Resource Pages from The Caregiver’s Advocate Volume 2

BOOKS

A-Beginners-Guide-to-the-End/ Life Planning from Start to Finish /
bit.ly/43pkWGg

Balance of Dignity: Empowerment Tools for Memory Care at Home:
https://amzn.to/4iVlklS

Caregiver Media Group / Magazine providing information, support, and guidance for family and professional caregivers: http://www.caregiver.com

Caregiving, How to Hold On While Letting Go / Caregiver tools, questions to ask providers, supports caregivers from a Christian perspective:
https://thepurplevine.com/Caregiving-Hold-On

Dancing With Lewy: A Father Daughter Dance Before and After Lewy Body Dementia /Caregiving story, poems, practical advice for caregivers:
https://amzn.to/3Z4fpDF

Fall Prevention: Planning Not to Fall / Practical steps to reduce caregiver and senior fall risks: https://amzn.to/44oJamm

Five Wishes / Guide for End of Life Planning:
https://www.fivewishes.org/five-wishes-sample.pdf

Medical Billing Dispute Guidebook:
https://amzn.to/3SUAmgZ

My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver / Alzheimer’s caregiving journey and insights from a former governor:
https://amzn.to/4d6jEV7

Remarkable Caregiving: The Care of Family and Friends / Six caregivers share their moving stories, practical advice, home care checklist:
https://amzn.to/3GJHOsx

Self-Care for Caregivers: A Practical Guide to Caring for You While You Care for Your Loved One / Encourages caregiver self-care through tips, stories, and practices: https://www.caregiverwarrior.com

The Art of Dying Well / Planning your course for aging & dying well: bit.ly/4kwk9KA

The Passionate Life: Creating Vitality & Joy at Any Age / A guide for living with passion at any age: https://DrmaraKarpel.com/Book-page/

The Song in Lola’s Heart: A Story About Caregiving from 6 to 76 / Caregiving journey across generations told through a heartfelt story: https://amzn.to/44qPud7

Working Caregivers – The Invisible Employee / Empowers working caregivers with strategies, advocacy, and employer tools:
https://www.invisibleemployeesbook.com/our-book

Write to Remember / A large journal with prompts and biblical encouragement for caregivers: https://thepurplevine.com/write-to-remember-journal/

 

NATIONAL ORGANIZATIONS

ABLE National Resource Center / Offers tax-advantaged savings for individuals with disabilities. / https://www.ablenrc.org

Alzheimer’s Association / Patient assistance, caregiver support,  24/7 helpline, education, and local and international resources/
https://www.alz.org/help-support/caregiving

AARP/ tools and tips on how to succeed as a caregiver / http://www.aarp.org

American Speech Language Hearing Association (ASHA) / Public resources for adult and geriatric cognitive communication changes/
https://www.asha.org/public/

ARCH National Respite Network / Helps families locate respite and crisis care in their communities / http://archrespite.org

Benefits Checkup (by NCOA)/Identifies financial aid programs for older adults and caregivers./ https://benefitscheckup.org

Dementia Map / A global resource directory to support dementia care /
https://DementiaMap.com

Department of Veterans and Military Family Caregiver Support / offers clinical services to caregivers of eligible Veterans /  http://www.caregiver.va.gov/

Family Caregiver Alliance / Provides assistance, answers, and advice for the caregiver and family / https://www.caregiver.org

Greater National Advocates /Free National Patient Advocates Directory/
https://gnanow.org

Health Advocate X/ Free National Patient Advocates Directory/
https://healthadvocatex.org

Into the Dark Blue / A national men’s mental health and wellness group /
https://www.intothedarkblue.com/

MSA Trust / An online resource & knowledge base for learning all about Multiple System Atrophy / https://www.msatrust.org.uk/

National Alliance for Caregiving / Online resources for family caregivers /
https://www.caregiving.org

National Association of Healthcare Advocates  /Free National Patient Advocates Directory/ https://nahac.com

Nourish for Caregivers  / a faith based support organization /
https://nourishforcaregivers.com/

Numeric Pain Scale / What a 0-10 scale means / https://www.physio-pedia.com/Numeric_Pain_Rating_Scale

PAINAD / A scale for assessing pain in nonverbal loved ones /
https://geriatricacademy.com/painad-scale/

Patient Advocate Foundation – Co-Pay Relief/ Covers high medical costs through co-pay assistance grants / https://www.copays.org

Reimagining Dementia / A creative coalition for justice; leading with creativity globally / https://reimaginingdementia.com

Torchlight Caregiver Support (via employer benefits) / Helps caregivers manage financial, legal, and care decisions/ https://www.torchlight.care

VA Caregiver Support Program/ Offers stipends, benefits navigation, and training for VA caregivers/ https://www.caregiver.va.gov

We Are HFC (Hilarity for Charity)/ collaboration to support caregivers of people living with Alzheimers /  https://wearehfc.org

Well Spouse Association / Supports spouses caring for partners with chronic illness / https://wellspouse.org

Wong-Baker FACES Scale / An option to rate pain with Smiley Faces / https://wongbakerfaces.org

 

NATIONAL  - LEWY BODY SPECIFIC

Lewy Body Dementia Organization (U.S.) / LBD Training, Webinars, Articles  / https://www.lbda.org/

Lewy Body Resource Center / Provides resources to those living with LBD and their families / https://lewybodyresourcecenter.org

NIH Health Information /  An overview of LBD based on research /
https://shorturl.at/b37sR

The Lewy Body Society (U.K.) / LBD Training, Podcast, Research /
https://www.lewybody.org/

 

