Caregiving for Cancer in Seniors: Mesothelioma

Recently I've been thinking that I'd like to begin a mini-series of posts about caregiving for loved ones who have a rare disease. If YOU are a caregiver of someone with a rare disease and would like to be interviewed about your experience, please contact me at [email protected]. 

Today I would like to focus on the caregiving of a specific type of rare cancer–mesothelioma.

What is Mesothelioma?

Mesothelioma is a very rare cancer that occurs in the lining of the body’s internal organs known as the mesothelium.  Mesothelioma can occur in the lining of the abdominal cavity and the lining of the heart but roughly 70% of cases occur within the lungs.  Mesothelioma is caused by exposure to asbestos and the inhalation of asbestos particles.  This is a very unique rare cancer because after an individual is exposed to asbestos, there is a very long latency period.  Typically, patients will not experience cancer symptoms until many years after exposure. 

When diagnosed with mesothelioma, the prognosis is usually poor, as there is no cure for the disease and typically, it is discovered at a late stage of development.  Generally, the earlier mesothelioma is diagnosed, the better prognosis a patient has.  

Depending on where in the body mesothelioma is present, symptoms can be: difficulty breathing, pain, nausea, poor circulation and irritable bowel syndrome.

The Difference Between Caring for Seniors and Mesothelioma Patients

Most people today have some responsibility to give care in their family. Fortunately, very few people will be mesothelioma caregivers because the disease is so rare.  It is estimated that only 3,000 people in the United States are diagnosed each year.

Due to it’s long latency period mesothelioma patients are almost always senior citizens.  Since they are victims to this rare cancer they will require much more attention than the average elderly adult.  Their naturally decreased health coupled with their diagnoses calls for much more intense care.   On top of helping patients adhere to their treatment plan caregivers have to be sure to constantly provide emotional support because mesothelioma diagnoses are so aggressive and grave.

Types of Care that Mesothelioma Patients Need from their Caregiver

Since  mesothelioma is such a rare cancer a patient's needs will often differ based on the kind of treatment they choose to undergo.  Treatments typically include a combination of radiation therapy, chemotherapy, and surgery.  There are also several different experimental treatments that have seen success through clinical trials, the most notable being immunotherapy.  With so many different treatment options a caregiver must be prepared to deal with not only natural aging but also the accelerated health deterioration that comes along with the different treatment options.  

Much of the medical based care can only be performed by licensed medical professionals.  Caregivers will be absolutely integral in helping maintain all of a patient's care outside of medical facilities, and for emotional support in hospital too. Throughout the different stages of mesothelioma, many patients rely on their caregivers for very basic daily things.  They will likely help patients get dressed, shower, brush their teeth and comb their hair.

One of the most important things a caregiver can provide a mesothelioma patient is the gift of presence.  With such aggressive treatment plans and grim diagnoses patients will need emotional and mental support more than anything. In order to battle this disease, patients need a very available and attentive caregiver.  Caregivers are as just as essential to a mesothelioma patient as their treatment.

If you need legal or financial advice on how to manage caring for a loved one with Mesothelioma, click HERE. 

Thanks to guest blogger Jackie Clark and to blogger/caregiver Cameron Von St. James for this week's Mesothelioma caregiving post. I've featured Cameron's caregiving story before HERE at the Caregivers' Living Room.