January 13, 2016 Caring for the Caregiver Chat

The topic of the first chat of 2016 was Caring for the Caregiver. In addition to our health care moderators and our mental health moderator we were joined by Denise Brown, @caregiving, from CareGiving.com.  

We had 42 participants, 663 tweets and over 4 million impressions. Additional analytics may be found here. You may find the transcript here.

For this chat, "caregivers" refers to the unpaid loved ones caring for someone diagnosed with a GYN cancer / serious illness. Below is a sampling of responses to our questions.

T1: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?

• It's important to ask for and receive all the help you can. Caregiving is hard.
• Communication with health care pros and family members is critical--ask questions, share concerns, be open to feedback
• pencil in breaks, get back up - don't feel guilty about You time - hard to do but helpful

T2: Being a caregiver 24/7 is draining. What have you done to prevent “burn-out” -  for yourself or your loved one?

• Find the thing that helps you release, whatever it is. Exercise, meditation, hobbies. Remember to take time for you
• Have a support system that you trust--to whom you speak honestly about your feelings. Bottling up adds to burnout. 
• experiment with different options - meditation, yoga, crafts, vegging out - find what is right for you to relax and recharge
• Have a "Job Jar" list ready so you can take advantage of any offers to help. More help = less burnout.

T3: Caregivers-What do you wish your loved one spoke to you about? Survivors-Why is it difficult for you to talk to your caregiver?

• I think if pt/caregiver can touch on @caregiving's point about fear of being abandoned, that's key
• wish patients would share their fears more--sometimes talking about it helps both parties get "on the same page"
• I think everyone wants an honest conversation about the end and the courage to begin and revisit it as often as possible. 

T4A: Caregivers "wear many hats". What are some of those roles? Which seem to be the most challenging?

• My husband was my chauffeur, chef, insurance ombudsman, and advocate
• Family caregivers are cooks, drivers, med and wound care managers, appointment schedulers, keepers of the stories.
• An ear to listen; a shoulder to cry on; a heart to understand
• The toughest role I see caregivers play is the one of a person forced to watch someone they love suffer.

T4B: What are some tips and tools for keeping everything coordinated - healthcare, house, family, etc.?

• Sites to ease keeping everyone informed and coordinated: @rallyhood @CaringBridge @LotsaHelping @tyzenetworks
• In my family, we share a Google calendar to track appointments and divvy up responsibilities.
• I love the "cancer binder" concept. Also the virtual iterations of that. And willingness to let some balls drop.
• One of our tools [ on CareGiving.com ] are @Atul_Gawande-inspired checklists to help patients and caregivers self-advocate and navigate the HC system

T5: Where do caregivers go for support? Do you connect with other caregivers? What are some helpful resources for caregivers?

• Support groups. Knowing you are not alone.
• Remind caregivers (and patients) that therapy can be a powerful space for supporting health.
• Churches, temples, PTA moms, Teachers doctor's nurses, social workers in hospital 
• Just as you receive support, know you have wisdom and insights that benefit others, too

Please scroll down for Resources shared during the chat. You may continue our Caregiver conversation on Smart Patients at https://www.smartpatients.com/gyncsm.

Be sure to join us on Wednesday, February 10, 2016 at 9pmET for our discussion on Rarer GYN Cancers : Fallopian and Vulvar. February 29th is Rare Disease Day around the world - Learn more at www.rarediseaseday.org

Dee
#gyncsm Co-Moderator


RESOURCES

Cancer.Net webpages Caring for a Loved One 

@AmericanCancer - https://t.co/qmtsAiCLRo

Ring Theory - http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

Facing Life with #ovariancancer for Caregivers @OCRF https://t.co/xyQJ8FxIXI

Coping with Cancer – For Family and Friends  @theNCI https://t.co/UlSzLz70vX

Helpful Tips for Supporting the cancer patient's long-distance caregiver @ONAcom https://t.co/VNKrcLJ3OY

Cancer Caregivers Support | Don't Do It Alone!!! | @SHAREing https://t.co/tSL4C9gLg1

Support for Caregivers of Cancer Patients: Transition After Active Treatment @AACR https://t.co/XdK3NNUGnG

6 vital things for caregivers via @savor_health blog https://t.co/j0HRL9ksl6

Providing friendship, understanding & support 4 kids/teens who have a parent w/ cancer #gyncsm https://t.co/LdtHYLlFBQ

Resource | Caregiver support groups, workshops, article from @CancerCare   https://t.co/ktuWjIR3MU 

Video - Role of the Caregiver 
http://www.curetoday.com/cureconnections/videos/a-cancer-journey-the-role-of-the-caregiver

@CancerSupportCm Cancer Support Community tips 
http://www.cancersupportcommunity.org/MainMenu/Family-Friends/Caregiving/Tips-for-Caregivers.html 

Sharing their pain http://www.curetoday.com/publications/cure/2015/spring2015/caregiver-challenge-sharing-their-pain 

Time management for caregivers 
http://www.curetoday.com/publications/cure/2015/Summer-2015/time-management-techniques-for-caregivers

General caregiving resources through @caregiving @carenovatemag @CaregiverAlly @NA4Caregiving @CaregiverAction

Help for #Cancer Caregivers: Burnout, Stress, Resources Coping with Loss & So Much More! http://www.helpforcancercaregivers.org

Caring for the Caregiver - @CancerAdvocacy Cancer Survival Toolbox® Special Topics http://www.canceradvocacy.org/resources/cancer-survival-toolbox/special-topics/caring-for-the-caregiver/