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ME Caregivers Connect!

Discussion in 'Parents and Caregivers' started by Denise, Mar 18, 2018.

  1. Denise

    Denise Senior Member (Voting Rights)

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    #MEAction Caregiver Support Call
    ME Caregivers Connect!

    We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us for the first in a series of calls to connect with, share with and support other caregivers.

    We - Jane, Bobbi and Denise, the call organizers - know firsthand how isolating and all encompassing ME caregiving can be.

    We want to help change that by providing support and resources for ME caregivers and helping caregivers connect with each other and the ME community.

    Before the call, please think about these questions:

    - What are 2 needs caregivers have? (example – estate planning resources, socializing)

    - What are 2 things you do to care for yourself? (listen to music, savor a drink)

    (There are no right or wrong answers but your answer(s) may be a game changer for another caregiver. Also – obviously there are far more than 2 caregiver needs and means of self-care.)

    We look forward to talking with you soon!

    Jane, Bobbi and Denise

    “Sometimes asking for help is the most meaningful example of self-reliance.”
    — from poem “Sometimes” by U.S. Senator Cory Booker
    To join the Meeting:
    https://bluejeans.com/800408499

    To join via phone :
    1) Dial:
    +1.408.740.7256 (United States)
    +1.888.240.2560 (US Toll Free)
    +1.408.317.9253 (Alternate number)
    (see all numbers - http://bluejeans.com/numbers)
    2) Enter Conference ID : 800408499
    Saturday, 24 March 2018 at 4:00 PM EDT

    RSVP here:

    https://my.meaction.net/events/meaction-caregiver-support-call
     
    Inara, Joh, Invisible Woman and 6 others like this.
  2. Andy

    Andy Committee Member & Outreach

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    Bump - this is happening later today.
     
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  3. MErmaid

    MErmaid Guest

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    It’s looks like the meeting is using EST, so 4 hours from now!

    Bump!
     
    Denise and Andy like this.
  4. Kafka

    Kafka Established Member (Voting Rights)

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    Is there a way to get a recording of this call?
    I missed this and would love to get more info
     
  5. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Hi @Kafka

    This is the email address given on the MEAction website for the organisers of this carer's event

    caregiver@meaction.net

    Jane, Bobbi and Denise are the named persons. It might be useful to contact them. This info is from the link in the OP, you might have already found it

    also tagging @Denise
     
    Last edited: Apr 11, 2018
    Denise likes this.
  6. Denise

    Denise Senior Member (Voting Rights)

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    Thanks @Skycloud !

    @Kafka - please DM me.
     
  7. Denise

    Denise Senior Member (Voting Rights)

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    MEAction Caregiver Support Call (21 April 2018)
    We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us for the next meeting to connect with, share with and support other caregivers.

    On this call we will be discussing the recurring sense of loss that comes with ME (and all chronic diseases/conditions) - and in particular the sense of loss caregivers experience.

    To be better able to handle the recurring sense of loss, we would also like to talk about how we, as caregivers, soothe ourselves when these losses surface.



    RSVP here:

    https://my.meaction.net/events/meaction-caregiver-support-call-april





    To join the Meeting:
    https://bluejeans.com/751352851

    To join via phone :
    1) Dial:
    +1.408.740.7256 (United States)
    +1.888.240.2560 (US Toll Free)
    +1.408.317.9253 (Alternate number)
    (see all numbers - http://bluejeans.com/numbers)
    2) Enter Conference ID : 751352851

    Starts on

    Saturday, 21 April 2018 at 4:00 PM EDT

    https://my.meaction.net/events/meaction-caregiver-support-call-april
     
    Andy likes this.
  8. Denise

    Denise Senior Member (Voting Rights)

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    (Sorry for the short notice!)

    MEAction Caregiver Support Call - May

    We invite caregivers of people with ME (spouses, parents, siblings, partners, etc) to join us for the next meeting to connect with, and support other caregivers.


    During this call we’d like to discuss how we can cultivate the best possible relationship both with our loved ones with ME and other family members - children, partners/spouses, parents, etc - who are not patients.


    How do we nurture and protect our relationships?


    CALL REGISTRATION https://my.meaction.net/events/meaction-caregiver-support-call-may


    Saturday, 19 May 2018
    4 p.m. EDT
    1 p.m. (PDT)


    To join the Meeting:
    https://bluejeans.com/721037248


    To join via Room System:
    Video Conferencing System: bjn.vc -or-199.48.152.152
    Meeting ID : 721037248


    To join via phone :
    1) Dial:
    +1.408.740.7256 (United States)
    +1.888.240.2560 (US Toll Free)
    +1.408.317.9253 (Alternate number)
    (see all numbers - http://bluejeans.com/numbers)
    2) Enter Conference ID : 721037248
     
    Andy and Invisible Woman like this.
  9. Denise

    Denise Senior Member (Voting Rights)

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    June Caregivers Call Announcement


    Our next call is Saturday 23 June 2018 at 4pm (EDT)

    We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us for the next meeting to connect with, share with and support other caregivers.




    MEAction Caregiver Support Call JUNE 2018

    Saturday, 23 June 2018 at 4:00 PM EDT



    Register for the call

    https://my.meaction.net/events/caregivers-call





    Join the meeting here:

    https://bluejeans.com/656889112

    To join via Room System:
    Video Conferencing System: bjn.vc -or-199.48.152.152
    Meeting ID : 656889112

    To join via phone :
    1) Dial:
    +1.408.740.7256 (United States)
    +1.888.240.2560 (US Toll Free)
    +1.408.317.9253 (Alternate number)
    (see all numbers - http://bluejeans.com/numbers)
    2) Enter Conference ID : 656889112


    Send us your suggestions for the theme for this call. caregiver@meaction.net


    We hope to talk with you on June 23rd!

