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How to start or contact a Care Giver Support Group?

  • By Perilune

    I think I need a care giver support group. Maybe on line, or maybe locally in person. How do people go about starting care giver support groups? Or do you have links to groups on line that are already active. I can’t seem to sort it out on the website as searching care giver support groups doesn’t bring up direct info.

    I’m 2 years into supporting my 28 year old son, so new to the role in many ways. He stays with me, is fairly independent, but can’t work enough to support himself, works to much for SSA….etc. He’s young, I’m not. Mostly, it’s his persistent low spirits and irritability that concern me now, in the dead of a hard Vermont winter. My friends are compassionate, but mostly they feel badly for us, or give us “oh everything will be alright” treatment. I’m not so sure about that.

    Thanks ~ Margaret

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  • By Erin Rush Moderator

    Hi Margaret! I am so glad you reached out to the community. There are a number of caregiver support groups, both online and in real life. You may be able to start checking some out by typing “MS caregiver support” or something along those lines into a search engine like Google. You can also type something like this into Facebook and see what groups might meet your needs.

    If you want some information on groups we can lead you to, you can check out some of the resources on the National Multiple Sclerosis Society’s website. You can contact an MSNavigator for some help finding support resources for yourself — https://www.nationalmssociety.org/Resources-Support/Find-Support/Ask-an-MS-Navigator. An MSNavigator may be able to help you locate local support groups as well. Also, this pdf from the NMSS is pretty full of information for MS caregivers — https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Carepartner-Support-Resources.pdf.

    If you haven’t already, you can ask your son’s doctor about possible caregiver support groups in your area. Also, while not specifically focused on MS, the Family CareGiver Alliance (FCA) is a great resource for family caregivers — https://www.caregiver.org/caregiver-connect.

    I hope this gives you some ideas where to start and I hope you can get the support you need. Caregiving is very hard and you need to find support for yourself to be the best you can be for you and your son. I am so sorry winter is so hard on your son. The NMSS also has resources that he may want to look into as well. We have a number of young contributors on this site that can definitely identify with your son. Specifically, Devin Garlit writes a lot about being a young man living with a life changing condition. You can check out his work here — https://multiplesclerosis.net/author/dev71/.

    Best of luck and please know you can also come here anytime you are needing some support or a place to vent.

    Best, Erin, MultipleSclerosis.net Team member.

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