Resources to Help You
Support Groups for Caregivers
Websites
Online Groups - Facebook (Several exist but I have found the following three helpful) Caregiver Support Group, Stroke Caregivers Support Group, and Stroke Awareness & Support.
Stroke and the Spouse Support Groups (Available on Zoom and local meetings)
BJC HealthCare (1-877-682-1044) Specialist from BJC St. Peter’s Hospital will encourage sharing of personal experiences as part of the recovery.
VA Caregiver Support Program Home
The Department of Veteran Affairs (VA) Caregiver Support Program (CSP) offers clinical services to caregivers of eligible and covered Veterans enrolled in the VA health care system. The program’s mission is to promote the health and well-being of family caregivers who care for our Nation’s Veterans, through education, resources, support, and services. There is a CSP team CSP Team Locator located at every VA facilities .
National Family Caregiver Support Program
www.ncdhhs.gov/assistance/adult-services/family-caregiver-support
The NFCSP offers a range of services to support family caregivers: Information to caregivers about available services. Assistance to caregivers in gaining access to the services. Individual counseling, support groups and training to assist caregivers in the areas of health, nutrition and financial literacy.
Family Caregiver Guides - AARP® Caregiver Resource Guide
Make Your Caregiving Journey Easier with AARP's Family Caregiver Local Resource Guides. Find Caregiving Programs, Services & Agencies in Your State with AARP's Resource Guides.
There are resources available to support caregivers.
Centers for Disease Control and Prevention Caregiving
The Public Health Center of Excellence on Dementia Caregiving
American Stroke Association (www.stroke.org) From website -As a caregiver, you provide the most important long-term support for your stroke survivor’s recovery and rehabilitation. But who takes care of you? You’re not alone in facing the challenges to balance your caregiving with family, work, personal time and other commitments.
Medicare (www.medicare.gov) This is the main site for all the correct answers for questions and up to date coverage information needed. Be careful of other websites stating they provide Medicare information.
Aphasia Resources
Support Groups:
Barnes-Jewish Hospital Aphasia Conversation Connection:
A free program with trained facilitators that meets at Barnes-Jewish Extended Care in Clayton. It also includes a monthly Aphasia Caregiver Support Group.
An Aphasia Caregiver Support Group meets monthly in the spring and fall of the year. There is no cost for this program.
For information or to enroll, call or email Beth Barbeiri at (314) 273-0184 or esb2875@bjc.org.
The Rehabilitation Institute of St. Louis:
A monthly, in-person stroke support group is available for survivors and care partners. A portion of the meeting is dedicated to a guest speaker, with time for sharing and socializing.
Contact
Audra Sturmoski
(314) 658-3802
Preferred Contact Method: Email
BJC HealthCare Stroke Support Group:
Offers free monthly stroke support groups at Missouri Baptist Medical Center (in-person) and Barnes-Jewish St. Peters Hospital (in-person and virtual).
Meetings are noon – 2 p.m. the second Thursday of each month at Missouri Baptist Medical Center
1 p.m. – 2 p.m. at Barnes-Jewish St. Peters Hospital
St. Louis VA Stroke Support Group: Meets monthly and is open to inpatients, outpatients, stroke survivors, and their caregivers.
Contact
Carla Adderley
(314) 652-4100 x64842
Preferred Contact Method: Phone
Mercy Rehabilitation Hospital South Stroke Support Group:
Holds free, bi-monthly meetings for patients and families, featuring talks from professionals and peer discussions.
Paraquad Stroke Support Group: Offers a monthly group meeting at the Stephen A. Orthwein Center.
Stroke Support Group
Second and fourth Wednesday of every month
2:00-3:00 pm
Location: Stephen A. Orthwein Center 5200 Berthold Ave. St. Louis, MO 63110
Respite Care and Caregiver Payments
Respite care can either be a planned or emergency temporary care or short break provided to unpaid caregivers of a child or adult with disabilities or cognitive loss in order to support and maintain the primary caregiving relationship.
You may take joy and pride in providing care to their loved ones so that they can remain at home, the physical, emotional and financial consequences for the family caregiver can be overwhelming without some support, such as respite. Reminder: the caregiver needs to be concerned with their health as well. Sixty percent of family caregivers age 19 to 64 recently surveyed by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only 33% of non-caregivers.
· Eligible respite recipients include adult family members (including grandparents, of any age, and other relatives who are primary caretakers of children or adults with special needs), foster parents, or others providing care to children who require assistance beyond that required to meet the basic needs of the child and unpaid care to adults who require care to meet basic needs or prevent injury.
The benefits of RESPITE:
Sustain caregiver health and wellness,
Avoid or delay out-of-home placements,
Reduce the likelihood of abuse and neglect.
