Caregiver resources

 

A caregiver’s story

My name is Jana and I have been providing care to a person with ME (pwME) for several years. My pwME is my husband and the journey from partner to caregiver hasn’t been easy, nor is it over. I’m still learning about ways to cope and finding new resources that can help me do it better. 

 

One of the first things anyone says to me when they find out that 

I care for someone who is chronically ill and bed-bound, whether

they’re a doctor, nurse, other health care provider, friend, stranger,

is that self-care is important. But that is often easier said than done. 

 

This page is here to try to help you in your caregiving. Some of the

references are to ME-specific caregiver resources or information

but many are not. It’s important to note that none of these links are

endorsed by the ME/FM Society of BC. Everything has been collected

based on how it has helped me, or other caregivers like me, and I

hope you find some of it helpful too. If you have questions,

recommendations for sources for this page, or you would like to

share your own story, please contact info@mefm.bc.ca.

 

ME caregiving resources

MEAction’s caregiver Facebook support group. You have to request access to this closed group for caregivers of pwME from all over the world: https://www.facebook.com/groups/meactioncaregivers.

 

SolveME patient and caregiver resources: 

General - https://solvecfs.org/research/patient-and-caregiver-resources/

Caregiver - https://solvecfs.org/loving-someone-with-me-cfs/ 

 

US CDC document for parents of children with ME: https://www.cdc.gov/me-cfs/pdfs/me-cfs-children-parents.pdf

 

Open Medicine Foundation (OMF) resource page with specific resources for parents of children with ME: https://www.omf.ngo/resource-center/#parent

 

MEAction’s guide to caregiving with additional links at the end of the document: https://www.meaction.net/wp-content/uploads/2015/05/Caregivers-Guide-to-ME-1.pdf 

 

ME/CFS and FM Self-Help page with links to resources: http://www.cfsselfhelp.org/library/topic/family-and-friends 

Many caregivers also find books, websites, blogs and podcasts about living with ME can also be helpful when trying to understand what it’s like to live with ME. 

 

 

Non-ME caregiving resources

 

Family Caregivers of BC website: https://www.familycaregiversbc.ca/. They also do podcasts: https://www.familycaregiversbc.ca/podcast/

 

Caring.com is a site geared to people caring for the elderly but there are some less specific resources are available: https://www.caring.com/caregivers/ 

 

The Caregiver Space: https://thecaregiverspace.org/ 

 

Doctors of BC list of community resources for family caregivers, including financial aid: https://www.doctorsofbc.ca/sites/default/files/resourcesforcaregivers-tearsheet.pdf 

 

Other caregivers have found books, podcasts and blogs on the following topics helpful:

  • General caregiving

  • Caregiver burnout

  • Meditation and mindfulness for caregivers

  • Setting boundaries

  • Relaxation and stress relief techniques

 

You may also want to consider:

  • Some form of regular physical activity, acupuncture, massage therapy, etc.

  • Guided breathing and meditation

  • Apps that help with time management, organization, health and wellbeing

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