BE INFORMED
Strategies for the Care Team:
Strategies
Living Well Today
Connie Carpenter Phinney
The Victory Summit – San Antonio | November 14, 2015
©2015 Davis Phinney Foundation
www.davisphinneyfoundation.org
But first, a little bit about me …and you…
• My mom had MS.
• She was diagnosed when I was 5.
• My husband has PD.
• He was diagnosed when he was 40 – our kids were 6 & 10.
• That was 15 years ago,
• Our kids are 21 and 25.
• I’m tired of living with chronic illness.
• But I’m up to the task.
• Why I don’t like the term ‘caregiver’
• Let’s talk about all of it.
©2015 Davis Phinney Foundation
The Victory Summit – San Antonio | November 14, 2015
www.davisphinneyfoundation.org
What I / We Know About PD * *
…(too much, right?)
• It doesn’t “play nice”
• It’s 24/7
• It’s unpredictable and
complex
• He didn’t ask for it,
•
…neither did I
• We have to fight for
quality of life
**and it’s not just neuroscience…
©2015 Davis Phinney Foundation
The Victory Summit – San Antonio | November 14, 2015
www.davisphinneyfoundation.org
Transitions
There are many documented stages of chronic illness:
diagnosis = crisis followed by acceptance, adjustment,
resolve and renewal
What are the stages of care giving?
1. Friend to helper
2. Partner/spouse to caregiver
3. Responsibility shifts to you
4. You need help
According to a government survey 60 million Americans
describe themselves as caregivers.
The Victory Summit – San Antonio | November 14, 2015
©2015 Davis Phinney Foundation
www.davisphinneyfoundation.org
What about the negative aspects of
caregiving?
Fear, Resentment, Fatigue, Isolation, Depression. Burnout.
– How will I cope?
– What if I get sick?
– Who cares for me?
– What about money?
– What about me?
How can we keep ‘it’ from being too much?
.
How do we grow flowers through all these
weeds?
©2015 Davis Phinney Foundation
The Victory Summit – San Antonio | November 14, 2015
www.davisphinneyfoundation.org
My Team.
• Family
members
• Friends
• Health care
providers
Who carries you?
DO: Make a list of people
you trust.
DO: get to know the
medical team.
DON’T: Wait.
DON’T: let your PWP go to a
doctor appointment
without you.
©2015 Davis Phinney Foundation
The Victory Summit – San Antonio | November 14, 2015
www.davisphinneyfoundation.org
So, Who is On Your Dream Team?
Don’t forget Resources:
•
Support groups
•
Diversions
(classes, book groups)
•
Faith groups, prayer, meditation
•
Websites like AARP.org
•
Counseling
©2015 Davis Phinney Foundation
The Victory Summit – San Antonio | November 14, 2015
www.davisphinneyfoundation.org
Rules of Engagement w/PD
• No Ladders!! Ever.
• I’ll cook, you clean up
• Rx: Exercise your body
• Play
• Accept Help
• Be polite:
• Please + Thank you.
©2015 Davis Phinney Foundation
The Victory Summit – San Antonio | November 14, 2015
www.davisphinneyfoundation.org
We Can Choose HOW to Live
• Make time + take time
for yourself
• Task and challenge your PWP
• Reminisce + tell stories
(www.SOLU.pub)
• Dance together
• PD-free moments
• Hardwire your brain*
and restore happiness
*Hardwiring Happiness, a book by Rick Hanson
The Victory Summit – San Antonio | November 14, 2015
©2015 Davis Phinney Foundation
www.davisphinneyfoundation.org
Action Steps:
ü Manage the care
ü Build the Team
ü Plan
ü Re-wire ‘do-over’
ü Set Boundaries
ü Stay positive
ü Take care of you!
The Victory Summit – San Antonio | November 14, 2015
©2015 Davis Phinney Foundation
www.davisphinneyfoundation.org
Resources:
ü Books:
• Help, Thanks, Wow by Annie Lamott
• Hardwiring Happiness by Rick Hanson
• 10% Happier by Dan Harris
ü Programs
• www.solu.pub (online journal)
• www.danceforparkinsons.org
• www.rocksteadyboxing.org
ü Humor
• Bring back the humor: watch or
listen to comedy like Veep or Modern Family
ü AARP
The Victory Summit – San Antonio | November 14, 2015
©2015 Davis Phinney Foundation
www.davisphinneyfoundation.org