#carechat Transcript

Healthcare social media transcript of the #carechat hashtag.
().
See #carechat Influencers/Analytics.

ProfileTweet
Caregiving.com @caregiving
Hi Everyone! Welcome to #carechat!! Please introduce yourself and tell us about your caregiving situation.
Caregiving.com @caregiving
During today's #carechat, we'll talk about the messages we hear and read about our caregiving situation. Anyone who cares or cared for a family member is welcome! If you care about caregiving issues, please join us, too.
Caregiving.com @caregiving
I help my parents and support those who care through my work. #carechat
Debra Hallisey @advocatemomdad
Good afternoon! Deb here caregiver for my mother, previously caregiver for my dad. #carechat
Caregiving.com @caregiving
RT @advocatemomdad: Good afternoon! Deb here caregiver for my mother, previously caregiver for my dad. #carechat
Caregiving.com @caregiving
@advocatemomdad Hi Deb! How was your Thanksgiving? #carechat
Matt Perrin @matt_perrin
Hi! I care for mom Rosemary living with #alz and member of my father-in-law Steve's care team as he lives with #lewybodydementia. Glad to make it today. #carechat
Caregiving.com @caregiving
RT @matt_perrin: Hi! I care for mom Rosemary living with #alz and member of my father-in-law Steve's care team as he lives with #lewybodydementia. Glad to make it today. #carechat
Caregiving.com @caregiving
@matt_perrin Hi Matt! How was your holiday? #carechat
Matt Perrin @matt_perrin
@caregiving Hi Denise! Thanksgiving was actually great. We made some adjustments this year and they really worked well. And yours? #carechat
Caregiving.com @caregiving
@matt_perrin I'm sooo glad to hear that! We had a nice holiday, as well. #carechat
Jinesh Jani @Jhjani09
Hi. This is Jinesh Jani #carechat
Caregiving.com @caregiving
Q1. How do you describe your caregiving role? #carechat
Caregiving.com @caregiving
Welcome Jinesh! Great to see you! #carechat
Matt Perrin @matt_perrin
@caregiving Thanks and glad to hear it! #carechat
Caregiving.com @caregiving
So glad you could join us, Jane! #carechat
Debra Hallisey @advocatemomdad
@Jhjani09 Hi Janish! #carechat
Caregiving.com @caregiving
A1. I explain that I help my parents because I'm not currently providing hands-on care. #carechat
Debra Hallisey @advocatemomdad
@bayliss_j94 @caregiving Jane, Lovely to have you join us #carechat
Caregiving.com @caregiving
RT @bayliss_j94:
Aisha Adkins, MPA, CNP @AishaAdkins
Hi, friends! I can't join you today, but I wanted to stop by to say hello and that I am thinking of all of you, especially during this holiday season. Winter break is coming up soon, so hopefully I will be able to join you after classes are done. ::hugs:: #CareChat
Matt Perrin @matt_perrin
A1. All consuming and fulfilling. #carechat
Caregiving.com @caregiving
1A. Just curious: How many of you describe yourself as family caregiver? #carechat
Caregiving.com @caregiving
RT @bayliss_j94:
Caregiving.com @caregiving
RT @matt_perrin: A1. All consuming and fulfilling. #carechat
Matt Perrin @matt_perrin
@caregiving A1A. Honestly don't think too much about titles. I'm not hands on physically day to day with mom--she's in assisted living. But I'm 'mind on' every day--supporting her and managing her life. More hands on with FIL as he lives with us. More often say 'care for..." #carechat
Caregiving.com @caregiving
@AishaAdkins Wishing you a successful end to your semester!! #carechat
Debra Hallisey @advocatemomdad
RT @matt_perrin: @caregiving A1A. Honestly don't think too much about titles. I'm not hands on physically day to day with mom--she's in assisted living. But I'm 'mind on' every day--supporting her and managing her life. More hands on with FIL as he lives with us. More often say 'care for..." #carechat
Caregiving.com @caregiving
#carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
A1: I'm currently a long distance caregiver supporting my sister who cares for my mom full-time.
