Resources for the caregiver.

I have been working with caregivers of stroke survivors for over three years. I have meet so many thru the initial hospitalization process, support groups, talks and social media. The common thread has been what support is available for the caregivers? Having the same question years ago, I started my mission to support you the caregiver.

Tip #1: Checkout the web 

Thank you for being part of my online conversation but if you want additional information or a special focus here are the key words to use. This is where I started and was able to find general information hence, I developed www.strokecaregiverconnection.com

Stroke Support

Stroke Support Groups

Stroke Caregiver Support Groups

What to expect post stroke

Tip #2: Books online and in Bookstores.

This a definite challenge. When I looked, I found several books but mainly geared towards the stroke survivor and not the caregiver. Along with my book, the following have been useful. The difference is that they are not from the perspective of a caregiver.

“Stroke and the Caregiver” by Lana Wilhelm

This book is written by a caregiver/health professional for another caregiver. “The Stroke and the Caregiver” is a resource and guidebook for caregivers. Emotional exhaustion is a common experience for caregivers navigating the complexities of stroke recovery. Personal stories opening each chapter address caregiver challenges and offer guidance to primary caregivers, plus support and information for those not primarily involved in caregiving (Your back-up). The penultimate chapter contains a letter from a stroke survivor to their caregiver. Each chapter includes the tools I used in that chapter. Treat this as a working notebook, keeping it close at hand.

"Hope After Stroke for Caregivers and Survivors" by Tsgoyna Tanzman

 This book is widely praised for its comprehensive approach, offering practical advice for both caregivers and survivors, and is sometimes referred to as the "Stroke Bible". 

The author is a speech Therapist who has worked with stroke patients. Good information regarding stroke but very little regarding the needs of the caregiver.

"The Caregiver's Guide to Stroke Recovery” by Lucille Jorgensen RN

This book focuses on the caregiver's well-being and offers specific strategies for managing the challenges of stroke recovery.  Some good tips provided but the author has not had first hand experience, so many caregivers concern I had were not addressed.

"Lights, Mirrors, Action: A Guide to Transforming the Lives of Stroke Caregivers"

This book delves into the science of neuroplasticity and provides practical, step-by-step guidance for implementing home therapy programs. Again, good information but written more for a health professional.

Tip #3: Work with your Stroke Program Nurse

Not only will they provide needed information but are also aware of potential resources and support groups to assist you. Typically the nurse will provide both verbal and written booklets. There focus is the stroke survivor but are in tune with caregivers.

“Tip #4: Join a support group

Most support groups are geared towards the survivor but recently I am seeing more groups for the caregiver. I am happy to speak with any caregiver that is looking for or wants to start a group. The best source is to discuss with the stroke support leader that you would like space that caregivers can talk while the stroke survivors have their meeting. The America Stroke Association has a support group finder.

Finding the right support group is critical. You may to visit several before you find your group. Another group that is forgotten is to join a grief support group. I know you are thinking my loved one is still with me, but you are grieving the loss of a lifestyle, social activities and can be financially to name a few. For everyone it is different

“Tip #5: It’s Okay to be overwhelmed = You are not alone

 This is a new life that you never trained for or expected. You will make mistakes. You will read or talk to someone that has it all together “on the outside” and question yourself. Reach out, YOU ARE NOT ALONE!

If there’s something you’re struggling with right now, drop your thoughts in the comments. Let’s build a space that supports caregivers like you.

My new book “Stroke and the Caregiver” is now available on Amazon.  Each chapter provides additional tips for the backup caregiver. 

Thank you for your time and welcome