"When Caregiving Comes Your Way" (12 tips, etc)

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"When Caregiving Comes Your Way" (12 tips, etc)

Postby Robin » Wed Dec 04, 2013 1:15 am

Someone in the local support group shared this link with me recently:

http://www.tedxsmu.org/talks/pamela-nel ... xsmu-2103/

Pamela Nelson, a Dallas-based artist, speaks about "when caregiving comes your way." This is a 12 minute online video (12:38) that was posted last Tuesday 11-19-13.

At 3:07, she begins the story with her husband Bill's hernia surgery. He was never quite right after the surgery. At some point after that, he was diagnosed with PSP (progressive supranuclear palsy), one of the disorders in our support group. His first symptoms were drooling and falling.

Pamela and Bill have been married for 45 years. He's had PSP for 12 years. For the last 5 years, she describes herself as Bill's "total care partner."

Bill focuses on what he has left -- humor, wit, and joy of his grandchildren. Pamela says that Bill is not fighting PSP. He is "making the most meaningful life he can." His spirit is strong. His family is amazed at his grace; he has both patience and acceptance. He loves what is, not what we wish could be.

At 6:26, Pamela begins to share her caregiving tips:

1. What you do repeatedly has great power to change you...for better or worse. You become what you do.

2. Laugh...with each other, at movies, with friends, whatever it takes, just laugh.

3. Get help, paid or unpaid. It is impossible alone. And self pity sucks.

4. Exercise helps with depression. I love yoga and swimming. We both go to a chair dance class.

5. Music lifts spirits. Keep the music coming.

6. Remember: you can only choose your reactions, not the situations.

7. Flow and Pause // Breathe // As you move from task to task; flow // Pause // Breathe

8. Remind yourself on days you hate everything: how do I want to act? With kindness and courage.

9. Get out of the four walls, every day, if possible. Try to think of something our of your routine.

10. Forgive each other and yourself. Repeat as needed.

(Her comment on #10: "It doesn't do me any good not to forgive those who don't help or who don't come around any more.")

11. Filter advice, while trusting that you understand what works for you.

12. Keep changing the solutions as the problems change. Arrange whatever pieces that come your way.

At 9:39, Pamela said that in the early days of being married, she thought that sacrifice was to be for art.

Each night, she and her husband end the day by getting into bed, holding hands, and sharing highlights of the day. They reflect on these highlights. Then they sing taps, and recite the Lord's Prayer. Then there is quiet and they sleep.
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