Jinesh Jani @Jhjani09
A1. I do consider myself as family caregiver. Support my Mom and sister who have disability. Also, supported my wife in her role as a remote family caregiver as her Mom had been sick in India. It is at times mentally exhausting and stressful.#carechat
Caregiving.com @caregiving
@matt_perrin I agree on the titles. Our worries are ever present, that's for sure. #carechat
Caregiving.com @caregiving
RT @Jhjani09: A1. I do consider myself as family caregiver. Support my Mom and sister who have disability. Also, supported my wife in her role as a remote family caregiver as her Mom had been sick in India. It is at times mentally exhausting and stressful.#carechat
Caregiving.com @caregiving
@Jhjani09 Absolutely! Caregiving takes it toll on us emotionally. #carechat
Caregiving.com @caregiving
Q2. When others hear about your caregiving responsibilities, which responses do you receive which you find helpful or comforting? #carechat
Matt Perrin @matt_perrin
@bayliss_j94 Truth Jane. 🎯 #carechat
Caregiving.com @caregiving
A2. I find helpful responses which reflect on "seeing" the importance of my responsibilities. #carechat
Mike Parsons @MikeP39369411
RT @bayliss_j94:
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
A2 Hearing something that validate the heavy physical and emotional load feels good and opens me up to share. #carechat
Caregiving.com @caregiving
RT @HHCaregiver: A2 Hearing something that validate the heavy physical and emotional load feels good and opens me up to share. #carechat
Jinesh Jani @Jhjani09
A2. Positivity and comforting words in responses.#carechat
Caregiving.com @caregiving
@HHCaregiver Yes! That's exactly it! We feel understood which makes us feel comfortable to share. #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
RT @Jhjani09: A2. Positivity and comforting words in responses.#carechat
Debra Hallisey @advocatemomdad
RT @HHCaregiver: A2 Hearing something that validate the heavy physical and emotional load feels good and opens me up to share. #carechat
Caregiving.com @caregiving
@HHCaregiver How's lunch by the way? #carechat
Caregiving.com @caregiving
RT @Jhjani09: A2. Positivity and comforting words in responses.#carechat
Matt Perrin @matt_perrin
A2: The responses that are most helpful aren't words for me. It is proactive action to help/support. #carechat
Matt Perrin @matt_perrin
to lighten the load of responsibility. Even temporarily. #carechat
Caregiving.com @caregiving
RT @matt_perrin: A2: A2: The responses that are most helpful aren't words for me. It is proactive action to help/support. #carechat
Caregiving.com @caregiving
RT @matt_perrin: to lighten the load of responsibility. Even temporarily. #carechat
Caregiving.com @caregiving
RT @bayliss_j94:
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
Today's lunch: salad bar downstairs: 3 kinds of lettuce, grilled chicken, green olives, egg, sunflower seeds with o&v. Tasty! #tryingtoeathealthybetweenholidays #carechat
Debra Hallisey @advocatemomdad
A2. Ones that are empathetic. I don't find it helpful to try and fix the issue or empty platitudes. #carechat
Caregiving.com @caregiving
@matt_perrin Yes!! Helping hands are the best sign of support. #carechat
Caregiving.com @caregiving
RT @advocatemomdad: A2. Ones that are empathetic. I don't find it helpful to try and fix the issue or empty platitudes. #carechat
Caregiving.com @caregiving
@HHCaregiver YUM!! #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
Yes @matt_perrin ! Specific ways like can I come by for a visit on Saturday or bring you dinner on Sunday. #carechat
Caregiving.com @caregiving
@advocatemomdad Totally agree. Makes me crazy when I get the "you should..." #carechat
Caregiving.com @caregiving
#carechat
Matt Perrin @matt_perrin
@advocatemomdad Yeah, the platitudes get under my skin. And have impact b/c I know whomever is delivering the platitude means well...but still. #carechat
Caregiving.com @caregiving
Q3. When others hear about your caregiving responsibilities, which responses do you receive which make you crazy? #carechat
Caregiving.com @caregiving
RT @matt_perrin: @advocatemomdad Yeah, the platitudes get under my skin. And have impact b/c I know whomever is delivering the platitude means well...but still. #carechat
Caregiving.com @caregiving
RT @HHCaregiver: Yes @matt_perrin ! Specific ways like can I come by for a visit on Saturday or bring you dinner on Sunday. #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
Yes please do not 'should' on #caregivers We already feel like we can never do enough😡#carechat
Caregiving.com @caregiving
