Mesothelioma Caregiver Support
Being a caregiver for a mesothelioma patient presents many challenges, but there are resources available to support both caregivers and patients throughout the journey.
Caregivers face an array of responsibilities depending on the patient’s needs.
Developing a caregiver contract can alleviate stress for both caregivers and patients.
Caregivers should remember to focus on self-care and ask for help when needed.
There are many resources available to help mesothelioma caregivers.
Caring for someone who has been diagnosed with mesothelioma can be a challenging and overwhelming experience, but resources are available to make the process easier for both caregivers and their loved ones. It is important that caregivers know that they are not alone in their journey, and there are strategies and options available to ensure caregivers and mesothelioma cancer patients feel comfortable and supported.
What to Expect When Becoming a Caregiver
According to the most recent data, there are more than 43 million unpaid caregivers in the United States. Becoming a caregiver can be a time-consuming and stressful undertaking, especially when the individual providing care has responsibilities of their own, such as a full-time job, a family and other prior commitments. Whether it is a parent, spouse, other family member or a friend who needs care, the tasks that are required can cause caregivers to become overwhelmed if they feel alone and not adequately prepared.
Individuals typically adopt the title of caregiver after a loved one’s condition progresses and they require care for activities they cannot complete on their own on a more regular basis or even around-the-clock. This often becomes the case for mesothelioma patients early on, as many are diagnosed at later stages of the disease and it can progress quickly. Mesothelioma patients typically experience symptoms like shortness of breath or weakness from treatment or surgery, so activities like walking a pet or running errands may be tasks that a caregiver must take on following mesothelioma diagnosis or during treatment and beyond.
Caregivers have many roles, which can change frequently based on how the mesothelioma patient’s needs change during and after treatment. Depending on the patient’s prognosis, the tasks required and the amount of time dedicated to caregiving can also vary. It is important for caregivers to recognize themselves as caregivers, and not just as a family member or friend, in order to take the necessary steps to understand and effectively perform the responsibilities of their new role.
Responsibilities of a Mesothelioma Caregiver
Mesothelioma caregivers, as well as caregivers for patients with other cancers and conditions, can take on a wide array of responsibilities depending on the patient’s individual case and needs. In general, factors like the age of the patient can have an impact on what kinds of tasks a caregiver can expect to take on.
Caregivers typically dedicate more time caring for someone who is older in age. Research has found the median age of mesothelioma patients at diagnosis is 74, largely due to the cancer’s long latency period. On average, caregivers of individuals over the age of 75 spend more than 34 hours a week helping their loved one complete everyday tasks. It’s important to note that young people are still at risk of developing mesothelioma, and caregivers of younger patients often spend anywhere from 15 to 30 hours caregiving depending on the stage of the disease.
When a patient’s condition worsens, caregivers tend to spend more time completing tasks and caring for the individual. As most mesothelioma patients are diagnosed at stage 3 or stage 4, mesothelioma caregivers can expect to take on more tasks for everyday life, as well as helping with the patient’s medical care. If a patient is homebound, this may mean that an added layer of care is required, such as completing additional tasks like grocery shopping or picking up medication.
For example, mesothelioma caregivers may be responsible for the following tasks:
- Assistance dressing and help with daily activities like getting up, sitting down and walking
- Crisis preparation
- Household tasks (laundry, grocery shopping, cleaning, food preparation, etc.)
- Managing finances
- Organizing appointments, medical records and communicating with physicians
- Understanding and noting a patient’s mesothelioma treatment plan and any treatment side effects
- Personal hygiene
- Transporting the individual to and from appointments
- Keeping family members and friends informed of condition, treatment, etc.
Some caregivers are responsible for tasks beyond these, such as contributing financially to a loved one’s bills and other expenses if they are not receiving a steady income. Oftentimes, caregivers are not trained or specialized in the work they are expected to complete on behalf of their loved one. With that in mind, there are many tasks, such as bathing or helping the individual get out of bed, that may be challenging for a caregiver who is taking care of someone for the first time.
Planning for End-of-Life Care
Since mesothelioma is incurable and the average life expectancy for patients is 12 – 21 months, arranging end-of-life care is typically a necessary step in the caregiving process. This process can be difficult, but establishing a plan can alleviate stress as the patient’s condition progresses. It is important that caregivers ask the patient about their wishes, such as whether they would prefer in-home care or outbound hospice. Living trusts and wills are also important to document and plan in the event of a poor prognosis. Although these are tasks a caregiver may not want to think about, especially if they are a loved one, it is vital that they assist in any way they can with these decisions.
Tips for Arranging End-of-Life Care
- Hire an attorney to help navigate the logistics of a living trust or will
- Research long-term care facilities based on reputation, cost, location, etc.
- Encourage patient to detail wishes such as a do-not-resuscitate (DNR) order, organ donation, etc.
