Showing posts with label caregivers. Show all posts
Showing posts with label caregivers. Show all posts

Wednesday, December 8, 2021

Dec. 8, 2021 Surviving Holiday Stress

For the last chat of 2021 we discussed Surviving Holiday Stress. Online resources and advice were shared by participants to help with the challenges of celebrating holidays as a cancer patient/survivor. You may find the transcript here and the analytics here. 

Below is a summary of the topic questions and answers . 

T1: What do you look forward to during the winter holidays? What traditions bring you comfort and/or joy?

  • I continued the tradition I had growing up where each child picks out a new ornament for the tree each year. We also have 2 different advent calendars - one from my childhood - that we all enjoy. Watching ELF and the original Miracle on 34th Street are also a must. :)
  • My favorite holiday traditions are time with my people, our annual homemade gifts, baking, music, and holiday light tours.
  • I love baking cookies that I used to eat growing up. And I love decorating the tree. Every ornament has a story - a trip , event or from when my kids were growing up.
  • I also love to attend a Christmas Eve candlelight service with my husband and kids before heading off to celebrate with extended family. Some peace before the bustle. 
T2: How can a major diagnosis impact your experience of the holidays and your traditions? Does this change over time?

  • per @SHAREing expectations of being or looking like the person you were before your diagnosis can have an impact on your decision to attend gatherings or on your interactions during gatherings. Financial strain can also make gift giving an added source of stress.
  • When getting chemotherapy treatment I didn’t have time for things or was so tired I could do the things if I wanted to. So was a tough to adjust at first.
  • I also talk with clients about giving themselves permission—and explaining to others—to need something completely different than previous years. Sometimes, it is okay to let a tradition lapse.
  • Some people may just need to have a caregiver say - It's OK to not - bake dozens of cookies or buy all the gifts or put every decoration out. 
  • per @CancerHopeNet a great strategy is to simplify - get to the core of what matters to you - but also plan for how cancer may interrupt your celebrations. They also remind us all to check on caregivers and their needs over the holidays.
  • If you have a holiday tradition you'd like to participate in please talk with you healthcare team. You may be able to reschedule to allow a short treatment break so you don't miss important times with your family. #LittleBigThings
  • And some caregivers need a support person who is reminding _them_ that it is “okay to not” as well
T3: What are some things you changed about how you celebrated when you/your loved one were first diagnosed? What are some tips for those celebrating while in active treatment?

  • Similar to the last topic, I encourage people to focus on their top priorities, and let some of the rest fall to the side. Maybe you do less baking, fewer cards, less running. That’s all okay
  • For the holidays, @power4patients suggests: 1) Know your limits and rest when you need to. 2) Allow extra time for preparing for travel or a get together - especially med prep. 3) Be conscious of foods you don't normally consume.
  • I picked out only 2 cookies to make (instead of 5), I had family help set up and put the lights on the tree. Which left me with what I love adding ornaments. I asked my husband to do the shopping for gifts.
  • Another reality is that, if you are in active treatment and physically miserable, the traditions may need to take a backseat. If needed, give yourself permission to have Christmas in February or Hanukkah in March.
  • In 2011 I wrote this - Advice from Holidays Past https://womenofteal.blogspot.com/2011/11/advice-from-my-christmas-past.html with some tips.

T4: How can you manage relationships when you feel like you are expected to fulfill all your "usual" roles during the holidays? What can you do ahead of time to set expectations?

