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SHARE THE CARE End of Year Appeal

25-STClog

I’m still me! Living with dementia
Participants wanted for phone-based study
We will create your own personal Life Story Book!

 


 

University FL
LifeStory lab-web
The research lab at the University of Florida (Director: Dr. Susan Bluck) has developed a fun and novel life story activity (i.e., digital Life Story Book) for supporting people with early-stage dementia or memory difficulty, and a family caregiver, during these days of isolation due to the pandemic. 
The activity takes place completely remotely. As this is a research project, besides their own Life Story Book to keep, participants will be paid $60. 
They are also partnering with the Alzheimer’s Association in Florida.
Who can join the study? Qualified people who:
  • Are age 60+ with memory difficulties (early dementia) & friend/family member
  • Have computer, email & internet access
What will I do?
  • Share important memories from your life
  • Provide materials for us to create a Life Story Book for you!
  • Review your Life Story Book daily (2 weeks)
  • Complete questionnaires
Benefits to you:
  • Your own digital Life Story Book
  • $60 for fully completing study
How long does it take?
  • Four phone visits over 2 months.
  • — they set these visits at times that work for you

Want to know more?
We want to hear from you!
Phone: 352 273-3813 (leave a message)
Text: 3352 559-9917

Please find attached the Flyer and information that can be downloaded and shared.
Alzheimers Association
Visit the Life Story Lab website:

Covid-19 virus: MORE SUGGESTIONS TO SHARE WITH YOUR STC GROUP

Corona-CommuteCorona-Commute

Here are some ideas for making a difference even when we can’t go out to visit others who are ill or put the elderly at risk. Where there is a will, there is a way.

We have grouped the suggestions received so far.

Hand-Washing: From Johns Hopkins: This one we need to do right.

https://youtu.be/IisgnbMfKvI

Do it Yourself Face Masks: I heard of a caregiver who freaked out (understandably) because while on a shopping run the clerk sneezed very close to her face. Even though, we are told that we don’t need one, we believe that as caregivers we need protection. We don’t want to take chances nor take away precious facemasks from the doctors and nurses on the front lines. Handmade masks offer some protection from a sneeze that may be the result of allergies and also allow us to feel like we can do something. See below links to sites that show how to make your own mask. Some require a sewing machine, others can be constructed easily with a handkerchief or paper towels and rubber bands.

https://youtu.be/4FB–BOyTiU

https://youtu.be/woJ2lNgDShU

https://youtu.be/wfQKeC-QLok

FaceTiming is EVERYTHING right now: A caregiver that could help facilitate that would be priceless…it’s something that could be done while still maintaining some level of social distancing, but would do a lot to bring light and connection to someone. We’ve been doing charades, dance parties, dinners, happy hours, etc. all via FaceTime.

Zoom, Skype, FaceTime, etc.:
I regularly texted and called my sons and friends. As we’ve moved to Shelter in Place, I have found more comfort in seeing the people I’m speaking with. I’ve even taken to having “breakfast with granddaughter.” My son sets his iPad on the kitchen counter (as do I) and Bayley eats her breakfast with Cap’n Grandpa. A sunny lift for both of us.

Socializing and gaming:
I had a regular Tuesday night poker game. Again, my son Dan to the rescue. He asked me how I was staying connected and told me his friends have switched their Monday board game night to online. They use DISCORD which is essentially a chatroom app with video and audio capability. Similar to Slack but better for games and shared activities. You don’t have to join a “poker site” or “bridge site” or any other paid specialized app…you can set up your private chat room with your friends or STC group for whatever you want to do together. (PS: Apparently my poker buddies are a bunch of Alter Kockers (Yiddish for “old farts”). More than half informed me they either didn’t have or didn’t know if they had video or microphone capabilities on their computers.)

Telemedicine: We had an amazing doctor who did telemedicine with Peggy…a nurse or caregiver could potentially facilitate FaceTime check-ins with a progressive doctor who was open to communicating in this way.

Food delivery, meal prep, shopping: Some amazing ways that caregivers could help…things could be left on the doorstep

I was challenged by my mother’s demand that NO ONE other than me be allowed into her home. It made the formation of a STC group nearly impossible because she wouldn’t even allow me to tell her friends why they couldn’t come in. Grrr.

Someone suggested that I should have started a “doorstep” STC group. I could have organized people to do my outside errands and then leave things for me or her on our doorstep. (As in our ‘Smaller Inner Team / Larger Outer Team STC group’ idea we mentioned in our last Urgent Suggestion email to you.)

We did have someone cook a few meals and soups to keep in the freezer and had frozen plenty of other stuff, including milk. Meals get to be creative!

For Urban Dwellers: living in a co-op building with a Board, we are easily setting up protocols for owners to volunteer to shop for older individuals who don’t feel comfortable or cannot venture outside.

