Understanding the extent of mesothelioma caregiver duties allows families to fully prepare for the care of their loved one. Coming together as a family to discuss these tasks and responsibilities helps everyone involved understand the scope of what lies ahead and how to plan accordingly.
Mesothelioma caregiving duties may start out as minor tasks that slowly transition into more demanding forms of care as the cancer progresses. Most mesothelioma patients are older than 60, and this means they may require more care even in the initial stages of the cancer’s progression.
Creating a care plan helps families agree on how to handle and divvy up a growing list of caregiving duties.
How to Create a Care Plan with Family & Doctors
A care plan outlines a patient’s medical needs, treatment plan and daily care required to promote health. Creating a care plan with the patient’s doctors and family members helps the patient get the care they need to thrive.
A care plan also serves as a point of communication between family members to keep everyone updated on the patient’s health and changing needs. For example, when an aspect of care is changed, such as changing the time a medication is taken, the care plan can be updated and redistributed to everyone providing care.
If you are unsure what kind or level of care may be required, you can hire a professional to complete a care assessment. This will provide detailed information on the kind of care a mesothelioma patient will need.
You may want to include the following in the plan:
- General information about the patient such as their personal background, hobbies and interests
- Patient’s medical conditions, medications and health care providers
- Patient’s insurance information and preferred hospital
- Resources for caregivers such as contact information for secondary caregivers and local support organizations
- Copies of personal care agreements and advanced care directives such as living wills and power of attorney
- Emergency contact information and directions for what to do in case of an emergency
- Daily care instructions
A mesothelioma patient typically requires a high level of medical care. Mesothelioma caregivers may become responsible for the following medical-related duties.
- Arrange for deliveries of medical equipment and supplies
- Operate, adjust and clean medical equipment
- Change dressings of surgical wounds
- Monitor vital signs such as blood pressure
- Track changes in health
- Create and maintain a care plan
- Arrange medical appointments
- Coordinate care among caregivers and health professionals
- Greet and supervise health care and home care professionals
- Teach secondary caregivers how to provide care
- Designate a durable power of attorney for health care
Prescription Medication Management
Another major component of medical care involves managing medications. In a 2021 research study, caregivers predicted an improved prognosis for their patients when both were in agreement about managing multiple medications.
Mesothelioma caregivers can expect to help with the following medication-management duties:
- Order and pick up medication
- Understand medication labels, instructions and drug interactions
- Research side effects to monitor
- Store, prepare and administer medication
- Plan and maintain medication schedule (use a medication tracking worksheet)
- Monitor to ensure medication is taken properly
Driving and Arranging Appointments
Caregivers often arrange for and drive their loved ones to medical and social appointments. Consider the following tips to help with driving and making appointments.
- Track transportation mileage for compensation
- Consider hiring a caregiver to drive your loved one to certain appointments
- Use a handheld planner or digital calendar to keep track of appointments
- Plan to run several errands at once to save time
Cooking and Nutrition
A big part of caregiving is making sure your loved one gets the nourishment they need. The nutritional needs of mesothelioma patients vary depending upon the treatments they receive, the medications they take and co-existing health conditions.
Caregivers should plan accordingly for the following duties.
- Shop for food
- Plan and prepare meals
- Prepare special meals such as liquid-only diets
- Arrange for grocery and meal delivery services
- Research nutritional needs for mesothelioma patients undergoing treatment
- Take the patient to see a nutritionist
Grocery and Meal Delivery Services
Handling these tasks is time consuming. Caregivers can save time with grocery and meal delivery services. The availability of these services varies upon where you live. You can research options online.
The costs for these services range from affordable to expensive. Grocery delivery involves an annual or monthly fee for delivery in addition to the cost of the food you order.
Meal delivery costs depends upon several factors such as whether the meal is frozen or contains fresh ingredients. For example, Meals on Wheels is an affordable option that delivers frozen meals. Hello Fresh is a costlier option that delivers meal kits containing premeasured, fresh ingredients to make a meal at home.
Bathing and Grooming
Many caregivers help their loved one with bathing, grooming and maintaining hygiene. While this is one of the hardest parts of caregiving for many people, it is important to maintaining the patient’s quality of life.
As mesothelioma progresses, caregivers may consider the following tips:
- Bathing: Get a sturdy shower chair from a medical supply store. Use it along with a rubber bath mat and safety bars to support the patient and prevent falls. Prepare all the supplies you will need ahead of time. Reach out to a caregiving organization for tips and advice if bathing becomes stressful on the patient or caregiver.