RT @bayliss_j94:
Matt Perrin @matt_perrin
@HHCaregiver There it is. Exactly! #carechat
Jinesh Jani @Jhjani09
A3. Unsolicited advice with no support #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
@bayliss_j94 @caregiving @advocatemomdad The 'mate' makes it sound so much nicer :-) #carechat
Caregiving.com @caregiving
A3. I had an odd email exchange last spring with a colleague who kept telling me how healthy my parents, which means I can't really be helping them. Honestly, they look as healthy as they do because we help them. #carechat
Caregiving.com @caregiving
RT @HHCaregiver: Yes please do not 'should' on #caregivers We already feel like we can never do enough😡#carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
A3. I dislike "Wow! I could never do what you do." (I want to respond that they will have to learn at some point in life) #carechat
Caregiving.com @caregiving
Q4. What question do you wish others asked you about your caregiving responsibilities? #carechat
Caregiving.com @caregiving
RT @HHCaregiver: A3. I dislike "Wow! I could never do what you do." (I want to respond that they will have to learn at some point in life) #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
Yes! My mom gets the BEST care in the world from my sister @SusieMorrell and I have no doubt she has prolonged her life in YEARS. #carechat
Caregiving.com @caregiving
RT @Jhjani09: A3. Unsolicited advice with no support #carechat
Caregiving.com @caregiving
RT @HHCaregiver: Yes! My mom gets the BEST care in the world from my sister @SusieMorrell and I have no doubt she has prolonged her life in YEARS. #carechat
Caregiving.com @caregiving
RT @bayliss_j94:
Caregiving.com @caregiving
@bayliss_j94 Ugh. Those are awful questions. #carechat
Caregiving.com @caregiving
A4. I think it would be nice if someone took the time to learn about my caregiving role rather than assume they know what it's like for me. #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
A4. "Do you have time to share what some of your caregiving, work, or family responsibilities are? I'd like to take some off your plate." #carechat
Matt Perrin @matt_perrin
A3: What @advocatemomdad said captures mine. The fixing and the platitudes. Also big for me is when people imply it's part of my responsibility to 'update them'. I do when I can--but not top priority. Makes me crazy. Sometimes want to tell 'em to 'just show up'. #carechat
Caregiving.com @caregiving
RT @HHCaregiver: A4. "Do you have time to share what some of your caregiving, work, or family responsibilities are? I'd like to take some off your plate." #carechat
Caregiving.com @caregiving
RT @matt_perrin: A3: A3: What @advocatemomdad said captures mine. The fixing and the platitudes. Also big for me is when people imply it's part of my responsibility to 'update them'. I do when I can--but not top priority. Makes me crazy. Sometimes want to tell 'em to 'just show up'. #carechat
Caregiving.com @caregiving
@matt_perrin @advocatemomdad Yep! They could get regular updates through regular visits. #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
Echoing #justshowup ! #carechat
Matt Perrin @matt_perrin
A4. How are *you* doing? #carechat
Caregiving.com @caregiving
RT @bayliss_j94:
Caregiving.com @caregiving
RT @matt_perrin: A4. How are *you* doing? #carechat
Caregiving.com @caregiving
RT @HHCaregiver: Echoing #justshowup ! #carechat
Ginger 🏳️‍🌈 M.Ed, RDN @gingerbouvier1
A4 “How are YOU doing?” and “What can I do to help?” #carechat
Caregiving.com @caregiving
RT @gingerbouvier1: A4 “How are YOU doing?” and “What can I do to help?” #carechat
Caregiving.com @caregiving
@gingerbouvier1 Welcome Ginger! Thanks for being here! #carechat
Matt Perrin @matt_perrin
RT @caregiving: Q4. What question do you wish others asked you about your caregiving responsibilities? #carechat
Caregiving.com @caregiving
RT @bayliss_j94:
Ginger 🏳️‍🌈 M.Ed, RDN @gingerbouvier1
@caregiving Hi 👋🏼 everyone! #carechat
Caregiving.com @caregiving
Q5. Which question about your caregiving responsibilities would you like to never hear again? #carechat
Matt Perrin @matt_perrin
RT @bayliss_j94:
Matt Perrin @matt_perrin
RT @caregiving: A4. I think it would be nice if someone took the time to learn about my caregiving role rather than assume they know what it's like for me. #carechat
Matt Perrin @matt_perrin
RT @HHCaregiver: A4. "Do you have time to share what some of your caregiving, work, or family responsibilities are? I'd like to take some off your plate." #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
A5. What makes you think your mom is ready for hospice? (asked with judgement!) #carechat