  • In some ways it is so much easier to just do what we always do... but talking about things - even hard things - can end up being rewarding. Maybe someone else in the family has always wanted to help do or try something but no one's ever asked. :) 
  • I encourage patients and caregivers to be willing to set aside “usual.” To talk to one another and key family members about most important goals/priorities and to say up front that things can be both different AND good.
  • We downsized everything - room-sized tree, modified versions of activities or holiday shows to keep the spirit while recognizing my MIL’s limitations. #gyncsm #caregiver
  • In this article, @cancerhopenet suggests sending a letter/cancer update so you don't have to keep repeating yourself and to be able to just set some clear expectations about how you can celebrate and what you do/don't want to talk about. #gyncsm https://blog.cancerhopenetwork.org/2021/11/03/surviving-the-holidays/
  • I gently remind folks that it is wildly unfair to expect themselves to navigate the holidays as if they didn’t have cancer. They don’t have to like it, but the cancer is there. Holidays with different expectations can be way more fun than holidays with exhaustion.
  • It is hard to ask for help but sharing with loved ones that you might need help with things ahead of time will make it easier.Telling them which festivities are top of your list can help them let others know your situation
  • Women are notoriously bad at asking for help. Everyone who loves someone with a gynecologic cancer this holiday - please ask, offer, ask, insist on helping. #gyncsm #LittleActsofKindness
  • This is a place where family and loved ones have a role. “Let me know how I can help” may mean leading the charge to scale back or modify traditions. Or being the one to champion your loved one’s need for rest. Take the hard convos off their plate. 
T5: How do you feel about starting new traditions and letting go of others? How will this year be different for you?

  • I love the hope and possibility of a new tradition. There are some chores that we hang on to because “we’ve always done it” not because we love them. A forced re-evaluation can make room for something beautiful to grow.
  • Even if you stopped treatment a few months before, you still might not have the energy to "do it all".
  • Traditions ground and connect us to our past, so letting go can be hard. Being sad about that is okay. Mixed feelings are to be expected. Traditions can morph and change over time and new ones can bring joy too - while still finding ways to honor the past.
  • It was hard that first year but the next year holiday season I was – “I don’t need to do that this year either” So the new traditions were OK. 
  • We stopped doing gifts for the 18+ several years back and started doing charity donations instead. Some small gifting has crept back in but, all in all, it is way less stressful. Sometimes a change of pace is just what everyone needs.
  • @americancancer has this great article Handling a Serious Illness Through the Holidays During the COVID-19 Pandemic https://www.cancer.org/latest-news/handling-a-serious-illness-during-the-holidays.html

T6: What are some tips for being more mindful or "in-the-moment" as you celebrate? How can you re-center if things get overwhelming?

  • https://www.hopkinsmedicine.org/health/wellness-and-prevention/4-mindful-tips-to-destress-this-holiday-season 1) Accept Imperfection. Can good be good enough? 2) Where does this fit in the grand scheme? Can I use this moment of frustration as an opportunity to reflect or find a way to make it pleasant? 3) Take a deep breath and respond w/kindness, 
  • I think I've gotten better about listening to my body and asking for what I need. I can better sense my anxiety creeping in and have gotten better about speaking up.
  • For me- If we were visiting others I would ask ahead of time if they had a spot I could lay down if I needed too during the festivities. I did take advantage of it a few times and felt refreshed when I returned to the group.
  • I appreciate these tips on "Protecting Your Mental Health During the Holidays" from @afspnational: https://afsp.org/story/from-thanksgiving-to-new-year-s-protecting-your-mental-health-during-the-holidays Get outside during daylight hours. Take a risk and connect if you are feeling lonely. Do at least 1 thing to improve your sleep this season. (1/3)
  • (2/3) continued... Take breaks. Remove something from your holiday “to do” list. Find a balance between being w/ others and being alone. Find the choices w/in the obligations (assuming you can’t avoid them entirely). Prioritize activities that support your mental health
  • (3/) continued... They also suggest rehearsing a few phrases to help you answer various lines of questions that might come up like: “I’d rather not discuss that today/here.” “I don’t know how to respond to that.” “I’ll have to think about that and get back to you.”
  • @cancercare has good advice in Coping with cancer during the Holidays https://www.cancercare.org/publications/55-coping_with_cancer_during_the_holidays 
Please see Resources below. 


Note there will be no #gyncsm chat in January 2022. 

Save the Date for our next chat on February 9, 2022 at 8pmET on “Finding Emotional Support”.

In January, you can join  #gyncsm @iamcervivor and more for a #SaludTues chat during #CervicalCancer Awareness Month on Tuesday, January 4, 2022 at 1pmET .



We hope peace and light are with you through the winter holidays. We look forward to chatting with you in 2022!

