(Plus One More Nobody Warns You About)
1. Get Everything in Writing — and Follow Up in Writing
When you’re dealing with healthcare, social services, insurance, or government programs, verbal conversations don’t count.
People will say one thing in person, another thing over the phone, and then something completely different later. Some will say they told you something they never actually said. Others will forget your conversation entirely.
To protect yourself and your loved one:
Always follow up in writing.
Examples:
“Just to confirm what we discussed today…”
“Per our conversation on [date/time]…”
“Here is my understanding of the next steps…”
This creates a paper trail that holds everyone accountable.
Why this matters:
If it’s not in the medical notes, it didn’t “officially happen.”
Insurance will deny things if there’s no documentation.
Providers rely on records, not memory.
Written follow-ups prevent gaslighting and confusion.
Tip: Keep a folder of all emails, portal messages, and letters. Screenshots too.
2. Ask for a Treatment Plan — And Know When It Should Exist
A lot of caregivers don’t know this, but treatment plans are not optional.
They are required for ongoing care.
A real treatment plan should include:
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Diagnosis (or working diagnosis)
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Medications and dosages
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Behavioral goals
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Outpatient supports
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Safety concerns
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Follow-up schedule
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What the family should monitor
When should you have a treatment plan?
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At or shortly after the first evaluation
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Within the first 30–60 days of establishing care
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Updated at least once a year (more often if symptoms change)
Ask for a “Family Treatment Plan.”
Caregivers — especially sibling caregivers — need:
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Education on the condition
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Warning signs to watch for
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What to do during crises
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Guidance on boundaries
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Communication strategies
You should never feel like you’re guessing.
3. Disability Knowledge Isn’t Optional — It’s Survival
Understanding your loved one’s disability changes everything.
You learn:
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What behaviors are symptoms (not choices)
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Which services they qualify for
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How to advocate using the correct language
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How to spot red flags
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How to describe symptoms accurately
For mental disabilities, the education gap is bigger because the system treats “mental health” like a side category instead of a real disability with lifelong impact.
You’re not being “dramatic” for wanting answers — you’re being responsible.
4. Caregiver Mental Health: The Symptoms Nobody Talks About
When people think of caregiver stress, they imagine “tired.”
But the truth is deeper — especially for sibling caregivers of someone with a mental disability.
Research shows caregivers often experience:
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Resentment
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Emotional dysregulation
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Depression
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Generalized anxiety
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Panic symptoms
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Hypervigilance
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Trauma responses
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Secondhand trauma (from witnessing mistreatment, injustice, or crises)
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Caregiver burnout
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Ambiguous grief (mourning the person as you knew them)
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Suicidal ideation in severe caregiver strain
And none of these mean you’re a bad caregiver.
These are normal responses to an abnormal amount of responsibility, fear, pressure, and systemic failure.
Awareness = power.
If you can name what you’re feeling, you can seek help before it turns into crisis.
Healthy coping strategies include:
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Therapy
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Support groups
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Journaling
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Exercise
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Rest
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Asking for backup
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Medication if needed
Unhealthy coping (but very common in caregivers):
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Alcohol misuse
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Substance dependency
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Emotional shutdown
If you see yourself in any of this — it’s not your fault. It’s the weight you’re carrying.
5. Get Access to Their Medical Accounts — It Changes Everything
Having proxy access or portal access allows you to:
See appointments
Read doctor notes
Track labs
Catch mistakes
Message providers
Upload documentation
Follow medication changes
Without access, you’re always reacting instead of planning.
How to get access:
Ask for “proxy access”
Ask for a Release of Information (ROI)
Some systems allow adult permission via portal invitation
You need this for real advocacy.
6. Share the Same Primary Care Provider (PCP)
This is a life hack most people don’t know.
If you and your loved one share a PCP:
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They understand the family system better
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You don’t have to re-explain everything
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Referrals move faster
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Communication is smoother
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There is continuity
It makes care coordination ten times easier.
7. Document Everything — Daily
This is not the same as “write things down.”
This is about building a record that protects your family.
Document:
Behavior changes
Medication side effects
Missed appointments
Safety concerns
Eating habits
Sleep patterns
Household incidents
Stress triggers
Conversations with providers (with dates/times)
And ALWAYS follow up in writing.
Documentation is your shield and your receipt.
8. Keep Receipts of Money Spent & Damages
Caregivers often spend hundreds — sometimes thousands — a year:
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Replacing broken items
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Fixing appliances
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Buying extra groceries
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Paying for transportation
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Covering medical supplies
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Buying safety tools
Keep:
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Photos of damages
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Receipts
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Lists of expenses
This is important for:
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Budgeting
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Future reimbursement
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Appeals
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Proving the true cost of caregiving
9. Product Recommendations That Actually Help
Forget the cute TikTok gadgets.
You need things that reduce stress, increase safety, and lighten your workload.
Examples:
Air purifiers
Safe kitchen tools
Weighted blankets
Night lighting
Organization systems
Noise-canceling devices
Durable cookware
Sensory tools
Garden tools that reduce strain
Non-slip mats
A smoother environment = fewer triggers = fewer crises.
10. Use Every Resource Available — Here’s What They Actually Are
Most caregivers have no idea what they qualify for because nobody explains it clearly.
Below is a simple breakdown.
Resources the Person With the Disability May Qualify For:
IHSS – In-Home Supportive Services (California)
Pays for caregiving hours if the person cannot perform daily tasks independently.
Website: https://www.cdss.ca.gov/in-home-supportive-services
SSI — Supplemental Security Income
Monthly payments for adults with disabilities who have limited income.
https://www.ssa.gov/ssi/
SSDI — Social Security Disability Insurance
For people with work history who become disabled.
https://www.ssa.gov/benefits/disability/
Medi-Cal / Medicaid
State medical insurance for low-income adults with disabilities.
https://www.dhcs.ca.gov/services/medi-cal
SNAP / CalFresh
Monthly grocery assistance.
https://www.cdss.ca.gov/calfresh
Resources Caregivers May Qualify For:
Family Caregiver Support Program (FCSP)
Offers respite, support groups, and training.
https://www.ca.gov/resources?id=2260
National Family Caregiver Support Program
Federal program offering respite and support.
https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program
Employee Assistance Programs (EAP)
Free therapy, consultations, and support through your job.
Nonprofit Caregiver Centers
Examples:
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Family Caregiver Alliance (FCA): https://www.caregiver.org
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AARP’s Caregiving Resource Center: https://www.aarp.org/caregiving
Respite Programs
Short-term relief for caregivers — availability varies by county.
Grants (varies, but here’s real ones):
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Hilarity for Charity Caregiver Grants: https://www.wearehfc.org
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Rosalyn Carter Institute: https://www.rosalynncarter.org
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Local grants through Area Agencies on Aging (AAA)
About Conservatorship Barriers
If you do not have conservatorship:
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You may not be able to apply for certain programs
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You may need the disabled person’s signature
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Providers may limit what they tell you
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Medical decisions may be blocked
This is why documentation and treatment plans matter so much.
11. Know Your Legal Rights — and Why It Matters
Caregivers dealing with mental disabilities run into discrimination, denial of services, misinformation, and poor communication constantly.
Knowing your rights helps you:
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Prevent providers from brushing you off
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Challenge incorrect documentation
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Demand appropriate care
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File grievances
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Appeal denials
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Hold systems accountable
Here are real laws you should know:
ADA – Americans with Disabilities Act
Protects disabled individuals from discrimination.
https://www.ada.gov/
Section 504 of the Rehabilitation Act
Requires equal access to services.
https://www.hhs.gov/civil-rights/for-individuals/disability/index.html
HIPAA
Explains what information can be shared and how caregiver access works.
https://www.hhs.gov/hipaa/index.html
California Patient Rights
https://www.disabilityrightsca.org
Appeal & Grievance Rights (California DMHC)
Knowledge is leverage.
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12. Prioritize Self-Care — Without Apologizing
Caregiving drains you on every level: emotional, physical, spiritual.
You need rituals that refill you — even small ones.
Self-care is:
Rest
Music
Hot showers
A walk
Naps
Reading
Good food
Your own therapist
You deserve softness too.
12.Create a Dopamine Cave — Your Own Protected Space
This one is for caregivers in homes where the environment gets disrupted by symptoms.
People don’t talk about:
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Broken items
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Missing items
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Kitchen tools disappearing
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Mirrors needing to be covered
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Decor being removed
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Things being taken to bedrooms
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Constant safety adjustments
Homes lose their aesthetic.
You lose your sanctuary.
This is not neglect.
This is survival in a mental health household.
So create a space just for you:
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Your bedroom
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A corner
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A closet-turned-nook
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A tiny altar
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A reading chair
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Plants
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Soft lighting
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Objects that comfort you
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Things that don’t get touched
Your nervous system needs beauty, familiarity, and peace.
This is how you recharge.
Caregiving — especially for someone with a mental disability — is one of the hardest roles you can hold.
It changes you.
It humbles you.
It grows you.
It breaks your heart and rebuilds it in the same breath.
But you are not alone in this journey, even when it feels like it.
If this guide helped you, share it with another caregiver who deserves clarity and compassion.