Challenges of Caregiving
Transitioning into becoming a caregiver can lead to unexpected hardships. When spending countless hours each day caring for a loved one through difficult symptoms of mesothelioma or struggles recovering from treatment like surgeries or chemotherapy, it is easy to get distracted from personal commitments and responsibilities. Over time, it can also take a toll on the body.
Oftentimes, caregivers sacrifice their own health and care in exchange for the health of the individual who is receiving their care. Caregivers are sometimes required to stay up at night in order to check on their loved one, which can lead to sleep deprivation and burnout the following day. Caregivers are also prone to injuries due to the increased physical labor that is often required. Although caregivers are responsible for caring for another individual, it is necessary that they take care of themselves to maintain a healthy lifestyle.
Common Challenges of a Mesothelioma Caregiver
- Sleep disruption
- High levels of stress
- Ignoring own health needs, such as exercise
- Physical care of the patient
- Strained relationships
- Feeling isolated
- Time commitment
- Financial burdens
Regardless of the challenges caregivers may face, it is important that they recognize the hardships they are experiencing and address them accordingly. Not tending to fatigue or other problems can lead to an array of other concerns, such as illness or problems with performance at work. Caregivers should not be afraid to lean on other loved ones for support and express their concerns to other family members in order to provide the best care for the loved one who needs it.
Mesothelioma Caregiver Best Practices
A first-time caregiver may not know where to start when it comes to caring for a loved one with an advanced cancer like mesothelioma. Although it can be challenging to know how to do the job best, it’s important to view caregiving from all angles to assure that both the loved one and caregiver feel safe, comfortable and supported.
Create a Caregiver Contract
Laying the groundwork for caregiving between the mesothelioma patient and the caregiver is essential in providing effective care. Even if the caregiver is not expecting to be paid, it is important that expectations and priorities for care are formally conveyed to avoid disagreement and conflicts among family members.
Caregiver contracts, also known as caregiver agreements, may include:
- Compensation, if applicable
- The date that the care will begin
- Hours of care expected to be provided per week
- Services that will be provided and the duration of care
This can include time spent transporting a patient to cancer treatment or other medical appointments, administering medication or organizing housing if the patient requires surgery at a cancer center out of town. It may also include clauses that detail who will take over care when the primary caregiver is unable to do so, whether it is due to illness or personal reasons. The agreement must be signed by both parties, and other family members should read and agree upon the contract in order to ensure all who are involved are on the same page.
Communication is key in any situation, and it holds especially true when caring for a loved one who requires assistance. Caregivers should be transparent and honest when it comes to their concerns, as should the individual who is receiving the care. It can be hard to see a loved one’s condition worsen, and caregivers may feel lonely when taking on the responsibility of ensuring they are as safe and comfortable as possible throughout their journey. If the caregiver notices their loved one struggling emotionally or physically, it is important that they provide them with a comfortable environment to express these issues, so they are accurately conveyed to medical professionals and other specialists. There are many books about mesothelioma and becoming a caregiver for someone with cancer, which can open the door for communication between caregivers and patients to discuss any concerns they may have. Caregivers and patients may also consider seeking out support groups with those who are facing similar experiences and challenges.
Caregivers may experience stress, grief, anxiety, depression and loneliness as a result of providing care to a loved one. It is not easy to see a loved one’s health compromised from mesothelioma, and handling the emotions that come with that experience may be confusing. Although caregivers may want to offer constant care to their loved one, self-care and addressing these natural feelings and emotions are equally important.
Taking time away when necessary, finding hobbies that take the mind off of caregiving, as well as forgiving oneself for the imperfections that may present during caregiving, are steps in the right direction to overcoming negative emotions and being fully present when caregiving. Identifying support options, whether it is in the form of counseling or a family member, and recognizing emotions may be a helpful way to find strategies to combat them and prioritize self-care.
Don’t Be Afraid to Ask for Help
Although it can be hard to ask for outside help, especially when it comes to the care of a loved one, it can sometimes be a necessary task to ensure the patient is getting the necessary attention they need. In doing so, it is also important that the caregiver is able to rest and fulfill duties in their personal life. Outsourcing help, such as hiring an at-home nurse for daytime care, hiring someone to help clean and complete tasks that may be difficult with mesothelioma or utilizing delivery services for medication and groceries may relieve the caregiver of stress and create a more comfortable balance. It is important, however, that the caregiver consults their loved one to ensure they are comfortable with the caregiver outsourcing these duties.
Some companies even offer transportation services for cancer patients. Companies like Road to Recovery, Lyft through the American Cancer Society and Angel Flight all offer rides to patients who are unable to afford or coordinate their own methods of transportation. Church groups and hospital services may also offer transportation, but caregivers should arrange any options in advance. Caregivers should also assess their finances and ask the patient what makes them most comfortable prior to making any decisions regarding transportation.
Resources for Mesothelioma Caregivers
Caregivers should know that they are not alone. There are many different resources and caregiver support groups that can provide insight and emotional support throughout the process. For more information on caregiving, here are additional resources and support options: