Resources

Start here. Then pick up the phone.

Most of us start caregiving in the dark — a diagnosis nobody expected, a parent who is changing, and no idea what to ask or who to call. The books below are where Jessica’s story begins. The directory below them is where your next phone call can begin. Everything on this page is either written by Jessica or free to the public.

Four books, in the order Jessica recommends reading them

You do not have to read all four. Start wherever you are on the journey — the numbers are a suggested path, not a requirement.

The Proactive Caregiver: Stop Reacting to Life, Start Living Proactively

Hardback · Paperback · eBook · Audiobook, narrated by Jessica

Jessica left a twenty-year accounting career to become her mother's full-time caregiver — and discovered that almost everything she did in that first year was a reaction to a crisis someone else had already seen coming. This is the book that came out of that reckoning. Written for caregivers of any age caring for someone with dementia, or watching behavior changes they can't yet name, it deals honestly with the parts most caregiving books skip: guilt, shame, the exhaustion of performing strength for your family, and the physical toll of hiding it. You'll learn to recognize the reactive pitfalls before you fall into them, to step into your loved one's world without threatening them, and to build a life alongside caregiving instead of underneath it.

Best for anyone in the first two years of a dementia journey — or any caregiver running on empty.

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Becoming Proactive

eBook

A short, honest read about the beginning — leaving the corporate world, walking into full-time caregiving, and running headfirst into what Jessica calls the caregiver's imposter syndrome. If you've caught yourself thinking I'm not qualified for this and everyone's about to find out, start here. It's the shortest entry point into Jessica's work and takes about an evening to finish.

Best for new caregivers, or anyone deciding whether to step into the role.

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The Proactive Journey, Volume 1

Paperback · eBook

Drawn from the blog Jessica kept while learning to navigate compliance paperwork, medical journals, and her mother's changing abilities in real time. Volume 1 covers those first steps into caring for a loved one with mixed dementia — the questions nobody prepares you for, and the practical tips Jessica found the hard way.

Best for caregivers who want the day-to-day reality, not the clinical overview.

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The Proactive Journey, Volume 2

Paperback · eBook

The journey continues, and it gets more specific. Volume 2 covers the stages of dementia and why a clear diagnosis is so much harder to get than families expect, fighting situational depression as a caregiver, and how Jessica's relationship with her mother kept evolving as the disease progressed.

Best for caregivers further along who need language for what's happening.

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Free help exists and most families never find it. Every organization below is free to contact. Start with the first two — between them, they can route you to nearly everything else on this page.

If you only save two numbers
800.272.390024 hours a day, 365 days a year

Alzheimer's Association Helpline

A live person at any hour, in more than 200 languages, including free care consultations with master's-level clinicians. Confidential.

alz.org
800.677.1116Weekdays

Eldercare Locator

The federal front door. Give them your ZIP code and they route you to your Area Agency on Aging for in-home help, transportation, meals, and respite.

eldercare.acl.gov

Dementia-specific help

866.232.84849am–9pm ET, daily

Alzheimer's Foundation of America

Call or text a licensed social worker directly.

alzfdn.org
866.507.7222Weekdays, 9–5 ET

Association for Frontotemporal Degeneration

For FTD, including behavioral variant FTD and primary progressive aphasia.

theaftd.org
800.539.9767

Lewy Body Dementia Association

The Lewy Line — disease-specific guidance and support group connections.

lbda.org
800.438.4380

NIA Alzheimer's and Related Dementias Education and Referral Center

Federal, research-backed information on diagnosis, treatment, and caregiving.

alzheimers.gov
800.473.4636

Parkinson's Foundation Helpline

For families where Parkinson's and dementia overlap.

parkinson.org

Support for you, the caregiver

855.227.3640Weekdays, 8am–7pm ET

Caregiver Action Network Help Desk

Talk through your specific situation with a caregiving expert.

caregiveraction.org
800.445.8106

Family Caregiver Alliance

Fact sheets, online support groups, and the Family Care Navigator for state-by-state programs.

caregiver.org
archrespite.org

ARCH National Respite Locator

Search nearly 3,000 respite providers by state. Some states run voucher programs. Respite is maintenance, not luxury.

229.928.1234

Rosalynn Carter Institute for Caregivers

Free online courses and evidence-based tools for caregiver resilience.

rosalynncarter.org

Paying for care

benefitscheckup.org

BenefitsCheckUp

Run by the National Council on Aging. Screens for programs that help pay for medications, food, utilities, and care.

800.633.4227

Medicare

Coverage questions, plan comparison, and the nursing home and home health compare tools.

medicare.gov
shiphelp.org

State Health Insurance Assistance Program

Free, unbiased Medicare counseling in your state. No sales pitch, because nobody there earns a commission.

800.772.1213

Social Security Administration

Benefits, disability, and representative payee questions.

ssa.gov

If your loved one is a veteran

855.260.3274Weekdays, 8am–8pm ET

VA Caregiver Support Line

Licensed clinical social workers who connect you to your local VA caregiver support team, respite, skills training, and stipend programs.

caregiver.va.gov
va.gov

VA Aid and Attendance

Additional monthly pension for veterans and surviving spouses who need help with daily activities. One of the most underclaimed benefits in eldercare.

Rights, legal, and protection

ltcombudsman.org

Long-Term Care Ombudsman

A free advocate who investigates complaints in nursing homes and assisted living. Find yours through the Eldercare Locator.

naela.org

National Academy of Elder Law Attorneys

Search for an attorney who handles powers of attorney, guardianship, and Medicaid planning.

aginglifecare.org

Aging Life Care Association

Find a credentialed care manager to coordinate care — especially useful for long-distance caregivers.

In a crisis

If someone is in immediate danger, call 911. For a mental health crisis, call or text 988 to reach the Suicide and Crisis Lifeline, 24 hours a day. If you suspect elder abuse, neglect, or financial exploitation, call the Eldercare Locator at 800.677.1116 to reach Adult Protective Services in your state.

These organizations are independent of The Proactive Caregiver. Jessica includes them because free help exists and most families never find it. Nothing on this page is a paid placement or a referral relationship.