Neuropsychologist Kyrstle Barrera, PhD spoke to the Palo Alto Parkinson’s support group meeting last Wednesday. She talked about “Balancing Loss and Connection” when coping with a neurodegenerative disease.
She encouraged us to let the answers to the following questions guide how you make your decisions and spend your time:
1. When do I feel the closest to my loved one?
2. When is this disease furthest from my mind?
3. When do I feel the most nourished?
Besides these three questions, check out Dr. Barrera’s handout (below) for the practical tips she offers.
Robin
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“Balancing Loss and Connection”
Kyrstle Barrera, PhD
Handout from 12-10-14 presentation to Palo Alto PD Support Group
Let the answers to the following questions guide how you make your decisions and spend your time:
1. When do I feel the closest to my loved one?
2. When is this disease furthest from my mind?
3. When do I feel the most nourished?
Practical Tips
* Take care of yourself.
* Reminisce with your loved one.
* Talk about the things that are difficult.
* Schedule
– Schedule pleasant activities just like you do appointments and medications
– Schedule time for activities that allow you to be ONLY a spouse/child
– Schedule activities that are minimally impacted by symptoms (movies, music, people watching)
* Continue to socialize/build support network
– Support groups
– In person meetings with friends/family
* Use technology to help reduce your mental load!
– Set alarms
– Create check lists
– Take notes and pictures
* Use technology to help stay connected and keep everyone involved
– Video chat
– Speaker phone
* Prepare in advance
– Conversation topics/questions to ask
– Discuss answers to potential questions together beforehand
– Provide education to those around you, if needed (can be written material, too)
– Don’t avoid the elephant in the room
– Explain symptoms
– Let others know what to expect
– Give others tips on way to maximize communication
* Schedule time each week to emotionally “check in” with yourself and one another
* Take time to look back and gain some perspective on a regular basis (what did you enjoy the last week/month, how can you do more of that?)
* Think about the things “you wish you would have…” and do them.
* Journal
* Consider couples/family therapy
* Utilize your support network
– Accept help when it’s offered
– Delegate responsibilities when you can