Mesothelioma Nurse Explains The Need for a Caregiving Team

• Lisa Hyde-Barrett
• Mesothelioma, Nurse's Corner

Having mesothelioma can be devastating and overwhelming. It makes your mind and your loved ones’ minds spin. There are a thousand questions you have, both answered and unanswered. I have answered many of these questions, but over the years I have asked my share of questions as well. One of the most important things I have learned from the patients and their families, is that a strong care team is vital to recovery.

I have watched each case, and I have noted what seems to work and what doesn’t always work. I would say that having a strong support system is definitely key to easing the stress of the mesothelioma patient. You should not only designate a primary caregiver, but you should also select other friends and family members who can serve as backup.

You may think that you and your significant other can handle what comes along with mesothelioma, but that is not always the case. Things can go wrong, or at least not work out exactly how you figured they would. It happens more times than not. If possible, you should have people around you who are committed to helping you with all of your loved one’s healthcare needs.

Who can be there for you at the drop of a hat if you need a ride to a chemotherapy appointment, or if you need to see a doctor when you are not feeling well? In the best possible situation, you could have three to four people who have a flexible schedule and are able to commit to being available with little notice.

Recently a middle-aged patient and his wife came in for treatment. Unfortunately, things have not gone according to plan. The patient’s stay in the hospital has been extended, and feels like forever to his wife. This unexpected development has left her frightened, alone, and far from any other support system that she has. Her reactions have taken a toll on her husband’s emotional well being, and have challenged the medical professions who are caring for him.

Her fear and frustration have become crippling to her. She is the primary support for her husband, but she has little, if any, support for herself.

It is ok to be the caregiver and to acknowledge the need of time for yourself. There are support staff within any large medical institution who can offer you support. They can be helpful and are great sounding boards, are non-judgmental  and they can see your unique situation from a different perspective.

After a rough few days the wife agreed to call her sister to come and help her, taking all of the responsibility off her shoulders, and sharing it.  A true sign that strength is in numbers!

If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].

Know more about Mesothelioma and how you can deal with it.