- Dressing: Helping a loved one with dressing may include picking out clothing, laying clothes out and assisting with putting clothes on. Allow the patient to do these tasks unassisted for as long as they can and offer to help only when necessary.
- Grooming: Assisting with grooming and hygiene may help your loved one feel better. This may involve brushing teeth, shaving, trimming nails, applying deodorant and lotion, putting on makeup and brushing hair.
- Toileting and incontinence care: The progression of mesothelioma or its treatment may lead to incontinence, or issues controlling the bladder or bowels. Caregivers may need to help their loved one cope with incontinence and toileting. This may involve helping them get to the bathroom, attending to accidents and buying supplies such as pads and adult diapers.
Housekeeping and Laundry
Maintaining a clean house and keeping up with laundry is hard for a single caregiver to do alone. These tasks are important to reducing a mesothelioma patient’s exposure to germs, colds and flus. Reach out to family, friends and neighbors for help with the following duties.
- Conduct safety checks to remove potential hazards around the house
- Sanitize bathrooms, kitchens, work surfaces, countertops, door handles and appliances
- Wear gloves to clean toilets and wash clothes soiled with bodily fluids to avoid contact with chemotherapy drugs that pass through bodily fluids and excretions
- Change bed linens weekly or as needed if the patient has night sweats
- Sweep, vacuum and mop floors
- Tidying up living spaces
- Maintain the exterior of the home and yard
Companionship and Socialization
Companionship and socialization can boost mood and improve quality of life among mesothelioma patients. Caregivers may find themselves fulfilling the following duties.
- Spend quality time together doing activities the patient enjoys
- Provide emotional support
- Make phone calls to catch up with friends and family
- Organize social outings
- Arrange visits with loved ones
- Take the patient to a support group
- Meet up with a religious community or seek spiritual support
- Arrange for companion care available through a church, hospice or paid service
Caregivers are also strongly encouraged to socialize and connect with friends to take a break from caregiving. This time away spent with friends helps caregivers release stress and recharge.
Caregiving also involves taking over financial matters, which is challenging if it was handled by the mesothelioma patient prior to their diagnosis. Caregivers may need to ask a trusted loved one for help in this area, or they can consider hiring a financial or legal advisor.
Caregivers should plan to handle the following financial duties:
- Coordinate and pay household and medical bills
- Understand health insurance coverage and potential out-of-pocket costs
- Research financial aid such as medical grants, Social Security Disability and mesothelioma trust funds
- Understand how federal programs, such as the Family and Medical Leave Act, may help caregivers keep their job and health insurance coverage
- Learn about tax deductions for medical expenses
- Designate a durable power of attorney for financial affairs
- Create a financial plan and track all medical expenses
- Write a will, designate beneficiaries and make decisions about funeral services
Being Prepared for the Unexpected
Caregivers are encouraged to prepare for unexpected emergencies and health events. Feeling prepared can reduce anxiety in caregivers and patients when the unexpected arises.
Consider the following duties to prepare for unexpected events and final decisions.
- Make plans for a medical emergency and how to respond in event of a natural disaster
- Build a medical emergency kit in case of an emergency room visit
- Designate durable power of attorney for health care
- Fill out an advance directive for medical decisions (also called a living will)
- Write a will to ensure your loved one’s wishes are fulfilled
Should I Hire a Caregiver?
Deciding whether to hire a professional caregiver can be hard on families facing mesothelioma. Some families are unsure if they will feel comfortable with someone else caring for their loved one. While other families want outside help, but don’t know how to afford it.
In most cases, it takes more than one caregiver to care for someone with mesothelioma. Often, families come together and divide tasks among family members. Spouses or adult children tend to take on a primary caregiving role, and this role requires a lot of support from secondary caregivers.
When primary caregivers don’t get enough help, they should consider hiring a professional caregiver.
Different types of caregivers are available for hire, including personal care assistants, home health aides, licensed nursing assistants, skilled nursing providers and registered nurses. Full-time and part-time help is available.
Qualities to Look for in a Caregiver
Consider the following qualities when looking to hire a caregiver:
- Kind demeanor
- Can-do attitude
- Compassion and empathy
- Attention to detail
- Good communication skills
- Physical fitness or strength
Respite care offers short-term relief for primary caregivers. This kind of care can be arranged for a few hours, several days or weeks. It may be provided at home, at a health care facility or adult day center.
The cost of respite care varies and sometimes insurance may cover a portion. For example, Medicare covers most of the cost of up to five days in a row of respite care for patients in hospice.