Recordings About Local Caregiving Resources

Chris Ritzo, RN, with Mission Hospice

Chris talked about how hospice care is provided and how it can benefit families coping with Parkinson's to enroll sooner, rather than later.

View "Palliative Care or Hospice for Parkinson's Patients" Recording

Rudy Stoltzfus, RN, with Grace Community Home Health

Rudy talked about who qualifies for home health, how home health is provided, and how it can benefit people with Parkinson's and their caregivers.

View "Welcome to the Medicare Home Health Benefit" Recording

Pablo O'Brien with South Laurel Group Professional Fiduciary explained fiduciary services.

View "How a Fiduciary Can Help You!" Recording

David Cohen with Exceptional Senior Placement shared what placement finders do.

View "Care Facility Placement" Recording

Stephanie Peters with enABLE Care Management told us about care management.

View "Care Management" Recording

Laura Sigura with Seniors at Home offered tips on interviewing an agency for hiring in-home care, what aides can and can't do, and the advantages of hiring through an agency vs. hiring individual caregivers.

View "In-home Care" Recording

Stanford and Brain Support Network co-hosted a virtual meeting on Sunday, November 14, 2-3:30pm. Attendees were invited to share "resources" and "tips" they find useful in caregiving for family members with Parkinson's Disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration. This was open to local Stanford and Brain Support Network support group members only. 

Examples of resources and tips that were shared:

• Local resources: Family Caregiver Alliance. A particular home care agency, a particular assisted living facility, or a particular board and care home. A good palliative care program. A hospice agency that offers a pre-hospice program.
• Online resources: List of exercise videos. List of exercise classes. “How to” videos.
• Tip: Sign up early for hospice. Utilize the Medicare home health benefit.

Stanford and Brain Support Network co-hosted in June 2021 a "gadget" meeting. (See our notes below about that terrific meeting.) We filled up all 90 minutes sharing helpful gadgets, equipment, and tools, so this November meeting was a follow-on meeting to all the other things we didn't have a chance to share.

The May 12, 2021 meeting focused on "Care Management for PD."  The speaker was:

Jill Melvin, LCSW, clinical care manager, Sage Eldercare, Burlingame.

She addressed:

• What is "care management"
• Do I need a "care manager"
• How can a care manager help me
• Examples of care management for Parkinson's Disease
• What if I have only a short-term need
• What if I have an ongoing need for help
• How to find/hire a care manager

Meeting materials:

> Care Management for PD presentation (PDF)

The March 2021 meeting focused on "Options for Parkinson's Care."  The two speakers were:

#1 Leslie Kefer, Home Instead, Sunnyvale.

(This office services many cities around Sunnyvale, including Palo Alto.) She addressed:

• Options for Parkinson's care (including home care, facility placement, etc.)
• What are home care agencies doing to keep people safe during the pandemic
• How to select a home care agency
• How to interview home care aides
• Having a "70/40" discussion -- what the heck is that?!

Meeting materials:

> Home Instead presentation
> List of questions to ask a home care agency (PDF)
> List of medical tasks home care agency caregivers cannot perform (PDF)
> 70/40 booklet (PDF)

#2 Corie Mina, Amedisys, Campbell.

(This office services many cities in our area, including Palo Alto.) She addressed:

• Options for Parkinson's care (including home health -- what the heck is that?!)
• What are home health agencies doing to keep people safe during the pandemic
• How to select a home care agency
• Therapies (PT, OT, ST) available through home health from therapists who may be knowledgeable about Parkinson's disease
• "Family/caregiver training" given during home health visits

Meeting materials:

> Amedisys presentation (PDF)

At the November 13, 2024 Palo Alto PD support group, the main speaker was:

Jocelyn Jiao, MD, Stanford Movement Disorders Clinic and Stanford Palliative Care

She discussed palliative care, the new Neuro Palliative Care Clinic at Stanford, when someone is eligible for hospice, and the sorts of discussions those with PD and families might have with the palliative care team.

Meeting materials:

> View Dr. Jiao's Slides
> Webinar Notes on the Stanford PD Community Blog

At the January 11, 2024 Palo Alto PD support group, the speaker was:

Jocelyn Jiao, MD, Stanford Movement Disorders Clinic and Stanford Palliative Care

She discussed the big picture about an individual's whole health and defined palliative care.

Meeting materials:

> View Dr. Jiao's Slides

The September 8, 2021 regular meeting focused on treating Parkinson's disease (PD) with a neuro-palliative approach for quality-of-life and wellness. The speaker was:

Maya Katz, MD, movement disorder specialist, Stanford University. 

She addressed:

• How PD can be treated with a focus on wellness and quality-of-life
• Importance of exercise (physical/movement, speech/voice, etc)
  
• Role of resiliency in PD
  
• "Neuro-palliative":  what does that mean?
  

Meeting materials:

> Treating PD -- Quality of Life, Wellness, and a Neuro-palliative Approach (PDF)
> "Daily Wellness Journal."  Created by Judy Long, Chaplain and Jana Guenther, Research Coordinator, University of California, San Francisco

There was a special meeting on Friday, June 25, 2:30-4pm, with a speaker not available during our regular meeting day/time. The topic was "Palliative Care for PD."  The speakers were:

Steve Lai, MD, palliative care, Palo Alto Medical Foundation (PAMF).
Margaret Stephens, LCSW, social worker, PAMF, Palo Alto.

They addressed:

• Palliative care - overview; how this can help for someone with PD; services provided by PAMF
• POLST form (though not a lot of time will be spent on this)
• Common causes of death for those with PD
• Hospice (though not a lot of time will be spent on this)

Meeting materials:

> Palliative Care and End-of-life for PD presentation (PDF)