    Jane, Bobbi and Denise
     
    Andy likes this.
  10. Denise

    Denise Senior Member (Voting Rights)

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    Update
    During our June call let’s talk about:

    Who are the most understanding people in your lives?

    and

    What is the most surprising/nicest thing someone has done for you (that takes you or your loved one) into account?





    MEAction Caregiver Support Call JUNE 2018

    Saturday, 23 June 2018 at 4:00 PM EDT


    Register for the call


    https://my.meaction.net/events/caregivers-call
     
    Andy and Esther12 like this.
  11. Denise

    Denise Senior Member (Voting Rights)

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    JULY call announcement

    ME Caregiver Support Call (July)
    Our next call will be on Saturday 28 July 2018.

    We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us for the next meeting to connect with, share with and support other caregivers.



    MEAction July Caregiver Support Call

    28 July 2018 at4pm EDT

    Register for the call:

    https://my.meaction.net/events/caregivers-call



    Tentative topic - How to manage one’s own feelings and simultaneously be an active listener. (more on active listening https://www.state.gov/m/a/os/65759.htm )



    To join the Meeting:

    https://bluejeans.com/122229490


    To join via Room System:

    Video Conferencing System: bjn.vc -or-199.48.152.152

    Meeting ID : 122229490


    To join via phone :

    1) Dial:

    +1.408.740.7256 (US (San Jose))

    +1.888.240.2560 (US Toll Free)

    +1.408.317.9253 (US (Primary, San Jose))

    (see all numbers - http://bluejeans.com/numbers)

    2) Enter Conference ID : 122229490





    Question for US-based caregivers (only because of our limited knowledge base as each country has different laws, processes):

    • Are you interested in a separate series of calls to discuss considerations for the future of our loved ones with ME (wills, trusts, housing, disability, etc)?

    • If so, please let us know caregiver@meaction.net


    As always, we look forward to talking with you soon,

    Jane, Bobbi and Denise
     
    Roy S, ahimsa and Andy like this.
  12. Denise

    Denise Senior Member (Voting Rights)

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    August 2018 ME Caregiver Support Call Announcement

    Calls are open to caregivers (spouses, parents, siblings, partners, etc) of people with ME so that we can connect with, share with, and support each other.



    To accommodate people who have Saturday or weekend obligations we are going to host some of our calls on Saturdays and some on Sundays.



    Our August call will be on SUNDAY 19 August at 4pm (ET).



    For our August call, let’s share caregiving tips. (Examples - tips on cutting costs, or saving time, or energy, making the home environment more ME friendly, etc)



    MEAction Caregiver Support Call AUGUST 2018
    SUNDAY 19th of August, 2018 at 4:00 PM EDT

    Register for the call

    https://my.meaction.net/events/august-2018-me-caregiver-support-call



    When

    Sun Aug 19, 2018 4pm – 5:30pm (EDT)



    Phone Dial-in
    +1.408.740.7256 (US (San Jose))
    +1.888.240.2560 (US Toll Free)
    +1.408.317.9253 (US (Primary, San Jose))
    (Global Numbers)

    Meeting ID: 568 306 098

    Room System
    199.48.152.152 or bjn.vc
    Meeting ID: 568 306 098



    We look forward to talking with you on the 19 of August!

    Jane, Bobbi and Denise
     
    Roy S and Inara like this.
  13. Denise

    Denise Senior Member (Voting Rights)

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    ME Caregiver Support Call (September)

    We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us to connect with, share with and support other caregivers.

    Sunday, 30 September 2018 at 4:00 PM EDT
    During our Sept call, let’s discuss tips and thoughts about how to ensure that our loved ones with ME eat as well as possible despite limitations such as cost, access to food, inability to cook, food allergies/sensitivities, comorbidities that impact food selection....
    Call registration info:
    https://my.meaction.net/events/me-caregiver-support-call-september
     
    Dolphin and Andy like this.
  14. Denise

    Denise Senior Member (Voting Rights)

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    ME Caregiver Support Call Saturday 27 October 2018


    TIME: 4pm (ET)



    Call registration link:

    https://my.meaction.net/events/me-caregiver-support-call-october





    ME Caregiver Support Call (October)
    We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us to connect with, share with and support other caregivers.

    ------------
    To join the Meeting:
    https://bluejeans.com/520708467

    To join via phone :
    1) Dial:
    +1.408.740.7256 (US (San Jose))
    +1.888.240.2560 (US Toll Free)
    +1.408.317.9253 (US (Primary, San Jose))
    (see all numbers - http://bluejeans.com/numbers)
    2) Enter Conference ID : 520708467
    ------------

    Our October topic will be holidays.

    When ME is (an unwanted) part of our lives, everyday minutiae become complicated to manage – for patients and for caregivers. Adding in things like celebrations can make things even more complicated/difficult.

    Do you celebrate/honor holidays (Kwanzaa, Hanukkah, Christmas, Easter, etc)?

    Are there things you have done to streamline celebrations, make them more manageable for/accessible to your loved one(s) with ME?

    How can long-distance caregivers and their loved ones celebrate together? (In person, online, other?)

    Are there traditions you want to maintain but would like input on ways to make them easier?

    Join us to share thoughts, work-arounds, concerns.

    Jane, Denise and Bobbi​



    Even if you don't take part in the call, if you have holiday work-arounds to share, please send them to caregiver@meaction.net (I need all the help/suggestions I can get!)
     
    Andy likes this.

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