The Sharing Networks

Nothing is quite as isolating as serious illness or disability.  No matter how attentive friends and relatives may be, most patients – and especially their family caregivers – express feelings of detachment, confinement, and loneliness.  At times, our friends and family don’t know how to intervene – they care deeply, but don’t want to pry or “bother” us.  Caregivers themselves often become depressed or exhausted by having to answer frequent and repetitive calls for “news” from well-meaning friends.

Patients, caregivers, and their friends long to stay connected. Today, a host of social networking options can help caregivers and their ill loved ones give expression to their daily challenges, help friends understand more fully when and how to be of need, and mobilize support in powerful new ways.

For example:

• CaringBridge, www.caringbridge.org, is a non-profit organization that enables  communications between the individual and family and friends throughout the world for those facing cancer, serious injury or illness, and pregnancy complications.  CaringBridge is a free personalized website that functions much like a blog, allowing caregivers (and patients) to post regular updates (including videos) to family and friends, sparing them the need to repeat themselves time after time.  Those who use CaringBridge find the freedom of expression cathartic:  they can describe the day’s developments; their hopes, fears, and frustrations; and all the highs and lows associated with infirmity.  Each day, over half a million people connect through this channel. CaringBridge is protected by social media privacy protocols:  you must request permission to access an individual’s CaringBridge page from the person who created the site.

Several veterans organizations also use social media to rally support. 

• The Veterans Administration offers a specially adapted housing grant of up to $63,870 for eligible veterans and service members. The nonprofit organization Home for Our Troops, www.homeforourtroops.org, relies upon this grant funding and individual donations to build new homes and modify existing homes for returning disabled vets.   

• The Coming Home Project, www.cominghomeproject.net, is another non-profit organization devoted to providing compassionate expert care, support, education, and stress management tools for Iraq and Afghanistan veterans, service members and their families. Their programs address the psychological, emotional, spiritual and relationship challenges experienced during all stages of deployment, especially reintegration.  It also is a very good resource for other helpful websites.

• Coalition for Iraq and Afghanistan Veterans, www.coalitionforveterans.org,  leads veterans and their family members to various foundations that assist returning veterans.

 

• The Intrepid Fallen Heroes Fund, www.fallenheroesfund.org, is an independent not-for-profit organization that supports the families of military personnel lost in service to our nation, and for severely wounded military personnel and veterans. 

• The Semper Fi Fund, www.semperfifund.org, also a non-profit organization, provides immediate financial support for injured and critically ill members of the US Armed Forces and their families.  They offer adaptive devices/equipment, housing, transportation and career transition services.

• The Fisher House Foundation, www.fisherhouse.org, provides a “home away from home” for military families close to a loved one during hospitalization for illness, disease or injury. 

Online networks also help civilians evaluate their health insurance and coverage limitations.  Most individuals with life-altering injuries must rely upon Medicaid; others will apply for Social Security benefits to help with the exorbitant costs of rehab and day-to-day expenses.  Others may need an attorney to help them sort out best options.  Many states offer online links to assistance, such as:

• TRILC (Three Rivers Independent Living Corporation, www.trilc.org) in Iowa and TRCIL (Three Rivers Center for Independent Living, www.trcil.myfastsite.net) in Pennsylvania.  Both offer non-residential programs to promote independent living skills.  These sites serve as information and referral sources, assist with housing needs, advocacy and peer support.  They help with in-home needs such as hygiene, cleaning and shopping.  They also offer skills training.  

Every state offers different rehabilitation services.  The medical facility’s social worker/discharge planner are valuable members of the “going-home” team and can assist families in identifying and initiating such resources.

What online resources can you recommend to others in need?