How an MPN Care Partner Handles Burnout

How an MPN Care Partner Handles Burnout

How an MPN Care Partner Handles Burnout from Patient Empowerment Network on Vimeo.

MPN Network Managers Summer and Jeff discuss care partner burnout. Jeff is the caregiver of Summer who is living with myelofibrosis. Jeff admits to doing majority of the research so he can properly advocate for Summer’s care. In this video, Jeff talks about various outlets he uses to counteract burnout such as photography, music and improv theater.

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

 


Transcript

Summer:

Wake up. I’ve finished making your bonbons, Jeff. You said you wanted these.

Jeff:

Thank you, Summer. Mmm.

Summer:

Is it delicious?

Jeff:

It’s delicious. Just what I needed.

Summer:

Well, I’m glad I could please you.

Jeff:

Well, I’m Jeff.

Summer:

I’m Summer.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network. We’re here to talk to you today about…

Summer:

What caregivers do, and sometimes caregivers might get burned out. So, we’re talking about what you can do periodically to not get burned out, to keep going, and being great like you are. What are some of the main things you do, Jeff?

Jeff:

Well, I…one of the main things I do is try to remove myself from worrying about myelofibrosis and Summer’s disease. And I go out into nature and I take a lot of nature pictures. I go to National Parks, and take pictures of scenery, beautiful scenery, and big mammals and stuff, which I really really enjoy doing. It sort of clears my head and really refreshes me. I recently took a trip, as a matter of fact, to Yosemite. That’s one of the things I do.

Summer:

And another thing has to do with music.

Jeff:

Yes, I love music and I play in a band. I play the keyboard and the guitar, and I do that once a week at my church and I really really…again it requires quite a bit of focus and it puts my mind in a completely different place. So I remove myself from the worries, is one of the things I do. I’m very fortunate because Summer is doing quite well and doesn’t need huge amounts of physical care.

Summer:

Right, but you do all of the medical stuff because I can’t stand to hear about medical stuff, it’s boring.

Jeff:

That’s right. I do do a lot of the research and keep up with what’s going on in the myelofibrosis area and that’s kind of what my portion of the caregiving is. We’ve talked before about working with, dealing with these disease requires a team approach: the patient, the caregiver, and the medical team.

Summer:

Right.

Jeff:

It’s very important.

Summer:

And we also do improv. That really helps.

Jeff:

That’s correct. We’ve mentioned before that we run a small theater, and one of the things we do in the theater is improvisational theater. We make things up, now you’ve got to be in the moment, so your head can’t be disclouded and worrying about other things. It takes your mind off of the disease, and in my case, worrying about Summer’s disease and the caregiving responsibilities. So that helps us. It actually helps both of us a lot.

Summer:

Right. So do you want any more bonbons or is that a no?

Jeff:

I’ll just take another bite. You know, if we keep going like this, you could become the caregiver and I’ll be the patient. So until next time, I’m Jeff.

Summer:

I’m Summer.

Jeff:

Bye!

Summer:

Bye!