Presented during: PSP-MSA-CBD Caregiving Symposium
Symposium Co-Hosts: Stanford Movement Disorder Center and Brain Support Network
Date: June 14, 2025
Christina Irving, LCSW
Director of Client Services, Family Caregiver Alliance
Caregiver Speaking on Self-Care – Short Video
Brief Summary – Relationships, Caregiving Stress, and Resources
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Christina Irving, LCSW, of Family Caregiver Alliance addressed the many challenges of caregiving, and emphasized the importance of caregivers recognizing and addressing their own stress. She highlighted that caregiving often incurs significant financial burdens due to out-of-pocket expenses and a lack of long-term care insurance coverage. Ms. Irving stressed the importance of proactive planning, including early exploration of resources, legal documentation, and a thorough understanding of the care recipient’s disease.
The talk covered various forms of support, from palliative care, hospice, and VA benefits to practical community resources and case management. Her slides contain lots of helpful information and tips on where to look for help as a family member or caregiver.
Ms. Irving went into the emotional toll of caregiving, discussing anticipatory grief, ambiguous loss, guilt, and the pervasive feeling of isolation. She addressed the value of engaging family and friends through clear communication, while also advocating for caregivers to prioritize emotional support through support groups and individual counseling. Ultimately, Ms. Irving celebrated the immense, often undervalued, economic contribution of caregivers, encouraging them to leverage available resources and prioritize their well-being.
Comprehensive Notes – Relationships, Caregiving Stress, and Resources
Notes by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Recognizing and Addressing Caregiver Stress
Caregiving is inherently stressful, but caregivers often focus solely on the care recipient, making it difficult to assess their own well-being.
It’s crucial for caregivers to understand how stress manifests personally. Stress can show up in various ways:
- Cognitive: Excessive worrying, constant thoughts (“hamster wheel”), problems with memory or thinking, feeling overwhelmed, anxious thoughts.
- Physical: Shoulder tension, stomach aches, headaches, increased heart rate, high blood pressure.
- Emotional: Irritability, crankiness, increased anxiety or depression.
- Behavioral: Changes in sleeping (more or less) or eating (more or less).
Importance of Self-Awareness: Knowing one’s normal patterns and identifying when changes occur helps pinpoint when more support is needed, when challenges become overwhelming, and what type of support would be most helpful. This self-awareness is critical for selecting appropriate resources.
Multiple Challenges Faced by Caregivers
Multiple Roles: Caregivers often juggle numerous responsibilities, such as caring for a loved one, raising children, working, managing household tasks, and trying to maintain their own health. These create significant demands on time and attention.
Financial Burdens: Caregiving is expensive, even with insurance coverage for some items.
- Out-of-pocket expenses: Co-pays, deductibles, and costs not covered by insurance.
- Uncovered costs: Incontinence supplies, home care, long-term care, and certain community supports can be major expenses.
Disease/Diagnosis Specific Challenges: Specific symptoms (e.g., falls, incontinence, sleep problems, cognitive issues) can severely impact the caregiver.
Navigating Fragmented Systems: Healthcare and social service systems are often uncoordinated and difficult to navigate, leaving the burden on caregivers to identify available services, access specialists, and understand insurance coverage. There is often insufficient systemic or familial support.
Uncertainty and Lack of Control: Even with a diagnosis, the exact progression, timeline, and future decisions for the family member are often unknown, leading to significant stress.
Internal Stressors and Emotional Impact
Grief and Loss: Caregiving is often accompanied by grief and loss due to the changes in the loved one and the relationship.
- Anticipatory Grief: Grieving for future losses or changes (e.g., functional decline, eventual passing) while the person is still alive.
- Ambiguous Loss: Experiencing loss and grief for a person or relationship that is physically present but psychologically or emotionally absent or changed (e.g., a loved one with dementia who is no longer the “same person”).
- Lack of Societal Support: Society often lacks frameworks (e.g., greeting cards) or understanding for these complex forms of grief, leading to caregiver isolation and unresolved grief.
Guilt and Ambivalence:
- Guilt about Self-Care: Caregivers often feel selfish for prioritizing their own well-being over the needs of the ill loved one.
- Ambivalence: Feeling a deep desire to care for the loved one while simultaneously wishing for different life circumstances (“I want to take care of them, but I wish I didn’t have to do this”). This is a normal feeling that does not diminish the care provided.
- “Shoulds”: The internalized pressure to be a “superpower” caregiver, doing everything perfectly (e.g., “I should have stopped them from falling,” “I should be more patient”).
- Reframing Guilt: It’s important to differentiate healthy guilt (when one has actively harmed someone) from sorrow or regret about circumstances beyond one’s control. Caregivers are “perfect in their imperfections,” and simply showing up, even on hard days, is a tremendous act of value.
Resources and Support for Caregivers
Importance of Early Access: It is crucial to start exploring resources earlier than you think you need them. This proactive approach can reduce stress when services are urgently required, avoiding the pressure of navigating waitlists or new systems during a crisis.
