ME Caregivers Connect!

D

Denise

Senior Member (Voting Rights)
#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
 
Is there a way to get a recording of this call?
I missed this and would love to get more info
 
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:
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
 
(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
 
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
 
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
 
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
 
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
 
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!)
 
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