National Caregiver Month: How LLS Cares for the Caregiver

November is National Caregiver Month. Caregiving can be a lonely experience. Caregivers often don't feel they should be seeking support for themselves, but the best way to care for a loved one is to care for yourself. There are several ways to reach out to others who are in similar situations or have recently been through a similar experience.

LLS offers a number of helpful resources. For more information about any of the services listed below, contact an LLS Information Specialist.

• Weekly Online Chat for Caregivers. Our live, weekly online chat provide a friendly forum to share experiences and chat with other caregivers. Each chat is moderated by an oncology social worker.
• Patti Robinson Kaufmann First Connection Program. First Connection is a telephone support program that links you with a trained peer volunteer who has experienced a similar situation. Anyone with a blood-related cancer, as well as caregivers, is eligible to receive a call or visit. There is no charge for this program.
• LLS Blood Cancer Discussion Boards. Meet your peers online and share thoughts and experiences on our Blood Cancer Discussion Boards.
• Family Support Groups. LLS's Family Support Group program is open to patients, family members and caregivers. Volunteer nurses and social workers professionally lead the groups. Contact the chapter nearest you to find out about Family Support Groups in your area.

Getting Information:

Caregivers often become the primary "researchers" for disease information and support in an effort to assist the person with cancer and to help him or her better understand the disease, treatment options and side effects.

LLS offers free materials and services designed to simplify this search for information and support. Navigate the Resources for Patients and Caregivers tab at the top of this website for disease information, support and education resources, or contact an LLS Information Specialist.

Never hesitate to contact me directly if you have questions about any of these services or need help getting access to them.  

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Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Did You Know: Information Resource Center

North Texas Deputy Executive Director
Stacey Russell (left) with Executive Director
Patricia Thomson (right).

The Leukemia & Lymphoma Society (LLS) offers a number of support services for blood cancer patients and their families, one of which is the Information Resource Center.  Stacey Russell, the North Texas Deputy Executive Director, recently took advantage of the system and sent the following email out to the North Texas Staff.

"Hi everyone,

If you did not know or have not utilized the Information Resource Center (IRC) yourself, you should!  I called today to ask for assistance in finding out about a new clinical trial option for one of our long time supporters whose husband is battling myeloma.  I started with the IRC because they have an amazing clinical trial search right there online.  I tried navigating the website myself, however, it asks for personal information about the patient for eligibility and I did not have that information.  So I picked up the phone and called the IRC.  I have worked at LLS for 13 years and this is the first time I have ever called this line and I don't know why I waited - it was incredible!  

I spoke with Beatrice at the IRC about a couple clinical trial options.  She didn't have the exact information I needed (start date, application process, etc.) but said she would find out and get back to me.  She did and sent me two emails with two different clinical trial options and an article about more information on immunotherapy for myeloma.  Absolutely amazing!  Part of what we do everyday makes the IRC possible and what if, just what if, it works for them!  Miracles in the making, at least let’s hope!  

Thank you all!

Stacey"

We encourage you to reach out to the IRC if you have questions about any of the following:
- Clinical Trials
- Updated disease information
- Financial matters
- Education materials
- Patient education programs
- LLS discussion boards
- Help communicating with a member of your healthcare team

The IRC is open from 9:00 am - 9:00 pm EST for calls at (800) 955-4572.  If you don't feel like talking on the phone, you can chat online or send an email.  Interpreters are available in 170 different languages.

We encourage you to take advantage of this resource.