Three Key Areas of Information for Caregivers:
1. Understanding Care Needs: Information to understand the loved one’s disease/condition better.
2. Getting Help: Accessing support from family, friends, or formal systems.
3. Emotional Support: Resources for the caregiver’s own well-being.
Caregiver Value: Supporting caregivers is not just about making them “better caregivers” but about supporting their own health and well-being as individuals. A well-supported caregiver is often more patient and effective, but their personal health is valuable in its own right.
Understanding Care Needs and Healthcare System Navigation
Understanding the Diagnosis:
- Seek information about the disease, its meaning, common symptoms, and potential trajectories.
- Utilize resources like the Brain Support Network and workshops.
- Advocate with healthcare providers: It’s acceptable to “push” for clearer information on typical progressions or averages, even if individual outcomes vary.
Medication Management:
- Ensure a full understanding of all medications, including supplements and vitamins.
- Pharmacists are a valuable resource for medication information and answering questions that may have been overlooked during doctor appointments.
Medical Care Tasks:
- Caregivers often perform complex medical tasks (e.g., managing swallowing issues, monitoring blood sugar/insulin, checking vital signs) without formal training.
- Ask for training: Nurses are excellent resources for hands-on guidance.
- Billing codes now exist for caregiver training (Medicare, Medi-Cal, Medicaid) recognizing the need for formal instruction.
- Utilize online educational tools (videos on medication management, medical tasks).
Daily Care Tasks (ADLs and IADLs):
- Tasks like transferring, showering, eating assistance are often challenging.
- Occupational Therapists (OTs) and Physical Therapists (PTs) are experts in these areas. They can provide tools, techniques, and guidance on home modifications (e.g., grab bars, ramps, widened doorways).
Palliative Care and Hospice:
- Palliative Care: Holistic support for anyone with a serious illness at any stage, focusing on symptom and pain management, and emotional support for families.
- Hospice Care: A specific type of palliative care for individuals with six months or less to live. Early discussion with doctors is crucial to access hospice benefits, as many people access it only in the very final weeks of life, missing out on months of potential support.
Family Caregiver Alliance Resources: FCA and partners provide educational resources and handouts on daily care, medical tasks, and dementia-related support. The goal is to equip caregivers to ask for specific help where they struggle.
Legal and Financial Planning
Legal Planning (Essential for Everyone, Crucial for Caregivers):
- These documents should be completed before they are needed, as it’s often too late once capacity is lost.
- Advanced Healthcare Directives: Designate who can make healthcare decisions if the individual is unable. (Caregivers often have this for their loved ones but less frequently for themselves.)
- Financial Management Documents: Designate who can manage finances and pay bills.
- Resources: Senior legal resources (often free in most counties), elder law attorneys (for more complex situations). They can help identify necessary documents and provide guidance.
- Goal: To avoid conservatorship or guardianship, which involves court intervention when capacity is lost.
Paying for Care (this can get complex):
- Medicare: Does not pay for long-term care (e.g., ongoing in-home care). It covers hospital visits, doctor visits, and prescriptions.
- Durable Medical Equipment (DME): Medicare can cover items like transfer benches, shower chairs, and some assistive/communication devices. Advocacy may be needed due to frequent initial denials.
- Health Insurance Counseling and Advocacy Program (HICAP) in California (or SHIP in other states) provides free counseling on Medicare issues and appeals.
- GUIDE Program: A newer Medicare program that now offers respite services specifically for individuals with a dementia diagnosis.
- Medi-Cal / Medicaid: (Note: This area is subject to frequent changes, especially in California).
- Can cover long-term care services (in-home supportive services, adult day health, skilled nursing, some assisted living under waivers).
- Requires specific income and asset limits (asset limits in California are changing).
- Spousal Impoverishment Law (California): Protects the “well spouse” in a marriage/registered domestic partnership from impoverishment, allowing the one needing Medi-Cal to qualify while preserving some assets/income for the spouse.
- Resources: Senior legal programs, California Advocates for Nursing Home Reform (CANHR) provide Medi-Cal eligibility information.
- VA Benefits: Veterans (or their caregivers) may be eligible for respite programs or in-home care funding even without a service-connected disability. Reach out to local Veterans Service Offices to understand eligibility.
- Long-Term Care Insurance: Fewer policies are available, but if present, contact the provider early to understand: ○ Eligibility criteria (e.g., needing help with ADLs).
- Elimination period (how long you pay before benefits start).
- Maximum benefits (daily, hourly, yearly).
- Coverage details (e.g., agency vs. licensed provider for in-home care).
- Community and Case Management Resources
Many programs exist within various counties and communities, though awareness and access can be challenging.
Case Management Resources: Help guide caregivers through available resources, assist with applications, make calls to agencies, coordinate appointments, and help arrange meal delivery (e.g., Meals on Wheels).
Transportation: Explore options like paratransit services (wheelchair-accessible vans) or ride-share programs/taxi vouchers for non-driving individuals.
Home Modifications: Programs in different areas may help pay for and complete installations of grab bars, ramps, or doorway widening to facilitate staying at home.
How to Find Local Resources:
- Most programs are funded through the Older Americans Act and managed by your local Area Agency on Aging (AAA).