Dee and Christina

RESOURCES 


From Thanksgiving to New Years Protecting Your Mental Health During the Holidays https://afsp.org/story/from-thanksgiving-to-new-year-s-protecting-your-mental-health-during-the-holidays


Handling a Serious Illness Through the Holidays During the COVID-19 Pandemic https://www.cancer.org/latest-news/handling-a-serious-illness-during-the-holidays.html


Let's Talk About it : Ovarian Cancer   The Power of Traditions








Wednesday, January 10, 2018

January 10, 2018 Chat: Caregivers Wants and Needs



Happy New Year!

We were pleased to have Lauren Hand (@LCooperHand) a Gynecologic Oncology Fellow at Magee-Womens Hospital of University of Pittsburg Medical Center and investigator on "The Essential Elements of Caregiver Support in Gynecologic Oncology", join us as our guest for this month's chat.

Forty-six participants joined us as we discussed #carepartners and #caregiver needs and wants. You may find additional analytics here.

We asked six questions and have included some responses to those questions below. For the complete transcript please visit Symplur.

T1: What are the top two things you would tell healthcare providers about the needs of caregivers that you think they need to hear?
  • Caregivers need to make time to care for themselves mentally and physically and they need to accept help from others
  • I'd tell providers that caregivers suffer the same level of burnout that physicians experience & that it should a consideration when designing a care plan
  • T1: 1. Importance of self care. 2. See number 1.
  • #Carepartners need access to information for care coordination. What forms/permissions need to be granted to allow carepartners to consistently speak on patients behalf & engage w/ care team.
T2: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?
  • T2: Be sure you have a HIPAA clearance in place so you can get your person's medical info and give input to the doctor when the patient cannot or does not.
  • A2: It is essential to have your own support system. Seek out a support group and/or a professional therapist to address your own feelings and struggles. If people offer help, take it. You do not have to do it all and you shouldn’t
  • T2: That any decision your patient and you make is the right decision for now, regardless of how it turns out. We can't see the future. Jump on the horse and ride it!
  • Caregiving is one of the hardest roles ever. Important for caregivers to make time for themselves, allow help, ASK for help.
T3: What are some of the barriers to family caregivers getting access to and utilizing the support services they want and need?
  • T3 I’m my biggest barrier. I feel no one will give my loved one the care that I will because I love them
  • Barriers to accessing and utilizing support services are often rooted in lack of awareness of what is available or that they even exist, financial concerns, and time. Additionally, many caregivers place personal/internal pressure on themselves to do it all. 
  • The biggest barriers are realization that caregivers need help themselves. Actually finding and tapping into resources is also tough
  • Speaking from a tech side, interoperability deficits keep patients and caregivers from connecting the dots of their care & support. Access is a peculiar thing when communication is an obstacle
T4a: What resources for caregiver support have you found in your area (formal and informal)? Have you utilized these resources?
  • my hospital offers a caregiver support group, but my husband never went. Too busy, inconvenient time of day. 
  • caregivers in US and Canada can reach out to @cancerhopenet to be matched to support volunteers who are caregivers. 
  • my cancer dx and tx propelled us to finally find a spiritual home in joining a church. Not exactly caregiver support, but we can’t do this living and needing alone 
  • @Smartpatients is good for helping caregivers, patients, and concerned friends get up to speed with all the terminology involved in disease and care. No question is too small or too large. 
  • T-4 There has only been one local resource which was found late after my dx, not used. However, multiple online resources were utilized: @teaminspire was one. I also helped start a FB group called Friends and Family just for this purpose.
T4b: How did you find out about local caregiving resources - physician, nurse, cancer center, nonprofit, etc.?
  • none of the above. It was all found via personal online searching. Great reason for office liaisons
  • I heard about Caregiver resources from my cancer center's social worker.
  • It was not easy! I found out about local resources through online searches and some support groups post their information in the local paper. Word of mouth/friends can be a good resource, as well as the hospitals in the area.
T5: If you could design a local family caregiver support program, what would that look like? What would you see as most important?
  • I think some online modules or TELhealth style for quick consults could be helpful in taking time when you find that free 15min 
  • Include a 24/7 support line when you need someone available to talk through the difficult times.
  • I'd love to see #carepartners be able to reach out to another #caregiver at the same cancer center to help navigate the maze of paperwork , tests, insurance, scheduling. Every center has their own routine, requirements
  • You know, even basics, like a list of the grocery stores in the area that do Click and Ship and help setting up - practical things
  • Honestly, I think it should be multifaceted. Not every patient/caregiver responds in same way. I would make sure KIDS were an area of focus. I may also divide care by severity of disease at this can greatly impact the level of necessary care
  • I would like a caregiver support group that addresses the needs of younger families/caregivers. This includes better and more flexible scheduling. My particular area lacks non-English speaking support groups, which leaves a lot of people without resources.
T6: What national/digital resources for caregivers have you found helpful? How can national and local programs work together?
A complete list of resources shared during the chat may be found below. 

