Patient, Executive Director, Meningioma Mommas

Q. How did you become a caregiver?
A. My elderly aunt was diagnosed with seven meningiomas.

Q. Did you have any training? From what source?
A. No. I’m not sure any type of training could have prepared me. I learned as I went.

Q. What resources (or lack of resources) helped or hindered you / your patient?
A. There were limited resources for both myself and my aunt and most of the information I found on the Internet was scary and demoralizing. Luckily I joined Meningioma Mommas, an online support group, and that helped us both enormously. The members educated me on what to expect during my aunt’s surgery and recovery as well as provided hope to her that she could survive and return to a normal life.

Q. What are some challenges you faced?
A. Ignorance of what it meant for someone to have a brain tumor, getting straight answers from the medical profession, juggling my own family’s needs with that of my aunt’s, trying to provide hope on the bad days and battling exhaustion.

Q. How did you interact with your patient?
A. By never telling my aunt how she should or should not be feeling and, while trying to be as positive as possible, avoided telling her that everything would be OK as no one can guarantee that. I was realistic and honest and that served us both well.

Q. What was the most difficult part to being a caregiver?
A. Putting my life on hold and not knowing when things would return to normal. Dealing with brain surgery recovery has its own inherent challenges unlike those patients recovering from other types of surgeries.

Q. How was your life changed by this experience?
A. It enriched my relationship with my aunt and made me much more compassionate and understanding of all that those suffering with a meningioma go through. As a result I now volunteer for the very organization, Meningioma Mommas, that helped us when my aunt was first diagnosed.

Q. Do you have any advice for people who are about to take on this role?
A. Try and get as much help as possible, have time off and be prepared for the bad days. Have a family meeting upfront and if you can, delegate specific caretaking duties.

Q. Knowing what you know now, what would you have done differently, if anything?
A. As well as the physical care of my aunt, I was also the contact for anyone wanting to know how she was doing. At the end of the day, it was exhausting to have to call and email everyone with updates. Nominate one person to do that for you.

Q. What helped you the most during your caregiving role?
A. Knowing when to have a time-out and to not feel guilty.