- In California, Caregiver Resource Centers (like Family Caregiver Alliance) serve as key resources.
- National resource databases are available to connect people to programs regardless of location.
Crisis Resources:
- Adult Protective Services (APS): For concerns about abuse, neglect, or self-neglect, social workers can intervene.
- Mental Health Helplines: For caregivers or care recipients. The Alzheimer’s Association 24-hour helpline(accessible for any dementia/memory loss diagnosis, not just Alzheimer’s) provides 24/7 support.
- Friendship Line: A crisis and emotional support hotline for older adults and caregivers.
Engaging Family and Friends
Communicate Needs Clearly: Don’t assume family/friends understand the realities of caregiving or what help is needed. Be explicit and specific about what would be helpful.
Provide Specific Options: Instead of asking for general help (e.g., “Can you provide care?”), offer concrete tasks they might be willing to do (e.g., grocery shopping, making calls to agencies, transportation, visiting). This increases the likelihood of them agreeing and helping again.
Coordination Tools: Utilize care coordination websites or shared calendars to keep everyone informed and on the same page.
Family Meetings: Consider holding family meetings to align everyone on caregiving responsibilities and plans. If conflicts exist, a social worker, therapist, or case manager can facilitate as a neutral third party.
Addressing Reluctance to Accept Help: If the care recipient is reluctant to accept outside help, initiate conversations early. Frame it as “making you (the caregiver) feel better” or reducing your worry, rather than solely focusing on their need. This can make them more amenable.
Formal Care Services and Respite Options
Hiring In-Home Help:
- Privately Hired: More liability and responsibility for the caregiver (e.g., taxes, background checks).
- Through an Agency: Typically higher cost, but the agency handles liability and coordination.
- Explore programs like Medi-Cal/Medicaid or VA benefits that may cover in-home care costs.
Respite Options:
- Assisted Living/Board-and-Care Homes: Offer short-term stays (often 2-week minimum) for caregiver breaks or during caregiver’s health issues/surgeries.
- Adult Day Programs: Provide socialization, stimulation, and exercise for the care recipient, while giving the caregiver time off. Some are dementia-specific, others are not. Trial visits are recommended to find a good fit.
- Short-Term Respite Grants: Available from organizations like Family Caregiver Alliance, Alzheimer’s Association, and some Parkinson’s programs to help cover respite costs.
Caregiver Well-being and Resilience
Importance of Breaks and Support: It is not selfish for caregivers to take breaks and seek support; it is essential for their well-being and ability to continue providing care.
Acknowledge All Feelings: Recognizing that all emotions (including resentment, regret, anxiety, depression) are valid and common.
Maintain Personal Interests: Continue engaging in activities enjoyed outside of the caregiving role to help build resilience and cope with stress.
Focus on Accomplishments: Daily reflection on “What did I do well today? What did I accomplish?” can counteract the tendency to dwell on undone tasks or perceived imperfections.
Seek Professional Support:
- Individual Counseling: Available through insurance, employer programs, or free/low-cost county programs. In California, SCAN offers 12-15 free sessions for adults 55+ or caregivers of adults 55+, regardless of insurance.
- Support Groups: Highly recommended; caregivers can learn immensely from each other and combat isolation.
Match Stress Reduction to Stress Manifestation:
- Physical Stress: Engage in physical activities like exercise, stretching, walking to release tension.
- Cognitive Stress (Worry/Rumination): Engage the brain with activities like journaling, reading, prayer, or meditation.
Incorporate Small Moments: Even one-minute increments of stress-reducing activities (listening to music, watching a funny video, relaxation exercises) can make a difference when done regularly.
Resources: Caregiver support resources exist in every county/region (e.g., Caregiver Resource Centers in CA, National Family Caregiver Support Program in every state). When in doubt, start by contacting your local Area Agency on Aging (AAA).
Caregiver’s Economic Value: Caregivers provide an estimated $600 billion per year worth of care, making the healthcare system unsustainable without them. Taking breaks and seeking support is not just okay for the individual but essential for the entire system.
Question and Answer
Question: What would you like to see a neurologist do when a caregiver (not the patient) is visibly distressed in their office?
Answer: Ideally, neurologists should ask, “How are you?” to acknowledge the caregiver’s stress. They should then inquire about specific difficulties and where more support is needed. Many caregiver concerns are medical (e.g., “I don’t know how to do these tasks”), which the neurologist can address directly or through referrals to PT, OT, or speech therapists. If the distress is emotional, the neurologist can direct them to their primary care doctor for counseling referrals or provide a list of support groups. When unsure, referring to the local Area Agency on Aging is a reliable starting point for community resources. Simply being seen, heard, and acknowledged is incredibly powerful.
Question: My sister, who cares for her husband, is extremely reluctant to engage outside help. What thoughts do you have?
Answer: Explore her specific concerns about bringing in help (e.g., training of providers, coordination effort, potential discomfort). Acknowledge her worries as valid. Offer to assist with specific tasks like gathering information, making calls, or providing support during an initial trial of help. Frame the discussion around your worry for her well-being, rather than solely her husband’s needs. Recognize that this will likely be an ongoing conversation, not resolved in one discussion.