Respite care or respite services are also a family support service, and in the US is a long-term services and support (LTSS) as described by the Consortium of Citizens with Disabilities in Washington, D.C. as of 2013.
Resources:
www.va.gov › GERIATRICS › docs Respite Care - Veterans Affairs
www.alz.org › caregiving › care-options Respite Care | Alzheimer's Association
care.com Best Respite Care Near You - Saint Louis Respite Care
www.aplaceformom.com· 302,800+ followers on Facebook
Chesterfield Respite Care - Compare Respite Care Options
www.retireguide.com › medicare › servicesMedicare & Respite Care Guidelines: Who Pays & How Often
·Final Tips: medicare.gov or Medicaid.gov
·To find the Family Caregiver Support Program closest to you, visit the Eldercare Locator.
Medicaid Waivers that pay for Respite: Medicaid waivers provide the largest federal source of funding assistance for respite. Each State develops their own waiver eligibility criteria and conditions for specific populations.
·Original Medicare — Medicare Part A and Part B — covers most respite care costs for hospice patients. Respite care must be provided in a Medicare-approved facility, such as a nursing home, hospital or inpatient facility. Medicare will cover up to five straight days of respite care at a time.
Medicare Part A covers 95% of the cost of respite care stays in approved long-term care facilities for up to five days for individuals deemed eligible for hospice care. You're typically required to pay the remaining 5% of the cost.
Products for Recovery and Home Adaptation
Handrails for outside steps and garage (Hold-Tight handrails.com) I had these rails installed entering the back door that had two steps and from the garage into the house. They were sturdy, easy to install and no maintenance.
Handrail for the shower (Temporary) For travel and for home, we were able to provide safety without major renovations. The handrail is sturdy, easy to install and move and cost effective. Available at Walgreens, Amazon, Lowes and Home Depot.
Products for Recovery and Home Adaptation
Numerous resources are available to you while in the hospital. The list of resources include, not only provides the name but how they can help and a place for your notes. This series of resources covers hospital resources, legal forms needed and benefit resources that will help you to navigate the inpatient stay and prepare you and your loved one for discharge from rehabilitation.
Helpful Organizations (Aphasia)
Barnes Jewish Hospital Aphasia Clinic
A joint outpatient program with Washington University School of Medicine, the clinic provides evaluation and treatment for aphasia following a stroke or other neurological conditions.
Appointment: 314-747-1005 https://doctors.bjc.org/wlp2/barnesjewish/doctors/appointment////1
Brain Injury Foundation of St. Louis
"It is the mission of The Brain Injury Foundation of Saint Louis to provide innovative community-based solutions to meet the specific social and vocational needs of individuals with brain injuries."
Address: 7850 Manchester Rd, St. Louis, MO 63143
Contact: Amanda Eaton 314-753-3333 or aeatonslp@gmail.com
Aphasia Support Group
Support Group for both aphasia patient and caregiver.
Crestwood Senior Center.
Address: 8660 Grant Rd, Crestwood, MO 63123
Meetings: Every Wednesday
Preparing the Home -
Checklist and Guide
Free Downloadable Resources showcased in “Stroke and the Spouse”
Prior to discharge home many items need to be addressed. Each specialty shares what you will need once home but never do you receive a comprehensive list. This guide provides preparation to include equipment, driving home, and changes needed for activities of daily living. Not only a checklist but why needed and helpful tips. This is a great tool to give to family and friends so that they can assist with preparing the home.
Thank you for purchasing “Stroke and the Spouse” For additional copies of the resources, please download. These resources are FREE for those who have purchased the book. Please refer to the code in the back of your book for access to download.
The following resources are available:
Caregivers Preventative Care
Family and friends as Resources
Guide for follow up appointments
Health Concerns Flowsheet
Hospital Inpatient Diary
Medication List
Preparation Guide for Returning Home
Questions for Healthcare Providers
Stroke Medical Diary
Travel Guide
Weeky Rehab Diary
Preparing the Home -
Checklist and Guide
Free Downloadable Resources showcased in “Stroke and the Spouse”
Prior to discharge home many items need to be addressed. Each specialty shares what you will need once home but never do you receive a comprehensive list. This guide provides preparation to include equipment, driving home, and changes needed for activities of daily living. Not only a checklist but why needed and helpful tips. This is a great tool to give to family and friends so that they can assist with preparing the home.
Thank you for purchasing “Stroke and the Spouse” For additional copies of the resources, please download. These resources are FREE for those who have purchased the book. Please refer to the code in the back of your book for access to download.
The following resources are available:
Caregivers Preventative Care
Family and friends as Resources
Guide for follow up appointments
Health Concerns Flowsheet
Hospital Inpatient Diary
Medication List
Preparation Guide for Returning Home
Questions for Healthcare Providers
Stroke Medical Diary
Travel Guide
Weeky Rehab Diary