Bicycle Pharma Delivery Service:
My younger son, Dan, stopped using public transportation about two weeks ago and has been bicycling everywhere in NYC. He put the word out to his network of friends and acquaintances that if they were unable or unwilling to venture outside, he would be glad to make pharmacy and other “urgent” runs for them and leave the order on their doorstep. So, without my having told him about his grandmother, he seems to have figured out the mensch strategy!

Strategies for large families: We are caretaking 3 adult children and 3 grandchildren (3,4 and 5) and 3 dogs here, and ourselves.

Keeping Distance: We are being as strict as possible about keeping distance with others hoping that in a few days we will have an assured clean pod here.

My husband is only allowed to collect the mail and get a newspaper if he wears gloves. Any amazon packages are left on the doorstep for 24 hours to air out! We have disposable gloves but no masks.

Home School: The kids have home school every day except weekends…its more for them to have a structured day. We started on day one with A words and activities and we are moving through the Alphabet. A family circle at the beginning of the day when we sing along with a guitar and we take everyone’s temperature. Everyday has long hiking time on the hills and trails. We end school with a peak and pit of my day and closing songs!

Create a JOY list: This would be the perfect time for a caregiver to work with the care recipient to create a “joy list”…we did this with Peggy…we asked her what her favorite things and activities were, bucket list items, things she missed, movies she loved or had never seen, etc. then we brainstormed as a group to see how we could make these things happen for her in some way…of course, we couldn’t do all of them, but our group had fun with this and got VERY creative…it gave the group something to focus on and helped us to identify simple pleasures and joys and ways they could help (like making sure that she got to listen to her favorite NPR game show every morning).

Please feel free to share these ideas with others and share yours with us as well.

Your suggestions are needed and welcome, please send: MyGroup@sharethecare.org and we’ll share with others.

Stay Safe
Stay Healthy.

Sheila and the STC team

 

 

 

Covid-19 virus: URGENT SUGGESTIONS TO SHARE WITH YOUR STC GROUP

With the arrival of the COVID-19 virus, a dramatic shift has occurred throughout the world that impacts every single one of us. We are not attempting to update you on the latest protocols for avoiding getting infected but rather how your team might look at your individual STC group to see where you need back-up, adjustment or change. The team may need to provide more assistance, less assistance or alter their approach. Remember that if your care recipient is elderly and has a serious condition, they are particularly vulnerable. Assign two members to check the websites for the Centers for Disease Control (CDC), the World Health Organization (WHO), and state and local health authorities on a daily basis to keep everyone up-to-date.

The Share The Care book points out that once you have your team up and running there will come a day when something out of the ordinary is occurring and your group will need to hold a second meeting or at the very least have a team conference call to air feelings, thoughts and to make adjustments (see pages 277-285). This usually is the case when there has been a dramatic change in the patient’s condition but applies now to the changes occurring all around us due to the COVID-19 corona virus (see pages 277-285).

 

Important Suggestions.

 

Prioritize and Be Proactive: Seek additional information or training to keep your loved one or friend as safe as possible by seeking input from an organization with expertise with their challenge. For example: The Alzheimer’s Foundation or the ALS Association or use our STC Resources page. Check with the patient’s doctor or other health professional regarding adjustments that will be needed.

 

Isolate yourself if you have symptoms (fever, sore throat, cough, headache, sneezing, throwing up or diarrhea) Team members will need to provide back up.
Wash your hands, wash your hands, wash your hands.

 

Smaller Inner Team: Think about limiting the number of people who go into the home, and create a Larger Outer Team to provide support to the inner team by: food shopping, cooking, research, walking the dog, and driving others to do errands. The outer team can visit patient online or by phone. See information on Specialist Captains on pages 129-131 in the STC book.

 

Emergency Plan: Make sure it is up-to-date and that everyone has a copy and post on refrigerator door for EMS. Suggestions for what needs to be included can be found on the handout near the bottom of this page. “Create an Emergency Plan” on the STC website www.sharethecare.org (See CAREGIVERS SECTION for STC DOWNLOADS) . Please review “Suggestions for Organizing during the First Weeks” and “STC 7 Principles” handouts as well.

 

Refill Meds before they run out. Shop for items that are quickly disappearing from the shelves…toilet paper, paper towels, soap, basic food items. Keep your team informed of what they should pick up when they see it. Buy frozen fruit and veggies as fresh produce may not come be available. Don’t forget to plan how people will be reimbursed for expenses.

 

Stay Vigilant: If you are supporting someone who lives alone or has no family nearby, please be especially observant, especially if they have any form of dementia or to make sure they are not downplaying any symptoms for COVID-19. Keep in contact and provide family with updates and alert their physician with your concerns.

