Carepartner Resources

The Carepartner Guidebook

 

Click on the image to read the brochure

This standalone brochure, originally inspired by material from our 2018 CurePSP Guidebook, covers all things carepartners should know about dealing with and living with a prime of life brain disease. Chapters include: Making Meaning to Stay Positive, Caregiver Stress and Burnout, Keeping Families Strong, The 7 Deadly Emotions of Caregiving, among others. Download or read the brochure by clicking on the image, or call  Joanna Teters, CurePSP Office Manger, on 347-294-2873 to have a copy sent to you. This brochure is made possible with thanks to our caring supporters.

The full guidebook is a 150-page textbook on PSP, CBD, and MSA that is an indispensable resource for patients, families, carepartners, and healthcare professionals. Available in-print for a suggested donation of $20, email Kelly Saunders at saunders@curepsp.org to receive your copy. You can also call her at 443-578-5670. The entire guidebook is available for download (for free) by clicking here.

Support Groups

CurePSP encourages and organizes activities that foster face-to-face communication, exchange of ideas and information, and interaction for comfort and mutual benefit to group members. The groups are for caregivers, carepartners, family members, friends, and people with PSP, CBD, MSA, or a related disease. There are three ways to connect.

Learn more about Support Groups

Caregiver Advice

National Institute of Aging: Caregiving. Learn how you can be an effective caregiver and how to take care of yourself.

Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance. 

National Institute of Aging: Planning for Long-Term Care. You can never know for sure if you will need long-term care. Maybe you will never need it. But an unexpected accident, illness, or injury can change your needs, sometimes suddenly. The best time to think about long-term care is before you need it. Planning for the possibility of long-term care gives you time to learn about services in your community and what they cost. It also allows you to make important decisions while you are still able. 

Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance. 

Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients. The information on this page is for reference and educational purposes. There is no substitute for seeing your doctor. 

Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance. 

The Eldercare Locator is a public service of the U.S. Administration on Aging. This searchable website is a first step for finding local agencies, in every U.S. community that can help older persons and their families access home and community-based services like transportation, meals, home care, and caregiver support services. To speak to an Eldercare Locator information specialist call toll-free 1-800-677-1116 weekdays, 9:00 a.m. to 8:00 p.m. (ET). Spanish-speaking Information Specialists are on duty. 

Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance. 

Care.com’s Senior Care Directory is free to anyone and everyone, and provides a comprehensive listing of resources by state in seven categories: housing resources, transportation resources, home care, end-of-life care, legal resources, financial planning and management, and health care. 

Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance. 

Share The Care is a non-profit organization that provides information on how to organize a care group for someone who is seriously ill. In addition, their site provides links to other sites caregivers might find useful. 

Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance. 

Well Spouse Association (WSA) is A 501(c)(3) non-profit, self-help, and volunteer-based organization whose mission is to provide peer emotional support and information to the husbands, wives and partners of the chronically ill and/or disabled.  WSA is the only national organization which focuses exclusively on spousal caregivers.  WSA offers local area support groups, mentors, respite weekends, an online forum, and more. 

Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance. 

The Happy Hours: A Book by Kathryn Leigh Scott

The Happy Hours, by CurePSP spokesperson, Kathryn Leigh Scott, is a great source of guidance on how to maintain a social existence in the face of isolation due to a prime of life brain disease. Her book is available at a very affordable price on Amazon Kindle.

 

Please find below an excerpt from Kathryn’s book:

“With the health of her husband, Geoff, rapidly deteriorating, Kathryn Leigh Scott couldn’t help but notice how small and isolated their world had become. Between caregiver and patient, medical equipment and medicines, they began to lose contact with friends, the outside world, and even each other. The road to goodbye had become a lonely one.

Kathryn transformed their home from a place of illness into a place of healthy goodwill where their friends could stop by. For a few hours every day, their master bedroom became an intimate, lively space filled with drinks, food, laughter, and music. These precious moments enlightened their home and their hearts, and ultimately, led Kathryn and Geoff back to each other.

Filled with warmth, reflection, and authenticity, Kathryn’s story is as much a guide to gracious hosting as it is compassionate support for caregivers. For no journey is ever so bright as the one willed with friends, memories, and—above all—love.”