The Essential Elements of Caregiver Support in Gynecologic Oncology project:
If you are a caregiver of or a patient with gyn cancer interested in sharing more ideas about caregiving in a formal survey you are invited to participate in an online survey. Participation would involve 2-3 hours of your time through online surveys. Please contact (Lauren Hand) at handlc@upmc.edu.

Continue this conversation by joining us on the Smart Patients platform  (https://www.smartpatients.com/partners/gyncsm).

The February #gyncsm chat topic will be "Let’s Talk - Communication" focusing on patient-doctor communication.

We hope to see you then.

Dee
#gyncsm Co-founder

RESOURCES
@cancerhopenet Cancer Hope Network

@CancerSupportHQ Cancer Support Community https://www.cancersupportcommunity.org/caregivers

@Smartpatients Smart Patients Caregivers Group

@CancerDotNet Cancer.net

@SHAREing SHARE Caregiver Support https://www.sharecancersupport.org/caregivers-support/

@theNCI https://www.cancer.gov/resources-for/caregivers

@AmericanCancer American Cancer Society https://www.cancer.org/treatment/caregivers.html

@livestrong LIVESTRONG https://www.livestrong.org/we-can-help/caregiver-support

@CancerCare Caregiver resource page https://www.cancercare.org/tagged/caregiving

@ASCO Cancer.net international patients caregiver info https://www.cancer.net/coping-with-cancer/finding-support-and-information/international-patient-information


Family Caregiver Alliance https://t.co/6FgV2vrN3N (800) 445-8106

Friday, January 5, 2018

January '18 Chat: Supporting Caregiver Wants and Needs

Happy New Year to our community!



We will begin a new year of chats on Wednesday, January 10, 2018 with a discussion on Supporting Caregiver Wants and Needs. Our guest will be Lauren Hand, (@LCooperHand) a Gynecologic Oncology Fellow at Magee-Womens Hospital of University of Pittsburg Medical Center. Ms Hand is an investigator on The Essential Elements of Caregiver Support in Gynecologic Oncology, a project through the University of Pittsburgh. The goals of the project are to identify the unmet needs of family caregivers, summarize the current state of practice of supporting caregivers, and propose a set of essential and actionable elements to be included in any caregiver support program in gynecologic cancer.

The questions that we will use to guide are discussion are:

T1: What are the top two things you would tell healthcare providers about the needs of caregivers that you think they need to hear?

T2: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?

T3: What are some of the barriers to family caregivers getting access to and utilizing the support services they want and need?

T4a: What resources for caregiver support have you found in your area (formal and informal)? Have you utilized these resources?
T4b: How did you find out about local caregiving resources - physician, nurse, cancer center, nonprofit, etc.?

T5: If you could design a local family caregiver support program, what would that look like? What would you see as most important?

T6: What national/digital resources for caregivers have you found helpful? How can national and local programs work together?

You may want to check out Cancer.net's pages on Caregivers Taking Care of Themselves:
https://www.cancer.net/coping-with-cancer/caring-loved-one/caregivers-taking-care-themselves

We look forward to chatting with you on Wednesday. 

Dee and Christina 
Founders Gyncsm