that companionship is vital for recovery. The patient’s emotional and mental state plays an essential role in how they manage the inevitable setbacks that come with mesothelioma. This is why you should support them emotionally. Let them know that everything will be fine and that you are with them every step of the way.
As a caregiver, you should understand that your loved one will have good and bad days. Therefore, you should be there to listen to their concerns and show them that they are valued. If possible, you can also offer them advice and the inspiration they need. A survey done on recovering mesothelioma patients showed that most relied on emotional support other than medication to get past difficult moments. Some even said their lowest moments in the journey were when they lacked emotional support. Therefore, as a mesothelioma caregiver, you should provide the emotional support your loved one needs.
Monitoring the Patient’s Health
As you know, patients with advanced mesothelioma cannot communicate efficiently. This means that caregivers are the ones who will be communicating with doctors and monitoring the patient’s health. Mesothelioma caregivers spend the most time with patients at a time. Therefore, they have the best opportunity to keep track of important details and monitor the patient’s day-to-day progress. Your loved one might struggle to remember, so you should help them keep track of vital details.
Besides, you can help manage the patient’s medication at home. This will reduce the doctor’s responsibilities and, to some extent, medical expenses. You can adjust doses on the doctor’s recommendation and add or reduce medications, among other related factors. Remember that your role as a caregiver isn’t medical. Therefore, you should not make any medical adjustments without consulting the doctor. You can also discuss with the doctor and learn how to help your patient manage pain due to treatment. You will also learn other caregiving aspects crucial to the patient’s well-being.
Consider Your Other Obligations
Caring for a mesothelioma patient can be demanding and overwhelming. However, in the midst of all that, life continues. Your life doesn’t have to stop just because you are caregiving. You have other obligations that must be considered as well. For instance, you have bills to pay, meals to prepare, and laundry to tend to. None of these obligations will disappear because you care for a mesothelioma patient. Other than usual day-to-day activities, mesothelioma caregiving might feel like a full-time job. If you have never found yourself in such a situation, you might find it challenging to focus on other obligations. This is the case if you have a full-time or part-time job or commitments like raising a family.
Despite your role as a mesothelioma caregiver, you must consider your ongoing commitments and personal schedule. If necessary, you should adjust your schedule to suit your personal and caregiving responsibilities. If you are in a romantic relationship, your partner might feel neglected if you don’t find time for it. In fact, many relationships are affected because one partner is committed to mesothelioma caregiving. That shouldn’t be the case. Find time to hang out with your girlfriend, boyfriend, or fiancee. All you have to do is balance your schedule to favor both sides. Remember not to ignore important life events because you are caring for your loved one.
Define Your Limits and Expectations
When planning your caregiving responsibilities, you should set realistic expectations. As much as you care for your loved one and know how to help them through difficult moments, you shouldn’t handle all the responsibilities alone. Knowing what you can afford to do based on your schedule and financial ability is important. Therefore, before you or anyone else in the family decides to take the caregiving role, you must discuss all the expected duties and responsibilities. The best way to approach it is by diving into different roles amongst yourselves. Having a candid conversation over caregiving responsibilities avoids confusion later on. If possible, every member should take up a role they can manage. You shouldn’t force someone to perform duties they are unwilling to do. All that can be sorted through a comprehensive mesothelioma care plan.
For instance, you should be cautious about your own health problems and physical limitations. You can’t be an excellent caregiver if you are not in a good physical and mental state. In advanced stages of mesothelioma, the patient might need help doing basic things like getting out of bed. Most of these activities need physical strength. Therefore, as a caregiver, you must be physically active before taking the role. If you feel unwell and unable to execute physically demanding responsibilities, let another family member handle them. Don’t push yourself to do them because you will ruin your chances of getting better. In some cases, caregivers might have contagious illnesses that put the mesothelioma patient at risk. Therefore, if you are feeling unwell, don’t get in contact with the patient. Instead, take time and recover first.
Caregiving responsibilities vary depending on the patient’s condition. Besides, their time commitment varies depending on how well they are doing. For instance, if a mesothelioma patient is not doing well and is bedridden, you might have additional duties as a caregiver. You might be tasked with preventing bedsores and ensuring the bed sheets are clean. Setting clear expectations is necessary for your physical and emotional well-being. Don’t take on more than you can handle.
Find Your Support System
To be a successful mesothelioma caregiver, you must take care of yourself too. In this selfless and giving role, you might devote yourself to the patient and forget about your well-being. That shouldn’t be the case. You can perform all the caregiving roles without taking a break to look after your affairs.
Taking care of a mesothelioma patient can be overwhelming. You might find yourself feeling low and depressed. This is why you should find a support system. You need as much support as possible to continue with your responsibilities. Besides, you must stay healthy and in a good mental state. Avoid isolating yourself from your support system, and speak out whenever you need help. In the caregiving role, support systems come in many forms. For instance, you can talk to your friends or family to help with various tasks.
Remember that the key is balancing responsibilities as much as possible. You can’t take care of a mesothelioma patient all the time without taking a break. The help of others is vital because it helps you balance responsibilities. If you feel overwhelmed or depressed about the role, seek emotional support. You can join support groups or talk to people in similar situations. Thankfully, there are many in-person and online support groups for mesothelioma caregivers. Good examples are Mesothelioma Applied Research Foundation and the American Cancer Society. Besides, there are other resources you can use to gain moral support. Financial planning, counseling, and other essential programs will help ease the difficulties that come with caregiving. They will also help enhance your mental well-being.
Strike a Balance
Becoming a mesothelioma caregiver is a bold decision that comes with various challenges. Taking up this role doesn’t mean dropping everything else and focusing on the patient. Instead, you should balance responsibilities and find time for your own affairs.