Caregiving.com @caregiving
A5. "Should they really be (fill in the blank)?" I'm doing what I can to balance my parents' independence and their safety. Sometimes, the balance is out of whack. I do see it, though. I do! #carechat
Caregiving.com @caregiving
RT @HHCaregiver: A5. What makes you think your mom is ready for hospice? (asked with judgement!) #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
@gingerbouvier1 @caregiving Hi Ginger! #carechat
Matt Perrin @matt_perrin
@HHCaregiver Woah this is a good one. #carechat
Caregiving.com @caregiving
@HHCaregiver That's terrible! Oh, my heavens, what a terrible, insensitive question. #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
RT @gingerbouvier1: A4 “How are YOU doing?” and “What can I do to help?” #carechat
Matt Perrin @matt_perrin
A5: "Why did you....?" Close second: "What stage?" #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
I thought so, too. And...make it worse was a doctor treating mom at the time. (bye bye...) #carechat
Caregiving.com @caregiving
RT @matt_perrin: A5: A5: "Why did you....?" Close second: "What stage?" #carechat
Debra Hallisey @advocatemomdad
RT @HHCaregiver: Yes @matt_perrin ! Specific ways like can I come by for a visit on Saturday or bring you dinner on Sunday. #carechat
Debra Hallisey @advocatemomdad
RT @matt_perrin: A2: A2: The responses that are most helpful aren't words for me. It is proactive action to help/support. #carechat
Caregiving.com @caregiving
@matt_perrin Oh, gosh, the "Why did you..." is incredibly aggravating. Makes you want to respond, "Why didn't you..." #carechat
Caregiving.com @caregiving
@HHCaregiver Oh, no! But I am not surprised. Not the first doctor I've heard say that. Still shaking my head. #carechat
Debra Hallisey @advocatemomdad
RT @caregiving: A3. I had an odd email exchange last spring with a colleague who kept telling me how healthy my parents, which means I can't really be helping them. Honestly, they look as healthy as they do because we help them. #carechat
Matt Perrin @matt_perrin
RT @caregiving: @matt_perrin Oh, gosh, the "Why did you..." is incredibly aggravating. Makes you want to respond, "Why didn't you..." #carechat
Debra Hallisey @advocatemomdad
RT @HHCaregiver: A3. I dislike "Wow! I could never do what you do." (I want to respond that they will have to learn at some point in life) #carechat
Caregiving.com @caregiving
RT @bayliss_j94: @caregiving A5:
Debra Hallisey @advocatemomdad
RT @HHCaregiver: A4. "Do you have time to share what some of your caregiving, work, or family responsibilities are? I'd like to take some off your plate." #carechat
Caregiving.com @caregiving
@bayliss_j94 The "Can't someone else..." is really frustrating. Why does that even matter? #carechat
Debra Hallisey @advocatemomdad
@matt_perrin I love it "just show up" - yes! #carechat
Caregiving.com @caregiving
Q6. Which messages about caregiving experiences and situations do you read and hear in the media that miss the mark? #carechat
Debra Hallisey @advocatemomdad
RT @gingerbouvier1: A4 “How are YOU doing?” and “What can I do to help?” #carechat
Caregiving.com @caregiving
RT @bayliss_j94:
Debra Hallisey @advocatemomdad
@HHCaregiver Seriously????? #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
Thanks @caregiving and care friends for the dialogue...back to work for me ((hugs)) #carechat
Debra Hallisey @advocatemomdad
RT @caregiving: A5. "Should they really be (fill in the blank)?" I'm doing what I can to balance my parents' independence and their safety. Sometimes, the balance is out of whack. I do see it, though. I do! #carechat
Debra Hallisey @advocatemomdad
RT @caregiving: @matt_perrin Oh, gosh, the "Why did you..." is incredibly aggravating. Makes you want to respond, "Why didn't you..." #carechat
Matt Perrin @matt_perrin
Need to run. Great topic @caregiving. Thanks all for the great conversation. Have a good afternoon! #carechat
𝙴𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝙼𝚒𝚕𝚕𝚎𝚛 @HHCaregiver
@advocatemomdad Yes. Made me feel horrible. Doctors need to be educated more on palliative care and hospice options. #carechat
Debra Hallisey @advocatemomdad
RT @HHCaregiver: @advocatemomdad Yes. Made me feel horrible. Doctors need to be educated more on palliative care and hospice options. #carechat
Caregiving.com @caregiving
A6. I am frustrated by any message that seems to honor us for putting our lives on hold. That's not a helpful message! It's so hard to keep our life but we want to be encouraged to do that -- not to stop our lives. #carechat
