Clapper, Patti, Schweizer and Mason

Mesothelioma is a rare, aggressive form of cancer primarily caused by exposure to asbestos.  The majority of those diagnosed with mesothelioma were exposed occupationally when they came into contact with the carcinogenic mineral not recognizing it or knowing it was dangerous to inhale or ingest. 

Even when manufacturers and employers knew of the risks to health, many did not put warning labels, provide training or protective gear, or take safety measures to protect their employees.  Sadly, even now, when so much is known about how devastating mesothelioma can be and how easily avoided employers still will put workers at risk.

Mesothelioma has a long latency period of 10 to 40 years from time of exposure to development of disease, and therefore most are not diagnosed until the age of 50 or beyond.  The majority of patients are male, although some females and even a few younger people can develop mesothelioma, either through direct or second hand exposure.  For this reason, and for cultural reasons, caretakers of patients diagnosed with mesothelioma tend to be women, but not always.

Being a support person to someone diagnosed can be both rewarding and heartbreaking.  Often support people have a sense of satisfaction in knowing that they are offering support, love and care to someone they love.  On the other hand, support people are the ones that are usually doing all the giving, offering all the help, but not receiving any nor asking for any help.  This can be exhausting, painful, and isolating at the same time as feeling redeeming by giving much needed care.

Being a support person for someone diagnosed with cancer is often much like being on a roller coaster, from finding out about the prognosis, trying different treatments, watching a loved one in pain and confusion, and feeling all the many emotions that arise.  Unlike other cancers, mesothelioma has no cure.  Everyone knows there will be an end time, usually less than a year from diagnosis, although there have been some that have survived longer.  The caregiver knows there is their loved one will not be getting better, and for most, this requires an emotional process of heart and mind.

In addition to all that, there are daily changes and disruptions to everyone’s lives:  work, project, and life plans interrupted, changing demands on one’s time (such as doctor’s appointments, caretaking duties, etc.), and financial strains.  Most do not have the money or desire to have someone else cover the necessities of caretaking, and therefore do what is necessary.  They rearrange their normal schedules, take over all household duties, physically care for the loved one, arrange treatments, hospital visits and doctor appointments, administer medications and after care. 

Most support people adjust to these changes, but often miss the emotional and psychological toil it is taking on them.  They will put aside their own needs and problems, feeling they don’t warrant attention compared to the one with cancer, or not wanting to cause any upset to someone battling mesothelioma.    However, as the months proceed, even the support person will need to put attention to their own life and own problems otherwise they become bigger.  Exhaustion, anxiety, diminished health, depression – all very common occurrences – will overwhelm and incapacitate the caregiver. 

What I would like to stress is that if you are a support person, please get some support for yourself as well.  You might be surprised, but being mesothelioma attorneys who only take asbestos cases, we have witnessed this all too many times – and it breaks our hearts to see the person who cares so deeply begin to suffer as well as our client.  We can not overemphasize the importance of talking with someone and getting support yourself.  May seem strange, but the best support often comes from a support group or person who is not close to either you or the loved one.  This gives you freedom to express some of the challenges without worrying about offending anyone, having to “be nice”, or present a picture that doesn’t allow you to express the depth and messiness of what you might be experiencing.

Finding someone or a group to share with who is going through or has had similar experiences, will  help you realize EVERYONE has had the same feelings and thoughts as you in some version and to some degree.  Cancer is not personal, and the feelings and thoughts that arise as a support person are often universal.   Often the only way a caregiver truly realizes this is by sharing it with others and/or hearing others express what they are experiencing. 

In order to avoid break down, frustration, needing to leave, powerlessness, turning to alcohol or substances, etc., ask for help before you get too depleted.  You do not have to do this alone.    It’s okay to take care of yourself too, and to laugh sometimes, to remember good times, to have fun times in the midst of tragedy.  The person you are caring for, as well as you, will benefit.