NATIONAL - PARKINSON’S SPECIFIC

American Parkinson's Disease Association/ Helpline, online resources, support group: https://support.apdaparkinson.org

Drive Toward a Cure/ Online resources, support group, events:
https://www.drivetowardacure.org/

Michael J. Fox Foundation/ Helpline, online resources, support group /
https://www.michaeljfox.org

Parkinson's Foundation/ Helpline, online resources, support group /
https://www.parkinson.org

Power Over Parkinson's/ Online resources, support / https://www.poweroverpd.org/

 

PODCASTS AND RADIO SHOWS

All Home Care Matters / Podcast and YouTube show covering long-term care and issues / http://AllHomeCareMatters.com

Alzheimer’s Speaks Radio / Shifting dementia care from crisis to comfort around the world / https://Alzheimersspeaks.com

Chatting with Betsy Podcast and Radio / Features topics and guests who offer resources to support caregivers /
https://passionateworldtalkradio.com/chatting-with-Betsy_show/

Dr. Mara Karpel & Your Golden Years / Interviews with expert guests /
https://DrMaraKarpel.com/ir-shows/

Lewy Body Rollercoaster / Living with LBD for patients and their families / https://www.buzzsprout.com/1298360

Q & A with Sharon’s son, George / share inspiring journeys /
https://www.togetherforsharon.com/qa-with-sharons-son-george/

The Lewy Body Life / Help for care partners of LBD patients  /
https://lewybodylife.com/

The TogetherForSharon® Podcast  / Awareness, hope for a cure /
https://www.togetherforsharon.com/podcast-interviews/

 

 

WEBSITES

AgeSMART!411 / A free online resource educating aging seniors with practical wisdom / https://agesmart411.com

Aging Care Navigators / Support, blog, resources, journals, coaching, consultation, tips, leadership, training / https://www.agingcarenavigators.org

Assistex / Games and activities for seniors with dementia /
https://Assistexstore.com

Caregiver Action Network / Caregiver support, education, and advocacy /
https://www.caregiveraction.org/

Compassionate Caregiving Coach / Caregiver advocacy support; FREE download for passionate living / http://compassionatecaregivingcoach.com/

Dr. Mara Karpel  / Blogs, books, podcasts, courses, speaking engagements, contact information  / https://drmarakarpel.com

EFT Tapping / Emotional Freedom Techniques to relieve pain, stress, and anxiety
https://www.healthline.com/health/eft-tapping

Family Legacy Financial Solutions / Retirement, estate, investment, and tax planning  / https://www.familylegacync.com

Finding A Foothold / Family caregiving and aging in place support /
https://www.findingafoothold.com

Grace’s Message / Resources: caregiver, bookstore, newsletter signup, faith groups, grief support / https://www.gracesmessage.com

Happy Healthy Caregiver / Support groups and resources for family caregivers / https://happyhealthycaregiver.com

Ho’oponopono: A four-phase mantra for conflict resolution within ourselves, for pain relief / https://hooponoponomiracle.com/ho-oponopono-technique/

Illuminate Resource Directory /Find a senior living resource near you /
https://illuminateseniorservices.com/resource-near-you/

Invisible Employee Advocates / Supports employed caregivers through advocacy, tools, and resources / https://www.invisibleemployeeadvocates.com

Keys for Caregivers / Empowerment tools for memory care at home /
https://keys-for-caregivers.com

Keys for Caregiving / Connects caregivers and businesses to amplify their voices / https://www.christinakeys.com

Memory Matters / Memory assessments and coaching, memory improvement courses, and webinars for senior organizations /
https://renayudkowsky.com

My Care Friends / Caregivers and advocates connect, share, and support /
https://mycarefriends.com

One by One Care / Monthly subscription of dementia friendly activities with caregiver support / https://www.onebyonecare.com/

Paradise Home Health Care / Information for seniors and families providing blogs/articles regarding home healthcare / https://paradisehomehealthcare.com

Soul Sherpa / Patient Healthcare Advocacy, Life Care Planning, and Education / https://Soulsherpa.net

Pocket of Promise / Caregiver’s Guide to Spiritual Self-Nurture, support, podcasts, free resources, books / https://pocketofpromise.com

Soaring Families / Reduces caregiving stress through support and consulting / https://www.soaringfamilies.com

Soul Sherpa / Patient Healthcare Advocacy, Lifecare services, and Education / https://soulsherpa.com

The Purple Vine / Dementia caregiver support, blog, weekly email, free resources, books, private consultations / https://thePurpleVine.com

TogetherForSharon® / Parkinson's disease advocacy and support, blog, free resources, books, podcasts /  https://www.togetherforsharon.com/

Trinity Rehabilitation & Wellness / Trinity is founded on patient-centered, holistic rehabilitation and wellness services / https://trinityrehabilitationwellness.com

Working Daughters / Helps women balance work, life, and caregiving /
https://workingdaughter.com

Zinnia TV / Videos that help people with dementia and their caregivers /
https://Zinniatv.com

 

CANADA SPECIFIC

Canadian Centre for Caregiving Excellence (CCCE) /
https://canadiancaregiving.org/

Carers Canada / Province-specific resources for caregivers /
https://www.carerscanada.ca/organizations-supporting-caregivers/

Caring Hands Services  / Eldercare Planning focused on Navigating Senior Transitions and Advocacy / https://chservicespro.ca/

Eldercare Planners of Canada / Your one-stop resource to navigating senior living and homecare options / https://www.eldercareplanning.ca/

Ontario’s caregiver organization / https://ontariocaregiver.ca/

Workplace Roundtable Report / Facts and Figures / http://bit.ly/44RIshG