Caregiving.com @caregiving
RT @HHCaregiver: @advocatemomdad Yes. Made me feel horrible. Doctors need to be educated more on palliative care and hospice options. #carechat
Power Beyond Psoriasis @Psoriasischamp
RT @bayliss_j94:
Power Beyond Psoriasis @Psoriasischamp
RT @matt_perrin: A1. All consuming and fulfilling. #carechat
Caregiving.com @caregiving
@HHCaregiver @advocatemomdad Such an emotional time, too. Awful to be subjected to that kind of insensitivity. #carechat
Caregiving.com @caregiving
@matt_perrin Thanks for being here, Matt! #carechat
Debra Hallisey @advocatemomdad
A6. The ones that lay on the guilt! I go crazy when I hear a home care company "You promised dad you'd keep mom at home." just feeds into doing what may be impossible out of guilt. #carechat
Debra Hallisey @advocatemomdad
RT @caregiving: A6. I am frustrated by any message that seems to honor us for putting our lives on hold. That's not a helpful message! It's so hard to keep our life but we want to be encouraged to do that -- not to stop our lives. #carechat
Caregiving.com @caregiving
A6. I'm frustrated by articles that imply we neglect our health. We aren't neglectful -- we're just incredibly busy. #carechat
Caregiving.com @caregiving
RT @advocatemomdad: A6. The ones that lay on the guilt! I go crazy when I hear a home care company "You promised dad you'd keep mom at home." just feeds into doing what may be impossible out of guilt. #carechat
Caregiving.com @caregiving
@advocatemomdad I want to throw the pillow at that commercial. Sets unrealistic expectations. #carechat
Caregiving.com @caregiving
A6. I'm also aggravated when an article shares shallow self-care tips. Self-care during caregiving is different. Sometimes, the best self-care during caregiving is what gives us peace of mind. #carechat
Debra Hallisey @advocatemomdad
RT @caregiving: A6. I'm also aggravated when an article shares shallow self-care tips. Self-care during caregiving is different. Sometimes, the best self-care during caregiving is what gives us peace of mind. #carechat
Caregiving.com @caregiving
Q7. What’s your headline for your caregiving story? #carechat
Debra Hallisey @advocatemomdad
A7. It's work but so worthwhile. #carechat
Marilyn R @MarilynMovies
Hi everyone. Just got home from an iron infusion at the hospital for Mom. Thought I’d say hi and catch the last few minutes of our chat. (Will catch up later) #carechat
Caregiving.com @caregiving
RT @bayliss_j94:
Caregiving.com @caregiving
@MarilynRedfern Good to see you, Marilyn! Hope all is okay. #carechat
Caregiving.com @caregiving
RT @advocatemomdad: A7. It's work but so worthwhile. #carechat
Caregiving.com @caregiving
RT @bayliss_j94:
Caregiving.com @caregiving
So glad you could all join me today!! Please share any links or resources. #carechat
Marilyn R @MarilynMovies
@caregiving All is well. It was an outpatient client. Moms getting a series for iron infusions over the next while. #carechat She did great
Debra Hallisey @advocatemomdad
Thanks Denise for a great chat and to my caregiving peeps for your unrelenting support on this journey. #carechat
Caregiving.com @caregiving
RT @advocatemomdad: Thanks Denise for a great chat and to my caregiving peeps for your unrelenting support on this journey. #carechat
Caregiving.com @caregiving
We chat every Tuesday at 1 p.m. ET. Anyone who cares or cared for a family member is welcome to join us! #carechat
Debra Hallisey @advocatemomdad
"Your Caregiver Relationship Contract" is available on Amazon in print and eBook format. https://t.co/59kTlR7F6m #carechat https://t.co/kkRsGpLEi8
Marilyn R @MarilynMovies
Definitely agree with Jane. #carechat . For me it would also be ‘ the most difficult and most satisfying job you’ll ever have “
Caregiving.com @caregiving
RT @bayliss_j94:
Caregiving.com @caregiving
@bayliss_j94 Feel free to share the link, too. #carechat
Marilyn R @MarilynMovies
#carechat was short but sweet for me today. I’ll review the session later. Love having this group. Until next time, work hard and have fun https://t.co/jmKwekR28z
Caregiving.com @caregiving
Please help this amazing group of young carers! #carechat
Marilyn R @MarilynMovies
@caregiving @matt_perrin What was that saying of my Grandpa’s ‘ words are cheap, it actions are worth a million bucks! I get a lot of praise, sympathy,sometimes uniformed suggestions, but when someone offers something substantive that makes my day. #carechat
Marilyn R @MarilynMovies
#carechat Two things drive me crazy. 1. Defientlry the ‘you should’ and 2. When they feel sorry for me ( I don’t need any pity thanks)
#carechat content from Twitter.