 

Brainstorm with your group: For sure there are other issues that will require new approaches or information. It would be a good time to review the STC book’s other chapters. Importantly, a brainstorming session would give everyone an opportunity team to voice concerns and jointly determine how to proceed and even uncover experience or expertise that may prove especially helpful. For example, perhaps you worked on a crew that helped your community following a hurricane, fire or tornado and came away with other valuable teamwork lessons. Review the full 7 STC Principles and support each other.

 

Please Share Your Solutions: If ever there was a time to share ideas that could benefit other STC groups…THIS IS IT! Please send ideas, new approaches to: MyGroup@sharethecare.org and include your contact info, group name, patient challenge, and location (state, country)

 

THANK YOU FOR ALL YOUR BEAUTIFUL WORK.

Stay calm, strong and healthy.
Sheila and our STC team

 

 

 

 

STC 2017 End of year Accomplishments and Appeal


Dear Share The Care Supporters,
Recently at an event, a working caregiver stopped by our STC table. Intuitively, I sensed that this particular woman was truly in desperate need of help.  At first she was reluctant to engage in much conversation and was readying herself to walk away.  So I took a chance and looked into her eyes and asked “can I give you a hug?”  It was that hug that blew open the dam. “I’m so overwhelmed.  I’ve been taking care of both my mother and my father for over 15 years.  My sister is of no help.” It was also clear that a lot of time had gone by since anyone had asked her how she was doing or took the time to listen to the enormous responsibilities she was carrying. This tiny demonstration of concern cracked open a door to a discussion with her about self-care, asking for help and how STC works.
Every day the number of caregivers is increasing and they NEED to know about STC. Our grassroots, evidence-informed model continues to prove its effectiveness as a compassionate solution to help caregivers everywhere. It is one of the most rewarding solutions to the caregiving crisis especially since STC gives novice caregivers a way to learn how to be a caregiver in the company of others, many of whom may be veteran caregivers.
We Need Your Support. There are important conferences we need to attend, STC materials to be developed and printed and STC books purchased to send to individuals and organizations that can raise the visibility of our cause.  Funds can help us enlist the services needed to do a webinar, for tech support, and to work on developing collaborations. It is also critical to have funds available when opportunities strike. We have requests for a Spanish and French edition of STC and are seeking publishers in other countries.  Do you know any?
If you have never made a donation to ShareTheCaregiving, Inc. before, please make this the year you start.
If you are part of an STC group, or are helped by one, please reflect on your experience and the value of having a ready-made plan to organize and sustain your group. We need you to TAKE ACTION NOW to back our work generously this year. A meaningful tax-deductible donation of $100, $500 or $1,000 or more would help sustain our efforts.
 
EVERY DOLLAR COUNTS – YOUR GIFTS ARE TAX DEDUCTIBLE
To donate online go to: www.sharethecare.org and click on SUPPORT US. Or if you prefer to send a check, please make it payable to ShareTheCaregiving/NCCI and mail to the address below:
ShareTheCaregiving/NCCI 
Please send us your videos, STC group photos and stories to inspire new groups. Help increase our visibility and “LIKE US” on Facebook: Share The Care™, Twitter: ShareTheCareOrg and Instagram: Sharethecareorg

A heartfelt thank you to all of our supporters!

Warm wishes to you and yours for
A BEAUTIFUL HOLIDAY SEASON. 
 Sheila
Sheila Warnock
Founder & President
hands-divider
STC 2017 Accomplishments

SHARETHECAREGIVING, INC. |  SHARETHECARE.ORG

New York Post seeking STC group helping a cancer patient.

NY Post  Header / Logo

This is to be an article on the people you can surround yourself with to help you with your diagnosis/treatment/recovery. A kind of “it takes a village” look at cancer. It may be something that people end up doing intuitively, but we hope this will help those who need some structure after receiving scary news, or fill in the holes for others. I’ll want to talk to you about your “team,” which may include a doctor network; a bff; a patient advocate (sometimes provided by hospital if you ask); a personal advocate to make and take you to appointments; a chemo buddy; a recovery group.

Requirements: 
Lives in the tri-state area and kicked cancer with the help of a team of friends/advocates/doctors with specific goals/duties
Send to:
Heidi Mitchell, New York Post
Category: Lifestyle and Fitness 

Media Outlet: New York Post

Deadline: 7:00 PM EST – 20 April 


THANK YOU.   Please share with those you think may qualify and be interested.

STC Research Article – Published!

ATTN: Health Professionals  

Share The Care research article from The Journal of Gerontological Social Work

The STC research article has been published online..there are only 50 free downloads – 49 left :-).  After that, the publishing company requires paid membership and/or access through an institution.
Here is the link: http://www.tandfonline.com/eprint/DI7fVP75WGZGyTmPCyzw/full

It will also publish in paper format – we are not sure which issue yet.