Tag Archive for: PEN Network Mana

Roles Reversed: Taking Care of Your Care Partner

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Roles Reversed: Taking Care of Your Care Partner from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Summer and Jeff are experiencing a bit of a change. Jeff is Summer’s care partner, however the roles have been reversed. Jeff recently had a knee replacement and is unable to do many tasks he was before. Summer has jumped in taking care of Jeff, but admits it’s harder than it looks. Watch and hear Summer’s comedic take on switching roles and stepping into the care partner role.  

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

Transcript:

Jeff:

Summer! Bring me a snack.

Summer:

Yes, I’m bringing you a chocolate bonbon.

Jeff:

I don’t want a Ghirardelli, I want a Walker’s shortbread.

Summer:

Ugh, yes sir.

Being a caregiver is not a day in the park.

Jeff:

Hi, I’m Jeff.

Summer:

I’m Summer, hi.

Jeff:

We’re your MPN Network Managers for the Patient Empowerment Network. We’re here today to continue talking about caregiving. In the last video, we talked about me being Summer’s caregiver and or different roles and what I bring to that and so on. We had a chance in the last month to actually turn the tables.

In mid-December I had a knee replacement and since then, Summer has been acting as my caregiver. Tell us how it’s been, Summer.

Summer:

Ugh, it’s been exhausting. I’m driving, I’m doing dishes, I’m emptying the garbage, I’m cooking all the meals, I’m getting everything exactly the way you want. You’re lot more of a perfectionist than I am…

Jeff:

Yup, I should be able to drive in another week or so and Summer hates driving, so I really appreciated that. And pretty soon I’ll get back to my role of doing the driving anyway. She’s done a wonderful job, really been very helpful and I’ve been extremely appreciative of it. What’s been the hardest thing for you, Summer?

Summer:

Thinking about all the little things you take for granted that you couldn’t do, like mailing your letters and emptying your garbage. That’s everything, you really have to be on the ball and think of what the needs of the other person really are.

Jeff:

Very true. We stressed that in the last video. Needs of the patient. We have a real supportive relationship in our normal marriage in general, so for us it’s not difficult, but some people may have a difficult time adjusting to being a caregiver or even being a patient.

Summer:

Right.

Jeff:

One thing you have to remember, give the caregiver time for themselves. I think I did a pretty good job trying to give you time for yourself.

Summer:

Yeah, I did my aerobics, I visited friends, I rehearsed for the play, I did my stand-up comedy, yeah, I did.

Jeff:

So, it’s worked well for us. So, as you enter into this relationship of patient and caregiver, be aware of each person’s needs. And, you should have a good experience with it.

Summer:

Darling, I have an urge for a chocolate cookie. Could you bring me one? I gotta take a nap.

Jeff:

Certainly. I’ll get it after we say goodbye to the people. Goodbye, ’til next time.

Summer:

Bye, ’til next time.

Patient and Care Partner Address the Mental Aspects of an MPN

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Patient and Care Partner Address the Mental Aspects of an MPN from Patient Empowerment Network on Vimeo.

MPN patient Summer emphasizes how important it is to have goals. One of her personal goals is to walk 10,000 steps each day! As a care partner, Jeff shares his main goal is to do whatever he can to help Summer achieve her goals. Some of their shared goals are to live life to the fullest, always live in the moment and don’t let the disease you have control your life.  

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

Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

Hi, I’m Summer. And hi, I’m Zelda.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network. Here to talk to you today about emotional and metal aspects of dealing with a severe or very serious disease. Summer has some real strong thoughts about that, so I’m going to let her tell you about it.

Summer:

Well, I think it’s really important to always have goals. And one of my first goals, this is my Apple Watch right here to keep track of my steps so I can get 10,000 steps a day. That’s really important. Of course, I’m still teaching my classes. That’s very inspiring. We’re putting on a show pretty soon. And my goal right now too is I’m getting ready for my next comedy show. I’m going to talk about the cloud and about those little people that are in the traffic signs that tell you when to stop or go. And of course I’ve got Zelda and I don’t know what her goal is, just to be a good dog. So, that’s what my goals are. To stay positive.

Jeff:

And Summer has those goals, but one serious and important thing that we decided when she got this disease was we were going to live every life, every moment of our lives to the fullest, in the moment. And that took some adjusting because I’m a real planner. We pay attention to enjoying everything that we do, each day that we do it. And, we decided early on not to change our lifestyle, not to let the disease control us, and just to keep going. And, that alone plus Summer’s fantastic exercise regimen has really done a lot to keep her in good shape and to keep her strong.

As a caregiver, my goals are do whatever I can to help her achieve her goals. So, it’s really important to live life in the moment and keep a positive attitude. Don’t let the disease control you. That’s our advice.

‘Til next time, I’m Jeff.

Summer:

I’m Summer and I’m Zelda.