The Pacific Neuroscience Institute (Santa Monica, CA) hosted a webinar today on Parkinson’s caregiving. It featured a social worker and two Parkinson’s caregivers. The social worker, Sheila Moore, addressed the wellness wheel, tips of empowered care partnering, and “parallel journeys.” Two spouse caregivers spoke a bit about their greatest challenges. Stanford Parkinson’s Community Outreach attended the webinar and is sharing our notes.
The social worker, Sheila Moore, pointed out that while caregiving is about expecting the unexpected, the “unexpected” is not necessarily something bad. The “unexpected” could be laughter, community or connectedness.
She shared these ten tips for empowered care partnering:
1- find out as much as you can about PD
2- embrace the navigation of what might be different in your life with a diagnosis
3- honor your own process (that is in parallel with the person with PD)
4- recognize PD caregiving is a marathon (pace yourself; sustained; find watering stations), not a sprint
5- oxygen mask (take your oxygen first; the oxygen mask is different for everyone; the oxygen mask may change over time so how you change for yourself over time may change)
6- find the balance in over caring and under caring
7- move yourself up on the “to do” list
8- watch for the warning signs of care partner stress (memory problems, feeling on-edge, having a shorter fuse; fatigue) and don’t keep bulldozing your way through
9- remember you are not alone
10- we have all done a yeoman’s job in getting through covid. We can’t minimize what we all have done during the pandemic. (It’s still not over.)
Two wives spoke about caring for husbands with PD. One wife had recommended the Curable app (curablehealth.com) for chronic pain to other caregivers in a support group meeting. The second wife who spoke was also using this app.
Eventually, the webinar recording will be posted to the PNI website.
My detailed notes are below.
Robin
PD Caregiving
Webinar, 10/3/22
Host: Pacific Neuroscience Institute (Santa Monica, CA)
Notes by Robin Riddle, Stanford Parkinson’s Community Outreach
PART #1 – Short presentation by Sheila Moore, LCSW
Care partner vs. caregiver
She prefers “partner” as, in the early stages of PD, it’s a partnership.
Navigating the road ahead.
Partners ride the emotional rollercoaster.
Changing landscape.
Partnership in care planning.
Parallel process (with the person with PD): before diagnosis, with diagnosis, during interventions
Mind (wellness – social, emotional, and intellectual) + Body (wellness – physical) + Spirit (wellness – spiritual)
Wellness wheel also includes environmental and occupational wellness.
Plan for wellness: education; resources/tools; lifestyle changes; engagement; emotional support; team building.
Tips for empowered care partnering:
1- find out as much as you can about PD
2- embrace the navigation of what might be different in your life with a diagnosis
3- honor your own process (that is in parallel with the person with PD)
4- recognize PD caregiving is a marathon (pace yourself; sustained; find watering stations), not a sprint
5- oxygen mask (take your oxygen first; the oxygen mask is different for everyone; the oxygen mask may change over time so how you change for yourself over time may change)
6- find the balance in over caring and under caring
7- move yourself up on the “to do” list
8- watch for the warning signs of care partner stress (memory problems, feeling on-edge, having a shorter fuse; fatigue) and don’t keep bulldozing your way through
9- remember you are not alone
10- we have all done a yeoman’s job in getting through covid. We can’t minimize what we all have done during the pandemic. (It’s still not over.)
Speaker knows these two care partners through the PRESS program and through a support group.
Expect the unexpected. The unexpected doesn’t have to be bad. It can be community and laughter.
PART #2 – Remarks by Laurie (Pincus), care partner
Husband diagnosed last year with RBD (REM sleep behavior disorder*) and AFib. RBD is where the body is not paralyzed during dreaming. A short while later, husband was diagnosed with sleep apnea.
Husband doesn’t have any obvious motor symptoms. He has RBD and GI problems.
Laurie is hyper-vigilant. She’s always watching. She’s wondering “is this the beginning of the next step of PD?” They were in their 70s. Married 47 years.
They didn’t hide the diagnosis from others.
They joined the PRESS group. This led to some good PD friendships.
Together, they joined a weekly class called “Dance with Parkinson’s.” The instructor has had PD for 14 years. Instructor said, “there are no mistakes.” 20-25 attendees. There is laughter.
Laurie attends a weekly meditation group. She has done this for 10 years. This has given her helpful skills. She doesn’t meditate daily.
She has chronic back pain. Had back surgery 2 years ago. Curable – app for understanding chronic pain. Through the app, she joined a 12-week group where she learned to eliminate almost entirely her back pain. She recognizes the connection between fear and pain. She has learned about breathing to help address her pain.
Sheila asks Laurie about challenges. For Laurie, RBD is the big thing. They need to get a bigger bed so that there can be something in between them, to protect Laurie. Melatonin has reduced the RBD.
* Laurie kept saying REM sleep disorder behavior.
PART #3 – Remarks from Viva (Knight), care partner
She attended the PRESS group and the care partner sessions. Her new PD friends are incredibly important to her.
She asked her husband what he thinks she has done that’s been good for him during the PD journey.
Her first husband Larry died of PD, in the midst of 9/11. Now, in the midst of the pandemic, her second husband Ted has been diagnosed with PD.
For first husband, she went to bookstores for subjective info on PD. That husband almost died after a test for myasthenia gravis. She had similar resources during her first marriage as she has now.
Coping with covid and PD is challenging. The line is blurred. The loss of social activity and the isolation is sad.
She and her second husband have been a performing duo (musicians); they’ve been performing virtually during the pandemic. Her husband plays the oboe. They found an OT who was more of a psychologist. The OT showed her husband how to hold the oboe. This gave the couple hope.
The best part of PD dance is the music.
Her face starts to burn when she gets agitated. Thanks to the Curable app, she knows has to calm herself.
The PRESS group continued informally after the end of the official group. Group members seem to maintain their purpose. They continue to do what makes life worth living: pottery, song-writing, and tai chi.
“Balance” in the couple. There’s a parallel with PD, of course, as it’s a disorder about balance.
She tries to remember she is important, and her health is important.
There are no bad days. There are bad moments. We can never know what’s next. The unknown is what scares us. If we can replace this grieving with gratitude, we will be better off. Gratitude towards the medical team (Sheila and Dr. Melita Petrossian).
She follows “daily intentions” or “vows.”
She is new to recognize when she is overwhelmed and anxious. She is learning to stop.
When she wakes up, she checks in with herself to know how she’s feeling. Then she checks in to see how her husband is doing.
Dr. Petrossian asks about Larry (first husband). Viva says that Larry was very depressed. “Ping Pong for Good” instructor told Larry to hold on to the ping pong table while playing. Larry’s disease course was very fast. Larry was older.
Ted (second husband) does a lot of exercise. He’s very disciplined. His cognition is better than when he was diagnosed. He hikes along with an assistant. He sings while biking.
With Larry, it was a challenge to deal with his depression. Viva had a friend she’d just take a break with. She’d go to the theatre a lot.